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• Published: 10 November 2023

Evaluation of experiences of the patients discharged from the COVID-19 intensive care unit: a qualitative research

• Serap Torun 1 ,
• Esra Bulmuş 2 &
• Osman Bilgin 1  

Scientific Reports volume  13 , Article number:  19577 ( 2023 ) Cite this article

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• Health care
• Infectious diseases

Making arrangements by learning how intensive care patients feel due to a disease called as fatal worldwide can make it easier for patients to cope with the disease. For this reason, it is important for healthcare professionals to understand the patients who have been infected and discharged during the COVID-19 pandemic. The experiences of the patients may affect the perspective of the disease and cause different changes in the perception of it. This study, which was conducted based on this idea, aimed to examine the intensive care experiences of patients discharged from the COVID-19 intensive care unit. This study used a phenomenological qualitative approach. A semi-structured interview form was used to interview 23 patients discharged from the COVID-19 intensive care unit. The findings were reported on the basis of consolidated criteria for reporting qualitative research. In line with the data obtained from the interviews, five main themes and eight subthemes were created. The main themes were classified as emotional expressions (positive/negative) related to intensive care experience, coping methods, analogies (for COVID-19 and nurses) and attitudes towards the care provided (respiration, nutrition, excretion and privacy, sleep, communication). In this study, the participants experienced negative emotions such as fear of death/anxiety, sadness, loneliness, and helplessness during their intensive care experiences. Most of them stated that they tried to cope with prayer and communication. The participants compared COVID-19with deadly and respiratory-inhibiting tools and diseases. They expressed difficulties in breathing, nutrition, excretion and privacy, sleep and communication related to the care provided. In this process, they made positive analogies for the nurses who spent the most time with them, such as angels and family members.

The World Health Organization (WHO) considered COVID-19, which affected 210 countries, to be a public health problem by describing it as a pandemic 1 , 2 . While COVID-19 was spreading at an extraordinary rate, it caused severe panic and anxiety in humans with a high morbidity and mortality rate 2 . To correct this, public policies such as social distancing, isolation and self-quarantine have been implemented worldwide. These compulsory changes in daily life have created psychological effects such as deep fear/anxiety in individuals 3 . Arrangements have been made for manpower and physical environments in the health sector to prevent the worldwide spread of the disease and to provide treatment and control 4 . Apart from preventive measures, arrangements were made to care for patients diagnosed with COVID-19 in Turkey, the bed capacities of hospitals were increased, all elective surgeries were postponed, and the distribution of nurses throughout the hospital was regulated. Some units have been arranged to serve only COVID-19 patients, and additional intensive care units have been opened 5 .

Intensive care units are clinics where more advanced technology is used, intensive drug therapy as well as close monitoring and care practices are applied in order for individuals with impaired vital functions to maintain their normal vital functions 6 . COVID-19 has heterogeneous clinical symptoms such as fever, cough, dyspnea, muscle pain and fatigue. Patients, who develop acute kidney injury and multiple organ failure, especially severe acute respiratory failure due to pulmonary involvement in COVID-19 patients, should be admitted to the intensive care unit 7 .

COVID-19 causes psychosocial problems besides physiological disorders in patients. According to the literature, as the length of stay in the intensive care unit increases, patients experience severe psychosocial health problems, posttraumatic stress disorder, depression, anxiety disorders and cognitive disorders 8 , 9 , 10 . The risk of transmission of the disease has affected the attitudes of healthcare professionals towards patients. The use of protective equipment has caused patients to have communication problems. Patients neither could not see the face of the person providing health care nor could make a professional distinction. Due to the pandemic, compulsory professional regulations have also been a factor in anxiety and stress in nurses. This is thought to affect patient care and therefore patient outcomes 11 .

Making arrangements by learning how intensive care patients feel due to a disease called as fatal worldwide can make it easier for patients to cope with the disease. For this reason, it is important for healthcare professionals to understand the patients who have been infected and discharged during the COVID-19 pandemic. The experiences of the patients may affect the perspective of the disease and cause different changes in the perception of it. As a matter of fact, studies have shown that Covid-19 causes patients to experience feelings such as "pain, exhaustion, hopelessness, helplessness, fear of death" 12 , 13 . This study, which was conducted based on this idea, aimed to examine the intensive care experiences of patients discharged from the COVID-19 intensive care unit.

Materials and methods

Research model.

This is a qualitative phenomenological study.

Research sample

The study was conducted in the COVID-19 intensive care unit of a City Training and Research Hospital in Turkey. The population of the study consisted of 159 patients discharged from the COVID-19 Intensive Care Unit. Purposive sampling was used in the research. The study included patients who were discharged from the COVID-19 intensive care unit between March 1, 2021 and July 31, 2022 and who agreed to participate in the study. Data saturation was dynamically determined by analysis after each interview and the study was terminated as sufficient data saturation was achieved after the 23 interviews.

Research team

All of the investigators were RNs. A researcher who holds the title of associate professor in the field of nursing has qualitative and quantitative studies on the ethical dimensions of patient cases. The other researcher, who is continuing her doctoral education in the field of nursing, has received training and conducted studies on qualitative studies. The other researcher, who is in direct contact with the patients, has been a nurse in the intensive care unit for many years.

Data collection

The research data were collected by the all researchers between May 20 and August 31, 2022. After the patients were discharged from the intensive care unit, an average of 6 months passed until the interview report was written. While collecting the research data, twelve questions, including the sociodemographic characteristics created by the researchers and five questions in the semi-structured information form, were transferred to the interviewees, and their answers/statements were recorded by voice recording in the interview. After the preliminary information, the participants who wanted to participate were interviewed on the phone and one participant was interviewed face-to-face upon his request and the interview was recorded. At the beginning of the interview, the researcher informed the participants that their interview would be recorded and used only to collect data in the research. The participants were informed that they could have a break during the interview or withdraw from it at any time. After reading the prepared informed consent text, asking whether they wanted to continue the interview or not, and obtaining their consent, audio recording was taken. No one took part in the interviews except for the researcher and interviewer. The average duration of the interview with each participant was 20 min. To examine how patients discharged from the COVID-19 intensive care unit evaluated their intensive care experience, answers to the following questions were sought:

Question 1: What feelings did you have during your stay in the COVID-19 intensive care unit?

Question 2: How did you cope with the situations and feelings that worried/frightened you in the COVID-19 intensive care unit?

Question 3: If you were to compare COVID-19 with an object, what would this object be?

Question 4: What would you like to say about the care provided to you in the COVID-19 intensive care unit?

Question 5: If you were to describe the nurses who cared for you during this process, what would you liken to them?

Data analysis

After the interviews with the participants were completed, the audio recordings were transferred to the computer in written text by the researchers. The inductive thematic analysis method was applied in the analysis of the data. Each interview text was read by three researchers and content analysis was conducted. Thematic coding was done by coding each statement that was deemed meaningful. The main themes and subthemes were determined with the common opinion of the researchers. While transferring qualitative data, reliability was increased by quoting the interviews one-to-one. P1-P23 codes were used for the interviewees.

Research ethics

To conduct the research, necessary permissions were obtained from the Ethics Committee of Non-Interventional Clinical Research (Decision no.122/53 dated May 22, 2022), the Provincial Health Directorate and the hospital. Verbal informed consent was obtained from the participants. The study was conducted in accordance with the principles of the Declaration of Helsinki.

In the study, the mean age of the participants discharged from the COVID-19 intensive care unit was 48.86 (min:30, max:65), and 13 of them were male. The duration of the participants’ stay in the intensive care unit varied between two and 49 days. Twelve of the participants were literate and two had an undergraduate degree. Eight patients worked, 15lived in the province and three lived in the village. Eleven patients stated that they had a chronic disease. Seven participants could not see their relatives during their hospitalization in the intensive care unit, while the others had the opportunity to see their relatives from a distance or from the glass partition by taking protective measures. Seven participants did not see their relatives during their stay in the intensive care unit (Table 1 ). The codes, main themes and subthemes obtained from the participants’ expressions regarding their experiences in the intensive care process are given in Table 2 .

Theme 1. Emotional expressions regarding the COVID-19 intensive care experience

This theme is divided into two subthemes: positive and negative expressions. Four interviewees provided positive expressions about the intensive care experience. Most interviewees stated that they experienced negative feelings and had concerns. Twelve participants stated that they had a direct fear of death. Three interviewees, who had been pregnant during the disease and had just given birth, expressed their concerns about their babies. Two interviewees stated that they were afraid, but staying in the hospital for a long time was the reason for fear. Examples of the participants’ statements are given in Table 3 and there are examples of statements that are excluded in the table below (Table 3 ).

Subtheme 1.1 Positive statements

“At that moment, I felt that I would be saved. I felt no fear because of the compassion that nurses and caregivers showed me…” (P3). “The support of my husband, doctors and nurses was good…” (P13)

Subtheme 1.2 Negative statements

I was scared, I was so scared. I felt guilty, emptiness. I was afraid that I would stay for a long time…" (P10) “I was expecting twins. My pregnancy made the fear that something would happen to me and my babies. I felt my muscles melting. Even if I did not lose my babies, the X-rays and the drugs I was taking made me worried that it would hurt them. Their motions made me feel as if they were saying, “We are hungry, mom…”(P23).

Theme 2. Coping methods

The participants were asked about how they coped with the situations and emotions that worried/frightened them during the intensive care process. They stated that they coped with the negative emotions they experienced in the intensive care by constantly praying, with the support of healthcare professionals, the wish to meet their families and listening to the radio. Two participants reported that they could not cope with the negative emotions they experienced during their stay in the intensive care (Table 3 ). Some of the participants’ statements are as follows:

“I dealt with it by taking refuge in Allah most. You are overcome everything with Him…" (P18) “I met my family for 10–15 s. That is how I handled it. Otherwise, I would have gone mad…” (P22)

Theme 3. Analogies

This theme is divided into two sub-themes: "Analogies for Covid-19" and "Analogies for nurses". The meanings attributed to beings, objects and situations and the feelings felt toward them can be expressed by symbolization or analogy.

Subtheme 3.1. Analogies for Covid-19

For COVID-19, participants made analogies such as "death", "flu", and "monster". Two participants could not compare the disease to anything and one participant expressed it as "a very bad thing" (Table 3 ). Some analogies made by the participants regarding their disease and symptoms are given below.

"You go into the sea, you dive into the water and can’t breathe… It is a kind of such an atmosphere. It will pull you down. You will be crippled by the bends. It is like a whirlpool…” (P11) It is like a monster. A monster that takes everyone away…” (P18)

Subtheme 3.2. Analogies for nurses

Participants made similar and sometimes different definitions for nurses, focusing on their self-care status. Participants mostly simulated an "angel" for nurses. The majority were positive analogies, and two were described as "beings in hell" (Table 3 ). Some of the participants' statements are as follows:

"Nurses tried to save our lives by ignoring their own lives…”(P6) "Nurses do not say anything offensive. They cheer you…” (P9) “You are welcomed with the service and attention you do not have in your home…” (P15)

Theme 4. Attitudes towards the care provided

The evaluations of individuals can contribute to the effectiveness and regulation of the services they receive. In this theme, most participants stated that they were "satisfied" with the care services offered to them. In this theme, there was a need to determine a subtheme and Maslow's hierarchy of human needs was taken into account when determining subthemes (Table 3 ). The subthemes and sample expressions created for this theme are given below.

Respiration

Seventeen participants stated that they had respiratory distress, 10 of them had difficulty breathing, and seven expressed their respiratory distress in their analogies of COVID-19. Five patients with respiratory distress were followed up with a continuous positive airway pressure (CPAP) mask. Three of these five patients stated that they did not want to take CPAP and two stated that wearing a CPAP mask relieved them. Some of the participants' statements are as follows:

“The nurse put me in a machine to expand my lungs (CPAP mask). This machine is locking down. I could not cough on that machine and I was so clogged. When I could not, I was suffocating cough in that machine…” (P13). “They put me in a machine, a big headgear (CPAP mask). I had not been able to sleep for 14 days, I slept for two days in that mask. The mask comforted me like I was born of my mother. They putt hat mask until I was back to normal. “Daughter, put on a helmet,” I would say. They would put it on, then they would take it off…” (P14).

Most participants stated that they had problems with nutrition. Some of the participants' statements are as follows:

“Since I could not eat, the nurses fed me with a syringe…” (P11) “My nurse even made me eat. He brought something and prepared it with his own hands…”(P23) Excretion and privacy

In the case of being cared, 16 of the participants expressed their problems in terms of excretion and privacy. Of the participants, 12 expressed that they were embarrassed/hesitant when changing their sheets and diapers, 11 were uncomfortable unclothed, and nine had difficulty using diapers and were not able to go to the toilet. Some of the participants' statements are as follows:

“I did not know there was such a thing on earth until then. I was amazed by what you did when we were lazy to change our own child's diapers. A man changes a woman's diaper, a woman changes a man's diaper, and they do not make you feel it. I always say that this is not a job to be done with money…” (P10). “I was so embarrassed when I changed my sheets and diapers. I say, “My consciousness is clear; I cannot accept it, why are you wearing diapers on me? ”Oh, my God, they stripped it, they put it in the machine.” (P17). “According to the intensive care conditions, nothing should be worn. The room makes you feel bad. I wish something could be arranged for the patients. I think that patients who are conscious can feel better then…”(P23).

Eight participants stated that they experienced insomnia problems in the intensive care. One participant stated that the CPAP mask facilitated his/her sleep. Some of the participants' statements are as follows:

“I'm about to go to sleep, they come at night and take X-rays…” (P6) “Sometimes there could be an excessive noise. The laughs and speeches of the nurses could create noise…” (P21)

Communication

Most participants stated that the approaches of healthcare professionals positively affected them. Fourteen participants emphasized the importance of communication support of their relatives and healthcare professionals in coping with the negative emotions they experienced. Some of the participants' statements are as follows:

“Nurses and doctors showed a lot of interest. I have seen a lot of attention. The nurses treated me like a human being. The nurses comforted me by saying that I am the most comfortable patient here…”(P4). “I was relieved when the nurse showed me the video of my husband’s well-being. When I talked to my niece on the phone, I was relieved to hear their voices…” (P18)

In this study, the positive experiences of the participants regarding the intensive care unit were mostly focused on the interest shown to them. Negative statements and experiences were mostly determined to be respiratory distress, fear of death, nutritional distress and insomnia. Studies have shown similar results to the results of this study. Respiratory distress caused by COVID-19 can affect psychotic conditions that may develop in the patient and trigger death anxiety 14 , 15 . In their study, Zaybak et al. 16 found that among the intensive care stressors experienced by patients, the primary ones were "pain", "fear of death" and "hearing the sounds that indicate heart problems from heart monitoring". Hintistan et al. 17 found that intensive care patients had many bad experiences. Disease is a bad experience in itself. In addition to this experience, a sense of helplessness can accompany it. The intensive care unit, which is equipped with devices that make complex and strange noises, does not allow sunlight to enter and you can see every movement, which can cause anxiety. Poor experiences in an intensive care setting can only be minimized by the quality of care provided to patients.

In this study, the participants stated that they coped with the negative emotions they experienced during the intensive care process with the support of healthcare professionals and their families. These results are consistent with the literature. Sahoo et al. (2020) stated in their qualitative study that a patient tried to reduce his anxiety and concerns by praying 18 . In a study, people who experienced COVID-19 turned to religion as a coping strategy 19 . In a study on religiosity during the pandemic, there was a 50% increase in Google searches on prayer-related issues compared to before the COVID-19 pandemic 20 .

Belief systems are the most frequently used method in the fight against disease as well as many problems. Spiritual care strengthens the immune system and enables patients to cope with stress and shorten the disease process 1 . Situations encountered by the patients and determination of the methods of coping with the disease can be determinant in the support and service systems to be offered to the patients. Psychological support, drug support and spiritual support for those who request them are primary ones that come to mind in this sense.

There may be some situations that are difficult to explain in daily life. In these cases, thoughts can be expressed more easily by comparing one concept to another 21 . Therefore, in this study, participants were asked to make a metaphor to describe COVID-19 and nurses.

For COVID-19, the participants used analogies such as "flu", "monster", "a stopper in the liver", "wolf in me", "tornado", "death", "haul", "Grim Reaper", and "bag in the head". As can be understood from these analogies, the worst experience of COVID-19 patients is not to be able to breathe.

The participants were asked to make an analogy to better understand what they thought about the nurses who spent the most time with them during their stay in intensive care units. As a result, the participants made analogies such as "angel", "family member" and "ladybug" for the nurses. One participant stated negatively with the definition of "sergeant" and the other with the definition of "being in hell". Positive descriptions are often heard in simulations in daily life. In the studies conducted, nurses mostly described themselves as "mothers", "superhero", and "saviors" 22 , 23 . Negative descriptions may be due to a disruption or nonfulfillment of something desired.

Individual evaluations are made with the effect of emotional states or reactive approaches that occur in instant situations. In fact, both negative analogies belong to the participants who have experienced intense physical restraint and panic attacks. Some participants stated that nurses sometimes respond late to patient requests. This may be associated with the nurses' workload, lack of staff due to the pandemic and problems with time. There are studies showing that nurses who care for intensive care patients are worried about getting sick or being a carrier and have dilemmas about their practices in intensive care units 24 , 25 , 26 , 27 . The problems experienced by nurses can also negatively affect nursing care. For this reason, the psychosocial health of nurses should be assessed and hospital management should provide support systems.

Considering the participants’ experiences on the care provided, the titles of respiration, nutrition, excretion and privacy, sleep and communication come to the fore. Swallowing and respiratory distress cause malnutrition in COVID-19. Stopping oral intake during treatment may cause malnutrition. Malnutrition, which affects mortality and morbidity rates, is seen in between 30 and 40% of intensive care patients 28 , 29 , 30 . A participant stated that he/she lost 25 kg in this study, which supports this situation. Sixteen participants stated that they had problems with nutrition for different reasons. It has already been demonstrated that malnutrition delays healing times and increases hospitalization periods. Therefore, the prevention, diagnosis, and treatment of malnutrition must be regularly included in the management of hospitalized COVID-19 patients in a rehabilitation department, to improve both short and long-term prognosis 31 , 32 . Studies clearly show that people have problems with nutrition, whether they are diagnosed with COVID-19 or not 33 , 34 , 35 .

In the present study, the participants stated that they were ashamed of having their clothes removed during the diaper change and due to their presence in the intensive care unit. Intensive care patients may not be able to protect their privacy for cognitive and physical reasons. It is the moral responsibility of healthcare professionals to protect the privacy of these patients. Health professionals should behave in the best interests of patients who cannot make decisions about privacy. If the patient's privacy is given due attention, the negative effects of the stressor on the disease can be reduced by eliminating the patient's concerns 36 .

Sleep quality is important for maintaining a healthy life and cell regeneration and shortening the duration of the disease due to its recovery. Insomnia directly affects the prognosis of the disease 37 . Normal sleep patterns and habits of the individual change completely in the intensive care. Intensive care units are clinics where a healthy sleep rhythm cannot be achieved due to their physical structure as well as routine and emergency applications to patients. In addition to arranging the environment to allow patients to sleep, meeting the habits of individuals even at a minimum level (for example, wearing a thin hospital shirt or underwear) can facilitate falling asleep. A participant said, “As per the intensive care conditions, you should not wear anything. The room makes you feel bad. I wish something could be arranged for the patients. I think that patients who are conscious can feel better then…”(P23) . Tanrıkulu et al. (2022) reported that a patient expressed insomnia problems in a case they examined 38 .

Communication in intensive care is one of the most basic nursing skills. Patients with intubation or tracheostomy have difficulty in communication. Communication problems can cause stress, fear and panic in patients. Trust-based communication with the patient can help reduce the patient's anxiety, confusion, and anxiety. Studies have shown that nurses do not communicate adequately with unconscious patients 39 , 40 , 41 . In a study, Ashworth showed that nurses lacked conveying subjects such as time, day and date, which are the simplest examples of communication, to patients 42 . In this study, patients stated that nurses communicated with them and mostly used positive expressions to cheer them up. This difference shows that the holistic approach in the nursing profession has reached a preferable level. Some of the participants stated that they were concerned about their relatives. Seven participants stated that they could not see their relatives during the period when they were hospitalized in the intensive care unit, while the others stated that they had the opportunity to see their relatives from a distance or from the glass partition by taking protective measures. Those who saw their relatives stated that their negative emotions decreased and their strength to fight against the intensive care environment increased. In general, there have been visitor restrictions in many clinics and intensive care units to reduce the risk of transmission of COVID-19. In a study, communication through phone and video calls was approved due to patient and visitor restrictions during the COVID-19 pandemic 43 . It is important to provide family-centered holistic care to accelerate the recovery of patients 44 . Being able to see their relatives for a few minutes or hear their voices can eliminate the feeling of loneliness that can reduce the patients’ anxiety. Therefore, it is useful to review the visit and interview procedures in the intensive care unit. Although individualized practices are on the agenda, the principle of justice should be applied in patient visits as in every area and every patient should have the right to be visited. On the other side, visiting a patient hospitalized in the intensive care unit can be unsettling and frightening for the relatives of the patient due to the risk of transmission. However, it should not be forgotten that the relatives of the patient take the risk of visiting despite all kinds of risks due to the fear of losing the patient without seeing or even touching him/her for the last time. Restrictions set for protection may cause lifelong regrets. In fact, the positive statements of the participants who were visited confirm this idea.

Limitations

In this study, we interviewed patients discharged from the COVID-19 intensive care unit. However, there are some limitations to this study as well. The results cannot be generalized since the study was conducted in a single region. Another limitation is that we asked the patients about their past experiences after they were discharged. Retrospective assessment may not be 100% accurate as time intervenes. There is also a limitation in this manuscript with the degree of depth that has been reached in the analysis that has been merely descriptive.

Results and recommendations

As a result, the participants of the present study experienced negative emotions such as fear of death/anxiety, sadness, loneliness, and helplessness during their intensive care stay. They mostly stated that they tried to cope with it through prayer and communication. They likened COVID-19 with deadly and respiratory-inhibiting tools and diseases. In this process, they made positive analogies (such as angels and family members) about the nurses who spent the most time with them. The participants stated that they had difficulties in breathing, nutritional discharge and privacy, sleep and communication related to the care provided.

In line with these results, it is possible to say from the statements of the participants that the recipient of the service in the intensive care experienced a more troublesome and difficult process than the service provider. For this reason, intensive care workers should consider the physiological and psychosocial needs of patients and provide in-service trainings for institutions on this subject.

Data availability

The data sets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

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The authors thank all the nurses who participated in the study.

