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From support to boundary: A qualitative study of the border between self-care and professional care
Patient Education and Counseling 79 (2010) 55–61
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Self Management
From support to boundary: A qualitative study of the border between self-care and professional care§ Tara Kielmann a, Guro Huby b, Alison Powell a, Aziz Sheikh a, David Price c, Sian Williams d, Hilary Pinnock a,* a
Centre for Population Health Sciences, University of Edinburgh, UK Centre for Integrated Healthcare Research, University of Edinburgh, UK c Dept of General Practice and Primary Care, University of Aberdeen, UK d IMPRESS group, British Thoracic Society, London, UK b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 10 November 2008 Received in revised form 10 July 2009 Accepted 14 July 2009
Objective: While healthcare systems globally are promoting self-care, patients’ perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients’ perceptions and experiences of self-care in dealing with their respiratory illnesses. Methods: We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach. Results: Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt ‘abandoned’ by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients’ knowledge about their condition and preferences for management. Conclusion: The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care. Practice implications: Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and coordination of individual patient care by a key trusted professional are essential. ß 2009 Elsevier Ireland Ltd. All rights reserved.
Keywords: Self-care Patient/professional communication Respiratory illness Patient perceptions
1. Introduction Health services are changing globally to meet the increasing challenge of providing care for people with long-term conditions (LTCs) [1,2]. In the United Kingdom (UK), consistent priorities for National Health Service (NHS) reform have been the shift from hospital to community based care [3–5] and an emphasis on selfcare to ‘‘enable people with long-term conditions to take more control of their health’’ [1,4,5] and to ‘‘manage their care [. . .] as ‘expert patients’’’ [6]. § The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the Department of Health. * Corresponding author at: Allergy & Respiratory Research Group, Centre for Population Health Sciences, GP Section, University of Edinburgh, 20 West Richmond Street, Edinburgh EH8 9DX, UK. Tel.: +44 0131 650 8102; fax: +44 0131 650 9119. E-mail addresses: [email protected] (T. Kielmann), [email protected] (G. Huby), [email protected] (A. Powell), [email protected] (A. Sheikh), [email protected] (D. Price), [email protected] (S. Williams), [email protected] (H. Pinnock).
0738-3991/$ – see front matter ß 2009 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2009.07.015
Changes in policy, reflecting contemporary trends that challenge professional expertise and increase interest in lay knowledge of health and illness [7], have led to the emergence of the term ‘lay expert’ [7–9]. The concept of ‘self-care’ within this context repositions patients from being passive recipients of expert care to active partners who share responsibility for their medical care. Critics have raised concerns that self-care may be an excuse to contain costs [10,11] and reduce professional care [12]. Self-management education can improve outcomes [13,14], despite recognised barriers, including patients’ variable preference for autonomy. This may be influenced by friends or family, perceived severity of symptoms, social context, timing in the course of the illness and adequacy of communication with their physician [10]. Degeling et al. [15] not only outline the need for patients to be involved in decision-making, but also recognise the importance of the patient–provider relationship. They describe a ‘support’ area between patient self-care and professional management [15]. Similarly, Kennedy et al. [16] call for a ‘whole systems approach’ to supporting self-care including changing professional
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Fig. 1. A whole systems approach to supported self-care (reproduced with permission (Kennedy et al. [16])).
attitudes, improving access to care and increasing patient information (see Fig. 1). Outstanding research questions include understanding patient preferences about changes in healthcare delivery, specifically their willingness to engage in ‘partnership’ [17]. Nested within an ethnographic study, which explored the development of respiratory services in four purposively sampled primary care organisations (PCOs) across England and Wales [18], we undertook a qualitative study about patients’ understanding of changes in the healthcare system. ‘Self-care’ emerged as an important theme, and we explored respiratory patients’ perceptions of ‘self-care’, and how communication and access to professionals shaped their role in the management of their illness. 2. Methods Our study had ethical approval from South-East Multicentre Research Ethics Committee and research governance approval from the four participating PCOs [19]. 2.1. Participant recruitment We adopted a broad approach to recruitment to reflect our interest in how the healthcare system supports patients with respiratory LTCs. In each PCO (see Table 1), we advertised in the local press and distributed information leaflets via general practitioner (GP) surgeries (both via mailshots and opportunistically), outpatient clinics, pharmacies, and community patient support (Breathe-Easy) groups. We monitored age, gender,
experience of healthcare services, and type of respiratory illness of respondents to ensure that we recruited people with diverse profiles. Potential participants were contacted by phone, asked for consent and invited to complete an illness diary with telephone interviews and/or participate in a focus group. 2.2. Data generation Data were approaches.
generated
through
three
complementary
2.2.1. Illness diaries Participants kept illness diaries over a month, recording symptoms in the context of their overall life situation, the range of formal/informal support, information sources and healthcare services accessed (see Appendix 1). The benefits of this methodology for providing clinically relevant information include the possibility of exploring internal dialogues that may be easier to express in the written form than in interviews [20]. 2.2.2. Telephone interviews The semi-structured telephone interviews were integral to the illness diaries. Using open-ended questions, the first interview explored how participants dealt with their condition in the context of available services and their access to information and support (see Appendix 2). The second interview allowed detailed discussion of issues recorded in the diary, and facilitated a respondentcentred exploration of the salient features of the respiratory condition and its management in the context of local services and
Table 1 Key features of the four case study areas. Team PCO
Merged PCO
GPwSI (in training) service. Development driven by a local team with a ‘diagnosis to death’ vision of respiratory services. The team actively involved GP, PCO and hospital interests.
Established GPwSI service. Roll out of the established GPwSI referral service to the enlarged PCO. Development linked to a turnaround team’s stringent financial measures.
Commissioning PCO
Rural PCO
Nurse-led community respiratory service. Intermediate care service commissioned by PCO primarily to reduce hospital admissions.
One specialist respiratory nurse supporting GP and community nurse care. Development was focused on using existing resources, with the appointment of a charity-funded second community specialist respiratory nurse.
