- Email: [email protected]
Service users’ perceptions regarding their involvement in a physiotherapy educational programme in the UK: a qualitative study
Physiotherapy 99 (2013) 153–158
Service users’ perceptions regarding their involvement in a physiotherapy educational programme in the UK: a qualitative study Di Thomson a,∗ , Ros Hilton b a
School of Rehabilitation Sciences, Kingston University and St George’s, University of London, Cranmer Terrace, London SW17 0RE, United Kingdom b Academic Department of Physiotherapy, School of Medicine, King’s College London University, London, United Kingdom
Abstract Background The impact of user involvement in allied healthcare education is complicated by a lack of understanding of this concept both practically and ideologically. It is important to analyse whether service users perceive taking part as an ‘honour’ or as ‘agents of change’. Objective This study explored service users’ perspectives of their involvement in a UK college-based physiotherapy educational programme. Method A Grounded Theory approach utilising semi-structured interviews was conducted with eight of the service users who took part in the physiotherapy programme. The analysis of the interviews was carried out according to a grounded theory framework. Results All the service users wished to foster a sense of a partnership and communicate what it was like on the ‘other side’. Their personal agendas and possible motivation for taking part were to challenge the students assumptions regarding disability, to give something back for their healthcare and to communicate their dissatisfaction with present healthcare provision. Conclusion The participants felt that they could be instrumental in a process of change. One way to address this is to include this programme as an integral element of the current move towards life-long learning that supports their professional development in a range of authentic situations. Their reflexive dialogues with the service users can be documented as part of a reflexive portfolio with the service users as mentors. © 2012 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. Keywords: Healthcare education; User involvement; Perceptions of service users; Theory–practice gap; Life-long learning
Introduction The involvement of service users, patients and carers in healthcare education is gaining momentum and apart from a concerted effort to implement curricula with an ethos of patient-centred care there continues to be pressure from government reforms that individuals and communities should be placed at the centre of healthcare and its delivery [1]. The White paper [2] sets out the Government’s long-term vision for the future of the NHS with an emphasis on putting patients at the heart of everything the NHS does and subsequently the Health and Social Care Bill [3] again stresses the importance of patient-centred care. This has stimulated research into this area which in many ways has created more questions than answers. One might assume that the research would show that by engaging with service users during their education student health ∗
Corresponding author. Tel.: +44 208 725 0377. E-mail address: [email protected] (D. Thomson).
professionals would become more patient/client-centred and begin to make connections between scientific theory and technique in their curricula and ‘real life’ experiences. However the difficulties of translating the academic curricula into reallife situations continue and the perennial debate regarding the so-called theory–practice gap is one of concern [4]. Added to this Cowden and Singh [5] question the rhetoric of ‘user involvement’ and other related ideas such as ‘empowerment’ and ‘managing diversity’ indicating that they are nothing more than legitimating devices ‘for managerial elites’ (p. 20). This is borne out by service users often being called ‘consultants’ rather than ‘activists’ [5] Despite this criticism Morgan and Jones [6] in their substantive review of papers addressing pre-registration and post-registration health professionals’ programmes reported overwhelming benefits for service users and gave insights into why they became involved. Carers reported that the experience gave their caring experiences meaning and value and both service users and patients reported enhanced confidence [7,8] feelings of self-esteem and self worth [9] and
0031-9406/$ – see front matter © 2012 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. http://dx.doi.org/10.1016/j.physio.2012.07.004
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D. Thomson, R. Hilton / Physiotherapy 99 (2013) 153–158
Table 1 Participants’ profiles. Service user
Gender
Age range
Occupation (present or previous)
Condition
A B C
Female Male Female
50 to 60s 50 to 60s 80 to 90s
Formerly a teacher Finance consultant Housewife/retired
D
Female
50 to 60s
E
Male
60 to 70s
Formerly office worker/coffee factory/waitress/presently cares for grandchildren Night security
Double amputee Tetraplegic Arthritis/knee replacement/skin condition COPD
F G H
Female Female Female
50 to 60s 60 to 70s 70 to 80s
empowerment [10]. It would appear from the literature that service users either see themselves as being ‘honoured’ by being invited to take part in sessions with students or as agents of change, that is, seeing their task as changing how future health professionals perceive their role and eventually how healthcare is delivered. Ultimately it would be rather simplistic to say that interactions between students and service users alone will change healthcare delivery as it is a far more complex phenomenon and in critical realist terms it would ultimately depend on the settings the students and patients find themselves in, the power differentials in these settings and moreover how patients and students perceive their agency in these settings [11]. However hypothetically these programmes could enhance how both students and service users respond to their circumstances in the healthcare arena as demonstrated by the mental health service users in Speer’s [10] study who reported an increased sense of authority after reviewing students’ assessments of their current clients. With this in mind this study using a grounded theory approach will explore the service users’, patients’ and carers’ perspectives of their involvement in a programme in which they have been actively involved as patient–educators. This has previously been evaluated by the students who took part in the same programme [12]. This two-year programme spans higher education levels 4–6 (years 1–3 BSc (Hons) physiotherapy) in which patients, carers and service users interacted with students in small groups as ‘historians’ nurturing the students’ interviewing and clinical reasoning skills (level 4) and in a question and answer session sharing experiences of caring for their relatives (level 5). At level 6 they acted as assessors of the students’ work as well as leading small group critical debates about service provision (see Thomson and Hilton [12]). There is very little research in physiotherapy education that has evaluated both the students’ and service users’ perceptions of the same programme and it is hoped that
Formerly worked in a pub Owner of an art gallery Formerly health service manager
2 back operations/knee replacement COPD On-going back problems Long term carer/supporter for husband with dementia
this paper will complement the few papers that have reported on this important topic.