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Torun, S., Bulmuş, E. & Bilgin, O. Evaluation of experiences of the patients discharged from the COVID-19 intensive care unit: a qualitative research. Sci Rep 13 , 19577 (2023). https://doi.org/10.1038/s41598-023-46818-1

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• Published: 08 November 2023

Facilitators and Barriers of Implementing an Evidence-Based Practice in a Rural Community Setting: A Qualitative Case Study

• Jennifer Smith Ramey   ORCID: orcid.org/0000-0002-6311-932X 1 ,
• Fred Volk 2 &
• Fred Milacci 2  

Global Implementation Research and Applications ( 2023 ) Cite this article

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In the past two decades, multiple federal and state funding initiatives in the United States have been established for empirically supported treatments addressing individuals receiving services in the public behavioral health system. However, many organizations struggle to implement evidence-based practices in community settings. The present study aimed to extend our understanding of implementation facilitators and barriers for an evidence-based practice in a community behavioral health agency. This qualitative case study examined the implementation of an evidence-based treatment, Illness Management Recovery (IMR), in a rural community setting from the perspective of the clinical supervisors, project managers, and clinicians. Eight semi-structured interviews were conducted with individuals involved in implementing IMR to explore their understanding of project implementation facilitators and barriers. Thematic analyses revealed three themes describing facilitators and barriers, including matching personal values and job opportunities, the impact of multiple roles, and the challenges of gaining and maintaining buy-in. These findings inform agency administrators, funders, and project directors in project staff recruitment and retention, carefully considering multiple role synergies and challenges, and developing and maintaining organization champions and advocates when implementing IMR in community settings. Implications for practice include staff recruitment methods that identify values and job opportunity match, purposeful resource allocation, and employee motivational strategies.

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Yin, R. (1984). Case study research . Sage Publications.

Yin, R. K. (2014). Case study research design and methods (5th ed.). Sage Publications.

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This work was supported by the United States Health Resources Services Administration funding (1 D04RH40258‐01‐00).

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Ramey, J.S., Volk, F. & Milacci, F. Facilitators and Barriers of Implementing an Evidence-Based Practice in a Rural Community Setting: A Qualitative Case Study. Glob Implement Res Appl (2023). https://doi.org/10.1007/s43477-023-00105-3

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The case study approach

• Sarah Crowe 1 ,
• Kathrin Cresswell 2 ,
• Ann Robertson 2 ,
• Guro Huby 3 ,
• Anthony Avery 1 &
• Aziz Sheikh 2  

BMC Medical Research Methodology volume  11 , Article number:  100 ( 2011 ) Cite this article

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The case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. Based on our experiences of conducting several health-related case studies, we reflect on the different types of case study design, the specific research questions this approach can help answer, the data sources that tend to be used, and the particular advantages and disadvantages of employing this methodological approach. The paper concludes with key pointers to aid those designing and appraising proposals for conducting case study research, and a checklist to help readers assess the quality of case study reports.

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Introduction

The case study approach is particularly useful to employ when there is a need to obtain an in-depth appreciation of an issue, event or phenomenon of interest, in its natural real-life context. Our aim in writing this piece is to provide insights into when to consider employing this approach and an overview of key methodological considerations in relation to the design, planning, analysis, interpretation and reporting of case studies.

The illustrative 'grand round', 'case report' and 'case series' have a long tradition in clinical practice and research. Presenting detailed critiques, typically of one or more patients, aims to provide insights into aspects of the clinical case and, in doing so, illustrate broader lessons that may be learnt. In research, the conceptually-related case study approach can be used, for example, to describe in detail a patient's episode of care, explore professional attitudes to and experiences of a new policy initiative or service development or more generally to 'investigate contemporary phenomena within its real-life context' [ 1 ]. Based on our experiences of conducting a range of case studies, we reflect on when to consider using this approach, discuss the key steps involved and illustrate, with examples, some of the practical challenges of attaining an in-depth understanding of a 'case' as an integrated whole. In keeping with previously published work, we acknowledge the importance of theory to underpin the design, selection, conduct and interpretation of case studies[ 2 ]. In so doing, we make passing reference to the different epistemological approaches used in case study research by key theoreticians and methodologists in this field of enquiry.

This paper is structured around the following main questions: What is a case study? What are case studies used for? How are case studies conducted? What are the potential pitfalls and how can these be avoided? We draw in particular on four of our own recently published examples of case studies (see Tables 1 , 2 , 3 and 4 ) and those of others to illustrate our discussion[ 3 – 7 ].

What is a case study?

A case study is a research approach that is used to generate an in-depth, multi-faceted understanding of a complex issue in its real-life context. It is an established research design that is used extensively in a wide variety of disciplines, particularly in the social sciences. A case study can be defined in a variety of ways (Table 5 ), the central tenet being the need to explore an event or phenomenon in depth and in its natural context. It is for this reason sometimes referred to as a "naturalistic" design; this is in contrast to an "experimental" design (such as a randomised controlled trial) in which the investigator seeks to exert control over and manipulate the variable(s) of interest.

Stake's work has been particularly influential in defining the case study approach to scientific enquiry. He has helpfully characterised three main types of case study: intrinsic , instrumental and collective [ 8 ]. An intrinsic case study is typically undertaken to learn about a unique phenomenon. The researcher should define the uniqueness of the phenomenon, which distinguishes it from all others. In contrast, the instrumental case study uses a particular case (some of which may be better than others) to gain a broader appreciation of an issue or phenomenon. The collective case study involves studying multiple cases simultaneously or sequentially in an attempt to generate a still broader appreciation of a particular issue.

These are however not necessarily mutually exclusive categories. In the first of our examples (Table 1 ), we undertook an intrinsic case study to investigate the issue of recruitment of minority ethnic people into the specific context of asthma research studies, but it developed into a instrumental case study through seeking to understand the issue of recruitment of these marginalised populations more generally, generating a number of the findings that are potentially transferable to other disease contexts[ 3 ]. In contrast, the other three examples (see Tables 2 , 3 and 4 ) employed collective case study designs to study the introduction of workforce reconfiguration in primary care, the implementation of electronic health records into hospitals, and to understand the ways in which healthcare students learn about patient safety considerations[ 4 – 6 ]. Although our study focusing on the introduction of General Practitioners with Specialist Interests (Table 2 ) was explicitly collective in design (four contrasting primary care organisations were studied), is was also instrumental in that this particular professional group was studied as an exemplar of the more general phenomenon of workforce redesign[ 4 ].

What are case studies used for?

According to Yin, case studies can be used to explain, describe or explore events or phenomena in the everyday contexts in which they occur[ 1 ]. These can, for example, help to understand and explain causal links and pathways resulting from a new policy initiative or service development (see Tables 2 and 3 , for example)[ 1 ]. In contrast to experimental designs, which seek to test a specific hypothesis through deliberately manipulating the environment (like, for example, in a randomised controlled trial giving a new drug to randomly selected individuals and then comparing outcomes with controls),[ 9 ] the case study approach lends itself well to capturing information on more explanatory ' how ', 'what' and ' why ' questions, such as ' how is the intervention being implemented and received on the ground?'. The case study approach can offer additional insights into what gaps exist in its delivery or why one implementation strategy might be chosen over another. This in turn can help develop or refine theory, as shown in our study of the teaching of patient safety in undergraduate curricula (Table 4 )[ 6 , 10 ]. Key questions to consider when selecting the most appropriate study design are whether it is desirable or indeed possible to undertake a formal experimental investigation in which individuals and/or organisations are allocated to an intervention or control arm? Or whether the wish is to obtain a more naturalistic understanding of an issue? The former is ideally studied using a controlled experimental design, whereas the latter is more appropriately studied using a case study design.

Case studies may be approached in different ways depending on the epistemological standpoint of the researcher, that is, whether they take a critical (questioning one's own and others' assumptions), interpretivist (trying to understand individual and shared social meanings) or positivist approach (orientating towards the criteria of natural sciences, such as focusing on generalisability considerations) (Table 6 ). Whilst such a schema can be conceptually helpful, it may be appropriate to draw on more than one approach in any case study, particularly in the context of conducting health services research. Doolin has, for example, noted that in the context of undertaking interpretative case studies, researchers can usefully draw on a critical, reflective perspective which seeks to take into account the wider social and political environment that has shaped the case[ 11 ].

How are case studies conducted?

Here, we focus on the main stages of research activity when planning and undertaking a case study; the crucial stages are: defining the case; selecting the case(s); collecting and analysing the data; interpreting data; and reporting the findings.

Defining the case

Carefully formulated research question(s), informed by the existing literature and a prior appreciation of the theoretical issues and setting(s), are all important in appropriately and succinctly defining the case[ 8 , 12 ]. Crucially, each case should have a pre-defined boundary which clarifies the nature and time period covered by the case study (i.e. its scope, beginning and end), the relevant social group, organisation or geographical area of interest to the investigator, the types of evidence to be collected, and the priorities for data collection and analysis (see Table 7 )[ 1 ]. A theory driven approach to defining the case may help generate knowledge that is potentially transferable to a range of clinical contexts and behaviours; using theory is also likely to result in a more informed appreciation of, for example, how and why interventions have succeeded or failed[ 13 ].

For example, in our evaluation of the introduction of electronic health records in English hospitals (Table 3 ), we defined our cases as the NHS Trusts that were receiving the new technology[ 5 ]. Our focus was on how the technology was being implemented. However, if the primary research interest had been on the social and organisational dimensions of implementation, we might have defined our case differently as a grouping of healthcare professionals (e.g. doctors and/or nurses). The precise beginning and end of the case may however prove difficult to define. Pursuing this same example, when does the process of implementation and adoption of an electronic health record system really begin or end? Such judgements will inevitably be influenced by a range of factors, including the research question, theory of interest, the scope and richness of the gathered data and the resources available to the research team.

Selecting the case(s)

The decision on how to select the case(s) to study is a very important one that merits some reflection. In an intrinsic case study, the case is selected on its own merits[ 8 ]. The case is selected not because it is representative of other cases, but because of its uniqueness, which is of genuine interest to the researchers. This was, for example, the case in our study of the recruitment of minority ethnic participants into asthma research (Table 1 ) as our earlier work had demonstrated the marginalisation of minority ethnic people with asthma, despite evidence of disproportionate asthma morbidity[ 14 , 15 ]. In another example of an intrinsic case study, Hellstrom et al.[ 16 ] studied an elderly married couple living with dementia to explore how dementia had impacted on their understanding of home, their everyday life and their relationships.

For an instrumental case study, selecting a "typical" case can work well[ 8 ]. In contrast to the intrinsic case study, the particular case which is chosen is of less importance than selecting a case that allows the researcher to investigate an issue or phenomenon. For example, in order to gain an understanding of doctors' responses to health policy initiatives, Som undertook an instrumental case study interviewing clinicians who had a range of responsibilities for clinical governance in one NHS acute hospital trust[ 17 ]. Sampling a "deviant" or "atypical" case may however prove even more informative, potentially enabling the researcher to identify causal processes, generate hypotheses and develop theory.

In collective or multiple case studies, a number of cases are carefully selected. This offers the advantage of allowing comparisons to be made across several cases and/or replication. Choosing a "typical" case may enable the findings to be generalised to theory (i.e. analytical generalisation) or to test theory by replicating the findings in a second or even a third case (i.e. replication logic)[ 1 ]. Yin suggests two or three literal replications (i.e. predicting similar results) if the theory is straightforward and five or more if the theory is more subtle. However, critics might argue that selecting 'cases' in this way is insufficiently reflexive and ill-suited to the complexities of contemporary healthcare organisations.

The selected case study site(s) should allow the research team access to the group of individuals, the organisation, the processes or whatever else constitutes the chosen unit of analysis for the study. Access is therefore a central consideration; the researcher needs to come to know the case study site(s) well and to work cooperatively with them. Selected cases need to be not only interesting but also hospitable to the inquiry [ 8 ] if they are to be informative and answer the research question(s). Case study sites may also be pre-selected for the researcher, with decisions being influenced by key stakeholders. For example, our selection of case study sites in the evaluation of the implementation and adoption of electronic health record systems (see Table 3 ) was heavily influenced by NHS Connecting for Health, the government agency that was responsible for overseeing the National Programme for Information Technology (NPfIT)[ 5 ]. This prominent stakeholder had already selected the NHS sites (through a competitive bidding process) to be early adopters of the electronic health record systems and had negotiated contracts that detailed the deployment timelines.

It is also important to consider in advance the likely burden and risks associated with participation for those who (or the site(s) which) comprise the case study. Of particular importance is the obligation for the researcher to think through the ethical implications of the study (e.g. the risk of inadvertently breaching anonymity or confidentiality) and to ensure that potential participants/participating sites are provided with sufficient information to make an informed choice about joining the study. The outcome of providing this information might be that the emotive burden associated with participation, or the organisational disruption associated with supporting the fieldwork, is considered so high that the individuals or sites decide against participation.

In our example of evaluating implementations of electronic health record systems, given the restricted number of early adopter sites available to us, we sought purposively to select a diverse range of implementation cases among those that were available[ 5 ]. We chose a mixture of teaching, non-teaching and Foundation Trust hospitals, and examples of each of the three electronic health record systems procured centrally by the NPfIT. At one recruited site, it quickly became apparent that access was problematic because of competing demands on that organisation. Recognising the importance of full access and co-operative working for generating rich data, the research team decided not to pursue work at that site and instead to focus on other recruited sites.

Collecting the data

In order to develop a thorough understanding of the case, the case study approach usually involves the collection of multiple sources of evidence, using a range of quantitative (e.g. questionnaires, audits and analysis of routinely collected healthcare data) and more commonly qualitative techniques (e.g. interviews, focus groups and observations). The use of multiple sources of data (data triangulation) has been advocated as a way of increasing the internal validity of a study (i.e. the extent to which the method is appropriate to answer the research question)[ 8 , 18 – 21 ]. An underlying assumption is that data collected in different ways should lead to similar conclusions, and approaching the same issue from different angles can help develop a holistic picture of the phenomenon (Table 2 )[ 4 ].

Brazier and colleagues used a mixed-methods case study approach to investigate the impact of a cancer care programme[ 22 ]. Here, quantitative measures were collected with questionnaires before, and five months after, the start of the intervention which did not yield any statistically significant results. Qualitative interviews with patients however helped provide an insight into potentially beneficial process-related aspects of the programme, such as greater, perceived patient involvement in care. The authors reported how this case study approach provided a number of contextual factors likely to influence the effectiveness of the intervention and which were not likely to have been obtained from quantitative methods alone.

In collective or multiple case studies, data collection needs to be flexible enough to allow a detailed description of each individual case to be developed (e.g. the nature of different cancer care programmes), before considering the emerging similarities and differences in cross-case comparisons (e.g. to explore why one programme is more effective than another). It is important that data sources from different cases are, where possible, broadly comparable for this purpose even though they may vary in nature and depth.

Analysing, interpreting and reporting case studies

Making sense and offering a coherent interpretation of the typically disparate sources of data (whether qualitative alone or together with quantitative) is far from straightforward. Repeated reviewing and sorting of the voluminous and detail-rich data are integral to the process of analysis. In collective case studies, it is helpful to analyse data relating to the individual component cases first, before making comparisons across cases. Attention needs to be paid to variations within each case and, where relevant, the relationship between different causes, effects and outcomes[ 23 ]. Data will need to be organised and coded to allow the key issues, both derived from the literature and emerging from the dataset, to be easily retrieved at a later stage. An initial coding frame can help capture these issues and can be applied systematically to the whole dataset with the aid of a qualitative data analysis software package.

The Framework approach is a practical approach, comprising of five stages (familiarisation; identifying a thematic framework; indexing; charting; mapping and interpretation) , to managing and analysing large datasets particularly if time is limited, as was the case in our study of recruitment of South Asians into asthma research (Table 1 )[ 3 , 24 ]. Theoretical frameworks may also play an important role in integrating different sources of data and examining emerging themes. For example, we drew on a socio-technical framework to help explain the connections between different elements - technology; people; and the organisational settings within which they worked - in our study of the introduction of electronic health record systems (Table 3 )[ 5 ]. Our study of patient safety in undergraduate curricula drew on an evaluation-based approach to design and analysis, which emphasised the importance of the academic, organisational and practice contexts through which students learn (Table 4 )[ 6 ].

Case study findings can have implications both for theory development and theory testing. They may establish, strengthen or weaken historical explanations of a case and, in certain circumstances, allow theoretical (as opposed to statistical) generalisation beyond the particular cases studied[ 12 ]. These theoretical lenses should not, however, constitute a strait-jacket and the cases should not be "forced to fit" the particular theoretical framework that is being employed.

When reporting findings, it is important to provide the reader with enough contextual information to understand the processes that were followed and how the conclusions were reached. In a collective case study, researchers may choose to present the findings from individual cases separately before amalgamating across cases. Care must be taken to ensure the anonymity of both case sites and individual participants (if agreed in advance) by allocating appropriate codes or withholding descriptors. In the example given in Table 3 , we decided against providing detailed information on the NHS sites and individual participants in order to avoid the risk of inadvertent disclosure of identities[ 5 , 25 ].

What are the potential pitfalls and how can these be avoided?

The case study approach is, as with all research, not without its limitations. When investigating the formal and informal ways undergraduate students learn about patient safety (Table 4 ), for example, we rapidly accumulated a large quantity of data. The volume of data, together with the time restrictions in place, impacted on the depth of analysis that was possible within the available resources. This highlights a more general point of the importance of avoiding the temptation to collect as much data as possible; adequate time also needs to be set aside for data analysis and interpretation of what are often highly complex datasets.

Case study research has sometimes been criticised for lacking scientific rigour and providing little basis for generalisation (i.e. producing findings that may be transferable to other settings)[ 1 ]. There are several ways to address these concerns, including: the use of theoretical sampling (i.e. drawing on a particular conceptual framework); respondent validation (i.e. participants checking emerging findings and the researcher's interpretation, and providing an opinion as to whether they feel these are accurate); and transparency throughout the research process (see Table 8 )[ 8 , 18 – 21 , 23 , 26 ]. Transparency can be achieved by describing in detail the steps involved in case selection, data collection, the reasons for the particular methods chosen, and the researcher's background and level of involvement (i.e. being explicit about how the researcher has influenced data collection and interpretation). Seeking potential, alternative explanations, and being explicit about how interpretations and conclusions were reached, help readers to judge the trustworthiness of the case study report. Stake provides a critique checklist for a case study report (Table 9 )[ 8 ].

Conclusions

The case study approach allows, amongst other things, critical events, interventions, policy developments and programme-based service reforms to be studied in detail in a real-life context. It should therefore be considered when an experimental design is either inappropriate to answer the research questions posed or impossible to undertake. Considering the frequency with which implementations of innovations are now taking place in healthcare settings and how well the case study approach lends itself to in-depth, complex health service research, we believe this approach should be more widely considered by researchers. Though inherently challenging, the research case study can, if carefully conceptualised and thoughtfully undertaken and reported, yield powerful insights into many important aspects of health and healthcare delivery.

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Acknowledgements

We are grateful to the participants and colleagues who contributed to the individual case studies that we have drawn on. This work received no direct funding, but it has been informed by projects funded by Asthma UK, the NHS Service Delivery Organisation, NHS Connecting for Health Evaluation Programme, and Patient Safety Research Portfolio. We would also like to thank the expert reviewers for their insightful and constructive feedback. Our thanks are also due to Dr. Allison Worth who commented on an earlier draft of this manuscript.

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AS conceived this article. SC, KC and AR wrote this paper with GH, AA and AS all commenting on various drafts. SC and AS are guarantors.

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A qualitative study of health information-seeking behavior on the Internet among information technology professionals

Priyadarshini pattath.

Division of Health Sciences Diversity, Virginia Commonwealth University, Richmond, VA, USA

BACKGROUND:

The motivation to seek health information on the Internet for individuals has been varied. The purpose of this paper was to explore the perspectives and experiences about online health information seeking in information technology (IT) professionals.

MATERIALS AND METHODS:

A qualitative case study research design was employed to examine the behavior of 15 IT professionals from a state organization in the East Coast of the United States of America. Convenience sampling was used to identify the setting, and purposeful sampling was used to select the participants. A survey questionnaire was used as a recruitment tool, and in-depth individual interviews with standardized semi-structured questions were used to collect data.

Findings illustrated that the Internet was the first source of reference for wellness and prevention information to maintain a healthy lifestyle, and to alleviate and prevent work-related musculoskeletal disorders (WMSDs). The themes that emerged from the study were that the IT professionals searched the Internet for information to self-educate about medical conditions, to maintain fitness, communicate with health-care professionals, decide their treatment options, and to make lifestyle modifications such as ergonomic adjustment of their workstation, postural adjustments, and changing negative health behaviors.

CONCLUSION:

The results of this study provide practical implications for organizations and health professionals in providing health education to prevent WMSDs as participants sought health information online to take actions and collaborate with their health-care professionals and actively contributed to their medical health decisions. This underscores a valuable opportunity for health-care providers and public health officials to become more proactive by providing their patients with quality health information outside their office through the Internet by referring them to credible website sources.

Introduction

Individuals seek health information on the Internet for health education and health promotion activities.[ 1 , 2 ] As per January 15, 2013, Health Online – Pew Internet and American Life Study, about 35% of the U. S. adults have accessed the Internet to seek health information, with one in three American adults seeking information about a medical condition.[ 3 ] Historically, the motivation for seeking health information on the Internet may be in response to a health event[ 4 ] and has been understudied among computer users related to work-related musculoskeletal disorders (WMSDs). Computer users are at an increased risk of neck and upper extremity MSDs.[ 5 , 6 , 7 ] Awkward postures and repetitive motions contribute to WMSDs that are a leading cause of occupational absenteeism and lost productivity in the workplace worldwide.[ 8 ]

Health information-seeking behavior on the Internet

Research indicates that the Internet is an added venue to search for health-care-related information with about 72% adults starting their inquiry at a search engine such as Google, Yahoo, or Bing.[ 3 ] About 13% adults searched at a medical site like WebMD, about 2% adults searched Wikipedia, and 1% adults at a social network like Facebook. WebMD, Mayo Clinic, National Institutes of Health, and Centers for Disease Control and Prevention (CDC) are popular health websites.[ 3 ] Many studies have assessed the health information-seeking behavior in a variety of health scenarios, ranging from HIV-positive women to different demographics such as socioeconomic status to older adults' behavior and adults' educational status.[ 2 , 4 , 9 , 10 ] Furthermore, a key finding was that there was a strong association between digital literacy and health status regardless of educational status.[ 11 ] Similarly, in their study analyzing older adult's Internet using behavior for health information, Chang and Im found that prior experience of using computers and the Internet led to perceived ease of use.[ 9 ]

This definitely suggests that computer professionals who are working in the information technology (IT) sector and possessing the skills and access will certainly benefit with online use and application for prevention of WMSD. Given the Internet's ability to reach beyond the clinical settings, it has the capacity of larger dissemination of knowledge. Internet-mediated wellness and prevention programs have been reported to be effective, with participant adherence and minimal attrition.[ 1 , 12 , 13 ]

The motivation to seek health information on the Internet include a health event, a diagnosis or when individuals are deciding to change their diet or exercise habits or to promote wellness.[ 2 , 13 ] It has been found that an individual's behavior in seeking health information on the Internet is related to their demand for health care.[ 14 ] Most of the literature on health information-seeking behavior has examined this behavior in certain illnesses such as cancer, cardiovascular diseases, diabetes or in general population, and not specifically in people with WMSDs.[ 9 , 15 ] Thus, there remains an opportunity to study health information-seeking behavior of IT professionals on the Internet and has implications for integrating online health education and ergonomic awareness to enhance employee health and prevent WMSDs as self-directed learning and education using the Internet lead to improved health outcomes.[ 16 , 17 ]

Knowles describes the basic assumption for self-directed learning to include a problem-centered approach requiring internal motivation and utilizing individual experiences as resources for learning with self-directedness being an essential part of adult learners and that it is a highly deliberate effort to gain certain knowledge or skill.[ 18 ] Readiness to learn is dependent on immediacy of application. Papen found that when adults seek health-care information on the Internet, they focus on specific tasks in response to particular needs; learning is through practice and often by trial and error and is fully embedded in the process of dealing with a health issue.[ 19 ] Exploring the perspectives and experiences about online health information seeking of IT professionals will aid in garnering a greater understanding of the feasibility of the Internet to deliver intervention to prevent WMSDs.[ 16 ] Since WMSDs are a leading cause of occupational morbidity, and lost productivity in the workplace, organizations would benefit from such preventive measures to reduce the incidence of WMSD.