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planned development. Interviews were recorded and fully transcribed. 2.2.3. Focus groups A focus group was arranged in each PCO (excluding the very rural area where a single group was impractical). Facilitated by two researchers, groups included some patients who had contributed to the illness diaries as well as additional participants to broaden the perspectives. Discussions were audio-taped with consent and lasted about an hour [21]. They drew on emerging themes from the illness diaries and interviews and were tailored to the local situation (see Appendix 3). As well as general questions about development of local services, discussions focused on patients’ sources of care specifically exploring the emerging theme of respondents’ perceptions and experience of ‘self-care’. 2.3. Data analysis We used the ‘framework approach’, developed specifically for applied qualitative research, as it allows both inductive and deductive coding [22]. We reflected on the data, searching for emerging themes and patterns. All transcripts were then coded using NVivo 7 (QSR International, Doncaster, Australia) into six broad categories (see Appendix 4). We specifically looked for deviant cases. Self-care emerged as an aspect of living with respiratory disease that was important to our participants, relevant to our study objectives, and resonated with our knowledge of theoretical frameworks [15,16]. Our understanding evolved as we discussed the findings within the multidisciplinary team and consulted policy documents and social science literature regarding self-care, lay knowledge and patient–provider interactions. Data analysis was iterative so that the later timing of the focus groups enabled us to test and further explore themes emerging from initial analysis of the illness diaries and interviews. Triangulation occurred through our constant comparison of the findings obtained from the three data sources. 3. Results Participants. Of the 49 patients who contacted us, 31 agreed to participate. Tables 2 and 3 provide details of the participants by PCO, age, gender and respiratory condition. Overview of main themes. Overarching themes clustered in three domains: (1) Understanding of ‘self-care’: the ways in which, and reasons why, participants engaged in their own care and their perceptions of advantages and disadvantages of sharing responsibility for management of their condition; (2) the relationship between patients and professionals and factors impacting on access and communication; and (3) patients’ role in shaping professional care. There were no deviant cases. Indeed, it was striking how similar the participants’ accounts were concerning self-care.
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Table 2 Number of participants by PCO and method.
Team PCO Merged PCO Commissioning PCO Rural PCO
Phone interview only
Illness diary + phone interviews
Focus group discussion
2 – 1 –
4 7 4 2
1a 4b 10c –
Note: Overall 31 participants took part in the patient study. A few contributed to several of our data collection methods and are thus double-counted as noted below. a 3 participants had been expected, only one turned up. This participant was also involved in the illness diary. b 3 of these participants took part in the illness diary. c None of these participants took part in the illness diary.
3.1. Patient self-care Most patients were aware of the policy shift encouraging selfcare, with health professionals increasingly acknowledging patients’ understandings of their own body and health and transferring some clinical responsibilities to their control (e.g. patients holding emergency supplies of treatment). For many, however, ‘encouraging’ self-care seemed incongruous as the term seemed to describe what all patients were already doing on a daily basis. Self-care began from the moment they woke up until the moment they went to sleep exemplified by the response to a question about their main sources of care: ‘‘I don’t have any care at all, I’m the carer.’’ [60–69-year-old man with chronic obstructive pulmonary disease (COPD)]. Most respondents felt they had gained sufficient knowledge over the years to cope confidently with most symptoms without medical assistance. ‘‘I’m not somebody who will see the doctor for the sake of it. As long as my health is under control, I will keep well away from such people. [. . .] I just feel it’s a waste of time because I know what I’m doing now.’’ [60–69-year-old man with asthma and COPD] Carers were important sources of emotional and practical support in self-care, as was information from Breathe-Easy Groups, health books or journals, relatives, friends and the Internet. 3.1.1. Advantages of self-care 3.1.1.1. Regaining control. Several patients described how they felt comfortable being responsible for their own treatment, taking pride in being able to manage (and experiment with) their medication with minimal professional input. ‘‘I do every now and again take a night off (medication) to see how I am and whether I really need it, I sort of trial myself.’’ [40– 49-year-old woman with asthma] For some, self-care provided a new role and sense of control, helping to boost confidence despite the frustration of losing their previous active roles in the household.
Table 3 Participant details by age category, gender and type of condition. Age range 40–49 50–59 60–69 70–79 80–89 Total
Women
Men
Type of condition
Total number
2 4 1 4 –
– 2 10 7 1
Asthma (2) Asthma (2), asthma and COPD (3), sleep apnoea (1) COPD (5), asthma and COPD (2), bronchiectasis (2), sarcoidosis (1), lung cancer (1) Asthma and COPD (1), COPD (9), sleep apnoea (1) Asthma (1)
2 6 11 11 1
11
20
Asthma (5), asthma and COPD (6), COPD (14), sleep apnoea (2), bronchiectasis (2), sarcoidosis (1), lung cancer (1)
31
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‘‘I feel as though I’m hitting back somehow which makes me feel I can do something.’’ [60–69-year-old woman with bronchiectasis] 3.1.1.2. Avoiding medical care. A desire to avoid health professionals was common, and several patients described persisting in self-care despite deteriorating symptoms, rather than arranging a consultation. ‘‘I don’t like to bother people, you know, I’ll kind of struggle on and struggle on until I’m, you know, desperate really before I bother them.’’ [40–49-year-old woman with asthma] Avoidance of hospital admission and being able to stay within familiar surroundings, avoiding impersonal care and uncommunicative hospital staff, and the risk of contracting methicillinresistant Staphylococcus aureus (MRSA), were all mentioned as advantages of care at home. ‘‘They [hospital staff] just do their business and it’s like no partnership, they do the business and it’s ‘goodbye, thank you very much’ and you’re out the door. There’s no sort of ‘can I ask a question on this’ or ‘can I ask that’,[. . .].’’ [60–69-year-old man with COPD] 3.1.2. Disadvantages of self-care 3.1.2.1. Feeling abandoned. Participants sometimes felt uncomfortable with the responsibility of self-care. Hints of feeling abandoned and left to their own devices without sufficient regular professional input surfaced in several interviews. ‘‘. . . I said, ‘Well why are you only seeing me every month or two?’ ‘Oh well, you always seem to be able to manage’. And so well, I can, but should I be, should I be just doing it all on my own, do you know what I mean? I don’t know, the more independent and able to manage you are the less keen they are to see you sometimes.’’ [40–49-year-old woman with asthma] 3.1.2.2. Lack of support. Concern was voiced when patients felt that encouragement towards self-care was not matched by expert guidance and resources to support self-management. Several participants alluded to a communication gap between patients and their health professionals: ‘‘. . .we’re not all getting the information we should be getting’’ [50–59-year-old woman with asthma and COPD]. 3.2. The relationship between patients and professionals Although some patients had defined strategies for knowing when to seek help, others expressed anxiety about not being able to recognise warning symptoms, making it difficult to know exactly when to seek medical advice. ‘‘[. . .] the main problem [. . .] is that I don’t know when I’m ill, because you go down a little step each day and, you know, it’s hard to say when you’ve reached the point where you want some treatment.’’ [70–79-year-old man with COPD] Many responses suggested that independent self-care felt appropriate ‘‘as long as you know what you’re doing, as long as you’re happy’’ [50–59-year-old woman with asthma], but that greater comfort in managing the condition depended on reliable professional back-up.
