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Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

Care for chronic illness in Australian general practice – focus groups of chronic disease... Background: Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim: The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods: Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings: At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion: Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. Page 1 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 national chronic disease networks are being set up in Background Chronic illness is when the disease intrudes upon every- China and India. day life in physical, psychological and social domains over a period of six months or more [1]. Chronic illness There has been a slow uptake in Australia of the key com- care for people has been conceptualised as ameliorating ponents of what is now known internationally as the the burden of chronic disease as it impacts upon people's Chronic Care Model [11]. For example, a recent qualita- lives [2], while Chronic Disease Management focuses on tive study of GP perceptions of chronic illness care indi- disease outcomes and processes linked to disease – mostly cated that such initiatives may have had a minimal impact primary secondary and tertiary prevention [3]. upon their everyday practice [24]. In Australia this has been attributed to constraints of time and a balance of Depending upon a perspective, the terms chronic disease, responsibilities [24]. As Harris stated in November 2008, condition and illness are either interchangeable, or con- 'the capacity of general practice to take these (components of vey different meanings. Most authors make philosophical the chronic care model) up has been constrained by funding distinctions between illness (and health) and disease. Dis- and workforce availability' and that he supports the more ease strictly relates to a diagnosis based on a biomedical intensive major workforce and health system restructuring diagnostic classification system, while illness relates to the planned by federal and state governments [20]. In addi- intrusion of unwanted and distressing symptoms and tion, a recent 2008 Commonwealth Fund survey of peo- experiences into everyday life, related to diseases or condi- ple with complex chronic care needs supports the need for tions. ongoing improvement of chronic illness care in 8 devel- oped countries [25]. Complex Adaptive Chronic Care addresses multiple phases and stages of chronic illness and disease care [4]. It On the other hand, there is international evidence to chal- deals with multiple dimensions beyond single disease lenge the effectiveness and efficiency of many current outcomes – bio-psycho-social and sense making or mak- approaches towards restructuring of health care to intro- ing sense of the disease(s), illness and care experiences [5]. duce major aspects of the Chronic Care Model [26,27]. This focus group study explores the sense making of peo- The Chronic Care Model appears to be better suited to ple with chronic disease in the Australian context over prevention of disease, than cost effective management of time. chronic illness [3,17]. Linking the Chronic Care Model to incentive based payments as in the UK, appears to deliver The global challenges of chronic disease prevention and improved performance on certain chronic disease param- the management of chronic illness are international. In eters [28]. However, performance was improving at a 2005, there were predicted to be 35 million deaths from rapid rate based on better information and practice organ- chronic diseases [6]. It is a global concern that has consid- isation before the introduction of incentives [29]. Alterna- erable urgency in terms of impact on population well tive models of narrative based medicine [30], being and economic burden [7]. Common concerns have transformative relationship based medicine [31] and been identified across developed, developing and transi- complexity science [13,32] may be more appropriate to tional countries [8] and the increased ageing of the popu- address the need to transform health systems to meet the lation exacerbates the problem. The Asia Pacific region needs of those with chronic illness, rather than the top has particular concerns arising from the rapid health tran- down linear and implementation 'science' based enforce- sition to obesity and diabetes [9]. ment of rigid protocols which emphasise the disease rather than the illness [4,28,33]. Other models of system There have been considerable efforts to implement transformation such as complex adaptive chronic care are chronic illness care through a number of initiatives dynamic, adaptive and bottom up building on individual through general practice/family medicine/primary care in needs in chronic illness [14,33,34]. Complex adaptive the past 10–15 years both internationally [10-15] and in chronic care recognises different stages in the chronic con- Australia [16-18]. Australian initiatives include Enhanced dition trajectory with different strategies and system Primary Care items such as Care Planning and Case