Materials and Methods

Ethical consideration.

The study was approved by the researcher's institute review board. The approval code number was ID: HM20009856. The purpose and procedures of this study were explained to all the participants and informed consent was obtained before data were collected.

Study design and setting

A qualitative case study was used to study this phenomenon. This approach is apt to explore the research questions as they call for a rich and descriptive data.

Study participants and sampling

The participants in this study are the IT professionals from a public organization in the East Coast of the United States. Fifteen IT professionals participated in this study. The participants ranged in age from 30 to 60 years. Eight participants were males and seven participants were females. Most of them worked using computers for more than 40 h a week while some worked between 30 and 40 h on the computer. All of them used the Internet to search for health-related information.

A survey questionnaire was used as a recruitment tool to purposefully identify participants for the study. Purposeful sampling is defined as selecting participants who are best suited to answer the research questions.[ 20 ] Since qualitative research focuses on recruiting participants who have the most knowledge and the most experience with the phenomenon being studied, to begin purposeful sampling, the researcher has to determine the selection criteria that directly reflect the purpose of the study and also guide in the identification of information-rich cases.[ 20 ] Thus, the survey questionnaire collected demographic information such as age, gender, average number of hours they work on the computer in a week, number of years as a computer professional, presence of chronic illness related to muscle or joints, and history of pain related to any fall, slips, or accident. The usage of the Internet for seeking health information was also assessed. The framework adopted in this study for selection of participants requires some variance for organizing relationships among them, and is based on previous studies on health information-seeking behavior on the Internet of general population. The participants were IT professionals who have used the Internet to find health information. It was emphasized that participation in the survey and the study was voluntary and was explicitly for research purposes and had no bearing toward their organization in any way.

Data collection tool and technique

In-depth individual interview with standardized semi-structured questions was used to collect data from 15 participants. Some of the interview questions were as follows, “How often do you use the Internet to find health information?” “What motivates you to search for health information online and what wouldn't you search online?” Prompt: Symptoms such as pain, a diagnosis, doctor's visit, any new medications, conversation with colleagues/friends/family, “Have you used videos sites such as YouTube or read or commented on Blogs? Can you describe your experience? Was the information helpful? Did it help answering your problems and did you act on it?” and “Besides the Internet, where do you get health information?” A pilot test was carried out with two participants, and the questionnaire was modified based on the pilot test. Once the interviews were completed, they were transcribed and imported into Atlas.ti qualitative data analysis software, where the data were coded based on common patterns, themes, and categories.[ 20 , 21 ] The themes were organized based on the hierarchy of the codes and the relationships between the codes.

Research questions

• What are the sources of health information that the IT professionals have experienced?
• What health information do IT professionals seek from the Internet?
• How has health information seeking on the Internet affected health care and behavior change?
• What barriers do IT professionals experience when seeking online health information?

Fifteen IT professionals participated in this qualitative study exploring health information-seeking behavior on the Internet. Several themes emerged from this study and the prominent finding that emerged was that the IT professionals were self-directed in their health care and sought out various resources of health information for both wellness and illness management, and perceived their health information seeking on the Internet as positively affecting their health care. Following are the findings of the research questions.

R.Q.1 – What are the sources of health information that the computer professionals have experienced?

Three sources emerged from the analysis: the Internet and other media, individuals, and workplace initiatives. The participants used multiple sources, and complemented or supplemented the information obtained from one source with other sources. Table 1 displays the main sources and the related quotes.

Sources of health information

DHRM=Department of Human Resource Management, CDC=Centers for Disease Control and Prevention

R.Q. 2 – What health information do computer professionals seek from the Internet?

The themes that emerged from the interview data regarding the type of health information that the IT professionals sought from the Internet are as follows: wellness and prevention information, information to self-educate about medical conditions, and information to decide their treatment options. All the participants recognized the importance of maintaining their health and considered the Internet a reliable source for disease prevention and health promotion. As part of the wellness and prevention information, the main categories that emerged were fitness, prevention of MSDs, and information to maintain a healthy lifestyle. Techniques and strategies to adjust their workstation based on ergonomics to prevent MSDs were one of the types of information that the participants sought from the Internet. The participants also needed information to make sense of their symptoms, understand the medical conditions, understand the likely treatment solutions and their effects and outcomes, learn how to prevent further illness, and improve their understanding of the condition so that they can better communicate with their health-care professionals. Participants sought information from the Internet to help them make decision about their treatment option, and to decide whether they should seek treatment from their health-care professional in the first place. Table 2 displays the themes with the relevant quotes.

Types of health information sought on the internet

R.Q. 3 – How has health information seeking on the Internet affected health care and behavior change?

Five themes emerged from the analysis of the interview transcripts of the participants. They were as follows: being proactive in fitness, modifying contextual factors, making lifestyle modifications, being more confident in their treatment decisions, and better management of health conditions. The Internet provided an effective channel for health promotion and disease prevention activities by encouraging the participants to be more proactive. The contextual factors that the IT professionals modified in their environment, related to ergonomic adjustment strategies and posture correction, to treat and prevent MSDs that most of them suffered due to their occupation. Participants informed that they were able to make informed ergonomic adjustments and alterations either to their seating arrangements or their workstation. Preventing diseases by making lifestyle modifications such as practicing good nutrition and diet management and overcoming negative habits were cited as an important outcome of seeking health information from the Internet.

Many participants identified that the self-directed learning that they employed in searching health information, gave them more confidence in deciding their options. Sometimes, the participants reported that they self-diagnosed their condition, but most of the times, whatever information they found needed to be confirmed by their health-care professional. Participants reported that the main aim in learning was gaining maximum knowledge about their specific conditions, and set of treatments which, in turn, improved their ability to discuss with their health-care professionals and also aided in having a feeling of control over their health. Their outcomes also included getting more information or double-checking or clarifying the information provided by the health-care professionals, and thus better manages their condition. Table 3 displays the themes and the key quotes.

Outcome of health information seeking on the internet

R.Q.4 – What barriers do computer professionals experience when seeking online health information?

The factors that emerged as barriers to seeking health information on the Internet are as follows: issues of trust, volume of information, and distractions. It was evident that they viewed the Internet information with caution and trusted government or known medical websites, but reported at times being overwhelmed with the volume of the information. Most of the participants were looking for relevant, succinct information, and found the overload of information a detriment in keeping them engaged. Table 4 displays the themes and the relevant quotes.

Barriers in seeking health information online

NIH=National Institutes of Health

Much of the information seeking in this study was informal, self-directed, and self-managed.[ 19 ] Knowles stated that self-directed learning was the ability to learn on one's own based on their immediate need.[ 18 ] This was clearly demonstrated by each of the participants in this study. All the participants used multiple sources of information to inform their health-care choices and decisions, ranging from information from the Internet, other media, their workplace, or discussion with other individuals. The predominant source of information was the Internet, where the participants sought wellness and prevention information as well as information related to specific medical conditions and treatment options. The participants were able to overcome the barriers of trust, volume of information, and distractions by making good decisions based on their experience.[ 18 ] It is interesting to note that all the participants valued the health information provided by the Internet, even after interaction with their health-care providers. The participants of this study had a definite goal that they needed to fulfill learning more about prevention strategies for MSDs, any specific health conditions, or an aim to lead a better lifestyle. Several studies documented that change in the health status was the triggering event for a learning episode in older adults.[ 4 , 11 , 15 ] However, in this study, the findings revealed that along with a specific health event, learning was also triggered by the motivation to prevent illness and to maintain a healthy lifestyle.

Most of the information related to the participant's working environment was gleaned through their interaction in their workplace, including their colleagues and information sessions provided by their organization. Information related to prevention of MSDs was discussed among their colleagues, as many of them suffered from WMSDs. For example, two of the participants often discussed possible solutions for their MSD.

Contrary to previous research, only a few of the participants in this study referred to other media such as television, radio, print advertisement, brochures, and magazines for their health information.[ 1 , 15 ] Most of the participants used multiple sources for their health information, with the most prominent being the Internet. This may be because they are computer professionals who have constant access to the Internet. The information from each source, however, was either complemented or supplemented or verified by other sources.[ 1 ]

Most of the participants mentioned using the Internet for behavior modification in terms of lifestyle and maintain their fitness. As previous research had suggested, the study participants searched the Internet for health information on fitness regimes, diet, exercises, alternative treatments, and specific diseases and treatments.[ 3 , 4 , 10 ] The participants reported searching for preventive care and healthy lifestyle choices including diet, nutrition, vitamin supplements, and organic food, consistent with previous research.[ 13 ] Participants in this study searched for health information based on their symptoms and medical conditions. Their search was also before and after consultation with their health-care professional. This indicates that these participants were very much self-motivated and wanted more say and control of their personal health and wellness. Findings that relate to the outcome of health information seeking on the Internet are consistent with previous research.[ 13 , 14 , 22 , 23 , 24 ] The resultant information has led to knowledge change, attitude change, and behavior change and maintenance for the participants of this study.[ 25 ] Many of the participants have remained proactive in maintaining their fitness and exercise regimes. One of the participants had made a life-changing behavior change and credits the Internet to help to stop smoking indicating that health literacy and awareness are important for changing behaviors.[ 26 ]

Participants were also more confident in the available treatment options. Similar to previous research, some of the participants in this study self-diagnosed their symptoms while some deliberated their options whether to consult their health-care provider.[ 3 ] A major theme that came out of this study was that the study specifically found that participants were able to make modifications in their contextual factors. Many of the participants suffered from WMSD, which propelled them to search for feasible modification of their workstation. Many participants made changes based on ergonomics to their desk, chair, or computer monitors, based on the information that they obtained from various sources on the Internet. Participants used these modifying options both to treat and prevent MSD. This was specifically mentioned by the participants who were aware that they went into awkward postures while working on the computer. Participants who were not of average height, found modifications and solutions to alter or modify their workstations on the Internet. The findings emphasized the way the participants were able to make informed ergonomic adjustments and alterations either to their seating arrangements or their workstation based on their search on the Internet. As one of the participants was short in stature, she faced particular difficulty in adjusting her workstation to her body in spite of all possible solutions known to her and getting treatment from her chiropractor. Researching on the Internet helped her inform about better options to ergonomically adjust her computer monitor. Another advantage of this study is the qualitative design that helped in getting a deeper understanding of the participant's perspectives about applications of health information from the Internet.

Findings from this study echoed those themes that have been predominant in literature on online health information seeking.[ 3 , 16 , 22 ] All of the participants were cautious in their use of the Internet for health information, and used reputed websites such as CDC and Mayo Clinic as credible sources. With the increasing availability of health information online, it is important to be able to access trustworthy and reliable information and the information may need to be verified by health-care professionals.[ 2 , 16 , 23 ]

The findings of this study point to an opportunity for health-care providers, public health officials, and adult educators/health educators to become more proactive by providing quality health information outside their office through the Internet by referring them to credible websites.[ 2 , 27 ] Participants have changed their negative habits such as ceasing smoking and incorporated healthy lifestyle changes of diet, nutrition, and exercises. Using the Internet to promote positive attitude may predict a specific positive behavior. Based on the findings of this study, the content needs to be engaging and short, so that the learners are kept engaged. The study results present important implications for the future development of more effective prevention programs that will empower computer users to maintain their health and be proactive in preventing MSD. Findings from this study point to a need for reliable and credible health information that the employees can trust.

This study has several limitations. The sample of 15 participants may not represent the entire population of IT professionals and the nature of the context and its participants may limit the generalizability of the findings. Based on the results of this study, a survey study is recommended to analyze the positive effects of searching online health information with a larger sample and varying demographics. The perceptions of health-care professionals who are one of the sources of health information should be explored to gather additional information about the impact of health information-seeking behavior online. Replication of this study in other geographic areas would contribute additional information on health information-seeking behavior in IT professionals.

This study provides a deeper insight into the perceptions, experiences, and attitudes of IT professionals and their health information-seeking behavior on the Internet. The IT professionals obtained health information from multiple sources such as the Internet, other people, their workplace, and other media and complemented or supplemented the information obtained from one source with other sources. As the participants were aware about the credibility of information from the Internet, they used it with caution. Individuals utilizing self-directed learning to gather health-care information, from any source, and using it to make informed decisions have the potential to be more in control of their health care. The IT professionals were self-directed in seeking preventive strategies to help alleviate their MSDs. Finding more about their symptoms and medical conditions helped to keep them more informed about their health conditions and treatment options and better interact with their health-care providers. They were also able to make significant lifestyle modifications including their diet, nutrition, and habits based on the information they gained on the Internet. The use of technology and easy availability of health information on the Internet has made the self-directed learners more informed, and better capable of interacting with the health-care system, make modifications to their lifestyle or contextual factors, be proactive, and manage their own health with the impetus to learn being their health condition or a need for prevention and wellness.

Financial support and sponsorship

Conflict of interest.

There are no conflicts of interest.

Acknowledgment

We would like to extend our sincere appreciation and gratitude to the participants of this study. Their alacrity in participating in the interviews made this research possible.

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• Qualitative Research:...

Qualitative Research: Case study evaluation

• Related content
• Peer review
• Justin Keen , research fellow, health economics research group a ,
• Tim Packwood a
• Brunel University, Uxbridge, Middlesex UB8 3PH
• a Correspondence to: Dr Keen.

Case study evaluations, using one or more qualitative methods, have been used to investigate important practical and policy questions in health care. This paper describes the features of a well designed case study and gives examples showing how qualitative methods are used in evaluations of health services and health policy.

This is the last in a series of seven articles describing non-quantitative techniques and showing their value in health research

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Introduction

The medical approach to understanding disease has traditionally drawn heavily on qualitative data, and in particular on case studies to illustrate important or interesting phenomena. The tradition continues today, not least in regular case reports in this and other medical journals. Moreover, much of the everyday work of doctors and other health professionals still involves decisions that are qualitative rather than quantitative in nature.

This paper discusses the use of qualitative research methods, not in clinical care but in case study evaluations of health service interventions. It is useful for doctors to understand the principles guiding the design and conduct of these evaluations, because they are frequently used by both researchers and inspectorial agencies (such as the Audit Commission in the United Kingdom and the Office of Technology Assessment in the United States) to investigate the work of doctors and other health professionals.

We briefly discuss the circumstances in which case study research can usefully be undertaken in health service settings and the ways in which qualitative methods are used within case studies. Examples show how qualitative methods are applied, both in purely qualitative studies and alongside quantitative methods.

Case study evaluations

Doctors often find themselves asking important practical questions, such as should we be involved in the management of hospitals and, if so, how? how will new government policies affect the lives of our patients? and how can we cope with changes in practice in our local setting? There are, broadly, two ways in which such questions can usefully be addressed. One is to analyse the proposed policies themselves, by investigating whether they are internally consistent and by using theoretical frameworks to predict their effects on the ground. National policies, including the implementation of the NHS internal market 1 and the new community care arrangements 2 have been examined in this way by using economic theory to analyse their likely consequences.

The other approach, and the focus of this article, is to study implementation empirically. Empirical evaluative studies are concerned with placing a value on an intervention or policy change, and they typically involve forming judgments, firstly about the appropriateness of an intervention for those concerned (and often by implication also for the NHS as a whole) and, secondly about whether the outputs and outcomes of interventions are justified by their inputs and processes.

Case study evaluations are valuable where broad, complex questions have to be addressed in complex circumstances. No one method is sufficient to capture all salient aspects of an intervention, and case studies typically use multiple methods.

The methods used in case studies may be qualitative or quantitative, depending on the circumstances. Case studies using qualitative methods are most valuable when the question being posed requires an investigation of a real life intervention in detail, where the focus is on how and why the intervention succeeds or fails, where the general context will influence the outcome and where researchers asking the questions will have no control over events. As a result, the number of relevant variables will be far greater than can be controlled for, so that experimental approaches are simply not appropriate.

Other conditions that enhance the value of the case study approach concern the nature of the intervention being investigated. Often an intervention is ill defined, at least at the outset, and so cannot easily be distinguished from the general environment. Even where it is well defined, an intervention may not be discrete but consist of a complex mix of changes that occur over different timescales. This is a pervasive problem in health services in many countries, which are experiencing many parallel and interrelated changes. The doctor weighing up whether or how to become involved in hospital management would have to assess the various impacts on the managerial role of clinical audit, resource management, consultant job plans, and a raft of government legislation. Secondly, any intervention will typically depend for its success on the involvement of several different interested groups. Each group may have a legitimate, but different, interpretation of events; capturing these different views is often best achieved by using interviews or other qualitative methods within a case study design. Thirdly, it is not clear at the outset whether an intervention will be fully implemented by the end of a study period--accounts of major computer system failures show this. 3 Yet study of these failures may provide invaluable clues for future success.

Taken together, these conditions exclude experimental approaches to evaluation. The case study is an alternative approach--in effect, a different way of thinking about complex situations which takes the conditions into account, but is nevertheless rigorous and facilitates informed judgments about success or failure.

The design of case studies

As noted earlier, case studies using qualitative methods are used by bodies that inspect and regulate public services. Examples include the work of the National Audit Office and the Audit Commission 4 in the United Kingdom and the Office of Technology Assessment in the United States. 5 Sometimes these studies are retrospective, particularly in investigations of failed implementations of policies. Increasingly, though, these bodies use prospective studies designed to investigate the extent to which centrally determined standards or initiatives have been implemented. For example, the National Audit Office recently examined hospital catering in England, focusing on the existence of, and monitoring of, standards as required by the citizen's charter and on the application of central policy and guidance in the areas of nutritional standards and cost control. 6

Prospective studies have also been used by academic researchers, for example, to evaluate the introduction of general management 7 in Britain after the Griffiths report, 8 in the studies of specific changes following the 1989 NHS review 9 which were commissioned by the King's Fund, 10 and in the introduction of total quality management in hospitals in the United States. 11 In these cases the investigators were interested in understanding what happened in a complex environment where they had no control over events. Their research questions emerged from widespread concerns about the implications of new policies or management theories, and were investigated with the most appropriate methods at their disposal.

THE NATURE OF RESEARCH QUESTIONS

Once a broad research question has been identified, there are two approaches to the design of case study research, with appropriateness depending on the circumstances. In the first approach, precise questions are posed at the outset of the research and data collection and analysis are directed towards answering them. These studies are typically constructed to allow comparisons to be drawn. 12 The comparison may be between different approaches to implementation, or a comparison between sites where an intervention is taking place and ones where normal practice prevails.

An example is the recent study by Glennerster et al of the implementation of general practitioner fundholding. 13 Starting with a broad question about the value of general practitioner fundholding, the researchers narrowed down to precise questions about the extent to which the fundholding scheme promoted efficiency and preserved equity. They used one qualitative method, semistructured interviews, with the general practitioners and practice managers and also with people responsible for implementing the policy at national and regional level. The interviews were complemented by the collection of quantitative data such as financial information from the practices (box 1).

Box 1 Outline of case study of GPfundholding 13

Mix of qualitative and quantitative methods

Fundholding and non-fundholding practices

Programme of interviews with key staff at practices

Interviews with people responsible for imple-menting national policy

Study found that the general practitioner fund-holding scheme was achieving the aims set for it bygovernment and that adverse selection (“creamskimming”) of patients was less likely than some commentators had feared

The second approach is more open and in effect starts by asking broad questions such as what is happening here? and, what are the important features and relationships that explain the impact of this intervention? These questions are then refined and become more specific in the course of fieldwork and a parallel process of data analysis. This type of design, in which the eventual research questions emerge during the research, is termed ethnography and has been advocated for use in the study of the impact of government policies in the health system. 14 15 In some ways it is similar to the way in which consultations are conducted in that it involves initial exploration, progressing over time towards a diagnosis inferred from the available data.

The evaluation of resource management in the NHS, 16 which investigated the progress of six pilot hospitals in implementing new management arrangements, focused particularly on identifying ways in which doctors and general managers could jointly control the allocation and commitment of resources (box 2). At the outset the nature of resource management was unclear--sites were charged with finding ways of involving doctors in management, but how this would be achieved and, if achieved, how successful it would be in improving patient care were open questions. The researchers selected major specialties within each site and conducted interviews with relevant staff, observed meetings, and analysed documentation. Over time, the data were used to develop a framework which captured the essential features of resource management at the time and which was used to evaluate each site's progress in implementing it.

Box 2 Evaluation of resourcemanagement 16

Six hospitals, a mix of teaching and non-teaching

Focus on major specialties: general surgery and general medicine

Methods and data sources independent of each other

Qualitative methods included interviews, non-participant observation of meetings, analysis of documentation

Evaluation found that there were important changes in management processes, but little evidence of improvement in patient care

SELECTION OF SITES

The process of selecting sites for study is central to the case study approach. Researchers have developed a number of selection strategies, the objectives of which, as in any good research study, are to ensure that misinterpretation of results is as far as possible avoided. Criteria include the selection of cases that are typical of the phenomenon being investigated, those in which a specific theory can be tested, or those that will confirm or refute a hypothesis.