3.2.1. Flexible access to advice and reassurance 3.2.1.1. Flexible access to professionals. Self-care seemed to work most effectively if access to a trusted health provider was flexible and responsive to need. This could just be the opportunity to call or e-mail to ask a quick question. ‘‘[. . .] although I’ve been saying to you that I know how to control the asthma and so on,. . . [What] I have got very confused by, is that actually the recommendations have kept changing. [. . .]. It’s probably because I’m getting worse and older but it would be nice actually to be able to email somebody like her [nurse] as well and just sort of say. . .remind me of the procedure of coming off a high steroid and she would be able to. . .’’ [50–59-year-old man with asthma and COPD] Several patients appreciated the security and continuity of care provided by clinicians who were easily accessible and provided flexible professional support at varying stages throughout the management of their disease. ‘‘He said if I have any problems just ring either him or the nurse up and they would sort it out, which I knew I could do.’’ [50–59year-old woman with asthma]
3.2.1.2. Regular contact and reassurance. Some patients suggested that an occasional routine review from their provider could reassure them that their condition had not deteriorated and that they were ‘‘doing the right thing’’. ‘‘And I’ve tried to sort of say look, [. . .] give me a ring once a month and say: ‘Are you OK, how you doing?’, you know, ‘What’s happening, how are you managing, are you all right?’, that’s all, not any more than that.’’ [40–49-year-old woman with asthma] The benefit of speaking to a professional – however briefly – was often mentioned as an asset for those who had a good relationship with their providers. ‘‘And I just think if you can speak to a doctor sometimes it will make you feel better and sometimes you can feel lousy, really lousy but you can go to the doctor and when you come out, even if he ain’t really done much, if they’ve said well, you know, ‘You’ll be alright in a couple of days’, you automatically feel better.’’ [50–59-year-old woman with asthma]
3.2.2. Communication Communication surfaced as key to navigating the healthcare system. Participants identified both facilitators and barriers in their quest for good communication. 3.2.2.1. Facilitators in communication. Being older, better educated or more confident were mentioned as potential advantages in the negotiation process. In addition, a solid relationship built up over time could enable good and open communication. Terms such as ‘‘working relationship’’, and ‘‘trust both ways’’ were used to describe positive experiences of interactions between patients and professionals. Patients who achieved this type of partnership seemed more content with managing their care independently. ‘‘He (the GP) really put his mark on the practice. You could talk anything through with him, whatever it was and you always felt that when you left him you’d come to a mutual agreement.’’ (70–79-year-old man with COPD)
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3.2.2.2. Barriers in communication. Difficulties in establishing an open and honest rapport with professionals included the fear of not being seen as ‘‘a good patient’’ resulting in downplaying of symptoms. Several respondents described how clinicians would not respond well if patients seemed ‘‘whiny’’ or complained too much. Health professionals’ reactions to patients’ queries were frequently described as barriers to communication. A tendency not to ‘‘take things seriously’’ when patients attempted to discuss ideas they deemed important caused some to give up trying to communicate with their providers altogether. ‘‘Well, I did discuss it but they are not really interested. I mean when they see you are not dying and you make all these suggestions they always look at you as if you’ve been spending too much time on the Internet. . .’’ [60–69-year-old man with asthma and COPD] Even participants who had taken part in Expert Patient Programmes or pulmonary rehabilitation which had provided strategies for asking questions and discussing care with professionals, found the recommendations difficult to follow in real life when faced with an uninterested provider. ‘‘I just completed a pulmonary rehabilitation course at the hospital and I sort of learned a lot from them, and also that I don’t complain enough. [. . .] And they gave us a form to give to the doctor, which I did because I had a chest infection a few weeks ago and he just sort of looked at it and sort of put it to one side, you know, and said ‘Well, we’ll think about that’.’’ [70–79year-old woman with COPD] 3.3. Negotiating professional care Some participants illustrated ways in which they had used their knowledge to negotiate and shape professional decisions about their care. Although some considered that too much knowledge and insight on their part could make professionals uncomfortable or ‘‘threatened that their knowledge is going to be challenged’’ [40– 49-year-old woman with asthma], many felt that being knowledgeable about their condition gave them bargaining power. ‘‘[. . .] at the hospital I argued about not going on steroids but they just accepted my arguments at the time and said ‘alright let’s see what happens’ and so I put off taking them for six months or more (. . .)So in that respect they’d taken account of my views on the treatment.’’ [60–69-year-old man with sarcoidosis] Some patients contrasted their knowledge about the condition with that of providers who they sometimes felt lacked experience and expertise to advise them. ‘‘Yes, because it’s like anything medical it’s your body and you know your body better than anybody else and you know your body how it responds to different medications better than doctors, you know, if you feel that medication is making you feel a certain way or unwell then you tell the doctor and, you know, you make them listen.’’ [60–69-year-old man with lung cancer] Conversely, other participants emphasised the limits of their knowledge and felt that they had reached the limit of their capacity for self-care and now needed expert advice. ‘‘You’ve gone to them and said ‘I need your help, I can’t deal with it, I want you to make me better’. That’s their authority from my
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point of view, to tell you what to do. [. . .] I mean nowadays it’s well ‘What do you think about it?’ and you know, the answer really is ‘Well, I don’t know, that’s why I’ve come to see you. . . because you’re the expert!’’’ [70–79-year-old man with COPD] 4. Discussion and conclusion 4.1. Discussion Participants were aware of the increasing focus on self-care, although from their perspective, they were already self-caring on a day-to-day basis. While many were content to accept more responsibility for their care, others felt abandoned by their professionals. Occasional professional reviews provided reassurance and underpinned a caring relationship. The desire for flexible access (timely, and employing a choice of face-to-face, telephone and e-mail communication) to professional support was fundamental in ensuring confidence with self-care. Some patients were involved in negotiating and shaping their professional care, reflecting an evolution from the traditional active doctor/passive patient relationship. Although 20% responded to the direct mailshot, our ‘advertising’ approach to recruitment resulted in a low yield, perhaps because busy clinicians did not distribute many/most of the leaflets. We therefore accepted everybody who agreed to participate, though we monitored recruitment and were satisfied that the profile of disease, age and gender broadly reflected the prevalence of conditions and older age range of people with LTCs; ethnic minorities were however under-represented. Respondents are likely to have been particularly interested in the organisation of their care. We have provided background information about both patients and PCOs to enable readers to assess transferability of our findings [23]. We remained aware that researchers’ attitudes influence design, data collection and analysis of qualitative studies [24]. However, the range of approaches used for data generation and in particular the use of illness diaries allowed patients to voice their reflections relatively uninfluenced by the researchers. In addition, our regular multidisciplinary discussions helped to ensure a balanced interpretation. Our findings demonstrate the complexity of self-care and associated support needs. Patients were communicating and securing relationships with professionals in ways that challenge the traditional position of patients as passive recipients of medical expertise [25] and repositioned them at the centre of their care [7,8]. However, while Degeling et al. [15] characterise the area between patients and professionals as ‘support’, our data suggest that it may be better described as a ‘boundary’ (real or virtual), which can be easy or difficult to cross and is defined by the individual patient–professional relationship (see Fig. 2). This ‘boundary’ is not static; rather its position varies not only between patients, but also crucially within the same patient throughout the experience of their illness. Patients are relatively comfortable in the ‘realm’ of self-care when their symptoms are stable and they feel confident in their own/carer’s knowledge of the condition. When symptoms become more severe, however, the patient’s ability to communicate with their professionals across the boundary becomes crucial. Echoing other research, our participants emphasised the importance of relationships with professionals that were based on trust, confidence, familiarity, mutual respect, shared decisionmaking and good communication [26–28]. Our observation on the confidence-boosting aspect of regular contact with clinicians resonates with the concept of ‘guided self-management’ in asthma [29–31]. Self-management interventions which focus exclusively on modifying patient behaviour [32,33] overlook the pivotal barrier of poor communication with professionals [34,35].