Methods Grounded theory was selected as the theoretical framework in which to base this study because it is characterised by its critical approach to conducting qualitative research and developing theory that is grounded in data systematically gathered and analysed [13]. Participants The sampling process of this study was purposive initially and then superseded by theoretical sampling as the data highlighted in which direction to proceed. All the service users who participated in the programme were invited to take part in the study and eight agreed to be interviewed for no longer that 45 minutes at a mutually agreed time and place (see Table 1). For ease of writing all participants are referred to as service users unless it is deemed important to specify otherwise. Data analysis Each stage of the analysis was discussed with a researcher experienced in Grounded Theory (known as peer review) so that possible bias by the researcher could be explored and challenged. In addition transcripts of the audio tapes of each interview were returned to each participant for them to verify that it was an accurate account of what took place. Fig. 1 shows the process of the analysis. A constant comparative analysis was used to refine the initial coding and to produce categories. Axial coding was carried out to refine the categories further to formulate the questions asked in each successive interview in line with an iterative process.
D. Thomson, R. Hilton / Physiotherapy 99 (2013) 153–158
155
Fig. 2. Theoretical model.
Fig. 1. The process of analysis.
Memo-writing allowed emergent ideas to be formally noted and included in the process. The interviews explored the categories in-depth until saturation occurred and the category could be fully understood [13]. Following the interviews a detailed development of the categories termed selective coding was utilised to produce a theme map [13] (see Fig. 1). Finally an emerging theoretical framework was formed that aids understanding and action in this area (see Fig. 2).
Findings Three main themes were generated from the data of the interviews as seen through the eyes of the service users. These themes had various sub-themes. The purpose of the programme Seeing the other side All the participants felt that it is important for students to understand what it is like being on the ‘other side’. ‘It’s not just a mending of bits and pieces They’ve got to be aware of how patients feel themselves. . .in the situation KL23p1 another remarked, ..you’re not an.. entity. If you can sit there and talk to them. . .as sort of two human beings on the same level, I think it means a lot more to people. They’re young! And. . .. they
can’t conceive what problems there are and what the results are of it! EL62p3 Cooper et al. [14] found that listening, understanding and getting to know the patient, were repeatedly cited in relation to this dimension. To cut across their theory Another aspect identified by the service users was to demystify theory as the only acceptable pre-cursor to effective healthcare delivery [15]. I mean, we. . .. . .have a lot to give them. Because I said to one of the students here, I know far more than she does or ever will about certain things, like how my shoulder feels. She knows much more about the text books . . ..and we need to work together BL56p2 However, in association with this all the service users equally wanted their physiotherapists to be skilled and knowledgeable, And there’s a need for it,; to get them trained to a certain standard,..to get this specialist knowledge applied to produce outcomes in problematic situations but you’re getting this applied with people. It’s joining together the technical knowledge and getting it to work. . . BL325p12 Interestingly all of the service users conceded that physiotherapy is essentially more complex than one might initially have thought. Because it’s like learning to drive, you need to know how the pedals work and everything; (but) most of the hardest work when driving is working with the other people on the road who have different attitudes to you, and we all need to rub along on the road. AL47p2
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A preparation for clinical placement The service users all agreed that this experience could be a useful pre-cursor to level one students who had not encountered clinical practice. I don’t see how you(can) wait until they’re on placement, because then you’re sort of working in an individual situation; whereas I would hope that what A*** and I do (is to) maybe give them some idea of the sort of problems that get in the way of an ideal progress. . .. . .. . .. have new experiences and ideas that they can then take to the individual situation HL42p2 Another service user commented that it is a context in which students can ask anything with no repercussions, I dearly wanted to say to them, “Well, look. . .. . ..., I don’t wish to appear to be rude, I know you’re students, but I feel sure that there are a lot of you that want to ask me questions, but are you shy? Or, maybe, is it you don’t really understand what COPD is or what it stands for!?” DL137p5 How they see their role in the programme Catalysts in fostering a sense of a partnership between patients and future physiotherapists The service users saw their role on the programme as catalysts in fostering a sense of a partnership between the students and their future patients in line with a patient-centred approach. In a session, the physio is in command and the patient is the receiver, and in my experience it’s not a two-way process, and it should be. BL51p2 Adding, It has to be a partnership. And in my experience, very few people in the NHS think that way BL62p3 What they want to achieve for themselves-personal agendas Given their ethos was to facilitate reflection and change in the students it was pertinent to discover if the service users perceived there were any outcomes for them personally as a result of taking part. Challenging the concept of disability One outcome for most of the service users was to challenge the students’ concept of disability. Many commented that the students were surprised at how able they were despite their diagnosis. Yes. Yeah, I do think they’re quite shocked sometimes. . .. . .. they think, oh, emphysema! You have severe emphysema?!! And they’re quite taken aback, because, yeah, and I can walk and I can talk and. . . yes! Students can find out that patients with emphysema can do all the normal things DL143p6
Another on the subject of how health professionals perceive people with disabilities commented, I’d rather most people don’t realise I’m in a wheelchair. I’m saying the disability is an irrelevance. . .. . ..Society, basically, is passing these things (attitudes) on, over and over again. (I’m) not angry, resigned. No, I’m not resigned, sorry – it’s got to change! BLL716p27 Shakespeare et al. [16] in their exploration into health professional students’ attitudes towards disability concluded that advancing the rights of people with disability early in curricula many avoid unnecessary negative attitudes.
