Article Text
Abstract
Objectives Given the growing population of older persons, medical students need to develop an appropriate professional identity to comply with older persons’ healthcare needs. In this study, we explored the needs and expectations of older persons regarding their doctor to gain more insight into the characteristics of this professional identity.
Design A qualitative study based on a constructivist research paradigm was conducted, based on individual semistructured, in-depth interviews using a letter as a prompt, and focus groups. Thematic analysis was applied to structure and interpret the data.
Setting and participants Our study population consisted of older persons, aged 65 years and above, living at home in the South-West of the Netherlands, with no apparent cognitive or hearing problems and sufficient understanding of the Dutch language to participate in writing, talking and reflecting. The in-depth interviews took place at the participant’s home or the Leiden University Medical Center (LUMC), and the focus groups were held at the LUMC.
Results The older persons shared and reflected on what they need and expect from the doctor who takes care of them. Four major themes were identified: (1) personal attention, (2) equality, (3) clarity and (4) reasons why.
Conclusion Increasing complexity, dependency and vulnerability that arise at an older age, make it essential that a doctor is familiar with the older person’s social context, interacts respectfully and on the basis of equality, provides continuity of care and gives clarity and perspective. To this end, the doctor has to be caring, involved, patient, honest and self-aware. Participation in a community of practice that provides the context of older persons’ healthcare may help medical students develop a professional identity that is appropriate for this care.
- medical education & training
- geriatric medicine
- qualitative research
- education, medical
- nursing homes
- primary health care
Data availability statement
Data are available upon reasonable request. The datasets generated and analysed during this study are not publicly available due to promised anonymity of the participants but are available from the corresponding author on reasonable request and with permission of the participants in question.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- medical education & training
- geriatric medicine
- qualitative research
- education, medical
- nursing homes
- primary health care
STRENGTHS AND LIMITATIONS OF THIS STUDY
To increase the validity of our data, we created methodological triangulation by using three research methods.
The participation of an older person as a patient representative, who was involved in the study design, recruitment and formulation of the discussion section of the manuscript, contributed to ensuring the patient perspective on our study.
The participants in our sample were all Dutch, well-educated urban older persons living at home. This is a necessary step for a first exploration of the research question, although it limits the generalisability of our findings to other older persons in and outside the Netherlands.
The first author is an elderly care physician and has experience talking to older persons. This may have been a strength in that it created safety and rapport during the interviews. Conversely, being an elderly care physician may have influenced the interpretation of the data.
Introduction
Worldwide, the population aged 65 years or above is expected to rise to 1.5 billion in 2050, increasing from 9.3% of the total population in 2020 to 16.0% in 2050.1 Health concerns of older age differ from those of younger persons, and future medical doctors will face old age healthcare challenges regardless of their chosen medical specialties.2–6 Educators in medical school therefore have to prepare all medical students for older persons’ healthcare.7–9 Defined geriatric competencies and learning outcomes can facilitate medical educators in guiding medical students.10–12 Becoming a doctor for older persons, however, goes beyond building competencies. It also requires the development of an appropriate professional identity that enables medical students to give older persons the healthcare they need.13–19 Therefore, a deeper understanding of this appropriate professional identity is required. Literature on professional identity and its formation in relation to geriatric medical education is scarce.17 Studies describe patient-centredness, collaboration, approachability and giving holistic care as important characteristics medical students need to develop to take care of older persons.17 20
To gain more insight into the professional identity of older persons’ healthcare, we use the concepts of ‘socialisation in a community of ‘practice’ and ‘social contract’ in this study. The professional identity of the doctor describes how doctors see themselves and how they want to be seen by others.14 21 The development of this professional identity is a process of socialisation in which the characteristics, values and norms of the medical profession are internalised, gradually resulting in thinking, acting and feeling like a doctor.14 22 23 This process takes place in the community of practice of medicine, which is characterised by a group of professionals with shared values, knowledge base and practices.13 22 24–27 Engaging in patient care, observation of role models and experiences with patients are described as important socialisation factors.13–15 24 27 28
Through the lens of the concept of ‘social contract’, the relationship between medicine and society can be seen as a contract between two parties, in which reciprocal expectations and societal needs are important aspects.29 30 Expectations and needs of a society regarding healthcare evolve over time, and as a result values, norms and practices of medicine’s community of practice may change. This will result in the transformation of certain aspects of the doctor’s professional identity.14 15 24 27 29 31 32 The growing population of older persons leads to a change in society’s healthcare expectations and needs regarding the doctor.2 27 32–34 We therefore argue that knowledge about the expectations and needs of older persons in society can help us gain more insight into the appropriate professional identity medical students need to develop for older persons’ healthcare.