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Fig. 2. The chronic disease management pyramid with the boundary between professional and self-care (adapted from Degeling et al. [15]).
Clinicians’ reactions to patients’ questions and suggestions can block communication [36,37] and even strategies recommended in Expert Patient Programmes [38] could not always overcome these barriers in ‘real’ consultations. It is unrealistic to expect all patients to be able to communicate assertively in consultations: professional training must emphasise communication skills. Our data demonstrate that patients can gain the confidence to cross the ‘boundary’ and negotiate their care and treatment when an exchange of ideas is enabled. This negotiation may explain why patients with asthma action plans attract better treatment from their attending clinicians [29,39–42]. Kennedy et al. [16] broaden the debate to include a system perspective, which spreads the responsibility for improvement in self-care strategies across three levels, patient, professional and structure (see Fig. 1). Similarly, Gately [43] encourages changes in service organisation and professional practices at the interface with patients. Resonating with this, our findings demonstrate that confidence with self-care is enhanced when patients feel secure that they can access professional advice promptly, when they feel it is appropriate, using diverse modes of communication. In addition, for some patients, occasional clinician-initiated contact added to feeling ‘‘cared for’’ thus avoiding a sense of abandonment. For self-care to be effective, service arrangements need to include flexible access across the ‘boundary’ and the space and time for professionals to support their self-caring patients. 4.2. Conclusion All patients are involved in self-care and many appreciated the responsibility and sense of control it gave them. Some, however, were concerned about the limitations of self-care and felt abandoned when routine professional support decreased. Patients valued flexible access and communication at the boundary between professional and self-care in order to feel comfortable managing their condition. Professionals need a broader understanding of patients’ concerns about self-care to adapt management strategies according to the patient’s fluctuating capacity, informal support and needs.
resulting from increasing specialisation, a confusing multiplicity of new professional roles and commissioning of ‘packages of care’) can make the boundary seem more impenetrable and make selfcare more difficult. Flexible access to professional care implies services delivered in a timely manner by an appropriate professional at a suitable location and recognises that different modes of consultation will fulfil different needs. Further research is needed to understand and evaluate ways of supporting people with LTCs to optimise self-care strategies, of developing clinicians’ communication skills, providing flexible access to primary, intermediate and secondary care advice, and of using different modes of consultation to best effect. Conflict of interests The authors declare that they have no competing interests. Funding National Institute for Health Research Service Delivery and Organisation Programme. SDO/99/2005. HP is supported by a Primary Care Research Career Award from the Chief Scientist’s Office, Scottish Government. Acknowledgements We thank the patients for their valuable insights they provided through their illness diaries, interviews and focus group discussions. We also greatly appreciated the help of all the practice staff who were involved in the recruitment process and kindly provided us with space to conduct the focus group discussions. Our thanks also go to Rosemary Porteous, the study secretary, for her support with transcription and administration and Dr Fiona Harris for her support with the analysis. I confirm all personal identifiers have been removed or disguised so the persons described are not identifiable and cannot be identified through the details of the story.
4.3. Practice implications
Appendix A. Supplementary data
Our findings provide insight into the patient perspective on recent policy shifts, aspects of which (fragmentation of services
Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.pec.2009.07.015.
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[23] Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P. Qualitative research methods in health technology assessment: a review of the literature. Health Technol Assess 1998;2:16. [24] Cutcliffe JR. Reconsidering reflexivity: introducing the case for intellectual entrepreneurship. Qual Health Res 2003;13:136–48. [25] Parsons T. The social system. Chicago: Free Press; 1951. [26] Rogers A, Entwistle V, Pencheon D. A patient led NHS: managing demand at the interface between lay and primary care. Brit Med J 1998;316:1816–9. [27] Thompson AGH. The meaning of patient involvement and participation in health care consultations: a taxonomy. Soc Sci Med 2007;64:1297–310. [28] Charles C, Gafni A, Whelan T. Decision-making in the physician–patient encounter. Soc Sci Med 1999;49:651–61. [29] The British Thoracic Society/Scottish Intercollegiate Guideline Network. British guideline on the management of asthma. Thorax 2008;63(Suppl. 4):1–121. [30] Gibson PG, Powell H, Coughlan J, Wilson AJ, Abramson M, Haywood P, et al. Self-management education and regular practitioner review for adults with asthma. Cochrane Database Syst Rev 2002. doi: 10.1002/14651858.CD001117. Art. No.: CD001117. [31] The Global Initiative on Asthma. Asthma prevention and management: a practical guide for public health officials and health care professionals; 2007, www.ginasthma.com. [32] Bourbeau J, Nault D, Dang-Tan T. Self-management and behaviour modification in COPD. Patient Educ Couns 2004;52:271–7. [33] Van Dam HA, Van Der Horst F, Van Der Borne B, Ryckman R, Crebolder H. Provider–patient interaction in diabetes care: effects on patient self-care and outcomes. A systematic review. Patient Educ Couns 2003;51:17–28. [34] Jerant A, von Friederichs-Fitzwater M, Moore M. Patients’ perceived barriers to active self-management of chronic conditions. Patient Edu Couns 2005;57: 300–7. [35] Stevenson FA, Barry CA, Britten N, Barber N, Bradley CP. Doctor–patient communication about drugs: the evidence for shared decision making. Soc Sci Med 2000;50:829–40. [36] Entwistle V, Prior M, Skea ZC, Francis JJ. Involvement in treatment decisionmaking: its meaning to people with diabetes and implications for conceptualisation. Soc Sci Med 2008;66:362–75. [37] Wilson PM, Kendall S, Brooks F. Nurses’ responses to expert patients: the rhetoric and reality of self-management in long-term conditions: a grounded theory study. Int J Nurs Stud 2006;43:803–18. [38] Patient UK Expert Patients; 2008, http://www.patient.co.uk/showdoc/ 40024857/. [39] Department of Health. Modernising medical careers; 2008, http://www. mmc.nhs.uk/pages/home. [40] Moudgil H, Marshall T, Honeybourne D. Asthma education and quality of life in the community: a randomised controlled study to evaluate the impact on white European and Indian subcontinent ethnic groups from socioeconomically deprived areas in Birmingham. Thorax 2000;55:177–83. [41] Osman L, Calder C, Godden D, Friend J, McKenzie L, Legge J, et al. A randomised trial of self-management planning for adult patients admitted to hospital with acute asthma. Thorax 2002;57:869–74. [42] Thoonen B, Schermer T, Van Den Boom G, Molema J, Folgering H, Akkermans R, et al. Self-management of asthma in general practice, asthma control and quality of life: a randomised controlled trial. Thorax 2003;58:30–6. [43] Gately C. Re-thinking the relationship between long-term condition selfmanagement education and the utilisation of health services. Soc Sci Med 2007;65:934–45.