Healthcare does not work Negative comments about existing healthcare provision were made by many of the service users and this was cited as one of the reasons for their involvement in the programme. One service user described candidly what it is like to be a patient in the clinical environment, It’s almost being sort of Uriah Heap, isn’t it? You know, you’re being deferential; you’re being, “Yeah, I know you know what you’re doing but. . .!” You know, there’s a “but” there! AL157p6 These latter comments suggest that the rhetoric may not be what actually occurs in practice and this appears to give the service users the impetus and possibly passion to be part of this programme. Interestingly Ottewill et al. [17] observed that the environment could be constraint free for the service users who may be more forthcoming than in the clinical environment. The service users were all desiring change and felt that this programme integrated within the students’ education might help. However they also expressed doubts . . .they’re always invited to question; in fact, they’re asked to. I mean, essay means argument, doesn’t it, you know? They’re invited to question, but once they’ve questioned it, they still come back to the same old way of doing it. . ... The students, I think, would take it on board; (however) they’re still governed by the people who say:you must do it like this! AL217p8 This comment, in many ways, indicated their powerlessness in the light of institutional authority and it is possible that the programme provided a forum to vent their feelings and sense of powerlessness.
Pay back Contrary to their previous comments one service user commented, I feel as though it’s my little bit of contribution towards the national health care that I’ve received here GL169p6 Another remarked,
D. Thomson, R. Hilton / Physiotherapy 99 (2013) 153–158
I think the rehab, probably the rehab they give now, is absolutely brilliant. . .. I think it gives you another complete outlook on life. So my outlook is even if it doesn’t benefit me, it’s got to benefit people in the future. So if we can all help give as much information, DL561p20 Dogra and Holley [18] also found that the patients who volunteered to be part of a community-based teaching programme of basic clinical skills saw it as a way of repaying the NHS, as well as assisting their GP who provides ongoing care.
Discussion This paper shows a cycle of events that not only gives the service users’ views on how they perceive the purpose of the programme and their role in achieving this but also may explain why service users wish to get involved in student health professionals’ curricula in what could be a fairly time consuming and demanding experience (see Fig. 2). The programme was constraint free and hence gave them a sense of autonomy and a feeling of being valued. Three strong motives emerged, that is to challenge the concept of disability, to voice their views that healthcare does not work and conversely to give something back for the care they have received. The latter two demonstrate an ambivalence and appear to concur with Ziebland et al. [19] in their study exploring the healthcare experiences of cancer sufferers who stated they felt they were fortunate to have received well-organized healthcare as though this had exceeded their expectations. This analysis suggests that people may be able to maintain the apparently contradictory opinions that the NHS is generally not very good despite the fact that their own particular experience of care was good. Controversially research into patient satisfaction shows that consistently high levels of satisfaction recorded may be due to the relative dependency of patients within healthcare delivery and their need to maintain constructive working relationships with those providing care [20]. The purpose of these programmes is ostensibly to translate the academic curricula into ‘real-life situations’ with service users although Morgan and Jones [6] in their review of similar programmes remarked on the difficulty of establishing a ‘cause and effect’ relationship between these programmes and changes in healthcare delivery. They stated that it would be easy to be cynical that they are simply paying lip service to patient-centred care and inviting service users onto these programmes just to appease the Government reforms. In many ways the service users in this study also expressed doubt that this programme would change the present culture that still owes so much to the medical model framework. Indeed in physiotherapy there is evidence that the medical model is still alive and well [21]. Following Pawson et al. [11], it seems that issues such as power differentials and the situations both patients and
157