Older persons’ involvement and engagement in healthcare and research has been developed over the years.35–37 To our knowledge there is, however, little literature on the exploration of older persons’ needs and expectations related to the doctors’ professional identity. One study in Switzerland investigated hospitalised older patients’ perceptions of ‘good’ and ‘bad’ doctors.38 This study showed that internal medicine patients, mean age 72, defined a good doctor as scientifically proficient and sensitive to the patients’ feelings. However, needs and expectations are culturally determined.39 A study in the Netherlands explored the expectations that community-dwelling older persons have of their general practitioner (GP) when they experience pain or mobility problems. They expect their GP to be proactive, easily accessible, attentive, well informed and engaged.40 This study, however, was related to older persons with specific health problems and concerned only the GP.
The aim of this study is to gain more insight into the characteristics of the professional identity medical students need to develop for the care of older persons. To this end, we explored the expectations and needs of older persons in Dutch society regarding the doctor who takes care of them.
Methods
Methodology
Because of the paucity of literature on the topic, we conducted an explorative qualitative study based on a constructivist research paradigm. In this philosophical framework, reality can be understood through analysis and interpretation of people’s experiences.41 We used older persons’ narratives of their needs and expectations regarding the doctor who takes care of them, to better understand the professional identity of the doctor in relation to older persons’ healthcare. We applied thematic analysis to structure the data using an inductive approach to identify themes that are strongly linked to the data.42–44 The whole research team was involved in the interpretation of the data.42 43
Public and patient involvement
There was patient and public involvement and engagement (PPIE) in this study, aimed at including the perspectives of older persons. To this end, a member of the Senior’s Advisory Board ‘Care and Well-being’ of South-Holland North participated in the design of the study, recruitment of participants and formulation of the discussion section of the manuscript. This Senior’s Advisory Board is a team of older individuals in the region South-Holland North who aims to bring older persons’ perspectives into research, education and policy. The organisation is part of the Leiden University Medical Center (LUMC). By this cocreation, members want to contribute to the improvement of the ageing society in the Netherlands.45
Research team
Our research team included an elderly care physician, medical teacher and PhD candidate in medical education (AM-J), a cultural/medical anthropologist, medical teacher and qualitative researcher (KL), a general practitioner and professor in general practice (JG), a general practitioner and professor in medical education (AK) and an elderly care physician and professor of institutional care and elderly care medicine (WPA).
Context
We conducted this study between February and July 2023 at the LUMC in the Netherlands. Participants were recruited in close cooperation with the Senior’s Advisory Board Health and Well-being. This organisation is one of the eight regional organisations in the Netherlands that represent older persons in the region and facilitate the participation of older persons in education, research and policy. Recruitment was carried out via the newsletter of this organisation in which we described the aim of the study and what we expected from participants.
Participants
We used inclusion criteria to select participants. Older persons living at home, aged 65 years and above, who had no apparent cognitive or hearing problems and with sufficient understanding of the Dutch language to participate in writing, talking and reflecting on the topic, could join the study. From the older persons who signed up, we purposefully sampled participants on age and gender for the interviews and focus groups to ensure a diversity to feed the data.
Data collection
To better understand the expectations and needs of older persons regarding the doctor they need, we used three research methods to collect our data to create triangulation; a letter to a student used as a prompt for the interview, an individual semistructured in-depth interview to explore individual needs and expectations, and focus groups to discuss and so deepen our understanding of needs and expectations.46–48 To collect as much rich information as possible, we used an iterative approach till data saturation occurred which means that data were collected until no new themes were generated.49
The letter
First participants were asked to write a letter to a fourth-year medical student who is entering the clerkships. They could write to a female (Sophie) or a male (Bart) medical student and were asked to share with them what they need and expect from the doctor who takes care of them. A general instruction was created to guide the participant. Participants wrote the letter at home in the days before the interview.