Researchers will benefit from expert advice from those with knowledge of the subject being investigated, and they can usefully build into the initial research design the possibility of testing findings at further sites. Replication of results across sites helps to ensure that findings are not due to characteristics of particular sites; hence it increases external validity. 17

SELECTION OF METHODS

The next step is to select research methods, the process being driven by criteria of validity and reliability. 18 A distinctive but not unique feature of case study research is the use of multiple methods and sources of evidence to establish construct validity. The use of particular methods is discussed in other papers in this series; the validity and reliability of individual methods is discussed in more detail by Mays and Pope. 19

Case studies often use triangulation 20 to ensure the validity of findings. In triangulation all data items are corroborated from at least one other source and normally by another method of data collection. The fundholding study referred to earlier 13 used interviews in combination with several different quantitative sources of data to establish an overall picture. The evaluation of resource management, in contrast, used a wider range of qualitative and quantitative methods. 16

Case studies are used by bodiesthat inspect public services--to monitor standards in hospital catering, for example

Any one of these methods by itself might have produced results of weak validity, but the different methods were used to obtain data from different sources. When they all suggested the emergence of an important development, therefore, they acted to strengthen the researchers' belief in the validity of their observations.

Another technique is to construct chains of evidence; these are conceptual arguments that link phenomena to one another in the following manner: “if this occurs then some other thing would be expected to occur; and if not, then it would not be expected.” For example, if quantitative evidence suggested that there had been an increase or decrease in admission rates in several specialties within a resource management site and if an interview programme revealed that the involvement of doctors in management (if developed as part of the resource management initiative) had led to a higher level of coordination of admissions policies, then this is evidence that resource management may facilitate the introduction of such policies. This type of argument is not always appropriate, but it can be valuable where it is important to investigate causation in complex environments.

ANALYTICAL FRAMEWORKS

The collection of data should be directed towards the development of an analytical framework that will facilitate interpretation of findings. Again, there are several ways in which this might be done. In the study of fundholding 13 the data were organised to “test” hypotheses which were derived from pre-existing economic theories. In the case of resource management there was no obvious pre-existing theory that could be used; the development of a framework during the study was crucial to help organise and evaluate the data collected. The framework was not imposed on the data but derived from it in an iterative process over the course of the evaluation; each was used to refine the other over time (box 3). 15

Framework: five interrelated elements of resource management 16

The target should be a reduction in the consumption itself

Commitment to resource management by the relevant personnel at each level in the organisation

Devolution of authority for the management ofresources

Collaboration within and between disciplines insecuring the objectives of resource management

Management infrastructure, particularly in termsof organisational structure and provision of information

A clear focus for the local resource management strategy

The investigator is finally left with the difficult task of making a judgment about the findings of a study. The purpose of the steps in designing and building the case study research is to maximise confidence in the findings, but interpretation inevitably involves value judgments. The findings may well include divergences of opinion among those involved about the value of the intervention, and the results will often point towards different conclusions.

The extent to which research findings can be assembled into a single coherent account of events varies widely. In some circumstances widely differing opinions are themselves very important and should be reflected in any report. Where an evaluation is designed to inform policy making, however, some attempt has to be made at an overall judgment of success or failure; this was the case in the evaluation of resource management, where it was important to indicate to policy makers and the NHS whether it was worth while.

The complexity of the issues that health professionals have to deal with and the increasing recognition by policy makers, academics, and practitioners of the value of case studies in evaluating health service interventions suggest that the use of such studies is likely to increase in the future. Qualitative methods can be used within case study designs to address many practical and policy questions that impinge on the lives of professionals, particularly where those questions are concerned with how or why events take a particular course.

• Committee of Public Accounts
• Audit Commission
• Office of Technology Assessment
• National Audit Office
• Pollitt C ,
• Harrison S ,
• Griffiths R
• Secretaries of State
• Robinson R ,
• Berwick D ,
• Godfrey AB ,
• St Leger A ,
• Schneider H ,
• Walsworth-Bell J
• Glennerster H ,
• Matsaganis M ,
• Packwood T ,

The lived experiences of hematology healthcare providers during and beyond the COVID-19 crisis: A qualitative study

Affiliations.

• 1 School of Public Health, The University of Queensland, Brisbane, Queensland, Australia.
• 2 Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, Victoria, Australia.
• 3 Melbourne Centre for Behaviour Change, University of Melbourne, Melbourne, Victoria, Australia.
• 4 School of Health Sciences, University of Melbourne, Melbourne, Victoria, Australia.
• 5 Leukaemia Foundation, Brisbane, Queensland, Australia.
• 6 Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia.
• PMID: 37950341
• DOI: 10.1002/pon.6250

Objective: Amid the COVID-19 pandemic, healthcare providers (HCPs) of hematology patients face unique challenges due to the vulnerability of their patients. This study explores the lived experiences of these providers during and beyond the crisis.

Methods: Twenty-one Australian HCPs caring for hematology patients completed semi-structured interviews exploring their experiences and needs during the COVID-19 pandemic, adequacy of support and information provided by healthcare organizations, impact on hematology patients, and the benefits and challenges of telehealth care. Data were analyzed using reflexive thematic analysis.

Results: Four themes were identified: (1) Managing an initial state of flux (unsettling uncertainty and fear, unique needs of hematology patients, getting on with the job together); (2) Concerns about care provision (questioning care efficacy, burden of compassion); (3) Disconnect between HCP needs and system-level responses (burnout, isolation, and poor work-life balance, broadcast fatigue, protecting mental health), and; (4) Reflecting on the future (ongoing challenges for hematology patients, higher staff turnover and heavier workloads, innovation in the healthcare field).

Conclusion: This study sheds light on the challenges that hematology HCPs face during and beyond the COVID-19 crisis, impacting their wellbeing. Addressing these challenges is paramount for the healthcare system at large. Provider-led peer support programs may be beneficial for addressing moral distress and building resilience. Additionally, specific consideration for the ongoing vulnerability of hematology patients could have positive impacts on providers' professional satisfaction.

Keywords: COVID-19 pandemic; cancer; hematology; oncology; psycho-oncology; qualitative research; thematic analysis.

© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Grants and funding

• University of Melbourne

• Open access
• Published: 10 November 2023

Stigma manifestations in cardiomyopathy care impact outcomes for black patients: a qualitative study

• Morgan Wolfgang 1 ,
• Laura Beskow 2 ,
• Gillian Hooker 2 ,
• Mya Roberson 2 &
• Katherine Anderson 2  

BMC Cardiovascular Disorders volume  23 , Article number:  553 ( 2023 ) Cite this article

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Introduction

Inequities in clinical care may contribute to racial disparities observed in studies of heart disease morbidity and cardiogenetic testing outcomes. There is a lack of research aimed at understanding the complexity of those inequities, but stigma likely contributes. This qualitative exploratory study helps close that gap in the literature by describing intersectional stigma manifestations perceived by the Black cardiomyopathy patient population at one academic medical center.

Qualitative interviews were conducted with 14 Black cardiomyopathy patients. Interviews aimed to elicit patients’ experiences with discrimination related to diagnosis, symptoms, genetic testing, knowledge of genetic results, genetic counseling, providers’ actions, and providers’ communication. The interview guide was informed by The Health Stigma and Discrimination Framework. Data were also collected about participant demographics, type of cardiomyopathy, age of diagnosis, documentation of relevant family history, and completion of genetic counseling and/or genetic testing.

More than half of participants reported intersectional stigma manifestations related to their race, age, and/or weight while receiving care from cardiologists, nurse practitioners, genetic counselors, or clinical support staff. Stigma manifestations included physical roughness during patient care, withholding diagnostically-relevant information from the patient, impersonal care, coercion, and use of offensive stereotyped language by providers. These stigma manifestations impacted access to care, uptake of genetic testing, timeline to diagnosis, patient emotion, patient-provider trust, and adherence to medical recommendations.

Conclusions

This study provides nuanced qualitative descriptions of stigma manifestations that affect patient and clinical outcomes in cardiology care and genetic services in one medical center in the Southeastern United States. The results of this study suggest that provider bias and stigma manifestations have an adverse effect on cardiogenetic and clinical outcomes among Black cardiomyopathy patients. Clinical interventions are suggested to assist health professionals in providing culturally-competent and respectful care. These results help inform patient-provider communication, clinical policies, and evidence-based practice in cardiology care and genetics. Continued study of this topic across more institutions and with a larger sample size is needed to confirm the generalizability of the conclusions.

Peer Review reports

For many years, heart disease has been the number one cause of death in the United States [ 2 ]. Cardiomyopathy describes diseases, acquired or genetic, that affect the heart muscle. Symptoms include arrhythmia, chest pain, difficulty breathing, fainting, heart failure, and even sudden cardiac death [ 3 ]. Monitoring and treatment may include regular imaging (magnetic resonance imaging, echocardiography, etc.), trialing medications, and even heart transplant [ 3 ]. The most common type of cardiomyopathy is hypertrophic cardiomyopathy (HCM), which occurs in 1 out of every 500 people [ 3 ]. Some forms of cardiomyopathy result from alcohol and drug use, viral infection, or frequent intense exercise, but a significant proportion of cardiomyopathies have a genetic cause. A causative pathogenic variant may be identified in 60% of hypertrophic cardiomyopathy patients [ 1 ] and in up to 40% of dilated cardiomyopathy patients [ 14 ]. Genetic testing can be offered to cardiomyopathy patients to confirm a suspected clinical diagnosis and guide management [ 1 ]. Additionally, presymptomatic genetic testing can allow at-risk relatives to access medications that can significantly improve prognosis and lessen future symptoms [ 17 ].

Heart failure statistics, measured by the National Health and Nutrition Examination Survey, reveal striking racial disparities. The rate at which heart disease progressed to heart failure increased in Black patients by 67% from 1999 to 2016, while the progression to heart failure in white patients remained the same. After adjusting for age, sex, socioeconomic status, and cardiovascular risk factors like hypertension, obesity, or diabetes, patients were 1.5 times more likely to experience heart failure if they were Black [ 18 ]. This counters the assertion that Black people experience more heart failure because of lifestyle choices or fewer economic privileges.

Stigma is the internalized negative belief one holds about another person based on perceived characteristics [ 13 ]. Stigma related to race, gender, a health condition, and/or age may be experienced all at once (intersectional stigma) or separately [ 24 ]. Discrimination occurs when internal stigma manifests externally in one’s behaviors and attitudes, which may cause one to treat another person differently [ 13 ].

Providers’ internal stigma can lead to external discrimination, and discrimination impacts clinical and patient outcomes [ 21 ]. Oliver et al. found physicians reported preferences for white patients over Black patients. This study concluded that implicit and explicit racial stigma are significant in the physician population [ 16 ]. Stigma negatively impacts patients’ health behaviors, mental health, and physical health [ 24 ].

Furthermore, minority patients may be benefiting less from genetic services than white patients. About 1 in 28 people of African ancestry inherit a genetic predisposition to ATTR-CM [ 17 ]. Commonly, this is a specific founder mutation (p.Val142Ile) in the TTR gene [ 5 ]. However, minority populations are less likely to be offered clinical genetic testing by a physician or genetic counselor [ 4 ]. One study found that only 11% of patients with heart failure who have the Val142Ile mutation have an official diagnosis of ATTR-CM [ 6 ].

Despite known racial inequities, there is a lack of research aimed at understanding the complexity of how intersectional stigma is experienced by patients during cardiology care. There is also little research published about drivers and mechanisms of intersectional stigma [ 24 ]. Black Americans are disproportionately dying from heart failure, but most studies that report on the patient experience with heart failure or cardiomyopathy do not include minority perspectives. Many studies about patient experiences in cardiomyopathy care contain few or no black participants, and some studies fail to include race or ethnicity in the participant demographics at all [ 11 , 19 , 28 , 29 ]. Thus, this study aimed to qualitatively explore Black cardiomyopathy patients’ experiences with intersectional stigma manifestations throughout their cardiology care and genetic services.

We conducted qualitative interviews to explore Black cardiomyopathy patients’ experiences with intersectional stigma manifestations in cardiac-related healthcare and genetic services. The Vanderbilt University Medical Center Institutional Review Board deemed this research exempt under 45 CFR § 46.104(d)(2)(ii).

Sample recruitment

Recruitment was limited to patients in the cardiovascular medicine division in one southeastern academic medical center in the United States between June 2020 and October 2021. Inclusion criteria included: having a diagnosis of cardiomyopathy, speaking English as the primary language, and self-identified race being Black or African-American in medical record intake forms. Patients who identified as multiple races/ethnicities were eligible if one of those races/ethnicities was Black or African-American. Patients were excluded if they were younger than 18 years of age or did not have access to a phone or internet services.

A total of 63 Black cardiomyopathy patients were invited to participate by secure messaging through a medical chart communication portal. Of the 63 patients invited, 15 participants consented. Fourteen qualitative interviews were conducted. One participant who consented did not respond to efforts to schedule the interview. After consent was received, retrospective medical chart reviews were completed to gather data about their demographics, type of cardiomyopathy, age of diagnosis, documentation of relevant family history, and completion of genetic counseling and/or genetic testing.

Study design

The Grounded Theory Method informed this study’s design. It is the most commonly used method in qualitative research since it was introduced in 1967 by Glaser and Strauss. The Grounded Theory Method is an exploratory process in which portions of interview transcripts are simultaneously labeled, sorted, analyzed, and compared to earlier interviews. Data analysis occurs continually throughout data collection [ 12 ].

The interview questions aimed to elicit participants’ experiences related to diagnosis, symptoms, genetic testing, knowledge of genetic results, genetic counseling, providers’ actions, and providers’ communication. To avoid influencing participant responses, the interviewer did not mention race or discrimination until the last question of the interview. The interviewer asked probing questions about race or discrimination only after a participant raised the topic. The interview guide can be found in the supplemental documents.

Data collection

The lead investigator (MW) conducted one-on-one interviews with the participants over the phone or via video call. Interviews were audio recorded with permission from the participants. Participants had no prior relationship or contact with the interviewer before recruitment. The fourteen semi-structured interviews had an average duration of 26 min (ranging from 12 to 56 min). The interview recordings were transcribed, and any participant or provider identifiers were removed from the transcripts before analysis.

The relationship between intersectional stigma, stigma manifestations, and outcomes based on Stangl’s Health Stigma and Discrimination Framework [ 23 ]

The interview guide was informed by The Health Stigma and Discrimination Framework. Stangl’s framework describes the process of intersectional stigma (its facilitators, manifestations, and the outcomes it can have on an individual and society) as depicted in Fig.  1 [ 21 ]. This framework has been applied to research and clinical practice for many health conditions, including non-communicable diseases [ 21 ]. This framework describes the intersectional stigma that can arise when stigma related to a health condition and stigma related to race, gender, or other characteristic are felt together by an individual. There are multiple factors that can drive intersectional stigma, which include stereotypes, cultural norms, lack of awareness, and prejudice. Stigma manifestations can impact outcomes, including access to care, uptake of testing, adherence to treatment, self-efficacy, social and legal protections, and quality of healthcare [ 21 ].

Data analysis was an iterative and continual process of collecting data, open coding, comparison, deductive reasoning, and thematic analysis. Data was managed and analyzed within MAXQDA software. Codes were generated inductively by reading and analyzing each transcribed interview. Themes were derived from but not limited to The Health Stigma and Discrimination Framework. One primary coder independently coded each interview transcript. A second coder analyzed 1 out of every 4 transcripts independently. The research team, which included individuals trained in qualitative analysis, reviewed and provided feedback on the emerging codes and themes within the transcripts. Coder 1 and Coder 2 met to cross-check and discuss codes, themes, interview experiences, and resolve analytic challenges before data analysis was complete. The researchers followed The COnsolidated criteria for REporting Qualitative research (COREQ) to ensure rigor and reliability [ 22 ]. The researchers were also guided by Williams and Morrow’s pan-paradigmatic perspective on achieving trustworthiness in qualitative research [ 27 ].

Participants

Fourteen patients were interviewed for this study representing diverse perspectives (Table  1 ). Over half were women and nearly all self-identified as Black/African American. Participants were diagnosed with cardiomyopathy at an average age of 30.4 years (range: birth to age 55). Most had hypertrophic cardiomyopathy, although other types were also represented.

Participants’ experiences

Eight of the fourteen participants reported experiencing stigma manifestations (discriminatory behaviors) during their cardiology care based on their attributes (race, weight, and/or age). Six of the fourteen participants reported experiencing stigma manifestations during their cardiology care specifically based on their race.

Seven participants had completed genetic testing, but only two of those seven had completed an appointment with a certified genetic counselor (Fig.  2 ). Two participants met with a certified genetic counselor but declined genetic testing.

The participants described variable experiences with stigma and discrimination in cardiology care and genetic services. The data align with The Health Stigma and Discrimination Framework and were summarized into drivers and facilitators of stigma, intersectional stigma, and stigma manifestations (Fig.  3 ).

Genetic testing and/or genetic counseling following cardiomyopathy diagnosis

Themes and Subthemes

Drivers and facilitators of stigma

Interviews revealed providers’ lack of awareness as a factor that enabled stigma to develop (driver) and cultural norms as a factor that contributed to continuation of stigma (facilitator).

Providers’ Lack of Awareness

One participant recounted how lack of awareness of dermatologic findings on darker skin impacted her health.

I remember how my mother used to fuss at me. She would tell me that I was not bathing correctly, that I was not washing my neck, and I was washing my neck. It’s just that my neck has always been dark. My inner thighs have always been dark, and my underarms have always been darker than the rest of my body. And that’s why the doctor at the diabetes clinic said that I have actually always been diabetic… and he is the first and only person that has ever said that to me. And, it very well could have been one reason for the heart failure, that I possibly lived with diabetes uncontrolled all this time.

Her past providers’ lack of awareness of dermatologic findings on darker skin may have been a driver of stigma. She described signs of acanthosis nigricans in childhood, which is indicative of diabetes, and reported that no providers had previously mentioned diabetes until she was already diagnosed with cardiomyopathy at the age of 36. The lack of awareness of Black dermatologic findings may have resulted in lack of proper workup for diabetes at a younger age, which delayed diagnosis, decreased her access to diabetic care, and resulted in worse cardiac outcomes.

Cultural Norms

Another participant described how her upbringing, specifically that she was raised to not voice complaints, resulted in her silence during a physically painful medical encounter.

I just felt like, “Why are you so uncomfortable with me? I’m sitting here, and I really can’t do anything. I can barely move. Why would you not be gentle with me?” But I would never say that because I don’t feel like I can.… The way I was raised is… if someone is not great to you, we don’t talk about it or you kind of suppress it. You push it down… I just didn’t even acknowledge them just because that’s the way I’m programmed in my head… It’s just unfortunate… You can’t help but feel like it’s attributed to your race.

This participant’s experience exemplifies how her culture and social norms influenced her reaction to stigma. Her upbringing made it feel inappropriate to comment on or report the stigma manifestation (physical roughness). This account highlights that there is a known power dynamic between clinicians and their patients that may exacerbate patients’ ingrained cultural norms and facilitate stigma.

Stigma manifestations

The participants described a wide-range of experiences with stigma manifestations during their care.

Stereotyping

Several participants spoke of negative encounters with providers and support staff that centered around inaccurate stereotypes. These participants reported stereotyping that has historically been experienced by Black people more than other races, particularly stereotypes related to sexual promiscuity, substance abuse, and inability to pay for services.

One participant experienced providers’ assumptions of risky sexual behaviors and promiscuity, which she perceived as offensive stereotyping.

I thought I was pregnant. [The cardiologist] told me that I need to be using condoms, like Black people just go around here not using protection… And I do use [condoms], even if I have been dealing with the same person for 10 years. Black people don’t just go around here having sex all day and all night and whatever the case may be unprotected… And it made me view her and look at her in a whole different light… That offended me and affected me so bad to where I was embarrassed, and I’m even embarrassed now… Can I trust to go to a clinic?… Because I already have trust issues with people just in general. Now I’m getting to where I can’t even trust to go to the doctor… [Providers] say certain things to people of color that they probably wouldn’t say to someone like you [white interviewer].

The participant also shared that the provider did not ask about her birth contraceptive methods before progressing to education about condom use. The participant reported she had no opportunity to further explain before being lectured about unprotected sex. This stereotyping led to the participant’s embarrassment and distrust in the provider. This made the participant question whether it was worth it to go to future appointments and regular check ups. This stereotyping also resulted in the participant anticipating future discrimination, which led to hesitation about future health communication.

Another participant reported an experience when he presented to the emergency room.

They were looking at me like, “Okay, he’s just trying to get drugs”… Someone that’s constantly sick and that’s just skinny for no apparent reason, automatically you go to assume, “Hey, he’s probably a crackhead” without really actually knowing the person you’re dealing with… You get judged on what they see before.

This encounter exemplifies intersectional stigma because racial- and weight-related stigmas were felt at the same time by this patient. The providers’ stigma manifested as stereotyped thinking that he was drug-seeking and disbelief that he was experiencing real symptoms. There was a reciprocal lack of trust between the patient and provider. These stigma manifestations affected clinical outcomes by inhibiting his access to quality care at the ER and delaying diagnostic testing and medical intervention.

Another participant also experienced stereotyping in her care. She described a telephone encounter with scheduling staff who made assumptions, which limited her access to care.

…I assume that they think that I may be from a different culture because my name is not typical. I was a little bit upset because I had agreed with my cardiologist that for cardiology care I’d go every six months… I was reviewing my list that was given to me of when the next appointments are. I called [the scheduler], and I was like, “This is not correct because I’m supposed to go every six months, not every year to the cardiologist…” Then the scheduler told me, “I’m not sure if you can afford this. You already have a lot of other appointments with our other care teams. So this is what we want to give you.“ And I’m thinking to myself, “How can you jump to so many conclusions?”… That was really off putting for me… Why am I fighting for care?

This participant perceived that the scheduler made assumptions based on the demographic information listed in the chart. The stereotyped stigma manifestation was that the scheduler assumed she was unable to afford cardiology appointments every six months. This inhibited her ability to adhere to her cardiologist’s medical recommendations.

Another participant described a negative experience during family history discussion.

I don’t even know if I want to go back to see that genetics counselor.… She’s like asking me how many kids my mom had. And I said three. And then she asked me, “Well, do all of y’all have the same dad or different dads?” Black people do not have all different baby daddies or whatever…we all have the same dad, all three of us…I know they have to know all this stuff for genetic reasons, but I just feel like the questions and the way they were asking was very inappropriate or offensive stuff. I felt like even if you feel a certain kind of way, try to clean it up a little bit, don’t make it seem so obvious that’s how you feel.

She perceived that the provider assumed her mother may have conceived children with multiple men, which is historically a stereotype associated with Black families. This led to hesitation towards returning to the genetic counseling clinic in the future; this stereotyped interaction is a barrier to her future care.

Inadequate Patient-Provider Communication

Multiple participants voiced concerns about inadequate provider communication and providers withholding diagnostically-relevant information.

One participant reported a provider withheld important information about her positive genetic results that revealed a pathogenic variant in the TTR gene.

[The cardiologist] did the genetic saliva test, and she told me this was harming. [The cardiologist] was like, “You have a disease that old people get.“ Well, I didn’t know what that meant. So [the cardiologist] was like, “Well, we won’t discuss that until you start having the symptoms.” She never told me the name of it. I started having this tingling in my hands and feet. That’s when I told her. [The cardiologist] had me come in, and then she told me about TTR symptoms.