therapists find themselves are the only powerful indicators of where change should occur. However Batalden and Davidoff [22] disagree and emphasise that it is the combined and unceasing efforts of everyone, healthcare professionals, patients and their families, researchers, planners and educators that will lead to better patient outcomes, better systems of care and better professional development. Much of the research into user involvement appears to be in the field of mental health and this could be a result of current ideas about the nature of mental health problems with their emphasis on coping strategies and changing the balance of power between being a ‘recipient patient’ towards being the ‘architect of one’s own recovery’ [23] (p. 26). Another difference could be that in many ways mental health problems unlike physical health problems are less visible and health professionals are obliged to adopt a more bio-psychosocial approach. In the mental health field Speers [10] reported an increased sense of empowerment felt by service users when they reviewed students’ assessments of their clients and in the present study the service users were invited to assess, alongside the academic staff, posters prepared by level 6 students. However Powers [24] issues a word of caution on the concept of empowerment and its liberal use in this area of research. Powers [24] refutes how empowerment is often interpreted as liberation and instead defines it as an activity performed by someone else to produce beneficial outcomes as defined by the person who instigates the empowerment strategies. Certainly some of the service users comments indicated that this was the case in their healthcare experience although they were not explicitly aware of it in their role on the programme. This, however, is an important question and one way to address this crucial point about inevitable power differentials is to include the programme as part of the current trend towards life-long learning as a pivotal part of the students’ education thus deposing the accumulation of knowledge and skills as the hub of their learning experience. There was a notable similarity between the students perceptions of the programme [12] and the service users as both agreed that the programme was a very important venture that needed to be integrated effectively into the curriculum. One way this could be achieved is for the dialogues between student and service user to be recorded in the students’ reflective portfolios. Dialogical reflection moves reflection into the public domain, broadening the scope for understanding the complexities of being a patient by unpacking experiential learning and thereby enhancing the students’ understanding. In turn the students can reflect on their understanding and initial beliefs about patients and it is interesting to note that in their evaluation of the programme the students perceived that meeting the service users challenged their assumptions and as a consequence opened them up to new ideas and new situational knowledge [12]. In many ways one might argue that to some extent this programme is fulfilling this aim implicitly but for these programmes to have a real place at the heart of students’ education a more explicit message needs to be revealed. It could
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be the start to a more emancipatory exploration of physiotherapy practice because as well as the students the service users may also follow ‘professional’ rules and conjecturally both have to learn new paradigms. The personal agendas of some of the service users certainly refute Cowden and Singh’s [5] assertion that service users are ‘consultants’ as opposed to being ‘activists’ as they appeared to have strong agendas which they wished to impart to the students. This, in part, appeared to be borne out from their critical perceptions of the health service although tempered by feelings of wishing to give back to the NHS and realising that they too have a responsibility in the delivery of their healthcare. Ultimately, what is needed is greater attention to evaluating the impact of user involvement on the practice of healthcare and health outcomes. Processes of user involvement seek to transform the culture of healthcare. This requires as much focus on the professional development of providers as the education and recruitment of users [25]. Ethical approval: Kings college Biomedical Sciences, Dentistry, medicine and Natural and Mathematical Sciences (BDM) /09/10-51. Conflict of interest: None.
References [1] Darzi A. High quality care for all: NHS Next Stage Review. Final report. London: Department of Health; 2008. [2] Department of Health. White paper equity and excellence: liberating the NHS. London: Department of Health; 2010. [3] Department of Health. Health and social care bill. London: Department of Health; 2011. [4] Newton JM, Billetts S, Jolly B, Ockerby CM. Lost in translation: barriers to learning in health professional clinical education. Learn Health Soc Care 2009;8(4):315–27. [5] Cowden S, Singh G. The ‘user’: friend, foe or fetish? A critical exploration of user involvement in health and social care. Crit Soc Policy 2007;27:5–23. [6] Morgan A, Jones D. Perceptions of service user and carer involvement in healthcare education and impact on students’ knowledge and practice: a literature review. Med Teach 2009;31(2):82–95. [7] Jones C. Involving NHS service users in teaching advanced clinical skills. Br J Nurs 2006;15(8):462–5.