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Self Management
From support to boundary: A qualitative study of the border between self-care and professional care§ Tara Kielmann a, Guro Huby b, Alison Powell a, Aziz Sheikh a, David Price c, Sian Williams d, Hilary Pinnock a,* a
Centre for Population Health Sciences, University of Edinburgh, UK Centre for Integrated Healthcare Research, University of Edinburgh, UK c Dept of General Practice and Primary Care, University of Aberdeen, UK d IMPRESS group, British Thoracic Society, London, UK b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 10 November 2008 Received in revised form 10 July 2009 Accepted 14 July 2009
Objective: While healthcare systems globally are promoting self-care, patients’ perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients’ perceptions and experiences of self-care in dealing with their respiratory illnesses. Methods: We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach. Results: Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt ‘abandoned’ by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients’ knowledge about their condition and preferences for management. Conclusion: The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care. Practice implications: Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and coordination of individual patient care by a key trusted professional are essential. ß 2009 Elsevier Ireland Ltd. All rights reserved.
Keywords: Self-care Patient/professional communication Respiratory illness Patient perceptions
1. Introduction Health services are changing globally to meet the increasing challenge of providing care for people with long-term conditions (LTCs) [1,2]. In the United Kingdom (UK), consistent priorities for National Health Service (NHS) reform have been the shift from hospital to community based care [3–5] and an emphasis on selfcare to ‘‘enable people with long-term conditions to take more control of their health’’ [1,4,5] and to ‘‘manage their care [. . .] as ‘expert patients’’’ [6]. § The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the Department of Health. * Corresponding author at: Allergy & Respiratory Research Group, Centre for Population Health Sciences, GP Section, University of Edinburgh, 20 West Richmond Street, Edinburgh EH8 9DX, UK. Tel.: +44 0131 650 8102; fax: +44 0131 650 9119. E-mail addresses: [email protected] (T. Kielmann), [email protected] (G. Huby), [email protected] (A. Powell), [email protected] (A. Sheikh), [email protected] (D. Price), [email protected] (S. Williams), [email protected] (H. Pinnock).
0738-3991/$ – see front matter ß 2009 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2009.07.015
Changes in policy, reflecting contemporary trends that challenge professional expertise and increase interest in lay knowledge of health and illness [7], have led to the emergence of the term ‘lay expert’ [7–9]. The concept of ‘self-care’ within this context repositions patients from being passive recipients of expert care to active partners who share responsibility for their medical care. Critics have raised concerns that self-care may be an excuse to contain costs [10,11] and reduce professional care [12]. Self-management education can improve outcomes [13,14], despite recognised barriers, including patients’ variable preference for autonomy. This may be influenced by friends or family, perceived severity of symptoms, social context, timing in the course of the illness and adequacy of communication with their physician [10]. Degeling et al. [15] not only outline the need for patients to be involved in decision-making, but also recognise the importance of the patient–provider relationship. They describe a ‘support’ area between patient self-care and professional management [15]. Similarly, Kennedy et al. [16] call for a ‘whole systems approach’ to supporting self-care including changing professional
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Fig. 1. A whole systems approach to supported self-care (reproduced with permission (Kennedy et al. [16])).
attitudes, improving access to care and increasing patient information (see Fig. 1). Outstanding research questions include understanding patient preferences about changes in healthcare delivery, specifically their willingness to engage in ‘partnership’ [17]. Nested within an ethnographic study, which explored the development of respiratory services in four purposively sampled primary care organisations (PCOs) across England and Wales [18], we undertook a qualitative study about patients’ understanding of changes in the healthcare system. ‘Self-care’ emerged as an important theme, and we explored respiratory patients’ perceptions of ‘self-care’, and how communication and access to professionals shaped their role in the management of their illness. 2. Methods Our study had ethical approval from South-East Multicentre Research Ethics Committee and research governance approval from the four participating PCOs [19]. 2.1. Participant recruitment We adopted a broad approach to recruitment to reflect our interest in how the healthcare system supports patients with respiratory LTCs. In each PCO (see Table 1), we advertised in the local press and distributed information leaflets via general practitioner (GP) surgeries (both via mailshots and opportunistically), outpatient clinics, pharmacies, and community patient support (Breathe-Easy) groups. We monitored age, gender,
experience of healthcare services, and type of respiratory illness of respondents to ensure that we recruited people with diverse profiles. Potential participants were contacted by phone, asked for consent and invited to complete an illness diary with telephone interviews and/or participate in a focus group. 2.2. Data generation Data were approaches.
generated
through
three
complementary
2.2.1. Illness diaries Participants kept illness diaries over a month, recording symptoms in the context of their overall life situation, the range of formal/informal support, information sources and healthcare services accessed (see Appendix 1). The benefits of this methodology for providing clinically relevant information include the possibility of exploring internal dialogues that may be easier to express in the written form than in interviews [20]. 2.2.2. Telephone interviews The semi-structured telephone interviews were integral to the illness diaries. Using open-ended questions, the first interview explored how participants dealt with their condition in the context of available services and their access to information and support (see Appendix 2). The second interview allowed detailed discussion of issues recorded in the diary, and facilitated a respondentcentred exploration of the salient features of the respiratory condition and its management in the context of local services and
Table 1 Key features of the four case study areas. Team PCO
Merged PCO
GPwSI (in training) service. Development driven by a local team with a ‘diagnosis to death’ vision of respiratory services. The team actively involved GP, PCO and hospital interests.