This provider withheld information about her genetic results for 11 months. Age-related stigma manifested as poor provider communication and education about the genetic test result. This inhibited the patient’s ability to understand the implications of her genetic results, adapt to potential risks, and make informed decisions about her healthcare and family planning. She was also unable to share the genetic results with at-risk relatives. Additionally, in the absence of an early discussion about ATTR-CM, the patient couldn’t know that the tingling she felt was related to TTR cardiomyopathy. The lack of communication about genetic results meant this participant was at risk for delayed symptom identification, which could delay access to targeted medications and impact health outcomes.

One participant detailed how inadequate provider communication can foster distrust.

[The cardiologist] didn’t do a good job explaining the symptoms. I think they didn’t do a good job explaining treatment… I just don’t think that doctor did a good job explaining the seriousness of it… I just don’t trust doctors there… I didn’t think that they were concerned about my overall health… I probably say [racial stigma] has a little play into it. I couldn’t say to what degree. But I would probably say [racial stigma] contributed.

This participant stated the provider didn’t adequately explain the potential morbidity of the condition and treatments he was undergoing. This led the participant to lose trust in the provider and question if the provider genuinely cared about his health. He states that he perceives this as a racial stigma manifestation.

Another participant did not recall that genetic testing had ever been ordered. When asked what he believed caused his heart problem, he voiced his confusion.

Well, at one point I thought [the cardiologist] may have told me it could have been hereditary. Then they came back and said, “No, it’s not necessarily hereditary.“ So I really don’t know… [Silence] What do you mean genetic test?… I’m assuming that when you say genetic, are you saying in reference to other family members or just checking my blood? Its breakdown?

A chart review revealed he had a pathogenic variant in the TTR gene that contributed to his diagnosis of ATTR-CM, and he had never been referred for genetic counseling. A referral to a certified genetic counselor could have helped this patient cope with the diagnosis and improve understanding of his genetic results. Of note, this participant has living children and siblings, who would each have a 50% chance of inheriting the causative genetic variant. It is unclear if the relatives have been informed of their genetic risk.

Physical Roughness

A few participants shared their experiences with providers who were not gentle during care. These participants perceived providers’ racial stigma as the motivation behind the painful encounters.

One participant described her experience in recovery after her implantable cardioverter defibrillator (ICD) surgery when a provider was physically rough during their care.

The person basically ripped the bandaid off of my skin, where my new suture was. It left a scar… I was in so much pain when the person did that. I was honestly afraid that it would detach my sutures with how they just ripped it off… and I have the scars. I keep getting frustrated because I shouldn’t have that scar… The care teams I see on a regular basis, I love them… It’s just most one-offs that happen… You can’t help but feel like it’s attributed to your race.

This participant perceived the provider’s internal racial stigma led to the external stigma manifestation of physical roughness during this interaction.

Another participant described his nurses having difficulty locating a vein during a blood draw.

They just kept sticking and sticking. It was a bit uncomfortable for me. I mean, I realized they had to do it, but it’s just a bit uncomfortable for me… Maybe they felt like I should be a little bit tougher due to my race, with the needle poking, because that’s been something that’s floated out there, that African-Americans can tolerate and have a higher threshold for pain. So that could have been some reasoning behind why they were doing what they were doing .

His perception that nurses may perceive Black people as having a higher pain tolerance is backed by research. Recent reports found that medical personnel believe Black people feel less pain than white people [ 8 ].

“I feel like I’m just another number”

Some participants conveyed that they felt provider stigma contributed to impersonal and rushed appointments.

One participant describes his perception of how his race has played a role in his quality of care, specifically during urgent care or emergency room visits.

You feel like they in a hurry to get rid of you, so they can get to somebody that they care more about. I know that doesn’t make sense, but it’s that way sometimes.

This participant has experienced feeling like he wasn’t given adequate time and attention because of providers’ racial stigma.

Another participant describes how this feeling during appointments affects her ability to stay hopeful throughout her long-term cardiology treatment plans.

There are times when I feel like I’m just another number. I understand I am not the only person with heart failure, but whenever you’re in front of your doctor, you want to feel like right now I’m the most important person, and let’s try to figure it out together… Sometimes it’s depressing. Sometimes I feel like giving up… I felt like I was going to die, that it was over for me, that [the providers] weren’t even trying anymore… And so when [the nurse practitioner] said to me, “We’ve done all we can do"… I don’t think she would have said that to someone else in the white race.

She perceived the nurse practitioner’s internal racial stigma led to impersonalized care and lack of concern. Of note, after this participant transferred care to a new provider, who she perceived is less discriminatory, her feelings of hopelessness subsided. This participant reported she is now satisfied with her new care team, and she believes her current provider cares about her well-being and quality of life.

Coercion, Provider Too Directive

Some participants described ways in which they felt their cardiology team pressured them to complete research or interventions that they did not wish to pursue.

One participant described a provider who tried to enroll him in research during his care, even after he had declined the offer at previous cardiology visits.

[The cardiologist] wanted me to participate in a study, but I refused that… I didn’t want to be a Guinea pig… I think [the cardiologist’s] intentions are well, but she likes to try to put you into a study… she tries to push a lot of those research… I know of history where African-Americans have been experimented on, but that wasn’t a factor in my thinking. I just didn’t see the value in [the study].

Another participant described her perception that a provider was coercive in counseling about the benefits and risks of ICD surgery.

I’m glad I didn’t do [the ICD surgery] because I’m getting treated with medicine. [The doctor] was leaning more to do that surgery within the next couple of months, and I was like, no… I never got the procedure done. It was like, give me a chance. [The same doctor] said, “The medicine can treat you.“ I think the medicine is doing very well for me.

This patient felt pressured by the cardiologist to undergo ICD surgery in the near future, but the patient wanted to continue using medication to slow the progression of ATTR-CM. Explicit stigma wasn’t described within this particular interaction, but the conversation emphasized a lack of shared decision making.

Impact of stigma manifestations

As these examples illustrate, stigma manifestations had a potentially significant impact on clinical and patient outcomes (Table  2 ). More than one third of the participants experienced decreased access to care and services as a result of stigma manifestations in the clinic. Four participants discussed a lack of trust in their relationship with the providers. Two participants specifically reported their distrust led them to question or reject medical recommendations made by that provider. Another participant intended to follow medical recommendations, but stigma manifestations created barriers to care. About one fifth of participants reported provider stigma that delayed diagnosis.

Stigma manifestations when interacting with providers and support staff also impacted participants’ emotions. Four participants shared that their emotions were negatively impacted by stigma manifestations, and they felt depression, hopelessness, frustration, and/or humiliation. Two participants reported that frustration and humiliation coincided during experiences with stigma.

Four participants experienced stigma manifestations that negatively impacted three or more outcomes. Of note, one participant experienced six out of the seven negative outcomes reported. This participant reported experiencing significant discrimination in multiple interactions with providers and support staff related to her race, which decreased her trust in providers, decreased her adherence to medical recommendations, and decreased her access to care and services. She stated these interactions with providers contributed to frustration, hopelessness, and humiliation.

This study aimed to explore Black cardiomyopathy patients’ experiences with intersectional stigma manifestations throughout cardiac-related healthcare and genetic services. The goal was to help close the gap in the literature by identifying some drivers of stigma and describing how stigma manifestations are perceived by the minority patient population.

The participants’ reports aligned with the process illustrated by Stangl’s Health Stigma and Discrimination Framework (Fig.  1 ). Participants reported that provider stigma was perpetuated by patient cultural norms. Participants also reported that providers’ stigma (particularly regarding the participants’ age, weight, and skin color) manifested as stereotyping, inadequate communication, physical roughness, impersonal care, and coercion.

There was high variability between participants’ reports of intersectional stigma. Every participant had distinct experiences with providers and unique interpretations of the stigma manifestations that occurred, which highlights the need for individualized, compassionate care and provider empathy in every appointment. Over half of the participants in this study reported experiencing discrimination in cardiology care and/or genetic services. These findings parallel statistics published in a recent quantitative study with a larger sample size that estimated 54% of Black patients in America experienced intersectional discrimination in healthcare [ 15 ].

The participants in this study reported that stigma manifestations impacted clinical and patient outcomes (Table  2 ). Some participants were fearful of future medical appointments due to anticipated stigma based on past interactions with providers. Some participants’ access to care and services were limited by the medical staff’s internalized stigma that manifested externally as discriminatory behaviors, such as disbelief of symptoms and perceptions of inability to pay for services. Inadequate communication between the provider and patient was reported in multiple interviews, and these reports correlate with previous publications. A systematic review of observational and patient-reported data concluded that Black patients received lower quality patient-physician communication than other races. The systematic review also showed that physicians share less information with Black patients compared to patients of other races [ 20 ].

Participants in this study also described their distrust in cardiology providers for a variety of reasons, which sometimes led to patients being unwilling to follow providers’ medical recommendations or return for follow-up. Many participants described emotional outcomes and dissatisfaction after facing stigma manifestations, particularly depression, frustration, and humiliation. The data align with past research that asserts stigma affects outcomes. Over a decade ago, Greer described racial stigma manifestations in cardiovascular healthcare that led to patients’ medical distrust, lower appointment attendance, and nonadherence to medical recommendations [ 7 ]. Our data align with Greer’s findings and support the assertion that these processes are still occurring today. Additionally, our study adds to Greer’s findings by contributing data about intersectional stigma manifestations and stigma manifestations related to genetic services.

Some participants also reported provider coercion or pressure to consent to research or elective surgical procedures. A systematic review of observational studies showed black patients spoke and engaged with providers less during appointments compared to white patients. Black patients also had less participation in decision-making than white patients during appointments [ 20 ]. Our data and the systematic review suggest that a patient’s lack of engagement in an appointment may be driven by engrained familial, cultural, or societal norms rather than lack of interest in shared decision-making. Therefore, providers should encourage Black patients to speak freely and ask questions. A conscious effort should be made to allow Black patients to make autonomous decisions free from coercion when planning healthcare management and when consenting for research.

Participants, both those who experienced discrimination and those who did not, voiced awareness of past racial injustices in healthcare. During interviews, several participants mentioned historical differences in care for Black patients compared to white patients, such as unethical research practices, increased physical roughness during care, and discriminatory access to health care. Previous studies have also shown that Black patients are aware of generalized physician bias and racial health disparities in America [ 10 , 25 ]. To reduce these biases, all staff could benefit from education about the commonly-held false beliefs about Black patients’ pain tolerance and other biological falsehoods.

This study also highlights the value and importance of genetic counseling for cardiomyopathy patients and their families. The majority of participants who received genetic testing did not meet with a certified genetic counselor despite access to one at their institution (Fig.  2 ). The American Heart Association, The American College of Cardiology, The European Heart Rhythm Association, and The Heart Failure Society of America support the inclusion of genetic counseling in cardiomyopathy care and recognize the positive impact [ 23 ]. If genetic counseling is not accessible for a patient, an appointment with the ordering provider should be scheduled to discuss the genetic results. This dedicated time allows the patient to better comprehend implications and discuss strategies for informing at-risk relatives. To improve patient retention of information, providers can employ the teach-back method. The teach-back method asks the patient to repeat back a brief summary of results and share any takeaways they have, which helps providers identify gaps in understanding [ 26 ].

It is common practice to inquire about and document a patient’s ancestry or ethnicity and any consanguinity within the family [ 9 ]. Typically providers ask these questions while gathering family history information or during genetic risk assessment to predict which genetic conditions or inheritance patterns are more likely. However, genetic test options and medical care are typically unchanged regardless of a cardiomyopathy patient’s answers to these questions. Therefore, physicians and genetic counselors should consider if it is clinically relevant to ask about a patient’s ancestry or consanguinity. This information can be gathered if it will influence which genetic test is ordered or other medical management. If it is necessary to gather this information, providers should consider providing an explanation of why these questions are necessary before asking. Offering an explanation for probing questions can also be useful before assessing genetic relationships (e.g., half versus full siblings) or evaluating clinical risk factors. If the patient’s ancestry or consanguinity won’t change medical care, providers should not ask these questions.

Although not a primary focus of this study, some participants reported they had experienced health-related stigma and intersectional stigma in other settings, such as romantic relationships, friendships, family gatherings, airport security, police encounters, real estate purchases, and employment. This raises the question of whether experiences in society influence perceptions and outcomes of clinical interactions, but further research is needed to clarify this interplay between environments.

Strengths and limitations

This exploratory study provides nuanced qualitative insight into the intersectional stigma experienced by Black patients during cardiomyopathy care at one major academic medical center. The sample includes participants with a range of ages and equal representation from both male and female genders to elicit any age-based or gender-based stigma. To avoid influencing participant responses, the interviewer did not mention race or discrimination until the last question of the interview. The interviewer asked probing questions about race or discrimination only after a participant raised the topic. The interviewer frequently summarized participant stories and emotions during interviews, so the participants were able to confirm or correct the interviewer’s understanding. However, participants were recruited exclusively from one academic medical center in the southeastern United States and cannot represent the full breadth of healthcare experiences among Black cardiomyopathy patients. Furthermore, many of the participants emphasized that their negative experiences did not take place at their current medical institution, and it was not always clear when or where the events occurred. Additionally, the inclusion/exclusion criteria limited the sample population to patients who were English-speaking and had access to phone or internet services, further limiting generalizability. There is also bias because a white researcher conducted interviews and analyzed transcripts of Black participants. To acknowledge and reduce this bias, the interviewer met with the research team after some of the interviews to discuss any shock, defensiveness, and general impressions. The interviewer also journaled about any countertransference or other reactions to identify any unconscious bias. This study does not include the healthcare providers’ perceptions of the interactions shared by participants. This study does not speculate whether these stigma manifestations arise from conscious or unconscious biases of medical staff.

Future directions for research include multi-institutional collaboration with a greater number of participants. More research is needed to determine if these results are generalizable to a broader population. Additionally, study of providers’ motivations and experiences with health equity in cardiomyopathy care would improve our understanding of this space.

Black cardiomyopathy patients in this study described the intersectional stigma manifestations experienced in their cardiology care. Provider bias and stigma manifested most overtly as stereotyping, inadequate communication, physical roughness, impersonal care, and coercion. These stigma manifestations negatively impacted patient and clinical outcomes. This study suggests clinical improvements that can assist health professionals in providing culturally-competent and respectful care for Black cardiomyopathy patients. This data can inform patient-provider communication, clinical policies, and evidence-based practices in cardiology care and genetics.

Implications for clinical practice

It may be beneficial for cardiologists to place a referral to genetic counseling before genetic testing is ordered for Black cardiomyopathy patients. This ensures the patient is informed and has considered benefits and limitations before electing genetic testing. A genetic counselor would also disclose results in a thorough and timely manner and can streamline cascade testing for relatives. The United States directory is available at www.FindAGeneticCounselor.com . A similar directory for other countries may be useful.

If genetic counseling is not accessible, an appointment with the ordering provider should be scheduled to discuss the genetic results. This dedicated time allows the patient to comprehend implications and discuss strategies for informing at-risk relatives. Providers can use the teachback method to ensure the patient understands results before leaving the appointment.

Black cardiomyopathy patients experienced discrimination from other healthcare staff in addition to providers. Training about compassionate care, stereotyping, and microaggressions should be completed by all employees who interact with patients and patient data.

Genetic counselors and other providers should consider if it is clinically-relevant to ask any patient, regardless of race, about their ancestry and possible consanguinity. This information can be gathered if it will change the test ordered or medical management. Consider providing an explanation of why these questions are necessary before asking.

Some participants reported depression and hopelessness. Regular mental health and psychosocial assessment is warranted for this population. Resources and counseling can be provided depending on patient needs.

Healthcare facilities should integrate tenets of health equity and diversity into their institutional policies. Policies can include guidance for training, expectations for service, and potential disciplinary measures.

Data Availability

The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.

Abbreviations

Transthyretin Amyloid Cardiomyopathy

Dilated cardiomyopathy

Hypertrophic cardiomyopathy

Implantable cardioverter defibrillator

Sudden cardiac death

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Acknowledgements

The authors thank the participants for their time and vulnerability when sharing their experiences. This research would not be possible without them. Thank you to the Vanderbilt Master of Genetic Counseling Program for providing support during this study.

This study was funded by The Vanderbilt University Master of Genetic Counseling Program.

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MW, KA, and LB devised the protocol and data collection methods. MW collected the data. MW and KA analyzed the data. KA, GH, LB, and MR were subject matter experts who provided societal and clinical perspectives related to emerging codes and the framework. MW drafted the manuscript. KA, LB, MR, and GH provided input on the manuscript. All authors read and approved the manuscript.

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Correspondence to Morgan Wolfgang .

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Wolfgang, M., Beskow, L., Hooker, G. et al. Stigma manifestations in cardiomyopathy care impact outcomes for black patients: a qualitative study. BMC Cardiovasc Disord 23 , 553 (2023). https://doi.org/10.1186/s12872-023-03556-6

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• Cardiomyopathy
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• Racial disparity

BMC Cardiovascular Disorders

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Positive Health and the happy professional: a qualitative case study

• Caro H. C. Lemmen 1 ,
• Gili Yaron 1 ,
• Rachel Gifford 1 &
• Marieke D. Spreeuwenberg 1  

BMC Family Practice volume  22 , Article number:  159 ( 2021 ) Cite this article

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Primary care professionals (PCPs) face mounting pressures associated with their work, which has resulted in high burn-out numbers. Increasing PCPs’ job satisfaction is proposed as a solution in this regard. Positive Health (PH) is an upcoming, comprehensive health concept. Among others, this concept promises to promote PCPs’ job satisfaction. However, there is limited research into PH’s effects on this topic. This study, therefore, aims to provide insight into how adopting PH in a general practice affects PCPs’ job satisfaction.

An ethnographic case study was conducted in a Dutch general practice that is currently implementing PH. Data collected included 11 semi-structured interviews and archival sources. All data were analyzed thematically.

Thematic analysis identified three themes regarding PCPs’ adoption of PH and job satisfaction, namely [1] adopting and adapting Positive Health, [2] giving substance to Positive Health in practice, and [3] changing financial and organizational structures. Firstly, the adoption of PH was the result of a match between the practice and the malleable and multi-interpretable concept. Secondly, PH supported PCPs to express, legitimize, and promote their distinctive approach to care work and its value. This strengthened them to further their holistic approach to health and stimulate autonomy in practice, with respect to both patients and professionals. Thirdly, the concept enabled PCPs to change their financial and organizational structures, notably freeing time to spend on patients and on their own well-being. This allowed them to enact their values. The changes made by the practice increased the job satisfaction of the PCPs.

Conclusions

PH contributed to the job satisfaction of the PCPs of the general practice by functioning as an adaptable frame for change. This frame helped them to legitimize and give substance to their vision, thereby increasing job satisfaction. PH’s malleability allows for the frame’s customization and the creation of the match. Simultaneously, malleability introduces ambiguity on what the concept entails. In that regard, PH is not a readily implementable intervention. We recommend that other organizations seeking to adopt PH consider whether they are willing and able to make the match and explore how PH can help substantiate their vision.

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In response to the negative impact of high burn-out numbers, healthcare organizations and policymakers are increasingly showing interest in professional well-being, particularly in primary care [ 1 , 2 , 3 , 4 , 5 , 6 ]. Accordingly, research into professional well-being has surged. Whereas earlier scholarship focused on job dissatisfaction and burn-out, studies now mostly focus on such concepts as job satisfaction, joy in practice, and job enjoyment [ 4 , 7 , 8 ]. This article will focus on job satisfaction, as this term is used most in the research literature.

Positive Health (PH) is a prominent, upcoming health concept comprising six dimensions relevant to experienced health (Fig.  1 ) [ 10 ]. PH operationalizes the new description of health proposed by Huber and colleagues in 2011 [ 11 , 12 ]. According to this description, health is “the ability to adapt and self-manage in the face of social, physical, and emotional challenges” ([ 12 ], p1). In the last decade, Huber and others have worked towards developing tools for the concept’s implementation, most notably through the institute for Positive Health established in 2015 [ 9 , 11 , 13 ]. The most prominent application is a dialogue tool (‘the spiderweb’) intended to guide interactions between health professionals and patients.

The six dimensions of Positive Health are visualized in ‘the spiderweb’ From: The institute for Positive Health [ 9 ]

Recently, several Dutch policymakers, professionals, and organizations have adopted PH as a promising way to tackle several issues in healthcare. The concept is praised for its promise to support patient autonomy, incorporate aspects of life beyond bodily functions in patient care, and promote cooperation between different fields, such as healthcare and welfare. Additionally, proponents emphasize PH’s potential to increase professionals’ job satisfaction [ 14 , 15 , 16 ]. This is linked to the concept’s purported effect on their autonomy and work-related meaningfulness. Opponents have criticized the concept for its vague boundaries, limited added value to the profession, and potential to increase health inequalities [ 17 , 18 , 19 , 20 ].

Meanwhile, the dearth of studies exploring the implementation of PH in practice makes it difficult to grasp the concept’s impact on job satisfaction. At present, there are a number of anecdotal reports by Dutch primary care professionals (PCPs) on PH’s positive effect in this regard [ 13 , 14 , 21 ]. In the context of a general practice, one recent study showed that working with PH, in combination with longer consultations and less patients per general practitioner (GP), led to more job satisfaction [ 22 ]. The present article aims to help fill this hiatus. Drawing on an ethnographic case study into the experiences of PCPs who work with PH in a general practice, it provides further insight into the concept’s effect on PCPs’ job satisfaction. Before we detail our methodology and discuss our results, it is prudent to first offer an overview of primary care in the Netherlands and of the literature on job satisfaction.

Primary care in the Netherlands

General practices play a central role in Dutch primary care and healthcare in general because of their gatekeeping function [ 23 , 24 ]. These practices have seen major reforms in the last 15 years. In 2006 a system of managed competition was introduced for curative care, which means that health insurers contract general practices for the provision of care. Moreover, general practices have received more responsibilities, including provision of certain specialist care tasks, mental health support, and coordination of community care [ 22 , 23 , 25 ]. As most Dutch general practices are owned by a partnership of GPs which employs other PCPs, these changes emphasized the role of GPs as both physicians and entrepreneurs [ 23 , 24 , 25 ].

These changes have had a major impact on PCPs’ work. Firstly, business thinking and practices, such as efficiency indicators and standardization through protocols, have entered primary care [ 26 , 27 , 28 ]. Professionals have been resisting these changes, as they challenge professional autonomy and occupational control of work that defines professionalism [ 26 , 27 , 28 , 29 , 30 ]. Additionally, multidisciplinary collaboration within and beyond the general practice has become increasingly important to cope with the additional care tasks [ 23 , 24 , 31 ]. This has also led to a shift in responsibilities from the GP to other PCPs. For instance, general practice-based nurse specialists have taken over tasks such as care for chronic conditions and mental health support [ 24 , 25 , 32 ]. Therefore, PH’s promise to integrate different fields (and thus ease collaboration between PCPs) and to increase professional autonomy corresponds with challenges in the changing primary care environment [ 15 ].