The interview
The individual, semistructured, in-depth interview by AM-J took place at the participant’s home or the LUMC (depending on the participant’s preference). In this interview of approximately 1 hour, participants shared what they expected and needed from their doctor, using the letter they wrote as a prompt. A topic list was composed for this interview based on the concepts of expectations and needs (see online supplemental file 1).50 51
Supplemental material
The focus group
After analysis of the interviews and the identification of themes, two focus groups were conducted with other participants than the interview participants to deepen our understanding of the major interview themes. We made a topic list of these themes. For each major theme (‘personal attention’, ‘equality’, ‘clarity’ and ‘reasons why’), participants were asked to share and discuss what this theme means to them. AM-J led the focus groups and KL observed. These focus groups took place at the LUMC and lasted approximately 90 min.
The interviews and focus groups were audio recorded and transcribed verbatim. We carried out a linguistic, orthographic transcription.52
Data analysis
The letters, only used as a prompt for the participants to reflect on the topic during the interview were not analysed as a separate dataset. We first analysed the individual interviews. To identify themes that are strongly linked to the data, we followed the six-step method of thematic analysis, using an inductive approach, open coding and iterative analysis.42–44 For the coding process, the first researcher AM-J reviewed the first three interviews by reading and re-reading the transcripts and listening to the audio tapes to become familiar with the data. After this first step, she generated a list of open codes on items related to expectations and needs older persons have regarding their doctor. The senior researchers (KL and AK) independently reviewed those three interviews by reading and re-reading the transcripts. AM-J, KL and AK discussed the open codes and organised them into a list of starting codes. Then, three more interviews were analysed in the same way. AM-J, KL and AK discussed new codes that were identified and inductively redefined the codes into a coding scheme, generating themes related to the research question. Subsequently, AM-J analysed another three interviews by applying the coding scheme and reviewed themes with KL and AK. The iterative process was repeated until no new themes were identified. The coding scheme was finalised after the analysis of 12 interviews and discussed by the whole research team. To be sure that no new data would arise, we carried out another interview. This additional interview did not add new ideas. The final themes were grouped into an overview of four major themes to capture the essence of the expectations and needs older persons have regarding their doctor: (1) personal attention, (2) equality, (3) clarity and (4) reasons why. Each major theme includes subthemes (as described in the Findings section).
After this analysis process, the major themes were discussed in the focus groups. Next, researchers AM-J, KL and AK analysed the focus group interviews, discussed new information that was identified and inductively redefined the major themes and subthemes. A final overview of themes was achieved after two focus groups (one with four participants and one with five participants) and discussed by the whole research team. Together with the research team, AM-J gave meaning to the themes by creating narrative descriptions to explain the stories each theme tells. These stories are described in the findings, using quotes from participants to illustrate key features.42 43 AM-J made field notes in which she described the process of data gathering and analysis and reflected on the choices she and the research team made. Moreover, she reflected on being an elderly care physician and the influence of this on her interpretation of the date. To ensure reflexivity, she analysed the data together with KL and AK.
Findings
22 persons participated in the study, 13 women and 9 men, aged 68–85 years. During the individual and focus group interviews, participants shared and reflected on what they need and expect from the doctor who takes care of them. We identified four major themes: (1) personal attention, (2) equality, (3) clarity and (4) reasons why.
In addition to these themes, it was noticed that most participants while reflecting on their needs and expectations, referred to a doctor with whom they had frequent contact or a relationship over a longer period of time. This could be their GP or a medical specialist. Furthermore, participants particularly reflected on the interaction between them and the doctor and mentioned almost no needs and expectations concerning medical expertise, which they viewed as self-evident. When meeting a doctor, they assumed skilled medical expertise. Some participants preferred a female doctor because of their personal way of interacting.
Personal attention
To be known and understood
Most participants expect a doctor who knows who they are and makes them feel that ‘it is truly about me’. This doctor has a total picture of their life, social context and history. To be known provides a sense of trust. They emphasise the need to be seen as a person who is ill instead of attention being paid only to the technical aspects of an ‘ulcer or broken leg’. Participant 3 shared:
Suppose I became ill. I wouldn’t just want to be my illness. I’d still want to be who I am, who is sick…that’s what I mean, that you are known as a human being and not just as your disease.
Furthermore, they expect an empathetic doctor who is interested and understands what a problem means to them and the impact it has on their life. Participant 4 explained:
In that case, you could say well that shoulder of yours is frozen and it is broken…What is important to you? What things do you need your arm for?