Established GPwSI service. Roll out of the established GPwSI referral service to the enlarged PCO. Development linked to a turnaround team’s stringent financial measures.
Commissioning PCO
Rural PCO
Nurse-led community respiratory service. Intermediate care service commissioned by PCO primarily to reduce hospital admissions.
One specialist respiratory nurse supporting GP and community nurse care. Development was focused on using existing resources, with the appointment of a charity-funded second community specialist respiratory nurse.
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planned development. Interviews were recorded and fully transcribed. 2.2.3. Focus groups A focus group was arranged in each PCO (excluding the very rural area where a single group was impractical). Facilitated by two researchers, groups included some patients who had contributed to the illness diaries as well as additional participants to broaden the perspectives. Discussions were audio-taped with consent and lasted about an hour [21]. They drew on emerging themes from the illness diaries and interviews and were tailored to the local situation (see Appendix 3). As well as general questions about development of local services, discussions focused on patients’ sources of care specifically exploring the emerging theme of respondents’ perceptions and experience of ‘self-care’. 2.3. Data analysis We used the ‘framework approach’, developed specifically for applied qualitative research, as it allows both inductive and deductive coding [22]. We reflected on the data, searching for emerging themes and patterns. All transcripts were then coded using NVivo 7 (QSR International, Doncaster, Australia) into six broad categories (see Appendix 4). We specifically looked for deviant cases. Self-care emerged as an aspect of living with respiratory disease that was important to our participants, relevant to our study objectives, and resonated with our knowledge of theoretical frameworks [15,16]. Our understanding evolved as we discussed the findings within the multidisciplinary team and consulted policy documents and social science literature regarding self-care, lay knowledge and patient–provider interactions. Data analysis was iterative so that the later timing of the focus groups enabled us to test and further explore themes emerging from initial analysis of the illness diaries and interviews. Triangulation occurred through our constant comparison of the findings obtained from the three data sources. 3. Results Participants. Of the 49 patients who contacted us, 31 agreed to participate. Tables 2 and 3 provide details of the participants by PCO, age, gender and respiratory condition. Overview of main themes. Overarching themes clustered in three domains: (1) Understanding of ‘self-care’: the ways in which, and reasons why, participants engaged in their own care and their perceptions of advantages and disadvantages of sharing responsibility for management of their condition; (2) the relationship between patients and professionals and factors impacting on access and communication; and (3) patients’ role in shaping professional care. There were no deviant cases. Indeed, it was striking how similar the participants’ accounts were concerning self-care.
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Table 2 Number of participants by PCO and method.
Team PCO Merged PCO Commissioning PCO Rural PCO
Phone interview only
Illness diary + phone interviews
Focus group discussion
2 – 1 –
4 7 4 2
1a 4b 10c –
Note: Overall 31 participants took part in the patient study. A few contributed to several of our data collection methods and are thus double-counted as noted below. a 3 participants had been expected, only one turned up. This participant was also involved in the illness diary. b 3 of these participants took part in the illness diary. c None of these participants took part in the illness diary.
3.1. Patient self-care Most patients were aware of the policy shift encouraging selfcare, with health professionals increasingly acknowledging patients’ understandings of their own body and health and transferring some clinical responsibilities to their control (e.g. patients holding emergency supplies of treatment). For many, however, ‘encouraging’ self-care seemed incongruous as the term seemed to describe what all patients were already doing on a daily basis. Self-care began from the moment they woke up until the moment they went to sleep exemplified by the response to a question about their main sources of care: ‘‘I don’t have any care at all, I’m the carer.’’ [60–69-year-old man with chronic obstructive pulmonary disease (COPD)]. Most respondents felt they had gained sufficient knowledge over the years to cope confidently with most symptoms without medical assistance. ‘‘I’m not somebody who will see the doctor for the sake of it. As long as my health is under control, I will keep well away from such people. [. . .] I just feel it’s a waste of time because I know what I’m doing now.’’ [60–69-year-old man with asthma and COPD] Carers were important sources of emotional and practical support in self-care, as was information from Breathe-Easy Groups, health books or journals, relatives, friends and the Internet. 3.1.1. Advantages of self-care 3.1.1.1. Regaining control. Several patients described how they felt comfortable being responsible for their own treatment, taking pride in being able to manage (and experiment with) their medication with minimal professional input. ‘‘I do every now and again take a night off (medication) to see how I am and whether I really need it, I sort of trial myself.’’ [40– 49-year-old woman with asthma] For some, self-care provided a new role and sense of control, helping to boost confidence despite the frustration of losing their previous active roles in the household.