Con- reform approaches needed to address the journey from ferencing [19], Co-ordinated Care Trials [17], Sharing primary prevention to chronic illness to pre-terminal care. Care (self-management) [20] and more recently the In this context, our study qualitatively explored the illness National Chronic Disease Strategy [21] around specific experience and care experiences of Australian people with diseases in the National Health Priorities [20]. Other Asia chronic disease. Focus groups of key informants who were Pacific countries such as Singapore and Malaysia are intro- members of self-help groups and who were willing to ducing Chronic Care Model style initiatives [22,23], and share their stories of having chronic illness and providing Page 2 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 peer support for self-management. This study compared It is recognised that this method produces a sampling bias their experiences in 2002/3 and 1992/3 [35]. but it did provide the most effective convenience sample for the project, and ensured a range of comparative answers to the researchers' questions. In addition, as key Aims The study aims to investigate the common and differing expe- informants, ACT self-help groups are largely comprised of riences of important chronic disease groups over time in relation the highly educated middle class of Australian society to their experiences of illness in the context of health system with many public servants or ex public servants residing in reform. This study aims to follow up previous work under- the nation's capital. They are articulate and empowered taken by the chief investigator, approximately 10 years and are likely to be early adopters of innovations and after the initial study, examining patients' perceptions of improvements in their care. chronic illness care provided by general practitioners, pri- mary care and the health system more broadly [35]. This Analysis study aims to inform other countries, as well as Australia, who Each focus group lasted between two and two and half are in the process of transitioning to chronic disease orientated hours and was audio taped and transcribed. Rice and Ezzy health systems. [36] recommend this method for gaining a good spread of ideas form study participants. The project officer and chief investigator independently categorised key themes, in an Materials and methods Focus groups were conducted with four self-help/con- exploratory and open ended manner, of the first focus sumer groups representing patients affected by epilepsy, group (Epilepsy ACT). The themes and categories coded asthma, cancer and Type 2 Diabetes in the ACT region, independently from this transcript were then analysed by replicating and adapting a previous study [35]. The groups the project officer and chief investigator together to clarify were conducted using theoretical sampling; that is they commonalities, differences, outliers or emergent phe- were conducted until no new themes emerged and there nomena. This was also checked back to the original focus was thematic saturation with no new variations emerging. group categories and codes derived by the use of grounded Rice and Ezzy [36] recommend the use of focus groups to theory, iteratively to develop a framework for analysis. gain insights into personal experience and to refine and Coding was then carried out independently by the two develop ideas about common experiences. The methodol- researchers and the same process repeated until saturation ogy is a grounded theory approach based on that refined and crystallisation of themes was achieved. For subse- by Glasser and Straus [37]. This approach was used by the quent groups the project officer and chief investigator chief investigator in her previous research with chroni- each independently coded half the transcript prior to dis- cally ill patients. cussion and clarification of the complete coding. Discus- sion of the coding and results were undertaken by face to Participant Recruitment face and teleconference meetings with the co-investigator. In the original research four focus groups were undertaken with members of self-help groups from the following A matrix was developed to allow a comparison of the organisations – Epilepsy Association of the ACT, the ACT themes from the current groups with those of the original Cancer Society Asthma Association of the ACT and the research. Emergent themes were identified. In the writing non-insulin dependent Diabetes self-help group of Diabe- of the report key themes were aggregated into broad issues tes Australia, Canberra. These four groups were invited to address the research questions. The final draft reports again to participate in the current research, and with the were sent to the self-help group members for member exception of the ACT Cancer Society (renamed Council) checking. The Epilepsy self-help group in particular felt all agreed to participate. The ACT Cancer Council was 'understood' by the focus group study. already engaged in participating in other research; how- ever they suggested another local cancer support group, Findings Bosom Buddies, who agreed to participate. To contextualise the findings of this study