• Job satisfaction

Research into job satisfaction is heavily influenced by Herzberg’s two factor theory. Herzberg and colleagues hypothesized that factors intrinsic to the content of the job, such as received recognition, autonomy, and personal growth have a positive influence on job satisfaction. By contrast, a deficiency in factors extrinsic to the actual work, such as interpersonal relationships, working conditions, salary, organization policy, and administration are assumed to decrease job satisfaction [ 33 , 34 ]. Several studies into job satisfaction of PCPs confirmed these hypotheses [ 4 , 35 , 36 , 37 , 38 ].

The divide between intrinsic and extrinsic factors can also be seen in the literature on physician well-being interventions. Examples of extrinsic interventions are workflow improvements, individual resilience courses, or communication training [ 39 , 40 , 41 ]. Interventions focusing on intrinsic factors aim to create joy through meaning-making, defining joy as a “feeling of success and fulfilment that results from meaningful work” ([ 8 ] p608). To engage professionals, authors propose helping them reflect on their professional identity via questions such as: ‘why did you choose this profession?’ or: ‘what calls you to practice?’ [ 35 , 42 , 43 , 44 ]. Consequently, part of PH’s appeal is that it explicitly includes meaning-making as one of its six dimensions for both patients and professionals. Several healthcare providers reported that PH helped them find meaning in their work [ 15 , 42 , 45 ], however the impact of PH on meaning-making by professionals has not yet been empirically studied.

Research aim, design, and setting

This article is based on an ethnographic case study into how the adoption of Positive Health affected primary care professionals’ job satisfaction. The present study focused on one general practice that was implementing PH. All twelve staff members were asked to participate in the study to explore how PH affects the various professions, interprofessional relationships, and practice as a whole. In order to gain an in-depth understanding of PCPs’ experiences, the first author collected archival material and conducted qualitative online interviews with PCPs.

Data collection

Archival materials collected included documents associated with the implementation of PH in the general practice, the general practice itself, and the history and development of PH. These documents included, among others: minutes from team meetings, internal management documents, communication between the practice and the health insurer, the website of the general practice, and newsletters. Documents selected for inclusion were written either in Dutch or English.

Interviews took place in April and May 2020 and the researchers employed a semi-structured approach. This allowed for flexibility in pursuing an interviewee’s experiences, while ensuring that all topics were addressed [ 43 ]. To this end, the researchers constructed an interview guide to cover the implementation of PH, job satisfaction, and professionalism (Additional file 1 ) [ 43 ]. Before the start of the interviews, the first and second author met with the practice manager and GPs to ensure transparency and align mutual expectations. Interviews were carried out via a licensed version of Zoom Video Communications, Inc. and once by phone, considering safety measures taken in response to the COVID-19 pandemic. All interviews were audio recorded. To increase the reliability and validity of the study, the researchers made use of member checks by offering the participants a summary of their interview [ 44 ]. Written informed consent for publication was obtained from all participants.

The interviews were carried out by the first author. At the time of the study she held a Bachelor of Science degree and was a master’s student at Maastricht University, as well as a medical student at Utrecht University. She had limited experience with respect to interviewing. To ensure the quality of the project, the entire process was supervised and guided by the second author, a senior researcher at the department of Health Services Research of Maastricht University. She is an experienced qualitative researcher with expertise in healthcare humanities and science & technology studies.

In total, approximately 270 pages of material on this general practice, and 250 pages on the history and development of Positive Health were analyzed. Eleven out of the total of twelve primary care professionals were able to participate in the interviews (Table 1 ). One employee declined because of personal circumstances and upon request the personal data of one respondent will not be disclosed. The interviews lasted on average 58 min. Each participant was interviewed once. Ten participants were present in the workplace during the interviews, one participated from home. The interviewer was based at her home. No non-participants were present during the interviews. The interviewer took notes during and after the interview. Interviews ended when all participants were included.

Data analysis

Analysis was conducted iteratively by the first, second and third author. In analyzing interviews and documents, the researchers followed an inductive approach using the thematic analysis guide of Braun and Clarke [ 46 ]. NVivo 12, a qualitative analysis software program, was used to keep track of the analysis. Thematic analysis consisted of an iteration of three phases of coding, namely open, axial, and selective coding [ 46 ]. During the coding process, the first and second author regularly discussed the proposed codes and themes to reach consensus. The third author aided the first and second author in establishing themes and subthemes. The COREQ checklist was used when writing this report (Additional file 2 ) [ 47 ]. The results were presented to the participants, who recognized themselves in the analysis.

Results: Positive Health as an adaptable frame for change

Thematic analysis identified three themes regarding the adoption of Positive Health and primary care professionals’ job satisfaction, namely [1] adopting and adapting Positive Health, [2] giving substance to Positive Health in practice and [3] changing financial and organizational structures. Theme 1 describes how the adoption of PH in this practice was the result of ideology, strategy, and favorable circumstances. It also discusses the multi-interpretability and malleability of PH. Adopting PH enabled PCP’s to better express, legitimize, and promote their values of holism and autonomy. These values were not only prominent in patient care, but also in the attitude of professionals towards each other, which is addressed in theme 2. This supported them to align everyday conduct with how they envisioned their profession, which increased their job satisfaction. Next, theme 3 depicts how the practice changed its financial and organizational structures upon adopting PH. Consequently, PCPs could invest more time in their patients and in their own well-being. They, were, thus, able to further their vision in practice. These changes contributed to their job satisfaction. In this way, PH functioned as an adaptable frame for change in the general practice. The following pages will unpack this conclusion. An additional data table with quotes is provided in Additional file 3 .

Adopting and adapting Positive Health

Most respondents considered the adoption of Positive Health to be a minor change from former ways of working, since PH fit the vision of the practice well. However, several respondents explained that precisely this match made the adoption of the concept possible. In addition, PH provided the practice with a new frame to express and legitimize its comprehensive approach to healthcare. At the same time, the respondents offered different interpretations on what the concept entailed and the practice adapted the concept to its needs in several ways. This section will further unpack how the practice adapted itself to adopt PH, and adapted the concept while adopting it.

It’s a match!

Document and interview analysis showed that the introduction of PH in this practice was the result of ideology, strategic considerations, and fortunate circumstances. The current practice owners dissociated from another general practitioner in 2015 due to a personal conflict, different ideas about the role of the GP, and other styles of practicing. The newly emerged practice aimed to interact with patients on a more personal level, to approach them holistically, stimulate their self-reliance, and to be part of the community. One GP described the role the practice aspires to fulfill in the community:

I would also like it if [the villagers] just say: ‘it’s a place where I like to go (…) that general practice, you can do everything there (…) you should go there to talk about your stairlift or about your cleaning service, or depressed spouse’, and that we don’t immediately say: (…) ‘that’s not the job of the GP’, but that we say: ‘come let’s look at it together’ and of course immediately involving (…) [our] network. (R11, GP)

In pursuing this vision, the practice made several changes. For instance, they created a volunteer-run vegetable garden and raised the minimal consultation time from 10 to 15 min to create more time for the patients. With this, the practice owners aimed to create more joy Footnote 1 in their work, as this nurse specialist explained:

They made the choice a couple of years ago themselves, also because of their job enjoyment, to do things differently. So they conscientiously chose to spend more GP hours than they formally could according to the guidelines, in order to have more job enjoyment and more time for the patient. (R4, nurse specialist)

The practice’s alternative way of working was met with interest from a health insurer that was looking to experiment with Positive Health as a new health concept. Conversations between the practice and health insurer started in 2017, followed by the practice adopting the concept of PH. This helped the practice to express and legitimize its new approach to care work:

[Y]ou can say ‘we’re working in conformity with Positive Health.’ ‘Oh right, I have quite a good picture of what that entails at yours then.’ Plus, it can be an argument to partners and financiers to get done what you want. (R10, nurse specialist)

In 2019 a pilot project under the flag of PH started between the practice, the insurer, and the municipality. One of the goals of the pilot project was to improve job satisfaction, which prompted this study. Theme 2 and 3 will provide further detail on how the practice implemented the concept.

Interestingly, some participants pointed out that this match between a general practice and PH is not self-evident. One of the GPs explained why the concept is not a fit for everyone:

There are also a lot of people who would not like this at all. They say, that’s just drivel, that’s not at all family medicine. But well, I have noticed that I do like it. I don’t feel like I’m being less of a doctor. Instead I get more to the core. (R11, GP)

Explaining this, he said, that some GPs would consider this approach not medical enough; talking about the person rather than the complaints.

Positive Health as a malleable concept

Despite the small size of this practice, the PCPs offered different interpretations of PH during the interviews. Some respondents struggled to describe what the concept meant:

I still find it hard to give it something tangible, like what is it really? In fact it is a little bit of everything in your work. (R2, practice nurse)

Two new employees reported that they had not received information on what PH entailed or how it should be implemented when they started working in the practice. However, professional values that hang together with PH (e.g. collegiality, the importance of self-care), were discussed more elaborately. Interestingly, the practice’s policy documents lack a clear-cut description of how the practice owners interpreted PH or envisioned the concept’s implementation. This could explain the conceptual confusion amongst the employees.

Analysis of interviews and archival material reveals four different descriptions of the essence of PH. Most commonly, working according to PH was described as taking a holistic or person-centered approach. The second most mentioned interpretation of PH was focusing on patient autonomy and resilience. The third interpretation of PH saw it as focusing on health and possibilities instead of illness and limitations. A fourth interpretation of PH found in the data described it as a way to achieve professional well-being:

I think it’s a way of working within your team (…) focused on living as healthily as possible (…) and also extending that to your patient care. (R7, X).

How the PCPs applied these interpretations in their work will be discussed in theme 2 and 3.

Notably, employees mentioned lifestyle-related issues in relation to all four different interpretations of PH, illustrating the importance of lifestyle in the general practice. This focus on lifestyle is seen in publications by and about the practice; however, other organizations adopting PH, did not put such a marked emphasis on lifestyle. This variance suggests PH is a malleable concept, offering room for multiple interpretations and allowing for context-specific customization.

Giving substance to Positive Health in practice

In line with difficulties in interpreting PH, some participants struggled to describe how they gave substance to the concept in practice. Several participants considered the practice’s public story to be changed the most. This included how the practice promoted its vision and how PCPs now stimulated each other to adhere to a healthy lifestyle. But upon taking a closer look, more implicit changes appeared to have occurred as well. The concept’s focus on holism and autonomy, towards both patients and professionals, strengthened the PCPs’ commitment to these values. In fact, PH served as legitimization for the distinct approach of the practice: PCPs felt supported to align their everyday conduct with their vision, which, as many said, contributed to their job satisfaction (Additional file 3 ). How the participants gave substance to their profession and to PH in practice will be described in the following paragraphs.

Consolidating the practice’s vision

Notably, when asked what changed most when the practice adopted PH, several respondents suggested it was the way the practice presented its vision and values. Indeed, the practice abundantly communicated its unique approach to family medicine in newsletters and on the website. PH and the 6-dimensional PH model took a prominent place in all these communications, thereby becoming absorbed in the practice’s public story. As the following quote illustrates, PH offered the practice a frame to express and promote its vision:

Something that I’ve been personally working with, now (…) becomes embedded. ‘Ah right, that’s what it’s called!’ And that (…) provides a frame to relay it to others. (R1, practice manager).

A majority of participants explained that the changed public image included setting the right example with respect to their own well-being. For instance, the participants had healthy lunches together or went on walks in the village during lunchtime. Most enjoyed this way of working.

Symbolizing the practice’s vision, the vegetable garden appeared in nearly all publications by and about the practice. Apparently in this way the garden functioned as a visual reminder of the importance of lifestyle and community-outreach in their vision:

We have been working for a long time on propagating and demonstrating a healthy lifestyle and have done this up and until now mostly in 1 on 1 patient consultations, in our offices. In the vegetable garden project we want to step outside and play a part ourselves by making the garden/ grounds available and making the first move. (Internal document; Project Proposal Vegetable Garden)

In the interviews, too, several respondents mentioned the garden in relation to the practice’s vision and adoption of PH.

By adopting PH, the practice saw itself as part of a movement in the healthcare field. Document analysis showed that the practice hoped to become an inspiration for other organizations and contribute to a positive change in the healthcare field. This aspiration also came to the fore during a few interviews:

I think that it [Positive Health] will grow. I think that considering society wants to go there, we’re on the right track. And by then we will become an example for multiple practices that will come and ask us: ‘Gosh, how are you doing that? How do you tackle that?’ (R9, practice nurse)

Through these various communications the practice positions itself as being on the cutting edge of innovation.

Towards a holistic approach

Even though several participants initially referred to the practice’s changed public story as the main effect of PH, during the analysis it became clear that more implicit changes had occurred as well. The adoption of PH increased the PCPs’ commitment to approaching patients and themselves holistically, to stimulating the autonomy of both, as well as to giving substance to this in practice:

Embracing the concept of Positive Health creates space in the practice for (…) egalitarian relationships, the autonomy you get as a professional, possibilities to tune in, giving substance to consultations and office hours how you think is nicest. I think that within this practice they would have done this without a concept like Positive Health. But, it is nice that Positive Health as an idea exists, so that you can use it as a frame for what the practice was doing already. (R10, nurse specialist)

As this quote shows, PH created space for the PCPs to better align their daily practice with how they envisioned their work. It also supported them in legitimizing this approach to others, some PCPs explained. Especially GPs and nurse specialists pointed out that this increased their job satisfaction.

All participants expressed the importance of a person-centered and holistic instead of a provider-centered and problem-oriented approach in patient care, which was also stressed in the practice’s policy documents and external communication. During patient consultations, GPs and nurse specialists strove towards having an open conversation and addressing issues beyond bodily complaints if needed:

I don’t ask a patient: ‘So, I see you are coming with knee complaints. What’s going on with your knee?’ Instead, I ask a patient: ‘How are you?’ Or: ‘Tell me?’ Or: 'How are you doing?’ So you start much more broad. (R6, GP)

They aimed to be open to all kinds of problems and to have eyes for the broader context of the patient. For example, one GP points out that she called the Dutch employee insurance agency, because she was worried that the lack of financial stability affected a patient’s health. The practice’s holistic approach expanded the borders of the consultation room and involved the whole team. The practice nurses checked in with every patient that returned home from a hospital admission, and the GPs regularly visited the elderly in the neighborhood to see how they were doing.

To strengthen their holistic approach, the PCPs participated in a PH training. The evaluation report of this training showed that the GPs were unsure how and when to embed the 6-dimensional PH model as a dialogue tool in their consultations, which they confirmed during the interviews. Instead, the GPs viewed PH primarily as a foundational attitude to facilitate an open exchange with patients:

But the idea [behind PH] is that you get to know the person behind the patient (…) What makes them tick, if you go searching for that, well that can bring a lot, because then you just have a different conversation (…) less medical and more human or something (R11, GP).

In fact, they rarely use the PH dialogue tool in consultations. Rather, they choose to reserve it for situations in which they feel the patient could benefit from more insight regarding the issue at hand.

As some respondents pointed out, this approach contrasts sharply with the conventional provider-centered conversation, in which PCPs ask steering questions. However, this approach was not new for all participants. The nurse specialist for mental health, for instance, argued that this type of conversation was already commonplace in mental healthcare. In addition, some assistants concluded that their patient interactions had always been more personal and less medical when compared to that of the GPs, and, in fact, had not been changed by PH:

It’s more the physicians who use it [Positive Health] the most. And how it really shapes us assistants, I cannot specifically say. It’s more like we already did before, giving attention to the patient. (R2, assistant)

Towards more autonomy for both patients and professionals

In conversations with patients, the GPs and nurse specialists tried to stimulate patient autonomy by exploring patients’ wishes and values, as well as by supporting them on how to realize these. To illustrate this, the practice manager discussed the case of an elderly woman just diagnosed with metastasized cancer:

[The GP] was immediately told by the hospital these [are] the treatment options. And in the conversation with that woman, whom he has known already for a while and he knows her partner, she decided (…) I want quality of life that’s more important to me now than that I might live a half year extra. (R1, practice manager)

As this quote illustrates, the GP in question focused on the patient’s preference rather than the available treatment options. Some other respondents also described how they addressed lifestyle-related issues but left it to the patient to make a follow-up appointment or decide on the treatment plan. This indicates a move towards more egalitarianism in the relationship between patient and professional, including a more directive role for patients in shaping the care process.

As shown previously, supporting patient autonomy was a significant part of the respondents’ understanding of what PH entails. For example, one GP sometimes used the 6-dimensional model as an instrument and asked patients to fill it in at home:

If you have the idea that people could use more insight, more control over their own health or over their own life in a broader sense, then I think it’s a convenient instrument to bring forward. (R5, GP)

This approach contrasted from the other GPs in the practice, who underscored the importance of stimulating self-reliance, but did not use the 6-dimensional model for this.

Most respondents expressed how stimulating patient autonomy and taking a holistic approach increased their job satisfaction:

What contributes a lot to my job enjoyment is that (…) it’s a unique patient who sits in front of me every time. (…) I always say to people like ‘you are unique, so this is the protocol, but we have to check with you together what constitutes tailor-made care here. ‘What can you do? What do you want? What’s not possible? What is possible?’ To figure that out together. I like that very much. (R4, nurse specialist)

As this quote illustrates, working like this allowed the PCPs to focus more on the person than on the conventional biomedical protocol. This increased the space they experienced to provide what they consider good care and figure this out together with the patient. They themselves indicated this was challenging, but increased their professional autonomy. In addition, some PCPs also explained that this way of working allowed them to connect better with patients, which positively affected their job satisfaction. However, it was unclear to most PCPs what the exact influence of PH was on their patient relationships.

Changing financial and organizational structures

Upon adopting PH, the practice also altered financial and organizational structures through the aforementioned pilot project with the health insurer and municipality, as was described in the project plan, the minutes of project meetings, and communication with the health insurer. The changes resulted in extra time for PCPs to spend on patients and on themselves. Several PCPs also expressed that the additional time increased their autonomy. Both the additional time and increased autonomy contributed to the job satisfaction of the participants under study (Additional file 3 ).

Money is time

An important part of the pilot project were new financial agreements made between the practice and health insurer: financing changed from activity-based contracts to capitation financing, and the practice received a higher staffing budget. As a result, the practice owners could lay aside income-related concerns:

Well, [the contract with the insurance company] gives us peace and comfort to fully focus on what we think is good GP care in all its aspects. (R5, GP).

Some PCPs reported that as a result of these new financial arrangements they felt less pressured in their daily work to perform activities that generate income.

The new way of financing supported the practice in their decision to hire more staff so as to prolong consultation times and lower the pace of their daily work. All assistants reported that reduced work pressure and more time for patient interactions increased their job satisfaction:

The freedom you have to really be there for the patients. Because I think that’s wat makes it most fun. That you don’t have to rush a patient. (R2, practice nurse)

Moreover, the additional time and lower work pace supported the practice in its endeavor to promote PH by setting a healthy example and investing in professional well-being, as described in theme 2.

The GPs and nurse specialists indicated that it was important for them to have sufficient time in order to carry out consultations in line with how they envisioned them. This enabled them to help patients how they thought was best. This includes taking the time to listen to the patient, discussing all domains of life, thinking along with a patient to find fitting solutions, and giving room for emotions. All of them explained that the feeling that they had helped patients was an important contributor to their job satisfaction:

When they [the patients] enter with their head hung down, I want them to leave with their head held high. If possible I would like to add something to that. And I think that works best if you understand someone better. And then you will have to reserve a bit more time to figure that out . (R11, GP)

Several PCPs explained that they not only enjoyed these interactions more, but also felt more autonomous. Both had a positive effect on their job satisfaction.

Easing collaboration

Secondly, as part of the pilot project the practice joined a regional project group working according to PH that consisted of the health insurer, municipality, welfare organizations, local associations, and volunteers. The goal was to create a network of various organizations around the general practice that could aid them in carrying out their community-focused and holistic approach. A GP summed up who is needed for this:

In principle anyone that you can use to help the patient to get going. It can be someone from the social housing corporation, it can be a care path counselor, that can be the gardener. (R11, GP)

With the project partners the practice carried out several initiatives to increase the health and well-being of the villagers. For instance, together they set out walking routes in the region with the practice as a starting point. With this, the practice and project group aimed to stimulate villagers to exercise. The practice organized lifestyle workshops for the entire village to help them adopt a healthy lifestyle. In addition, together with the municipality and social housing corporation the practice planned to build volunteer-supported living facilities for the elderly, inspired by PH.

The practice also sought collaboration within the healthcare field, for example with the home care organization or physiotherapists. Another example of this, was the start of multidisciplinary consultations with welfare and specialized mental healthcare professionals. However, only few participants explicitly stated that this eased collaboration contributed to their job satisfaction. One of them was this practice nurse:

It’s nice that you’re also supported by other organizations so to say. That you’re not in it on your own. (…) I think eventually if you see that you’re a bit successful that gives joy in work. That you know what you’re doing it for. (R8, practice nurse)

This study set out to explore how adopting Positive Health in a general practice affected the job satisfaction of primary care professionals. Firstly, the results show that the adoption of PH was the result of a carefully crafted match between the practice and the concept. Next, PH was shown to be a multi-interpretable and malleable concept. Secondly, PH supported PCPs to express, legitimize, and promote their distinctive approach to care work and its value. This created space to align everyday conduct with their vision, notably on the importance of holism and autonomy, which supported their job satisfaction. Thirdly, the concept enabled PCPs to change their financial and organizational structures allowing them to enact their vision, and improving their working conditions. These changes also increased the job satisfaction of the PCPs. In conclusion, PH acted as an adaptable frame for change, and in doing so contributed to the job satisfaction of the PCPs.

The changes positively affecting job satisfaction in the general practice resonate with the literature on job satisfaction and physician well-being interventions, which underscores that both intrinsic (e.g. meaning-making, values) and extrinsic factors (e.g. more time, context) play a significant role in this regard [ 4 , 8 , 35 , 40 ]. Namely, sources of job satisfaction in this study were a decrease in financial and time pressures, allowing PCPs to invest time in their patients and in their own well-being. Furthermore, PCPs felt more autonomous in their profession and were able to act upon their own professional values of holism and autonomy. Additionally, previous research reported that taking a person-centered approach increased the job satisfaction of healthcare workers [ 36 ]. As several changes in the practice were initiated before the adoption of PH (e.g. prolonging consultation times, taking a person-centered approach) this raises the question how the concept contributed to the job satisfaction of the participants. Especially, as some of the respondents struggled to describe what the concept meant.