To experience human contact
Participants describe the doctor who shows them personal attention as compassionate, caring and warm. Someone who has an informal chat, makes eye contact, sits next to them and will use gentle touch if necessary. They perceive their relationship with this doctor as friendly. Some speak of a doctor with a ‘female touch’. A doctor who is continuously looking at the computer screen is described as cold and disinterested. Participant 9 shared:
Simply caring. I believe there are two things. First be caring, which means you listen, and second, simple touch…it’s a human connection.
To feel welcome
All participants emphasise they need a doctor who takes enough time and makes them feel welcome. This doctor is patient, sits down, listens carefully and leaves room to ask questions. The experience of being hurried makes participants feel inhibited. Participant 4 shared her experience:
It’s basically just taking the time to tell you what’s going on…that they sit down. When I think about the hospital…they are always standing and that makes you feel like, okay, so you’ve told me what you needed to say…but this doesn’t give you the opportunity to take a moment to think about what you have heard and to respond to it…
Several participants mentioned that a doctor can create a welcome feeling by meeting or calling them regularly. Participants expect this continuity especially when there is a severe illness or life event.
Equality
To be taken seriously
All participants expect a doctor who respects them, who doesn’t patronise or treat them like a child or a ‘crybaby’. They emphasise that it is important that their complaint ‘isn’t dismissed as a common aspect of ageing'. Participant 15 shared what this meant to him:
That doctor shouldn’t be thinking oh dear, this is an ailing senior here in front of me. You know. Well, just stuff three pills in there, he’s off to heaven next week anyway, so what’s the point?
They appreciate a doctor who is self-aware, who is aware of what he or she does and doesn’t know, and who can be vulnerable and open to feedback. Participant 8 shared her experience:
And when I once mentioned that I thought she had slipped up, she said yes, I understand, thank you for telling me actually. Well, those are good doctors in my book…who are open to feedback.
To work together
Participants need a doctor who interacts with them at the same level, with no hierarchy. They explicitly emphasise that they have extensive life experience and are experts on their own lives and bodies. They expect a doctor to respect this and discuss and make decisions together with them. Participant 9 shared:
…that the doctor doesn’t look down on me and say I’m the better person…I’m a doctor, I know best. And then I say, ‘It’s my body, I know better than you!’ That’s why I think ‘together’ is very important…
Some participants mentioned the importance of professional distance in their interaction with a doctor. For participant 7, this meant:
He should also exude a certain authority. So it’s not like we’re all buddy-buddy…that, well, not on the, the same level so to speak. I’m afraid you wouldn’t be able to speak freely anymore…there has to be some distance there…there must be a certain authority…
Clarity
To be told the honest story
All participants expect a doctor who is open and realistic about a diagnosis, treatment or prognosis. This doctor is not afraid to say what needs to be said, explains things clearly and does not use jargon. If they feel that information is withheld or sugarcoated, they become restless and uncertain. Participant 3 explained what she needs:
Suppose it had a bad prognosis. Or that he doesn’t know yet. That he is open about it, no matter how difficult that would be for me. But in a calm atmosphere, you know. And there has to be room for me to respond…to check like, is the message getting across.
To cocreate a perspective
Furthermore, most participants emphasise that ‘life at their age is definitely still worth living’. They need a positive doctor who sees it that way, focuses on possibilities, provides perspective and helps them to accept the things they can no longer do. Some participants mention the use of humour to put things into perspective. Participant 6 shared his experience:
I mean…growing old inevitably comes with ailments, you know. And of course you could say, gosh, what a shame. Or you can say: we’ll make do with what we have…and enjoy it as much as possible.
Reasons why
Social context
Participants mention that their social context has changed compared with their younger years. They have become caregivers, children are grown up, friends and family have passed away or they are widowed themselves. These changes influence their well-being. It is therefore essential that the doctor is familiar with their social context and understands the impact a problem has on their life. Participant 15 explained:
But I think for the older patient and when you see a doctor, you expect him to look a bit further and take a broader view…That he says, are you still managing at home? That he checks or asks if you can manage by yourself or if you need help…that he includes the social context.