we briefly sum- marise the characteristics of the illness and care experi- Each of these groups recruited participants from their ences and the insights gained from the original focus membership. Not all groups had active self-help groups at groups in 1992/93. the time. A total of 32 people participated with 10 from Epilepsy ACT; 5 from Asthma Association; 6 from Bosom Original Focus groups 1993 Buddies and 11 from Diabetes ACT. Signed consent was In 1993, the self-help group members who attended the obtained from each participant. This study was approved focus groups described themselves as core members who by the Royal Australian College of General Practitioners were involved in the running of the organisation or were Research Ethics Committee. in a crisis period as a result of their disease status. Page 3 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 The key themes from the original groups related to the Issues regarding medication were prominent, particularly qualities desired in, and the concept of, the 'right GP'. relating to side effects, the years spent trying to find the Qualities of the 'right GP' included good disease knowl- right medication and the impact on quality of life with edge and diagnostic skills; commitment, caring and one person when speaking of experiencing 'the shakes' as a understanding and a trusting and therapeutic relation- side effect of a particular medication saying, 'I preferred to ship. The original groups also identified issues around the have the seizures'. To participants, epilepsy was not a prior- lack of time in GP consultations for chronic illness man- ity to medical research, the community or government – agement and the need for appropriate access to, and avail- there was a feeling of 'take your pills and shut up'. Loss of ability of, GPs and other health professionals. Appendix 1 jobs, licences, control during fits and friends were perti- outlines the key issues in the initial focus groups in more nent and distressing. Experiences resulting from commu- detail. nity stigma and lack of understanding and knowledge of epilepsy are exemplified by. 'Once they know you have epi- Follow up focus groups lepsy and still have fits, they are frightened to employ you on We first described the participants' experiences of 'being a manual jobs.' and 'We keep our epilepsy hidden ... as much as patient with a chronic disease' and their common experi- possible.' ences and disease-specific management experiences in general practice. In the second part we outline the remain- Asthma Group 2003 ing study questions regarding how the GP might better Asthma group participants were associated with the assist; examples of successful and less successful chronic organisation rather than belonging to a self-help group as illness care; and how chronic illness care in general prac- such. Most were female and aged over 40 years. Several, tice changed over the last 10 years. including Ben had a long standing relationship with the organisation and were advocates for better care. Ben Epilepsy Group 2003 described his experiences and felt he had 'lived on the knife The Epilepsy Group participants were associated with the edge for 20 years with severe asthma and COPD, and an eye organisation but not part of a formal support group. They condition called glaucoma'. He was desperately afraid of were convened on an ad hoc basis. Participants ages having a bad attack of asthma and landing in an emer- ranged from a primary school aged child to an aged pen- gency department somewhere and being given injectable sioner and there was an even gender split amongst partic- corticosteroids which could render him blind. 'My GP and ipants. asthma specialist know me and I am desperate to go through them and get directed into care ... I am working very hard to Difficult to control epilepsy was devastating. 'I was so psy- try to make sure that doctors know about asthma.' chologically destabilised by the grief of losing who I was (and) then coming to grips with the degenerating condition'. Participants felt that some GPs had a good general knowl- edge regarding asthma and its medications. Most felt that Most participants experienced that their GP did not know their GP referred and consulted appropriately with their enough about epilepsy and its medication to be able to specialist. The importance of good communication with provide management and support for it. Comments such the GP was emphasised by the group as well as the need as 'they don't know anything, so they can't help me' typified for a doctor with holistic skills to care for chronic illness. this. With drug therapy a central aspect of epilepsy care, Several spoke of the fear involved in a serious asthma most care was provided by the neurologist if not an epi- attack, particularly if it was in relation to their children. lepsy specialist. Numerous issues were raised around 'Fear and panic can be overwhelming.' Sometimes it is diffi- referral to specialists including whether referral should be cult to be taken seriously by medical practitioners. 