Indeed, tracing the contribution of PH to various changes within the practice, and understanding how each affected job satisfaction has proven a Sisyphean task during our analysis of the data. The concept’s multi-interpretability and malleability complicated this issue further, as they introduced ambiguity regarding PH’s content and application. For example, the PCPs under study rarely used the PH ‘spiderweb’ as a dialogue tool during consultations, even though the institute for Positive Health promotes such usage. Also the practice chose to give lifestyle a prominent place in its adaptation of PH, which contrasts how other organizations give substance to the new health concept. This ambiguity of PH has been noted previously by other organizations implementing the health concept [ 15 , 19 , 47 ]. Ambiguity can be a potential source of confusion and lead to a lack of uniformity in implementation.

However, our analysis indicates that the malleability of PH is a strength as well. Successful application of PH, in the case of the practice under study, hinged on a carefully crafted match between the concept and the organization. In fact, customization of PH permitted by the concept’s malleability, played an important part in the making of the match. The individual PCPs, as well, could develop their own way of adopting the concept. As described in theme 2, PH contributed to consolidating the practice’s vision, while allowing for individual variations in practice. Thus, the PH frame helped align PCPs with the organization’s vision and values without heavily infringing on the professionals’ autonomy. In this way, it contributed to PCPs’ job satisfaction [ 35 , 40 , 48 ].

Over the past years, PH’s popularity has been soaring in the Dutch health landscape. The comprehensive health concept appears in publications by the national government, the association of GPs, and many municipalities, for instance [ 13 ]. Thus, PH’s recognizability and legitimacy in the Netherlands allowed the practice to use the concept as a frame for change to express, legitimize, and promote its vision. The adoption of this frame enabled the emergence of an experimental project with the health insurer and municipality. As such, PH helped secure the material (most importantly financial) conditions needed for the practice’s preferred way of working, namely for PCPs to invest more time in their patients and in their own well-being. The legitimacy of the frame also supported PCPs to give substance to their vision in practice. As discussed, these changes positively affected the PCPs’ job satisfaction. Arguably, PH fulfills a similar framing function in comparable experiments in the healthcare field [ 15 , 21 , 22 , 48 ].

Moreover, we argue that the framing function of PH contributed to the meaning-making of individual PCPs. A frame strengthens the coherency and value of one’s identity or ideas, for instance, on professionalism, which according to narrative identity theory makes individuals feel validated and authentic [ 49 , 50 , 51 , 52 ]. Put more concretely, a frame helps conveying what someone stands for, what makes them proud, and how they imagine the future. As theme 2 demonstrates, PH endorsed the PCPs in this regard. Due to the malleability of PH, each PCP could adopt and adapt it in such a way that the frame fit their professional identity. Thus, we argue that PH furthered the PCPs’ job satisfaction by supporting them to find meaning and a sense of purpose in their profession [ 4 , 35 ]. Anecdotal accounts by healthcare professionals suggest that PH has contributed to their meaning-making [ 15 , 16 , 42 , 45 ]. So far, however, the influence of PH on meaning-making in practice has not been addressed in the research literature, nor sufficiently by the current study. Therefore, future research should explore the role of PH on meaning-making and how this relates to job satisfaction.

Our results suggest that each organization that seeks to introduce PH as an intervention to improve job satisfaction will need to invest significant effort in making the match. Therefore, we recommend that other organizations first explore whether they are willing and able to do so. Nevertheless, adopting PH can be taken as an opportunity for professionals and the organization to start discussing relevant topics relating to the concept and to job satisfaction. These include the meaning of professionality, values such as holism or autonomy, and the organization’s place in the community. All the while, organizations should facilitate concrete changes that resonate with the vision developed (e.g. financial rearrangements, lunchtime walks). This case report shows that investing in PH can help legitimizing and giving substance to these changes, thereby potentially improving job satisfaction. Recently, the institute for Positive Health published guidelines on how to implement PH in a general practice [ 53 ]. In line with our recommendations, the authors stress the importance of reflecting on how PH can contribute to a practice’s vision and values, before making changes in the organization.

This study has several strengths and limitations. Since it is a case study, only a limited number of professionals were interviewed in a specific setting. Indeed, the discussed match is not possible in each and every setting. This minimizes the generalizability of the results. Additionally, the study population has an outspoken positive attitude towards PH, which might have introduced confirmation bias. Moreover, the participants are stakeholders in this research, as this study was used to evaluate the effects of PH on PCP well-being in the general practice. Therefore, the results may have an impact on the continuation of the pilot project with the municipality and health insurer. As this could have led to a conflict of interest, all stakeholders, including the researchers, met to discuss expectations and stakes at the start of the study. Consequently, agreements on transparent communication were made. The strong cooperation with the practice also meant a multitude of in-depth data and insights could be gathered, which increased the validity of the study [ 44 ]. Finally, the study forms a unique addition to the scarce academic research on PH implementations and professionals’ meaning-making in healthcare.

Positive Health contributed to the job satisfaction of the primary care professionals of the general practice by functioning as an adaptable frame for change. Firstly, the frame aided them in expressing, legitimizing, and promoting their vision on good healthcare and professionalism, and its value. This supported the PCPs to align everyday conduct with their values. Secondly, PH served as a frame to secure material conditions that were needed to enact this vision, notably freeing time to spend on patients and invest in PCP’s own well-being. However, it is important to take into account that the practice’s vision and circumstances fit well with the concept of PH, and vice versa. It is not self-evident that such a match is possible in any given context. Additionally, PH’s malleability introduces ambiguity in what the concept entails, but also allows for context-specific customization. In that regard, PH is not a readily implementable intervention. We recommend that other organizations seeking to adopt PH to increase job satisfaction carefully consider whether they are willing and able to make the match and explore how PH can contribute to substantiating the vision and values of the professionals involved. Future studies should explore the role of PH on meaning-making and how this relates to job satisfaction.

Availability of data and materials

The datasets generated and analyzed during the current study are not publicly available due to privacy concerns but are available from the corresponding author on reasonable request.

The participants themselves spoke of job enjoyment or joy in work in their interviews as opposed to job satisfaction. These terms will, therefore, be used when quoting or paraphrasing participants.

Abbreviations

• Positive Health

Primary care professional

General practitioner

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Acknowledgements

We acknowledge the general practice, especially the practice manager, and the entire project group, especially the project lead, for their contributions in providing us with archival sources and for participating in the interviews. We would like to thank Gijs Brouwer, PhD student at Maastricht University, for his expert advice on Dutch primary care and his feedback on the manuscript.

This study was part of a larger project exploring the implementation of Positive Health funded by the Netherlands Organisation for Health Research and Development (Project number: 531009101).

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CL gathered and analyzed the data. She wrote the basis for the manuscript. GY was involved with preparing the data collection and aided in analysis. RG aided in analysis as well. GY, RG, and MS contributed to writing and revising the manuscript. All authors read and approved the final manuscript.

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Ethical approval was obtained from the Ethics Review Committee Health, Medicine and Life Sciences (FHML-REC) of the Maastricht University (UM) prior to the start of the study. The approval number is: HML-REC/2020/026/FHML/HPIM/2020.013. The study was performed in accordance with this approval and with the Declaration of Helsinki. All participants gave written informed consent for study participation.

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Additional file 1..

Interview Guide. Guide used during the semi-structured interviews.

Additional file 2.

COREQ (COnsolidated criteria for REporting Qualitative research) Checklist. COREQ Checklist describing items that should be reported in qualitative research manuscripts and on which page to find these in the manuscript.

Additional file 3.

Additional Quotes Table. Data table providing a selection of additional quotes per theme.

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Lemmen, C.H.C., Yaron, G., Gifford, R. et al. Positive Health and the happy professional: a qualitative case study. BMC Fam Pract 22 , 159 (2021). https://doi.org/10.1186/s12875-021-01509-6

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Non-medical practitioners in the staffing of emergency departments and urgent treatment centres in England: a mixed qualitative methods study of policy implementation

• Vari M. Drennan 1 ,
• Mary Halter 1 ,
• Francesca Taylor 1 ,
• Jonathan Gabe 2 &
• Heather Jarman 3  

BMC Health Services Research volume  23 , Article number:  1221 ( 2023 ) Cite this article

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Patient demand, internationally, on emergency departments and urgent care treatment centres has grown. Shortages of staff, particularly of emergency medicine doctors, have compounded problems. Some countries are pursuing solutions of including non-medical practitioners e.g., nurse practitioners and physician associates/assistants in their emergency department workforces. This study investigated at the macro and meso level of the health system in England: what the rationale was and the factors influencing the current and future employment, or otherwise, of non-medical practitioners in emergency departments and urgent treatment centres.

Mixed qualitative methods in the interpretative tradition were employed. We undertook, in 2021–2022, a documentary analysis of national, regional and subregional policy (2017–2021), followed by semi-structured interviews of a purposive sample ( n  = 18) of stakeholders from national, regional and subregional levels. The data were thematically analysed and then synthesised.

There was general national policy support for increasing the presence of non-medical practitioners as part of the solution to shortages of emergency medicine doctors. However, evidence of policy support dissipated at regional and subregional levels. There were no published numbers for non-medical practitioners in emergency departments, but stakeholders suggested they were relatively small in number, unevenly distributed and faced uncertain growth. While the experience of the COVID-19 pandemic and its aftermath were said to have made senior decision makers more receptive to workforce innovation, many factors contributed to the uncertain growth. These factors included: limited evidence on the relative advantage of including non-medical practitioners; variation in the models of service being pursued to address patient demand on emergency departments and the place of non-medical practitioners within them; the lack of a national workforce plan with clear directives; and the variation in training for non-medical practitioner roles, combined with the lack of regulation of that level of practice.

Conclusions

We identified many features of a system ready to introduce non-medical practitioners in emergency departments and urgent treatment centres but there were uncertainties and the potential for conflict with other professional groups. One area of uncertainty was evidence of relative advantage in including non-medical practitioners in staffing. This requires urgent attention to inform decision making for short- and long-term workforce planning. Further investigation is required to consider whether these findings are generalisable to other specialties, and to similar health systems in other countries.

Peer Review reports

Health care systems internationally have reported rising patient numbers attending emergency departments and urgent care treatment centres (EDs/UTCs) before and since the first wave of the COVID-19 pandemic [ 1 ]. Shortages of staff, particularly of doctors trained in emergency medicine have compounded stresses on these services in many countries, including the United Kingdom (UK), [ 2 ]. This combination of issues has resulted in negative patient and staff experiences [ 3 ]. One response has been the advocacy by the World Health Organisation (WHO) for new types of clinically trained health professionals, such as nurse practitioners (NPs) and physician associates/assistants (PAs) to undertake some of the work of doctors [ 4 ]. These new types of clinical health professionals are educated to undertake medical histories, clinical assessments, order diagnostic tests, make diagnoses and commence treatment for any presenting patients as agreed with medical clinicians and/or employers [ 4 ]. These new types of professionals are clinical decision makers with a broader scope of practice than health professionals who follow specific extended practice clinical protocols for specified groups of patients [ 5 ]. There is no agreement internationally on collective nomenclature for these types of professionals and we use the term non-medical practitioner (NMP), [ 6 ] in this paper. A recent scoping review identified published accounts of the employment of NMPs in ED/UTCs in 12 countries [ 7 ]. Pilot or demonstration projects only were identified from Denmark [ 8 ], the Netherlands [ 9 ], New Zealand [ 10 , 11 ], Norway [ 12 ], Saudi Arabia [ 13 ] and Uganda [ 14 ]. Reports from Australia, Canada, England, Ireland, Scotland, and the United States (USA) detailed more widespread but far from universal employment of NMPs in EDs/UTCs [ 15 , 16 , 17 , 18 , 19 , 20 ]. While there were accounts reporting on the facilitators and challenges in single organisation introduction of an or more than one NMP into an ED/UTCs [ 21 , 22 , 23 , 24 , 25 , 26 ], there have been none that investigated explanations for the variation in the extent of employment of NMPs in EDs/UTCs from across a health system. The National Health Service in England has had a national policy of support for NMPs in ED/UTCs and offered an opportunity to investigate across a health system. This paper reports on a study investigating the factors influencing the employment or otherwise of NMPs in EDs/UTCs in one health system, the National Health Service (NHS) in England, from the macro and meso level perspective.

The context for NHS England ED/UTC workforces

The NHS is a universal tax funded health care system, free at the point of care delivery, and provided by individually governed NHS organisations and other types of not for profit and for-profit providers [ 27 ]. The NHS is nationally led by an arms -length body called NHS England which receives its mandate and funding from the government Department of Health & Social Care [ 27 ]. NHS England sets out the policies and mechanisms for planning and funding clinical care as well as health workforce planning and training [ 27 ].

In 2021–2 there were 24 million attendances at 151 NHS EDs/UTCs [ 28 ]. In the same year NHS organisations employed 8,155 full time equivalent (FTE) doctors (5,996 of whom were in training positions), 16,790 FTE nurses and 14,200 FTE other types of care providers (unspecified) in EDs/UTCs [ 28 ]. There has been a twenty-year history of developing extended scope of practice roles (particularly for nurses and paramedics) in EDs/UTCs in England [ 29 ] to address increased patient demand and medical staffing problems [ 30 ]. A few individual NHS hospitals developed and employed NMPs [ 31 ]. In 2017 the Royal College of Emergency Medicine (RCEM), with the support of the Royal College of Nursing and College of Paramedics, published a curriculum and credentialling process for emergency care advanced clinical practice (EC-ACPs) [ 17 ]. In the same year, NHS England published a policy statement promoting increased numbers of NMPs to be employed in ED/UTCs and invested funding in training more ED/UTC NMPs [ 32 ]. Against this national policy support for ED/UTC NMPs, this study investigated at the macro and meso level of the health system: what the rationale was for including NMPs in the ED/UTC workforce; and what factors were influencing the current and future employment, or otherwise, of NMPs in the ED/UTC workforce.

As a study of the influences of the implementation of workforce innovation policy we framed our investigation through Greenhalgh et al.’s theory of the diffusion of innovation in health services [ 33 ]. This theory argues for a complex interplay between the nature of the innovation, the system readiness for the innovation, the wider socio-economic context, and the resource system.

The mixed qualitative methods design drew on the interpretative tradition, recognising multiple perceptions occurring within specific socio-cultural and historical contexts [ 34 ]. In order to explore the research questions at both the macro and meso levels of the health system we undertook two sequential investigations followed by an integration of data phase. We first conducted a documentary analysis of policy, followed by semi-structured interviews of a purposive sample of key stakeholders at national and regional levels. We then integrated the data through a narrative synthesis against the research questions, which is reported in the discussion section of this paper.

Data were collected for the documentary policy analysis [ 35 ] by searching the websites of public organisations at the macro and meso level of the NHS in England. We searched only those organisations with authority to direct or influence the use of public NHS funds used for emergency and urgent care services and its workforce. At the macro level of the health system these organisations included: the Department of Health & Social Care, the Parliamentary Health Select Committee, the Care Quality Commission (responsible for inspection of services), NHS England (including the newly merged NHS Improvement organisation), NHS major trauma networks and Health Education England (HEE, then responsible for workforce planning and funding training). At the meso level of the health system we searched websites of regional offices of NHS England and HEE, and of local level organisations and networks involved in planning and commissioning of NHS services (at the time of the study these included Sustainability and Transformation Partnerships, Integrated Care Systems, Clinical Commissioning Groups, Integrated Care Boards). We searched for documents published between January 2017 (the year of the NHS England stated policy support for NMPs in EDs/UTCs) and May 2021 (Table 1 ).

Policy statements, strategies, plans, directives, guidance, reports, reviews, and evaluations of NMP implementation were included and illustrative case studies or opinions without policy directives or guidance were excluded. The websites of professional bodies (RCEM, Royal College of Nursing, Royal College of Pharmacists, College of Paramedics, and the Chartered Society of Physiotherapists) were also searched for any references to relevant public organisation documents or co-authored documents not identified through other searches. Retrieved documents were logged in an electronic spreadsheet and stored electronically. Documents were word searched using the ‘find’ function for the words: “emergency care”, “urgent care” (context and population of interest), “practitioner”, “associate, “advanced”, “clinical pharmacist” (population of interest), and “skill-mix” (concept of interest). On finding the words of interest, the surrounding paragraphs were read and text relevant to the research questions (e.g., employment, intentions to develop or employ NMPs, related rationales) identified. These data were extracted to a spreadsheet. Inductive and deductive analysis was undertaken [ 36 ] and iterated and interpreted though discussion in the research team and at consultative events with patients, non-medical practitioners, clinicians, and managers.

Qualitative semi-structured interviews were conducted with a purposive sample of 18 senior NHS clinicians, managers, commissioners and lay representatives from organisations operating at macro and meso levels: national, regional NHS (including arms-length bodies), and sub-regional NHS organisations and professional organisations between August 2021 and April 2022 (Table 2 ). Lay representatives were included as they participated in macro and meso level policy influencing and policy making committees.

Potential participants were identified through the website searching for the documentary analysis and invited by publicly available email addresses. A topic guide was constructed from the literature and policy analysis and refined in discussion with the study advisory panels which included patients and NMPs. The topic guide (supplementary file 1 ) focused on questions about the influences/rationale experienced in decisions to employ/train NMPs, expected benefits and risks, and outcomes regarding use of NMPs in EDs/UTCs and the wider system and any views on the mix of staff and skills in EDs/UTCs. Interviews were conducted by video call, recorded with permission, transcribed, anonymised and the recording deleted. Interviewers (VMD, FT, MH) employed techniques of checking understanding, interpretation and summarising during the interview with participants [ 37 ]. Interviews lasted from between 30 and 50 min. Interviewers were all female health services researchers, one with a clinical managerial background, and all with prior experience of research on the topic of non-medical practitioners. Reflexive notes were made immediately after interviews and open discussions held in the team to ensure both consistency of approach and iterative questioning. Transcripts were thematically analysed that allowed for deductive (theory framed) and inductive (data driven) approach [ 36 ]. Two members of the team (VMD, FT) initially read and developed a coding index, subsequently iterated and refined through discussion with the wider team.

The interview element of the study was reviewed and approved by the NHS North East—Tyne & Wear South Research Ethics Committee (REC number 21/NE/0071).

We report the findings from the documentary policy analysis first and then the interviews. The data are then integrated in the discussion section.

The documentary policy analysis

At the national macro level of the health system, we identified sixty-three documents in scope published by the Department of Health and Social Care, its arm’s length bodies and NHS England, 25 referred to NMPs and of these 14 referred to NMPs specifically in ED/UTCs. The 14 documents reported the existence of NMPs in some ED/UTC services and national level general support for growth in their numbers in response to stated concerns about shortages of emergency medicine doctors, increased patient demand and decreased quality of emergency services.

“ Professional groups such as advanced clinical practitioners, pharmacist clinicians and physician associates are also being developed and supported to take on collaborative, frontline clinical roles in EDs under the supervision and mentorship of consultants in emergency medicine. These groups form an important part of today’s emergency care workforce, giving it greater resilience and sustainability ” p9 [ 32 ]

Aside from the specific allocation in 2017 of national funds to train 42 existing health professionals in 14 NHS organisations to be advanced clinical practitioners (ACPs) in the ED [ 32 ], the national statements were of general support for NMPs rather than specific instructions for employment. In the response to a parliamentary select committee recommendation that efforts to improve staffing in EDs be redoubled, the government listed actions on NMPs including the opportunities for ACP training fellowships but no directives to the NHS on their employment [ 38 ].

At the meso level of the health care system we noted that the regional offices of NHS England, NHS Improvement, HEE, and the regional major trauma networks had very limited web presence with few publicly available documents. One in-scope document was found but made no reference to NMPs in EDs/UTCs. At the sub regional level, in scope documents were found published by 32 integrated care systems; of which 15 referred to developing NMP posts in support of the service transformation and primary care objectives of the 2019 NHS Long Term Plan [ 39 ]. Of these 15 policy statements on NMPs, two specifically referred to NMP development in urgent care settings and one to the consideration of ACP roles in emergency departments but without explicit rationale or actions, as in this exemplar:

“There are a number of new roles we need to consider in our long-term strategic workforce planning at both a local and whole system level. These include: ………. advanced clinical practice roles (especially A & E, cancer, elective specialities).” Hampshire and Isle of Wight Integrated Care System Strategic Delivery Plan 2019-2024. working draft version 6 last edited 17th February 2020 p 10 [ 40 ] .

At the sub-ICS level (clinical commissioning groups transferring to integrated care boards and integrated care partnerships during the period of the study), 12 in scope documents were retrieved. While seven referred to plans for improving urgent and emergency services, none referred to NMPs as part of the solution to identified performance problems.

In summary while there was macro, government level general support for NMPs in EDS/UTCs as a policy solution to shortages of emergency medicine doctors, there were no direct implementation instructions to NHS organisations and at the meso-level of the system we found little policy attention to developing or employing NMPs in EDs/UTCs.

The stakeholder interviews

We now report on themes identified against our research question from the stakeholder interviews. First, we note how the interviewees contextualised their responses through the experience and impact of the COVID-19 pandemic before discussing views as to rationales for NMPs, factors supporting and inhibiting the development of roles and NMP employment in EDs/UTCs.

The COVID-19 pandemic context

All the interviewees commented on the experience of providing health care and health professional education through the COVID-19 pandemic as creating a changed context in comparison to pre-2020. The participants reported the increased demands on services and on an already overstretched workforce. Some participants noted the pandemic period had increased patient and public familiarity with different forms of health care practices and different types of staffing. The pandemic was described as having stimulated rapid change in working practices, deployment / utilisation of different staff groups as well as collaborative ways of meeting challenges.

“If COVID has taught us anything, it's that where we show strength is when we're working together. Any schemes, any new risks we've taken, any different services we've done, have been in partnership with other professions or other stakeholders. Why would that change when we come out of COVID?” Participant 18 regional, clinician, manager

These changes were observed to have subsequently created the opportunity to re-think the types of staffing needed in a service, as in this exemplar:

“We suddenly have to provide COVID care, and we didn't have a workforce to provide that care. We've had to pull it from other bits of the workforce. In doing that, we've realised, I think, where the gaps are across the workforce as a whole. For example, if you pull three junior doctors from an area of medicine to go and work on a COVID ward, …..Is it more junior doctors who need to fill that gap or should you be asking a different question?” Participant 17 regional, clinician

However, a different view was offered by one participant who argued that the ongoing legacy problems of the COVID-19 pandemic meant commissioners were now paying more attention to the wider system of primary care in a local geography to address the increased problems in emergency services, rather than being interested in the internal provider issues of workforce,

Rationale for the development and employment of NMPs in EDs/UTCs

For those participants able to comment on reasons why NMPs were being trained and employed, they reported the long-term medical shortages in emergency medicine as the most significant issue for which NMP posts were seen as one part of the solution.

“It's [employing NMPs] just a new way to bring capacity into the system, and we desperately need it.” Participant 6, national, policy

“ Unless they're going to suddenly train a whole load of medical students to become doctors, but that's going to take five years, ten years, even if the numbers went up. You've got to think about it differently. You've got to stop thinking hierarchy and think about, if you're a patient and you're ill, who is the best person to treat you, and who can you get to see the patient, and who is available to see the patient? ’’ Participant 10, regional , sub regional , clinician.