[8] Haq I, Fuller J, Dacre J. The use of patient partners with back pain to teach undergraduate medical students. Rheumatology 2006;45(4):430–4. [9] Raj N, Badcock CJ, Brown GA, Deighton CM, O’Reilly SC. Undergraduate musculoskeletal examination teaching by trained patient educators: a comparison with doctor-led teaching. Rheumatology 2006;45(11):1404–8. [10] Speers J. Service user involvement in the assessment of a practice competency in mental health nursing. Nurse Educ Pract 2007;8(2): 112–9. [11] Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review – a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy 2005;10(S1):21–34. [12] Thomson D, Hilton R. An evaluation of students’ perceptions of a college programme involving patients, carers and service users in physiotherapy education. Physiother Res Int 2011;16:n/a, http://dx.doi.org/10.1002/pri.510. [13] Corbin J, Strauss A. Basics of qualitative research. 3rd ed. Los Angeles, CA: Sage; 2008. [14] Cooper K, Smith BH, Hancock E. Patient-centredness in physiotherapy from the perspective of the chronic low back pain patient. Physiotherapy 2008;94(3):244–52. [15] Todres L, Galvin K, Dahlberg K. Lifeworld-led healthcare: revisiting a humanising philosophy that integrates emerging trends. Med Health Care Philos 2007;10(1):53–63. [16] Shakespeare T, Lezzoni L, Groce N. Disability and the training of health professionals. Lancet 2009;374(9704):1815–6. [17] Ottewill R, Demain S, Ellis-Hill C, Greenyer CH, Kileff J. An expert patient-led approach to learning and teaching: the case of physiotherapy. Med Teach 2006;28(4):120–6. [18] Dogra N, Holley T. Involvement of service users in psychiatric education. In: Brown T, Eagles J, editors. Teaching psychiatry to undergraduates. London: RC Psych. Publications; 2011. p. 141–51. [19] Ziebland S, Evans J, Toynbee P. Exceptionally good? Positive experiences of NHS care and treatment surprises lymphoma patients: a qualitative study. Health Expect 2011;14(1):21–8. [20] Edwards C, Staniszewska S, Crichton N. Investigation of the ways in which patients’ reports of their satisfaction with healthcare are constructed. Sociol Health Illness 2004;26(2):159–83. [21] Nicholls D, Gibson B. The body and physiotherapy. Physiother Theory Pract 2010;26(8):497–509. [22] Batalden PB, Davidoff F. What is “quality improvement” and how can it transform healthcare? Qual Saf Health Care 2007;16:2–3. [23] Davidson L. Recovery, self management and the expert patient – changing the culture of mental health from a UK perspective. J Ment Health 2005;14(1):25–35. [24] Powers P. Empowerment as treatment and the role of health professionals. Adv Nurs Sci 2003;26(3):227–37. [25] Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy 2006;76(2):156–68.
Available online at www.sciencedirect.com
Service users’ perceptions regarding their involvement in a physiotherapy educational programme in the UK: a qualitative study Di Thomson a,∗ , Ros Hilton b a
School of Rehabilitation Sciences, Kingston University and St George’s, University of London, Cranmer Terrace, London SW17 0RE, United Kingdom b Academic Department of Physiotherapy, School of Medicine, King’s College London University, London, United Kingdom
Abstract Background The impact of user involvement in allied healthcare education is complicated by a lack of understanding of this concept both practically and ideologically. It is important to analyse whether service users perceive taking part as an ‘honour’ or as ‘agents of change’. Objective This study explored service users’ perspectives of their involvement in a UK college-based physiotherapy educational programme. Method A Grounded Theory approach utilising semi-structured interviews was conducted with eight of the service users who took part in the physiotherapy programme. The analysis of the interviews was carried out according to a grounded theory framework. Results All the service users wished to foster a sense of a partnership and communicate what it was like on the ‘other side’. Their personal agendas and possible motivation for taking part were to challenge the students assumptions regarding disability, to give something back for their healthcare and to communicate their dissatisfaction with present healthcare provision. Conclusion The participants felt that they could be instrumental in a process of change. One way to address this is to include this programme as an integral element of the current move towards life-long learning that supports their professional development in a range of authentic situations. Their reflexive dialogues with the service users can be documented as part of a reflexive portfolio with the service users as mentors. © 2012 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. Keywords: Healthcare education; User involvement; Perceptions of service users; Theory–practice gap; Life-long learning
Introduction The involvement of service users, patients and carers in healthcare education is gaining momentum and apart from a concerted effort to implement curricula with an ethos of patient-centred care there continues to be pressure from government reforms that individuals and communities should be placed at the centre of healthcare and its delivery [1]. The White paper [2] sets out the Government’s long-term vision for the future of the NHS with an emphasis on putting patients at the heart of everything the NHS does and subsequently the Health and Social Care Bill [3] again stresses the importance of patient-centred care. This has stimulated research into this area which in many ways has created more questions than answers. One might assume that the research would show that by engaging with service users during their education student health ∗
Corresponding author. Tel.: +44 208 725 0377. E-mail address: [email protected] (D. Thomson).