'It can to a neurologist or epilepsy specialist. Finding the right be very hard to get past receptionists at time. They just fob you epilepsy specialist or neurologist was of paramount off to emergency.' Most spoke of the chronicity of asthma importance as there was a general consensus, that for peo- and the ongoing efforts and battles involved in keeping ple with challenging epilepsy, the right biomedical thera- their asthma and other lung conditions particularly peutic was critical. The self-help group networks allowed chronic obstructive lung disease well controlled, trying to informal 'insider' comparisons of GPs and specialists and prevent crises and to live a normal life. Alice had been provided advice on who to attend when care wasn't work- plagued with exacerbations of her long term lung prob- ing. 'Wouldn't attend him in a million years' was a common lems. This culminated in a recent hospital admission a few verdict about a certain specialist. 'My GP's OK, I trust him weeks ago. Since her discharge from hospital, Alice claims because he has served me and my father well, although he she 'has not been the best'. Despite this, she has continued doesn't know anything about epilepsy. At least he knows what to keep up with her many social activities. She 'never gives he doesn't know, so I trust him if I have the flu or other sorts of up'. problems.' Page 4 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Cancer Group 2003 for accurate information was heavily emphasised, for Most of the cancer self-help group – 'Bosom Buddies' – example, 'that's what diabetes is, it's always learning, always focus group participants had had a diagnosis of breast learning'. cancer. One woman was experiencing a recurrence of can- cer at the time of the meeting and one participant was the Key themes to emerge from the research husband of a woman called June who had died from brain The main themes focussed on general practice access and cancer. June had no access to a brain cancer support group availability; health system issues; disease issues and other throughout a gruelling battle to her death. She and her issues. Focus group themes were identified and catego- husband, Brian, had been 'adopted' by Bosom Buddies. rised. Strong themes were expressed as being important by All were over 40 years of age. more than half the group and reached saturation early. They were also spontaneous without prompting. Moder- The issue of finding the 'right GP' was a particularly key ate themes were presented often resulting from inter- theme in the cancer group. Also, the need for good com- viewer prompts. Themes that were not present were munication with the GP and between the GP and the neither spontaneously stated nor stated in response to sometimes multiple specialists was emphasised. 'Having a interviewer prompts. Key findings are shown below in the GP who listened to and treated concerns promptly and appro- (Appendix 2) and reported in more detail below. priately;' was paramount in the ever vigilant defence against the constant spectre of potential recurrence. Thor- General Practice Access and Availability oughness and a responding to 'gut' feelings of the patient One participant summed up the challenges of access and were recurrent themes and key qualities desired in a GP, availability as threefold in 'finding a doctor and getting in for example, 'I knew it was a recurrence but I had a hard time and having enough time'. convincing people of that.' This was particularly important Finding a GP in relation to diagnostic skills and looking at a person holistically rather than focussing on the results of a partic- Many in the groups reflected current concerns regarding ular blood test or scan. There was a need to 'listen to the the availability of GPs. Several had experienced the diffi- whole body.' culty of finding a new GP when their GP retired or closed the practice. Many had either personal experience or were Diabetes Group 2003 aware of situations where GPs had 'closed their books'. All the focus group participants had mature onset diabetes Several spoke of the relief of having found a GP they were ranging from those controlled by diet and exercise satisfied with and having become a patient before the through to medication. They were all members of the Dia- 'books' had been closed. betes Australia support groups and met regularly for activ- ities and support. There was a fairly even gender split with Finding the 'Right GP' most participants being of retirement age. One of the One of the main recurrent themes of the original and cur- members, Joan, was a participant in both 1993 and 2003 rent research was finding the 'right GP' in terms of profes- focus groups. She was recovering from her first heart sional and personal qualities. Sometimes finding the attack. However she was grateful for the developments in 'right GP' takes on a sense of urgency, 'When you are diabetes care and felt very secure. 'I just thought of it as being younger and well and the kids just have minor illnesses, it inconvenient in some ways.' doesn't matter so much ... then all of a sudden to jump into this world of malignancy (cancer), you're in a different ball game A strong theme for participants was that diabetes care and ... Well what we did once it became serious, we looked for a management was their responsibility. 