Life experience
Participants have many life years, which creates life experience and wisdom. They emphasise that they expect a doctor who respects them, is open to feedback and works together with them on a basis of equality. Participant 1 shared:
I bring so much life experience and experience and knowledge about my own body and my own illness to the table. You already know so much. Then I feel that a GP should understand when you walk in, that you obviously already have a whole past behind you…
Complexity
Most participants make a distinction between a ‘simple’ or ‘severe’ condition as regards what they expect from a doctor. In their younger years, they mainly had simple symptoms for which they needed a quick solution, and it was less relevant if the doctor knew them. Participant 12 explained:
Yes, well a wart isn't a big deal…but if I have a serious problem….then it would nice to have a doctor who already knows all that…someone you start looking at more as a friend. Not as a stranger, but as someone, well, who knows you better.
As they get older, they develop more and more serious conditions, which cannot always be cured. Furthermore, they experience functional decline, lower energy and a decreased overview. They also realise that the years they have left are limited. These elements all make them feel more vulnerable and dependent and create complexity in healthcare needs. That is why they need time and continuity of care from a caring doctor who knows and understands them and who provides clarity and perspective. Participant 11 shared:
Because we have more ailments…You feel your health is declining and that you may be having more dealings with the GP or others. That you would also like proper guidance in that respect…You prefer having one single person to rely on.
Some participants share they do not have other needs and expectations from the doctor in their older age because they had different illnesses and often needed a doctor when they were younger. Participant 13 explained:
I needed so much care when I was a child…so I was at the doctor’s fairly often…I mean there always were contacts with doctors… in one way or another…I don't expect there to be much difference.
Discussion
To gain more insight into the characteristics of the professional identity that medical students need to develop for the care of older persons, we explored the expectations and needs older persons have regarding the doctor who takes care of them.
We identified that older persons need and expect a doctor who shows them personal attention, is empathetic and positive and values interaction based on equality, respect and humanity. This doctor is familiar with the social context, takes time, listens carefully and is responsive to needs. Moreover, this doctor is open and explains clearly, works together with the older person and gives perspective. These characteristics are particularly needed in case of serious illnesses or life events, which are more present at an older age. Becoming older also means functional decline, less grip and energy and limited years remaining. Furthermore, changes in the social context influence well-being. These factors generate complexity in care needs and older persons feel more vulnerable and dependent which makes it essential that the doctor meets their needs and expectations.
Our findings show similarities with the needs and expectations of the general public regarding the doctor.32 38 39 53 Literature shows that the personal qualities and social skills of the doctor are more prominently mentioned by patients than knowledge and technical skills.30 32 53 The characteristics of showing personal attention, empathy and compassion, taking time, listening carefully and explaining clearly are also expected by younger patients.32 38 39 53 Furthermore, it is known that female doctors are described as more personal and empathetic compared with male doctors.54 Our study adds to and clarifies what is important to persons when they become older. Increasing complexity, dependency and vulnerability make it essential that the doctor is familiar with the person’s social context, interacts with them respectfully and on the basis of equality, provides continuity of care and gives clarity and perspective. To this end, the doctor has to be caring, involved, patient, honest and self-aware.
We contribute to a better understanding of the professional identity formation of medical students in relation to older persons’ healthcare. It is known that the growing population of older persons will lead to a change in society’s healthcare expectations and needs and that this change will influence what is expected regarding the doctor’s professional identity.2 24 27 29 31–34 55 Our study shows what characteristics of the doctor are important to older persons and also why these characteristics are essential which shows the challenges of older persons’ healthcare.55 This knowledge may contribute to the dialogue between society and the community of practice of medicine regarding certain aspects of the professional identity of present and future doctors.24 27 29 31–33 Furthermore, we know that engaging in patient care, observation of role models and experiences with patients in a community of practice are important factors in the professional identity formation process.13–15 24 27 28 56 Socialisation in a community of practice that provides role models and practices that meet the described characteristics and challenges, can help medical students to develop an appropriate professional identity for older persons’ healthcare.13–15 17 20 24 27 28 56 After a nursing home clerkship, medical students mentioned participating in the lives of the older patients over a longer period of time and observing the nursing home doctors as role models as important experiences for their becoming.20
Strengths and limitations
To increase the validity of our data, we created methodological triangulation by using three research methods.48 The participation of an older person as a patient representative, who participated in the study design, recruitment of participants and formulation of the discussion section of the manuscript, contributed to ensuring the perspective of the patient in our study. Furthermore, AM-J is an elderly care physician and has experience talking to older persons. This may have been a strength in that it created safety and rapport during the interviews. Conversely, being an elderly care physician may have influenced the interpretation of the data, which is a limitation. To ensure reflexivity, the data were analysed together with a cultural/medical anthropologist and a general practitioner, and AM-J made field notes. Another limitation of our study was that our sample consisted of participants who were all Dutch, well-educated urban older persons living at home. For a first exploration of the research question, this is a necessary step. However, it limits the transferability of our findings to other older persons in and outside the Netherlands.