professionals would become more patient/client-centred and begin to make connections between scientific theory and technique in their curricula and ‘real life’ experiences. However the difficulties of translating the academic curricula into reallife situations continue and the perennial debate regarding the so-called theory–practice gap is one of concern [4]. Added to this Cowden and Singh [5] question the rhetoric of ‘user involvement’ and other related ideas such as ‘empowerment’ and ‘managing diversity’ indicating that they are nothing more than legitimating devices ‘for managerial elites’ (p. 20). This is borne out by service users often being called ‘consultants’ rather than ‘activists’ [5] Despite this criticism Morgan and Jones [6] in their substantive review of papers addressing pre-registration and post-registration health professionals’ programmes reported overwhelming benefits for service users and gave insights into why they became involved. Carers reported that the experience gave their caring experiences meaning and value and both service users and patients reported enhanced confidence [7,8] feelings of self-esteem and self worth [9] and
0031-9406/$ – see front matter © 2012 Published by Elsevier Ltd on behalf of Chartered Society of Physiotherapy. http://dx.doi.org/10.1016/j.physio.2012.07.004
154
D. Thomson, R. Hilton / Physiotherapy 99 (2013) 153–158
Table 1 Participants’ profiles. Service user
Gender
Age range
Occupation (present or previous)
Condition
A B C
Female Male Female
50 to 60s 50 to 60s 80 to 90s
Formerly a teacher Finance consultant Housewife/retired
D
Female
50 to 60s
E
Male
60 to 70s
Formerly office worker/coffee factory/waitress/presently cares for grandchildren Night security
Double amputee Tetraplegic Arthritis/knee replacement/skin condition COPD
F G H
Female Female Female
50 to 60s 60 to 70s 70 to 80s
empowerment [10]. It would appear from the literature that service users either see themselves as being ‘honoured’ by being invited to take part in sessions with students or as agents of change, that is, seeing their task as changing how future health professionals perceive their role and eventually how healthcare is delivered. Ultimately it would be rather simplistic to say that interactions between students and service users alone will change healthcare delivery as it is a far more complex phenomenon and in critical realist terms it would ultimately depend on the settings the students and patients find themselves in, the power differentials in these settings and moreover how patients and students perceive their agency in these settings [11]. However hypothetically these programmes could enhance how both students and service users respond to their circumstances in the healthcare arena as demonstrated by the mental health service users in Speer’s [10] study who reported an increased sense of authority after reviewing students’ assessments of their current clients. With this in mind this study using a grounded theory approach will explore the service users’, patients’ and carers’ perspectives of their involvement in a programme in which they have been actively involved as patient–educators. This has previously been evaluated by the students who took part in the same programme [12]. This two-year programme spans higher education levels 4–6 (years 1–3 BSc (Hons) physiotherapy) in which patients, carers and service users interacted with students in small groups as ‘historians’ nurturing the students’ interviewing and clinical reasoning skills (level 4) and in a question and answer session sharing experiences of caring for their relatives (level 5). At level 6 they acted as assessors of the students’ work as well as leading small group critical debates about service provision (see Thomson and Hilton [12]). There is very little research in physiotherapy education that has evaluated both the students’ and service users’ perceptions of the same programme and it is hoped that
Formerly worked in a pub Owner of an art gallery Formerly health service manager
2 back operations/knee replacement COPD On-going back problems Long term carer/supporter for husband with dementia
this paper will complement the few papers that have reported on this important topic.
Methods Grounded theory was selected as the theoretical framework in which to base this study because it is characterised by its critical approach to conducting qualitative research and developing theory that is grounded in data systematically gathered and analysed [13]. Participants The sampling process of this study was purposive initially and then superseded by theoretical sampling as the data highlighted in which direction to proceed. All the service users who participated in the programme were invited to take part in the study and eight agreed to be interviewed for no longer that 45 minutes at a mutually agreed time and place (see Table 1). For ease of writing all participants are referred to as service users unless it is deemed important to specify otherwise. Data analysis Each stage of the analysis was discussed with a researcher experienced in Grounded Theory (known as peer review) so that possible bias by the researcher could be explored and challenged. In addition transcripts of the audio tapes of each interview were returned to each participant for them to verify that it was an accurate account of what took place. Fig. 1 shows the process of the analysis. A constant comparative analysis was used to refine the initial coding and to produce categories. Axial coding was carried out to refine the categories further to formulate the questions asked in each successive interview in line with an iterative process.
D. Thomson, R. Hilton / Physiotherapy 99 (2013) 153–158
155
Fig. 2. Theoretical model.
Fig. 1. The process of analysis.
Memo-writing allowed emergent ideas to be formally noted and included in the process. The interviews explored the categories in-depth until saturation occurred and the category could be fully understood [13]. Following the interviews a detailed development of the categories termed selective coding was utilised to produce a theme map [13] (see Fig. 1). Finally an emerging theoretical framework was formed that aids understanding and action in this area (see Fig. 2).