'But really the respon- good GP and that was important in the whole process, a sym- sibility is our own because he can't cure the disease, he can pathetic GP and we were very lucky to get associated with him'. manage it and that's what we've got to do, just manage it' and 'apart from smoking and smoking related diseases, it's probably Some noted the importance of the GP when facing the most patient controlled illness'. There was an almost chronic illness, for example, 'chronic disease, that's when mixed reaction to the advent of HbA1c testing that gives a you need your time, your space, the knowledge, the experience reading on the degree of blood sugar control over the pre- and the skilled GP'. One person commented that the 'right' vious three months with some patients feeling a loss of was a time influenced event in that 'the GP you've got today personal freedom and omnipotent control by the doctor might not be the one you need in five years time when you con- as is illustrate by this quote, 'you can play up for (just one dition's different'. week) and get into trouble'. Finding the 'right GP' is a process of finding the one with For most, their GP managed their diabetes with only a few the desirable qualities. How is this done? Participants consulting a specialist. The issue of learning and the need commented on the lack of guidance for people in this Page 5 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 process and how it often came down to 'word of mouth' Diagnostic skills although this was obviously difficult for those new to a GPs diagnostic skills were regarded as extremely impor- city. Self-help groups provided considerable support tant whether in making the original diagnosis of the when people with serious need were new to a city and chronic condition or in relation to aspects of other condi- looking for a GP. For many participants the length of rela- tions. Some comments emphasised the difficulty in the tionship they had with their GP was a significant aspect in GP role in being able to discern between the trivial and the the ongoing trust, confidence and personal rapport. They serious of symptoms. Others noted the importance of gained a lot from this continuity of care. 'He instils confi- generalism in diagnosis and management 'I suspect too that dence ... He gives me the impression – he seems to have a com- the true value of a GP is just that, general, everything'. mon sense approach... No, he (has been visiting this patient Referral to specialist care for over 20 years) ... he got me through that (exacerbation of condition) amazingly ... he was brilliant. Three months it Referral issues were prominent in most groups. For took, and together we will do it, and that is his approach.' patients with epilepsy there was the issue of being referred to a specialist with sufficient specialised knowledge while Qualities of the 'Right GP' for those with multiple specialist involved, for example Supportive, understanding and a good communicator with cancer care, it was important to have good links Focus group participants were consistent in the qualities between all the specialists and the GP. they were looking for from their GP and reaffirmed the qualities identified in the original focus groups. Under- Whilst many participants assumed there was ongoing ver- standing and supportive, trustworthy, holistic care, good bal communication between their GP and specialist few listening and communication skills were key qualities par- were able to confirm this. However many were happy with ticipants were looking for. 'They're looking at the whole pic- the links between their GP and specialist with one person ture'. These qualities were important even if their specific commenting 'between the doctor and the specialist, they seem medical chronic illness care came from their specialist. to work in tandem'. Other qualities included being interested, thorough, and approachable; having a good sense of humour, empathy, Prescriptions With the exception of the cancer group, participants in the and being able to talk to about concerns. It was vital to recognize the emotional state of people at the diagnostic other groups identified the provision of prescriptions as a or transitional stages of disease as is exemplified by '(you) key reason for attending the GP. For some this was their only hear (the) first bit of information and after that you're in prime reason as particularly with the epilepsy groups they shock" and 'She understood that I was in shock and rang me did not perceive the GP as having much of a role in their later at home ...' disease care. Pharmacists had an important role in moni- toring and supporting medication use, particularly in epi- It was important to patients to be seen as a whole person, lepsy when most of the prescribing is by specialists and for example 'she sees me as a diabetic person rather than as 'a GPs are limited to writing repeat prescriptions. '... it's as if patient'' and ' ... treat me more as a personal patient ... an indi- he (the GP) didn't know because I just went through a whole vidual ... rather than just someone who has epilepsy'. heap of pills' from the specialist that didn't work and he (the GP) just repeated the prescriptions. Matching of expectations was another important quality. 