Table 3 Participant details by age category, gender and type of condition. Age range 40–49 50–59 60–69 70–79 80–89 Total
Women
Men
Type of condition
Total number
2 4 1 4 –
– 2 10 7 1
Asthma (2) Asthma (2), asthma and COPD (3), sleep apnoea (1) COPD (5), asthma and COPD (2), bronchiectasis (2), sarcoidosis (1), lung cancer (1) Asthma and COPD (1), COPD (9), sleep apnoea (1) Asthma (1)
2 6 11 11 1
11
20
Asthma (5), asthma and COPD (6), COPD (14), sleep apnoea (2), bronchiectasis (2), sarcoidosis (1), lung cancer (1)
31
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‘‘I feel as though I’m hitting back somehow which makes me feel I can do something.’’ [60–69-year-old woman with bronchiectasis] 3.1.1.2. Avoiding medical care. A desire to avoid health professionals was common, and several patients described persisting in self-care despite deteriorating symptoms, rather than arranging a consultation. ‘‘I don’t like to bother people, you know, I’ll kind of struggle on and struggle on until I’m, you know, desperate really before I bother them.’’ [40–49-year-old woman with asthma] Avoidance of hospital admission and being able to stay within familiar surroundings, avoiding impersonal care and uncommunicative hospital staff, and the risk of contracting methicillinresistant Staphylococcus aureus (MRSA), were all mentioned as advantages of care at home. ‘‘They [hospital staff] just do their business and it’s like no partnership, they do the business and it’s ‘goodbye, thank you very much’ and you’re out the door. There’s no sort of ‘can I ask a question on this’ or ‘can I ask that’,[. . .].’’ [60–69-year-old man with COPD] 3.1.2. Disadvantages of self-care 3.1.2.1. Feeling abandoned. Participants sometimes felt uncomfortable with the responsibility of self-care. Hints of feeling abandoned and left to their own devices without sufficient regular professional input surfaced in several interviews. ‘‘. . . I said, ‘Well why are you only seeing me every month or two?’ ‘Oh well, you always seem to be able to manage’. And so well, I can, but should I be, should I be just doing it all on my own, do you know what I mean? I don’t know, the more independent and able to manage you are the less keen they are to see you sometimes.’’ [40–49-year-old woman with asthma] 3.1.2.2. Lack of support. Concern was voiced when patients felt that encouragement towards self-care was not matched by expert guidance and resources to support self-management. Several participants alluded to a communication gap between patients and their health professionals: ‘‘. . .we’re not all getting the information we should be getting’’ [50–59-year-old woman with asthma and COPD]. 3.2. The relationship between patients and professionals Although some patients had defined strategies for knowing when to seek help, others expressed anxiety about not being able to recognise warning symptoms, making it difficult to know exactly when to seek medical advice. ‘‘[. . .] the main problem [. . .] is that I don’t know when I’m ill, because you go down a little step each day and, you know, it’s hard to say when you’ve reached the point where you want some treatment.’’ [70–79-year-old man with COPD] Many responses suggested that independent self-care felt appropriate ‘‘as long as you know what you’re doing, as long as you’re happy’’ [50–59-year-old woman with asthma], but that greater comfort in managing the condition depended on reliable professional back-up.
3.2.1. Flexible access to advice and reassurance 3.2.1.1. Flexible access to professionals. Self-care seemed to work most effectively if access to a trusted health provider was flexible and responsive to need. This could just be the opportunity to call or e-mail to ask a quick question. ‘‘[. . .] although I’ve been saying to you that I know how to control the asthma and so on,. . . [What] I have got very confused by, is that actually the recommendations have kept changing. [. . .]. It’s probably because I’m getting worse and older but it would be nice actually to be able to email somebody like her [nurse] as well and just sort of say. . .remind me of the procedure of coming off a high steroid and she would be able to. . .’’ [50–59-year-old man with asthma and COPD] Several patients appreciated the security and continuity of care provided by clinicians who were easily accessible and provided flexible professional support at varying stages throughout the management of their disease. ‘‘He said if I have any problems just ring either him or the nurse up and they would sort it out, which I knew I could do.’’ [50–59year-old woman with asthma]
3.2.1.2. Regular contact and reassurance. Some patients suggested that an occasional routine review from their provider could reassure them that their condition had not deteriorated and that they were ‘‘doing the right thing’’. ‘‘And I’ve tried to sort of say look, [. . .] give me a ring once a month and say: ‘Are you OK, how you doing?’, you know, ‘What’s happening, how are you managing, are you all right?’, that’s all, not any more than that.’’ [40–49-year-old woman with asthma] The benefit of speaking to a professional – however briefly – was often mentioned as an asset for those who had a good relationship with their providers. ‘‘And I just think if you can speak to a doctor sometimes it will make you feel better and sometimes you can feel lousy, really lousy but you can go to the doctor and when you come out, even if he ain’t really done much, if they’ve said well, you know, ‘You’ll be alright in a couple of days’, you automatically feel better.’’ [50–59-year-old woman with asthma]
3.2.2. Communication Communication surfaced as key to navigating the healthcare system. Participants identified both facilitators and barriers in their quest for good communication. 3.2.2.1. Facilitators in communication. Being older, better educated or more confident were mentioned as potential advantages in the negotiation process. In addition, a solid relationship built up over time could enable good and open communication. Terms such as ‘‘working relationship’’, and ‘‘trust both ways’’ were used to describe positive experiences of interactions between patients and professionals. Patients who achieved this type of partnership seemed more content with managing their care independently. ‘‘He (the GP) really put his mark on the practice. You could talk anything through with him, whatever it was and you always felt that when you left him you’d come to a mutual agreement.’’ (70–79-year-old man with COPD)
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3.2.2.2. Barriers in communication. Difficulties in establishing an open and honest rapport with professionals included the fear of not being seen as ‘‘a good patient’’ resulting in downplaying of symptoms. Several respondents described how clinicians would not respond well if patients seemed ‘‘whiny’’ or complained too much. Health professionals’ reactions to patients’ queries were frequently described as barriers to communication. A tendency not to ‘‘take things seriously’’ when patients attempted to discuss ideas they deemed important caused some to give up trying to communicate with their providers altogether. ‘‘Well, I did discuss it but they are not really interested. I mean when they see you are not dying and you make all these suggestions they always look at you as if you’ve been spending too much time on the Internet. . .’’ [60–69-year-old man with asthma and COPD] Even participants who had taken part in Expert Patient Programmes or pulmonary rehabilitation which had provided strategies for asking questions and discussing care with professionals, found the recommendations difficult to follow in real life when faced with an uninterested provider. ‘‘I just completed a pulmonary rehabilitation course at the hospital and I sort of learned a lot from them, and also that I don’t complain enough. [. . .] And they gave us a form to give to the doctor, which I did because I had a chest infection a few weeks ago and he just sort of looked at it and sort of put it to one side, you know, and said ‘Well, we’ll think about that’.’’ [70–79year-old woman with COPD] 3.3. Negotiating professional care Some participants illustrated ways in which they had used their knowledge to negotiate and shape professional decisions about their care. Although some considered that too much knowledge and insight on their part could make professionals uncomfortable or ‘‘threatened that their knowledge is going to be challenged’’ [40– 49-year-old woman with asthma], many felt that being knowledgeable about their condition gave them bargaining power. ‘‘[. . .] at the hospital I argued about not going on steroids but they just accepted my arguments at the time and said ‘alright let’s see what happens’ and so I put off taking them for six months or more (. . .)So in that respect they’d taken account of my views on the treatment.’’ [60–69-year-old man with sarcoidosis] Some patients contrasted their knowledge about the condition with that of providers who they sometimes felt lacked experience and expertise to advise them. ‘‘Yes, because it’s like anything medical it’s your body and you know your body better than anybody else and you know your body how it responds to different medications better than doctors, you know, if you feel that medication is making you feel a certain way or unwell then you tell the doctor and, you know, you make them listen.’’ [60–69-year-old man with lung cancer] Conversely, other participants emphasised the limits of their knowledge and felt that they had reached the limit of their capacity for self-care and now needed expert advice. ‘‘You’ve gone to them and said ‘I need your help, I can’t deal with it, I want you to make me better’. That’s their authority from my