Implications for medical education
Based on our findings, we emphasise the importance of medical students’ engagement in the context of older persons’ healthcare. Therefore, we recommend active older PPIE in medical education to create a curriculum based on patients’ perspectives, needs and expectations.57 58 Working together with patients in medical education, where patients’ narratives are central, influences the professional identity formation of medical students towards patient-centredness.56 Furthermore, appropriate clinical communities of practice can provide participation of medical students in older persons’ lives and appropriate role models. The nursing home and the care for older patients at home are described as suitable clinical contexts.59–62 Having long-term relationships with patients is known to stimulate the development into a patient-centred doctor, able to show personal attention and humanity.63 64 We argue that curriculum committees should be aware of the value of older persons as collaborators in medical education, and we recommend that medical school provides long-term clinical placement in the context of older persons’ healthcare.
Moreover, professional identity formation has to be explicitly addressed as an educational objective in medical school to make medical students active participants of their becoming.16 22 27 For the development of a professional identity, guided reflection on experiences with patients and role models is described as fundamental to socialisation and therefore required to create personality change.13 16 27 56 65 Faculty development can facilitate medical educators to mentor medical students in this reflection and make professional identity formation explicit and effective.16 27
Additionally, the characteristics of the professional identity in relation to the care of older persons may be relevant to the care of other patient groups. From the literature, we know that adults with chronic diseases benefit from equality in collaboration with a physician.66 Furthermore, the need for continuity of care and having a close relationship with a trusted healthcare professional is described in palliative care and cancer care.67 68
Future research
More research is needed to further explore the topic of an appropriate professional identity and its formation in relation to older persons’ healthcare. In future research, we will explore the needs and expectations of a broader population of older persons in and outside the Netherlands and investigate the generalisability of our results to other patient groups with complex healthcare needs. The participation of older persons in the development, delivery and evaluation of medical education will also be an area of research. Furthermore, to gain more insight into this appropriate professional identity, we want to explore the perspectives of doctors working in older persons’ healthcare on their professional identity formation. We ultimately intend to develop educational interventions to encourage the development of an appropriate professional identity based on our findings.
Conclusion
Medical students need to develop an appropriate professional identity to meet older persons’ healthcare needs. In this study, we explored the needs and expectations older persons have regarding their doctor to gain more insight into the characteristics of this professional identity. The challenges of increasing complexity, dependency and vulnerability that arise at an older age, make it essential that a doctor is familiar with the older person’s social context, interacts respectfully and on the basis of equality, provides continuity of care and gives clarity and perspective. To this end, the doctor has to be caring, involved, patient, honest and self-aware. Participation in a community of practice that provides role models and practices that meet these challenges and characteristics may help medical students develop a professional identity that enables them to give older persons the healthcare they need.
Data availability statement
Data are available upon reasonable request. The datasets generated and analysed during this study are not publicly available due to promised anonymity of the participants but are available from the corresponding author on reasonable request and with permission of the participants in question.
Ethics statements
Patient consent for publication
Ethics approval
This research project was approved by the LUMC non-WMO Review Committee (nr 23-3024). Participants gave informed consent to participate in the study before taking part. Participation was fully voluntary and confidential. All participants were informed about the aim of the study, the study procedures and provided written informed consent, part of which was consent to publish anonymised responses. To guarantee confidentiality, each participant was assigned a number.
Acknowledgments
The authors thank the participants who were asked to share their experiences.
They also thank Margriet van Rees as patient representative.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors AM-J contributed to the study design, data collection, the analysis and interpretation of the data and drafted the manuscript. KL contributed to the study design, the analysis and interpretation of the data. JG contributed to the analysis and interpretation of the data. AK contributed to the study design, the analysis and interpretation of the data. WPA contributed to the study design, the analysis and interpretation of the data. The patient representative contributed to the study design, the recruitment of participants and the formulation of the discussion section of the manuscript. AM-J is the guarantor. All authors were involved in writing the manuscript and approved its final version for publication.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.