'A distinction has to be made between patient and general prac- Access to the GP titioner expectations of the interaction, which may differ mark- Difficulties of getting an appointment edly and would seem to require a 'match' between the general Some noted the increasing difficulty of getting an practitioner and the patient in order to obtain mutually satisfy- appointment at short notice 'it's like, if you're very unwell ing outcomes of the interaction during (the) consultation.' you just have to sit unwell and just cope as well as you can until you get access to the doctor'. Disease knowledge Most groups identified that there was a general lack of In most groups there was some discussion of locum med- knowledge amongst GPs of their particular condition, its ical practitioners. There was general dissatisfaction regard- treatment and medications. The GP was however regarded ing the thoroughness and quality of care from locums. as a key source of general information. Whilst recognising Several had had experiences of being given, or nearly GP heavy workloads and the fact that they were not spe- being given, the wrong medication with others experienc- cialists, all groups identified the importance of GPs keep- ing their symptoms as being trivialised and resulting in a ing up to date with latest information particularly in reluctance to see a locum again. 'I will wait until my GP relation to medications. 'We are in their hands and we are returns. The locums are generally useless.' vulnerable.' Page 6 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Consultation length any improvement. 'I don't think it has changed much, every- The general experience across the four groups was of not one seems to be busier and no one has time to talk and explain.' having sufficient time in consultation with the GP. One person noted: 'Sometimes you actually just want to have a big The Enhanced Primary Care items were designed to talk just for... reassurance maybe ... and that is the time that deliver more coordinated, structured care to patients, you are feeling ... the need ... it is so disappointing when you however, based on this sample there was little experience are pushed out the door'. Some participants in most groups of their penetration to everyday care. had experience with requesting longer consultations, at the time of making the appointment, and found this val- A subtle change in language had emerged over the 10 year uable. Another person commented: 'My feeling is that most period. There were examples of appreciation of the use of GPs are so busy and their time is so precious. And they make it structured care in terms of three monthly diabetes checks, that way, I mean; they don't have to.. in my opinion. They use of Information Technology (IT) systems. Some com- could decide to spend 25 minutes with every patient and to hell ments were made on the role of the GP as 'case manager'. with whatever the statutory rate is and just make less money but Many made reference to desiring that their GPs would be still have, I would have thought, a more interesting life'. able to access hospital records electronically. 'I would so welcome my GP getting my hospital records so that she could Many participants felt that GP's had been increasingly understand and explain to me what happened there. It is like a busy and were concerned that some government initia- black hole, my experiences there.' and 'We know there are pri- tives, whilst good ideas, would add further to this burden. vacy issues, but I want to understand what happened to me, I In relation to the introduction of care planning and the want to understand what happened to my body.' While being chronic disease items one participant noted, 'And I just cognisant of the impact of privacy concerns on the imple- wonder how they are going to fit more in'. mentation of IT, several participants noted the used of IT systems for various aspects of the consultation and felt Other Providers and Care in the home that informational continuity that they provided was very This study focussed upon GP care; however other provid- important in their chronic care. ers were identified as playing key roles. Other initiatives Community nurses were seen as especially important, Only one person was aware of, and participating in the 'Community nurses have holistic view and ability to refer on'. Sharing Health Care [Appendix 5] (self management pro- and 'They are wonderful'. They have a central role in the gram) and this person spoke positively, regarding it as continuity of care in serious sickness and disability. Palli- 'really helpful'. Others in the group noted the barriers to ative care nurses and palliative care doctors were so access to this program that was restricted by age and hav- important in the terminal stage of home care, as their reg- ing certain conditions. ular GP did not visit. 