Some participants suggested that another driver was the need to provide a greater proportion of permanent members in ED staffing, with concomitant benefits to patient and staff experience as in this exemplar.

"I think a really important thing now is about the continuity of care, so the junior doctors move round all the time, don't they? They do, like, rotations whereas if you have ACPs or PAs in a department they would be quite long-term….you would get a kind of stability within a department”. Participant 11, national, layperson

It was also suggested by some participants that NMPs, as part of a stable ED/UTC workforce, contributed to and improved the training of other professionals including doctors. Another rationale linked to workforce stability was reported to be the need to retain experienced emergency service nurses. NMP roles were considered to offer an attractive clinical career pathway and some examples were given of very high application levels for NMP training posts in emergency and urgent care services.

“[NMPs] are a focus for the nurse career progression and other colleague progression as well…… it's better to retain and give our nurses something to work towards .” Participant 1, regional, clinician, manager

There was a consensus that NMPs in EDs/UTCs were a relatively small group but were thought to be growing in numbers. Although no one was able to offer exact numbers or specify type of professional background, most participants considered that nurses were in the majority in NMP roles.

“ I sit on a multi-professional rota in practice. In that role, it can't be a registrar. It has to be a general practitioner or an advanced practitioner. In reality, it's still mainly nurses, but could be a paramedic, it could be a pharmacist, or it could be a physio”. Participant 16, national, clinician

There was also agreement that NMPs were not uniformly employed across the regions of England. One explanation was that emergency medicine workforce problems had not been experienced to the same degree in different regions.

“It's very patchy across the UK, never mind getting into the devolved nations, how such roles have been adapted, supported, and implemented……As I say, the [name of region] is terribly late to the party, for the reason that it hasn't had medical workforce issues, historically.” Participant 20, national, regional, clinician

Factors supporting the NMP employment and development

As reported above the context of the COVID-19 pandemic and its legacy (i.e., increased patient demand in EDs/UTCs and workforce shortages), were seen as very influential in supporting NMP employment. Beyond the pandemic impact, the participants described evidence of the value of NMPs to services, familiarity with NMPs and national and regional policy on NMPs as factors supporting NMP employment and development. The three types of factors were often reported to be intertwined.

Evidence of NMP value to the service

Some participants considered that a supporting factor was evidence of benefit to the service. It was commented on that this often took time as it required NMPs to have completed their training programmes, and induction periods in their ED/UTC posts.

“It wasn't until they were allowed to kind of go through the training, flourish, get to the other end, that they [medical clinicians] then began to really see the value, and the ACPs weren't just doing what the consultants wanted them to be able to do. For example, I don't know, manage a trauma safely, be able to request specific imaging and be able to interpret that quickly and efficiently, but actually they then saw them in the light that they [the ACPs] were then beginning to educate their medical trainees; that they were developing, they were looking at ways that service could be improved” Participant 8, regional, clinician, commissioner

From the patient’s perspective, NMPs were seen to add value by reducing ED/UTC waiting times, making visits more efficient and positive:

“We know that the public angle is that the demands on urgent care and accident and emergency departments is huge. People are waiting for a very long time, so that makes them very anxious. I think they would be much less anxious seeing a senior practitioner from any type of background than waiting for hours not seeing somebody.” Participant 5, national, layperson

While some participants speculated that a factor positively influencing the employment of NMPs would be that they were cheaper than doctors, participants with more direct knowledge were able state that NMPs were less costly than locum doctors but not middle grade doctors:

“ACPs are not cheaper than middle-grade [doctor] counterparts; that's not true. In fact, ACPs are ever so slightly, for hour-for-hour of direct patient care, slightly more expensive. However, when you compare that to a locum, which is your only real other alternative to that [middle grade doctor] workforce, [ACPs] are considerably less financially burdensome” . Participant 1, regional, clinician, manager

Many participants viewed the history of incremental development of NMP types of posts, with meso-level system support over many years, as increasing the familiarity of clinicians and managers as particularly helpful.

“So, the development started [in the NHS region] back in 2005, and that was funded by the strategic health authorities at the time, and then it became NHS [name of region]”. Participant . 8 regional, clinician, commissioner

Participants reported that NMPs were more widely accepted. The nearly twenty-years of incremental development of NMP posts, combined with recognition of ACPs by RCEM [ 17 ] was considered by many to have contributed to the acceptability of employing NMPs in EDs/UTCs.

Some participants also reported that senior clinical and managerial decision makers familiar with NMPs and viewing them as of value, took that knowledge with them to other organisations and influenced the spread and adoption.

“.. a lot of it is probably to do with whether there's someone in senior management wanting to champion that [NMPs] as a kind of way of improving the workforce. ……..someone who's moved from somewhere else where they've been doing that, and then there’s kind of like a snowball effect I think sometimes….. they take that idea with them” . Participant 11, national, lay.

Some participants considered that factors that were aiding the implementation of NMPs in urgent and emergency care came from all levels of the health system: the national policy statements by HEE and NHS England as well regionally funded training programmes. Several participants pointed to the value of training programmes that made explicit the level of NMP competency in emergency medicine to other clinicians, Examples were given of bespoke regional programmes as well as the credentialing process of RCEM [ 17 ]. The lay participants reported that, in the main, patients were content to be treated by the most suitable staff in terms of skills, knowledge, and experience rather than role. They reported the patient perspective as emphasising competent health professionals with good communication skills that engendered trust and confidence in the triage decisions.

“You'll get very little about, 'It would have been better if I'd seen a doctor quick.' I don't think you will. I think people are much more…they want to just get to the right person who they can talk to and get treated.” Participant 5, national, layperson

There were, however, also views expressed that a minority of patients expected to consult doctors and that there was considerable public confusion about who and what these new NMP roles were.

Participants described supportive factors for NMP employment as NMPs bringing a breadth of skills to the effectiveness of the team. Examples were given of NMPs from nursing and PA backgrounds bringing strong communication skills, NMPs from physiotherapist backgrounds having expertise in musculoskeletal conditions, NMPs from paramedic backgrounds having expertise in sudden deterioration of patient conditions and NMPs from pharmacy backgrounds having expertise in medicines.

“ I think the broadening of the workforce (with NMPs), and one of the things that brought me into emergency medicine…. I appreciate and value multidisciplinary working and I think it brings a far more holistic care to patients . Participant 20, national, regional, clinician

Two participants commented that while there was some research evidence as to the contribution of NMPs in EDs/UTCs this was very limited and there was a need for more. This was viewed by some as one of the factors inhibiting the wider employment of NMPs, which we now report.

Factors perceived to be negatively influencing the implementation and future intentions for non-medical practitioners in the urgent and emergency care workforce

The reported hindering factors grouped into overlapping themes about: the extent of evidence of value of NMPs, the variation in scope of NMP practice and regulation with concomitant concerns about clinical risk; variation in workforce models deploying NMPs, the absence of long-term workforce plans with associated business plans, system inertia and professional resistance.

Some participants argued that there was very limited evidence as to the value, safety and benefit of NMPs in EDs/UTCs. Others considered that the gap was in knowledge transfer about value and safety to local organisations in a way that was useful to decision making:

“I think a really clear articulation at a national level of actually what are the benefits, what are the risks? Where has this been done well? What can we expect from this workforce that might be different? So that can be something that's used for your local organisation.” Participant 17, subregional, clinician

As reported earlier, commissioners were thought to be focused on out of hospital services to address problems in EDs/UTCs and some suggested that NMPs working outside of hospitals could help provide solutions rather than NMPs within EDs:

“Because of the development of advanced practitioners, physicians’ associates, specialists in advanced practice, what we [ commissioners of services] can do is give people more treatment in their place of living.” Participant 18, national, clinician, commissioner

New models of emergency department care were described, which were addressing the wider problems of patient flow out of EDs/UTCs, and which did not necessarily require NMPs in the ED. Examples were given of in-reach into the ED from consultant speciality teams, for example from geriatrics, that included speciality specific ACPs. Others suggested that there was increased use of other professional groups in the ED/UTC, such as paramedics and pharmacists, but this was not necessarily in NMP roles:

“Some trusts are looking? at taking paramedics on to do front door streaming [of the ED] , not necessarily in that ACP role.” Participant 13, regional, clinician, commissioner

Many participants pointed to the negative impact of the lack of national, regional and often local level health care workforce plans. The lack of funding was thought to deter the creation of training programmes; training posts with associated training and supervisor time; as well as NMP posts with associated medical supervisory time. A few participants argued that local detailed ED workforce planning based on the organisation context and patient demand should be used to inform regional and national workforce plans, rather than some national superimposed template of staffing. However, these participants were in unison in observing that there was an absence of long-term workforce planning.

“The NHS only seems to really plan for the next 12 months from April to April, and we really struggle to persuade organisations that, actually, this is part of a five-year, ten-year plan, and they've got to invest now [in ACP in ED training] in order to have that positive effect much later on down the line”. Participant 1, Regional, clinician, manager

A few participants described public sector organisations as incapable of swift, radical changes and consequently this was deterring wider NMP implementation. Variation between local level NHS organisations was cited as evidence of different attitudes to innovation. Devolved decision making within organisations was thought by some participants to result in risk averse choices rather than innovation.

“I think there's real desire, actually, at the top of the trust to do this and to support this [introduction of NMPs]. But the long and short is the budget doesn't sit with the board. The budget sits with the operational units…..We're talking about them taking a risk. We're talking about them converting one type of post into another type of post. Or, actually even worse for them, investing to save…... But I think we're talking about such a fundamental shift that it becomes really hard for risk-averse divisional managers to, to decide to take that risk. ” Participant 17, sub-regional, clinician

The variation in scope of practice and training of different NMPs (i.e., leading to uncertainty in the competency and capability of NMPs), was identified by several participants as a factor that deterred inclusion of NMPs in ED/UTC workforces. This factor was mitigated, as described previously, for some participants by programmes that provided quality assurance of knowledge and skills; for example the RCEM ED-ACP programme [ 17 ]. A few participants pointed to a tension amongst senior decision makers as to how to standardise and quality assure competency amongst NMPs in EDs/UTCs.

“At the moment, there is a want [to fill medical vacancies] , and there are those who would put a white coat on a clapping monkey and call it a clinician. You have to say, 'No, this has to be a quality assured measurement and training, because at the end of this is the patient's safety.” Participant 20, national, regional, clinician

Individual professional organisations were thought to be ambivalent as to NMP roles and credentialing processes by other professional organisations. This was another factor that was considered to inhibit NMP development:

“The organisations who represent the professions are more hesitant. The organisations who represent trust leaders or employers are much more pro, because we can see the value” . Participant 6, national, policy

The absence of licensure by health professional regulatory bodies in the UK for advanced practice and for PAs, combined with linked restrictions (such as paramedics unable to prescribe certain classes of medications), was described as an ongoing deterrent for employers.

“ The lack of regulation over physician associates …..It's a real shame, because we could really benefit from seeing, for instance, prescribing rights. And that can only come with regulation. And it will just help in the workforce planning piece to know how far people can work up in terms of skill sets ”. Participant 6, national, policy

Finally, resistance within the medical profession to the development of NMPs roles was discussed by some participants. Only one participant reported direct objection from concern about future jobs:

“I know there’s been a little bit of resistance when the ACP programme was first set up, from people who felt like, perhaps medics, who felt like their jobs might be, not be protected if they start training other people who can do quite a lot of their job”. Participant 9, national, policy, commissioner

Medical consultants were described as considering a doctor as the ‘ gold standard ’ (Participant 17, sub-regional, clinician) in the workforce and consequently considered any other professional in that post would constitute a loss. Other participants reported more mixed views amongst doctors as to the acceptability or otherwise of NMPs. It was also pointed out that other professional groups could display negative behaviours towards the concept of NMPs.

“They [nurse ACPs] also got kickback. They can get sometimes bullying, effectively from… Or snide remarks from their colleagues. 'Oh well, you're not one of us anymore because you're on that [ACP rota] . ” Participant 16, national, clinician

The tension between occupational groups was described by several participants as most frequently observed in the defence of staffing budgets against conversion to NMP posts. Staffing budgets were reported to be ringfenced to specific professional groups rather than the service in total.

“For me, again, one of the big tensions is around developing these roles, 'Oh, well, where's the money coming from? Is it out of the nursing budget or the medical budget?”. Participant 20, national, regional, clinician.

The ambiguity over the position of NMPs vis-a-vis both medicine and nursing, was considered to influence discipline specific budget holders not to support the use of their professions’ staffing finance for NMPs.

This study explored the macro and meso level factors influencing the implementation of NMPs in EDs/UTCs in England in the context of a National Health Service. While there are many studies of the introduction of NPs in primary care [ 41 , 42 , 43 ], to our knowledge this is the first study to explore this issue specific to EDs/UTCs from a national perspective, and the first for multiple types of professions in NMP roles. We found new evidence that suggested the numbers of NMPs were relatively small, unevenly distributed and faced uncertain growth. Similar views have been reported for multi-professional ACPs in all types of secondary care services in England [ 44 ].

In this first policy analysis study, we identified that the macro level policy in support of NMPs in EDs/UTCs was written in general terms rather than a prescription to the rest of the health service. Greenhalgh et al.’s model of implementation of innovation notes the importance of policy mandates in adoption of innovation. [ 33 ] The national policy statements on NMPs in EDs/UTCs had broadly desired implementation and outcomes i.e. they were normative in nature [ 45 ]. It has been argued that normative policies are subject to political contexts of ambiguity and conflict in implementation decisions [ 45 ]. Our finding that the employment of NMPs in EDs/UTCs was largely absent from the meso-level policies of NHS planning and commissioning organisations may be in part explained by the lack of directive from the national policy. Views of the national and regional level participants give weight to this explanation. The participants pointed to the absence of a national funded NHS England workforce plan as an inhibiting influence on further meso level actions in support of the spread and adoption of NMPs in EDs/UTCs. The absence of a national health care workforce plan has been commented on before in the NHS England context, although not specifically in the context of ED/UTC services [ 46 ]. A recent national recovery plan to improve ED/UTC patient waiting times and experience has committed (amongst other actions) to increasing the workforce throughout the urgent and emergency care system, including “increasing the numbers of advanced practitioners in priority areas, including emergency care “ (p 20, [ 47 ]). As part of this NHS England has required the local ICS to develop specific workforce plans for urgent and emergency care services [ 47 ]. On 1st June 2023 a new national NHS England workforce plan was published [ 48 ]. This committed to funding increased numbers of advanced practice and physician associate training places, with specifically 150 advanced practice paramedic training places a year to support the same day emergency care initiative. The national plan committed to work with local level ICS organisations to implement the policy, however, it remains to be seen if the implementation plans are more prescriptive. Further longitudinal study is required on the impact of these national and sub-regional workforce plans on the numbers and spread of NMPs in ED/UTCs in England.

Participants identified that areas with long standing, and acute shortages of emergency medicine doctors were more receptive to the innovation of NMPs in their workforce. In Greenhalgh et al.’s model this represents readiness for change of an unworkable situation [ 33 ]. The COVID-19 pandemic experience of having to innovate suddenly in workforce deployment and ways of working was considered by participants to have also contributed to system and service readiness for change. Participants reported that evidence of value and acceptability of NMPs to services, clinicians and patients was influential in supporting the spread and growth of NMPs; that is NMPs demonstrated the relative advantage as described in Greenhalgh et al.’s model for adoption of innovation [ 33 ]. However, there was also uncertainty and differing views amongst participants. Divergent views were offered as to whether there was publicly available evidence of clinical safety, efficiency, and cost effectiveness i.e., relative advantage of having NMPs in EDs/UTCs. Synthesis of evidence, primary research and modelling over long-term periods is required to provide clinicians and managers with the information to decide on the relative advantage, or otherwise, of NMPs.

There were also differing views as to which of the following problems NMPs were part of the solution to: medical shortages, problematic patient flow into and through EDs, failure to retain experienced ED nursing staff or lack of staffing continuity resulting from training rotations of doctors. Further ambiguity was identified as to which workforce models involving NMPs should be pursued to improve ED/UTC experience and services. Participants offered the following variety: NMPs in primary care to reduce patient demand at EDs/UTCs, NMPs attached to secondary care specialties to enhance in-reach into EDs/UTCs for specific groups of patients, NMPs with prior professional backgrounds to target specific patient groups in the ED/UTC e.g., physiotherapists and patients with musculoskeletal problems and NMPs working generically within the ED/UTC as senior clinical decision makers to help improve patient flow overall. Greenhalgh et al.’s model proposed that for successful introduction the innovation must be understood by all parties and be compatible with current ways of working [ 33 ]. Apart from differing NMP workforce models, participants reported uncertainties derived from varied NMP training, competencies, regulation and governance, as well as confusion among patients and the public. Counterbalancing these uncertainties were the macro and meso level work by some organisations to provide benchmarked training and accreditation for some types of NMPs working in ED/UTCs [ 17 ]. Further study over time is required to investigate whether these developments impact on decisions to include NMPs or not in ED/UTC workforces.

In the absence of national or regional policies, participants pointed to the positive impact of change management activities by individuals at the meso and micro-organisation level such as senior influential champions, which features in Greenhalgh et al.’s model [ 33 ] and has been described many times in relation to the introduction of NP’s roles in individual organisations [ 49 , 50 ]and in ED/UTC settings [ 21 , 22 ].

Multiple reviews of the introduction and spread of advanced and expanded health profession roles have pointed to national health workforce policies as enabling but that these have been dependent on the extent of opposition or support of other professions, most notably medicine [ 51 , 52 , 53 , 54 ]. Our documentary policy review provided evidence of active support at the national level by medical organisations to NMPs in ED/UTC, although the interviews provided a more nuanced view at the meso organisational level. Participants reported mixed views amongst doctors, with some being actively supportive, some that were neutral and some being unsupportive for a variety of reasons. These reasons included the erosion of medical roles and medical training opportunities, uncertainty as to the capability of NMPs and concern about the adequacy of the funding for medical supervision for NMP roles. Surveys of emergency medicine doctors in Australia and the US have similarly reported divided opinions [ 55 , 56 ]. The innovation of NMP roles is fundamentally a disruption to current ways of working and the work boundaries between professions. Abbott’s seminal work offered a theory of the system of professions, characterized as a jostling, interdependent ecology in which the activities of one occupational group impact on others and are tied up with issues of power, status, and rewards [ 57 ]. Abbott argued that at the micro level of the team, these boundaries were always blurred or fuzzy, and it was at the organization and broader societal level that the boundaries were significant in claims for professional jurisdiction, clients, knowledge, resources and rewards [ 57 ]. The uncertainties on regulation, governance and multiple credentialling systems, which were reported by participants as inhibiting factors to the development of NMPs in EDs/UTCs, could be viewed as evidence of the national level jostling between some professional organisations for jurisdiction and resources. The reported preference not to redeploy resources from one professional group (i.e., medicine or nursing) to long term funding of NMP posts in EDs/UTCs will continue to be inhibiting to wider spread and adoption.

Further investigation is required to consider whether these findings are generalisable to other specialties, and to similar health systems in other countries.

Limitations and strengths

We identified three limitations of the study. The first limitation was that the mixed methods data collection was dependant on publicly available documents of NHS organisations and details of senior NHS postholders, which proved less accessible at the meso level due to NHS reorganisations before and during the study. We tried to mitigate this through a systematic method of national and regional website searching and cross referencing. A second limitation was the smaller number of senior participants interviewed than we had planned, in part due to the timing of approaches through surges of the COVID-19 pandemic and associated public health campaigns. We were able to ensure that participants who were able to be interviewed represented diversity in levels, regions and organisations of the health system. The third limitation was that some of the research team have investigated new roles in the NHS through a number of funded studies which may have influenced their interpretation of the findings from prior knowledge, although this could also be a strength. Input from the wider team helped mitigate this as it included members who have not undertaken investigations of this topic and brought diverse clinical, managerial, and academic discipline perspectives. A strength of this study use of mixed methods which enabled data collection at both macro and meso levels. A further strength was the study was framed theoretically, and this was used in the analysis and to propose new lines of empirical enquiry.

This study investigated the implementation of NMPs in EDs/UTCs in England from macro and meso perspectives synthesizing evidence from documentary analysis and interviews. The evidence suggested the numbers of NMPs were relatively small, unevenly distributed and growth uncertain. A broad macro level policy support was identified but in a general rather than prescriptive form which appeared to result in little tangible support at the meso level of the system. Subsequent to the study, further national policy has been issued directed to the recovery of the urgent and emergency services and increased employment of NMPs [ 47 ]. Longitudinal study is required to identify the extent to which this is implemented and whether factors identified in this study endure. While we identified many features of a system ready to introduce workforce innovation there appeared to be much ambiguity surrounding NMPs in EDs/UTCs and the potential for conflict with other professional groups. There were many uncertainties reported about regulation, governance and multiple credentialling systems of NMPs in ED/UTCs. This warrants consideration over time too and in the context of other health systems where regulation has been established. An additional reported area of ambiguity was whether or not there was research evidence documenting the relative advantage of including NMPs within the staffing of ED/UTCs. The production of such evidence, disseminated in a format easily accessible to senior clinicians and managerial policy makers requires urgent attention for short- and long-term workforce planning. Further investigation is required to consider whether these findings are generalisable to other specialties, and to similar health systems in other countries.

Availability of data and materials

The datasets used and/or analysed during the current study are available from Dr Mary Halter on reasonable request.

Abbreviations

Advanced Clinical Practice

Emergency care—advanced clinical practice

Emergency departments and urgent care treatment centres

Full time equivalent

Health Education England

National Health Service

Non-medical practitioner

• Nurse practitioners

Physician associates/assistants

Royal College of Emergency Medicine

Sustainability and Transformation Partnerships and Integrated Care Systems

United Kingdom

United States

World Health Organisation

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This is independent research funded by the National Institute for Health Research (NIHR Health Services and Delivery Research, NIHR131356—Implementation of the non-medical practitioner workforce into the urgent and emergency care system skill-mix in England: a mixed methods study of configurations and impact.). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health and Social Care.”

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VMD, MH, FT, JG, HJ contributed to the conception, design and gaining funding for the study, VMD, MH, FT collected data and analysed it, all auhtors contributed to the interpretation, VMD drafted the manuscript. All authors reviewed critically reviewed the manuscript for important intellectual content and agreed the final version.

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Drennan, V.M., Halter, M., Taylor, F. et al. Non-medical practitioners in the staffing of emergency departments and urgent treatment centres in England: a mixed qualitative methods study of policy implementation. BMC Health Serv Res 23 , 1221 (2023). https://doi.org/10.1186/s12913-023-10220-4

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Received : 09 July 2023

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Published : 08 November 2023

DOI : https://doi.org/10.1186/s12913-023-10220-4

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