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point of view, to tell you what to do. [. . .] I mean nowadays it’s well ‘What do you think about it?’ and you know, the answer really is ‘Well, I don’t know, that’s why I’ve come to see you. . . because you’re the expert!’’’ [70–79-year-old man with COPD] 4. Discussion and conclusion 4.1. Discussion Participants were aware of the increasing focus on self-care, although from their perspective, they were already self-caring on a day-to-day basis. While many were content to accept more responsibility for their care, others felt abandoned by their professionals. Occasional professional reviews provided reassurance and underpinned a caring relationship. The desire for flexible access (timely, and employing a choice of face-to-face, telephone and e-mail communication) to professional support was fundamental in ensuring confidence with self-care. Some patients were involved in negotiating and shaping their professional care, reflecting an evolution from the traditional active doctor/passive patient relationship. Although 20% responded to the direct mailshot, our ‘advertising’ approach to recruitment resulted in a low yield, perhaps because busy clinicians did not distribute many/most of the leaflets. We therefore accepted everybody who agreed to participate, though we monitored recruitment and were satisfied that the profile of disease, age and gender broadly reflected the prevalence of conditions and older age range of people with LTCs; ethnic minorities were however under-represented. Respondents are likely to have been particularly interested in the organisation of their care. We have provided background information about both patients and PCOs to enable readers to assess transferability of our findings [23]. We remained aware that researchers’ attitudes influence design, data collection and analysis of qualitative studies [24]. However, the range of approaches used for data generation and in particular the use of illness diaries allowed patients to voice their reflections relatively uninfluenced by the researchers. In addition, our regular multidisciplinary discussions helped to ensure a balanced interpretation. Our findings demonstrate the complexity of self-care and associated support needs. Patients were communicating and securing relationships with professionals in ways that challenge the traditional position of patients as passive recipients of medical expertise [25] and repositioned them at the centre of their care [7,8]. However, while Degeling et al. [15] characterise the area between patients and professionals as ‘support’, our data suggest that it may be better described as a ‘boundary’ (real or virtual), which can be easy or difficult to cross and is defined by the individual patient–professional relationship (see Fig. 2). This ‘boundary’ is not static; rather its position varies not only between patients, but also crucially within the same patient throughout the experience of their illness. Patients are relatively comfortable in the ‘realm’ of self-care when their symptoms are stable and they feel confident in their own/carer’s knowledge of the condition. When symptoms become more severe, however, the patient’s ability to communicate with their professionals across the boundary becomes crucial. Echoing other research, our participants emphasised the importance of relationships with professionals that were based on trust, confidence, familiarity, mutual respect, shared decisionmaking and good communication [26–28]. Our observation on the confidence-boosting aspect of regular contact with clinicians resonates with the concept of ‘guided self-management’ in asthma [29–31]. Self-management interventions which focus exclusively on modifying patient behaviour [32,33] overlook the pivotal barrier of poor communication with professionals [34,35].
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Fig. 2. The chronic disease management pyramid with the boundary between professional and self-care (adapted from Degeling et al. [15]).
Clinicians’ reactions to patients’ questions and suggestions can block communication [36,37] and even strategies recommended in Expert Patient Programmes [38] could not always overcome these barriers in ‘real’ consultations. It is unrealistic to expect all patients to be able to communicate assertively in consultations: professional training must emphasise communication skills. Our data demonstrate that patients can gain the confidence to cross the ‘boundary’ and negotiate their care and treatment when an exchange of ideas is enabled. This negotiation may explain why patients with asthma action plans attract better treatment from their attending clinicians [29,39–42]. Kennedy et al. [16] broaden the debate to include a system perspective, which spreads the responsibility for improvement in self-care strategies across three levels, patient, professional and structure (see Fig. 1). Similarly, Gately [43] encourages changes in service organisation and professional practices at the interface with patients. Resonating with this, our findings demonstrate that confidence with self-care is enhanced when patients feel secure that they can access professional advice promptly, when they feel it is appropriate, using diverse modes of communication. In addition, for some patients, occasional clinician-initiated contact added to feeling ‘‘cared for’’ thus avoiding a sense of abandonment. For self-care to be effective, service arrangements need to include flexible access across the ‘boundary’ and the space and time for professionals to support their self-caring patients. 4.2. Conclusion All patients are involved in self-care and many appreciated the responsibility and sense of control it gave them. Some, however, were concerned about the limitations of self-care and felt abandoned when routine professional support decreased. Patients valued flexible access and communication at the boundary between professional and self-care in order to feel comfortable managing their condition. Professionals need a broader understanding of patients’ concerns about self-care to adapt management strategies according to the patient’s fluctuating capacity, informal support and needs.
resulting from increasing specialisation, a confusing multiplicity of new professional roles and commissioning of ‘packages of care’) can make the boundary seem more impenetrable and make selfcare more difficult. Flexible access to professional care implies services delivered in a timely manner by an appropriate professional at a suitable location and recognises that different modes of consultation will fulfil different needs. Further research is needed to understand and evaluate ways of supporting people with LTCs to optimise self-care strategies, of developing clinicians’ communication skills, providing flexible access to primary, intermediate and secondary care advice, and of using different modes of consultation to best effect. Conflict of interests The authors declare that they have no competing interests. Funding National Institute for Health Research Service Delivery and Organisation Programme. SDO/99/2005. HP is supported by a Primary Care Research Career Award from the Chief Scientist’s Office, Scottish Government. Acknowledgements We thank the patients for their valuable insights they provided through their illness diaries, interviews and focus group discussions. We also greatly appreciated the help of all the practice staff who were involved in the recruitment process and kindly provided us with space to conduct the focus group discussions. Our thanks also go to Rosemary Porteous, the study secretary, for her support with transcription and administration and Dr Fiona Harris for her support with the analysis. I confirm all personal identifiers have been removed or disguised so the persons described are not identifiable and cannot be identified through the details of the story.
4.3. Practice implications
Appendix A. Supplementary data
Our findings provide insight into the patient perspective on recent policy shifts, aspects of which (fragmentation of services
Supplementary data associated with this article can be found, in the online version, at doi:10.1016/j.pec.2009.07.015.
T. Kielmann et al. / Patient Education and Counseling 79 (2010) 55–61
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