Findings Three main themes were generated from the data of the interviews as seen through the eyes of the service users. These themes had various sub-themes. The purpose of the programme Seeing the other side All the participants felt that it is important for students to understand what it is like being on the ‘other side’. ‘It’s not just a mending of bits and pieces They’ve got to be aware of how patients feel themselves. . .in the situation KL23p1 another remarked, ..you’re not an.. entity. If you can sit there and talk to them. . .as sort of two human beings on the same level, I think it means a lot more to people. They’re young! And. . .. they
can’t conceive what problems there are and what the results are of it! EL62p3 Cooper et al. [14] found that listening, understanding and getting to know the patient, were repeatedly cited in relation to this dimension. To cut across their theory Another aspect identified by the service users was to demystify theory as the only acceptable pre-cursor to effective healthcare delivery [15]. I mean, we. . .. . .have a lot to give them. Because I said to one of the students here, I know far more than she does or ever will about certain things, like how my shoulder feels. She knows much more about the text books . . ..and we need to work together BL56p2 However, in association with this all the service users equally wanted their physiotherapists to be skilled and knowledgeable, And there’s a need for it,; to get them trained to a certain standard,..to get this specialist knowledge applied to produce outcomes in problematic situations but you’re getting this applied with people. It’s joining together the technical knowledge and getting it to work. . . BL325p12 Interestingly all of the service users conceded that physiotherapy is essentially more complex than one might initially have thought. Because it’s like learning to drive, you need to know how the pedals work and everything; (but) most of the hardest work when driving is working with the other people on the road who have different attitudes to you, and we all need to rub along on the road. AL47p2
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A preparation for clinical placement The service users all agreed that this experience could be a useful pre-cursor to level one students who had not encountered clinical practice. I don’t see how you(can) wait until they’re on placement, because then you’re sort of working in an individual situation; whereas I would hope that what A*** and I do (is to) maybe give them some idea of the sort of problems that get in the way of an ideal progress. . .. . .. . .. have new experiences and ideas that they can then take to the individual situation HL42p2 Another service user commented that it is a context in which students can ask anything with no repercussions, I dearly wanted to say to them, “Well, look. . .. . ..., I don’t wish to appear to be rude, I know you’re students, but I feel sure that there are a lot of you that want to ask me questions, but are you shy? Or, maybe, is it you don’t really understand what COPD is or what it stands for!?” DL137p5 How they see their role in the programme Catalysts in fostering a sense of a partnership between patients and future physiotherapists The service users saw their role on the programme as catalysts in fostering a sense of a partnership between the students and their future patients in line with a patient-centred approach. In a session, the physio is in command and the patient is the receiver, and in my experience it’s not a two-way process, and it should be. BL51p2 Adding, It has to be a partnership. And in my experience, very few people in the NHS think that way BL62p3 What they want to achieve for themselves-personal agendas Given their ethos was to facilitate reflection and change in the students it was pertinent to discover if the service users perceived there were any outcomes for them personally as a result of taking part. Challenging the concept of disability One outcome for most of the service users was to challenge the students’ concept of disability. Many commented that the students were surprised at how able they were despite their diagnosis. Yes. Yeah, I do think they’re quite shocked sometimes. . .. . .. they think, oh, emphysema! You have severe emphysema?!! And they’re quite taken aback, because, yeah, and I can walk and I can talk and. . . yes! Students can find out that patients with emphysema can do all the normal things DL143p6
Another on the subject of how health professionals perceive people with disabilities commented, I’d rather most people don’t realise I’m in a wheelchair. I’m saying the disability is an irrelevance. . .. . ..Society, basically, is passing these things (attitudes) on, over and over again. (I’m) not angry, resigned. No, I’m not resigned, sorry – it’s got to change! BLL716p27 Shakespeare et al. [16] in their exploration into health professional students’ attitudes towards disability concluded that advancing the rights of people with disability early in curricula many avoid unnecessary negative attitudes.
Healthcare does not work Negative comments about existing healthcare provision were made by many of the service users and this was cited as one of the reasons for their involvement in the programme. One service user described candidly what it is like to be a patient in the clinical environment, It’s almost being sort of Uriah Heap, isn’t it? You know, you’re being deferential; you’re being, “Yeah, I know you know what you’re doing but. . .!” You know, there’s a “but” there! AL157p6 These latter comments suggest that the rhetoric may not be what actually occurs in practice and this appears to give the service users the impetus and possibly passion to be part of this programme. Interestingly Ottewill et al. [17] observed that the environment could be constraint free for the service users who may be more forthcoming than in the clinical environment. The service users were all desiring change and felt that this programme integrated within the students’ education might help. However they also expressed doubts . . .they’re always invited to question; in fact, they’re asked to. I mean, essay means argument, doesn’t it, you know? They’re invited to question, but once they’ve questioned it, they still come back to the same old way of doing it. . ... The students, I think, would take it on board; (however) they’re still governed by the people who say:you must do it like this! AL217p8 This comment, in many ways, indicated their powerlessness in the light of institutional authority and it is possible that the programme provided a forum to vent their feelings and sense of powerlessness.
Pay back Contrary to their previous comments one service user commented, I feel as though it’s my little bit of contribution towards the national health care that I’ve received here GL169p6 Another remarked,
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I think the rehab, probably the rehab they give now, is absolutely brilliant. . .. I think it gives you another complete outlook on life. So my outlook is even if it doesn’t benefit me, it’s got to benefit people in the future. So if we can all help give as much information, DL561p20 Dogra and Holley [18] also found that the patients who volunteered to be part of a community-based teaching programme of basic clinical skills saw it as a way of repaying the NHS, as well as assisting their GP who provides ongoing care.
Discussion This paper shows a cycle of events that not only gives the service users’ views on how they perceive the purpose of the programme and their role in achieving this but also may explain why service users wish to get involved in student health professionals’ curricula in what could be a fairly time consuming and demanding experience (see Fig. 2). The programme was constraint free and hence gave them a sense of autonomy and a feeling of being valued. Three strong motives emerged, that is to challenge the concept of disability, to voice their views that healthcare does not work and conversely to give something back for the care they have received. The latter two demonstrate an ambivalence and appear to concur with Ziebland et al. [19] in their study exploring the healthcare experiences of cancer sufferers who stated they felt they were fortunate to have received well-organized healthcare as though this had exceeded their expectations. This analysis suggests that people may be able to maintain the apparently contradictory opinions that the NHS is generally not very good despite the fact that their own particular experience of care was good. Controversially research into patient satisfaction shows that consistently high levels of satisfaction recorded may be due to the relative dependency of patients within healthcare delivery and their need to maintain constructive working relationships with those providing care [20]. The purpose of these programmes is ostensibly to translate the academic curricula into ‘real-life situations’ with service users although Morgan and Jones [6] in their review of similar programmes remarked on the difficulty of establishing a ‘cause and effect’ relationship between these programmes and changes in healthcare delivery. They stated that it would be easy to be cynical that they are simply paying lip service to patient-centred care and inviting service users onto these programmes just to appease the Government reforms. In many ways the service users in this study also expressed doubt that this programme would change the present culture that still owes so much to the medical model framework. Indeed in physiotherapy there is evidence that the medical model is still alive and well [21]. Following Pawson et al. [11], it seems that issues such as power differentials and the situations both patients and
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therapists find themselves are the only powerful indicators of where change should occur. However Batalden and Davidoff [22] disagree and emphasise that it is the combined and unceasing efforts of everyone, healthcare professionals, patients and their families, researchers, planners and educators that will lead to better patient outcomes, better systems of care and better professional development. Much of the research into user involvement appears to be in the field of mental health and this could be a result of current ideas about the nature of mental health problems with their emphasis on coping strategies and changing the balance of power between being a ‘recipient patient’ towards being the ‘architect of one’s own recovery’ [23] (p. 26). Another difference could be that in many ways mental health problems unlike physical health problems are less visible and health professionals are obliged to adopt a more bio-psychosocial approach. In the mental health field Speers [10] reported an increased sense of empowerment felt by service users when they reviewed students’ assessments of their clients and in the present study the service users were invited to assess, alongside the academic staff, posters prepared by level 6 students. However Powers [24] issues a word of caution on the concept of empowerment and its liberal use in this area of research. Powers [24] refutes how empowerment is often interpreted as liberation and instead defines it as an activity performed by someone else to produce beneficial outcomes as defined by the person who instigates the empowerment strategies. Certainly some of the service users comments indicated that this was the case in their healthcare experience although they were not explicitly aware of it in their role on the programme. This, however, is an important question and one way to address this crucial point about inevitable power differentials is to include the programme as part of the current trend towards life-long learning as a pivotal part of the students’ education thus deposing the accumulation of knowledge and skills as the hub of their learning experience. There was a notable similarity between the students perceptions of the programme [12] and the service users as both agreed that the programme was a very important venture that needed to be integrated effectively into the curriculum. One way this could be achieved is for the dialogues between student and service user to be recorded in the students’ reflective portfolios. Dialogical reflection moves reflection into the public domain, broadening the scope for understanding the complexities of being a patient by unpacking experiential learning and thereby enhancing the students’ understanding. In turn the students can reflect on their understanding and initial beliefs about patients and it is interesting to note that in their evaluation of the programme the students perceived that meeting the service users challenged their assumptions and as a consequence opened them up to new ideas and new situational knowledge [12]. In many ways one might argue that to some extent this programme is fulfilling this aim implicitly but for these programmes to have a real place at the heart of students’ education a more explicit message needs to be revealed. It could
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be the start to a more emancipatory exploration of physiotherapy practice because as well as the students the service users may also follow ‘professional’ rules and conjecturally both have to learn new paradigms. The personal agendas of some of the service users certainly refute Cowden and Singh’s [5] assertion that service users are ‘consultants’ as opposed to being ‘activists’ as they appeared to have strong agendas which they wished to impart to the students. This, in part, appeared to be borne out from their critical perceptions of the health service although tempered by feelings of wishing to give back to the NHS and realising that they too have a responsibility in the delivery of their healthcare. Ultimately, what is needed is greater attention to evaluating the impact of user involvement on the practice of healthcare and health outcomes. Processes of user involvement seek to transform the culture of healthcare. This requires as much focus on the professional development of providers as the education and recruitment of users [25]. Ethical approval: Kings college Biomedical Sciences, Dentistry, medicine and Natural and Mathematical Sciences (BDM) /09/10-51. Conflict of interest: None.
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