'Oh – the GP he never came to the home. We relied on the home-based palliative care, community Most in the asthma group were aware of the Asthma Man- nurses, specialists, hospice in that situation.' Yet, coordina- agement Plan Program with several raising concerns that tion of care was challenging.' One could only trust they were the program delivered payment to doctors for better man- all travelling in the same direction.' Pharmacists were partic- agement of their asthma rather than patients who did the ularly helpful in stages of care where medication was a work – 'the incentives in medicine, in health care, are focussed major feature of the therapy, especially when there were on the professionals as opposed to some of the incentives being frequent dosage and treatment changes, and sometimes within the community or the consumers'. [Appendix 6 provided considerable informational and at times rela- describes the modification of the program discussed at the tionship support. 'I really rely on my local pharmacist. We are focus groups which still pays the practice rather than good friends over the years.' patients for good care]. Whilst only one person was aware of the GP yearly payment for a diabetes register and struc- Health system issues tured care, many were engaged in regular three monthly Enhanced Primary Care/Structured Care diabetes checkups but were not aware of these as specific On average, only one person in each group was aware of government initiatives. the Enhanced Primary Care or chronic disease initiatives per se. Most seemed to feel that care planning [Appendix Change over time 3] [38] was a worthwhile initiative that could help organ- Many participants experienced their GPs as being very ise their care better. Some groups expressed concern about pressured these days, for example 'There's more pressure on the fairness of GP payments for case conferences [Appen- doctors now days ... I really feel when I go to see him that he's dix 4] as this was regarded as something they should on edge'. Participants in some groups noted the improve- already be doing. When asked about changes in primary ment in medications or management of their condition care over the last 10 years most felt there had been little, if over time. Page 7 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 One person noted their changed experience of general Self-management programs practice care as a trajectory moving from a shopfront type Self-management training and support were perceived to of practice to a group practice to one now where he has an be useful, but restricted to specific age groups, locations ongoing relationship with his GP. Others felt their care and types of diseases. The common overriding themes had become more impersonal and mechanical. about the experience of serious illness were fear and anxi- ety, the need to trust medical care providers balanced by Prioritisation of Issues the need to make your own way and 'to be your own case An issue was raised in regards to government prioritisa- manager'. Knowing about the next steps and 'the nature of tion of issues and concentrating on areas where they per- the beast' and how to manage the disease and its mental ceive they can make gains to the detriment of other and emotional concomitants for the sufferer and the carer conditions. For example, 'having been associated with one of were huge existing gaps. Training of GPs and all health the minority areas I know what it's like from the outside, seeing professionals in this regard would be invaluable. a lot of work done, a lot of attention, a lot of focus, a lot of book- lets, resources, support groups for some conditions such as breast Common themes – narratives of experiences of health and cancer compared to fumbling around in the dark, struggling, illness differed across diseases according to the predomi- trying to find someone to make some sense of this very minority nant pattern of bodily dysfunction, yet fear and anxiety type of grouping you're in – brain cancer'. Whilst not made and a shaken trust in their own body were ubiquitous. by a participant in the epilepsy group it has particular res- Gaining control of the condition was the most important onance from the participants in that group and the lack of goal in disease management. Control was secondary to knowledge, research and resources related to epilepsy. cure, which was the ideal. Compared to the initial focus groups, the later groups had perceptions of considerable Disease issues improvement in medical knowledge for asthma and dia- Control betes. Cancer was a variable field with perceptions that The issue of control was a recurrent theme throughout the some cancer such as breast and bowel were much groups although the context varied. For some it was con- advanced while other cancers such as brain cancers were trol of quality of life or medication side effects while for neglected. Epilepsy was perceived to be the least well others, as in the case, of asthma, it was of the condition, researched and understood across the whole spectrum of for example 'the fear that's behind the scenes when you do lose the conditions. Community lack of knowledge of disease control' and 'It takes at least a month frequently to get back to issues was perceived to be lacking with associated stigma the level of control I had before that exacerbation.' and discrimination and this was noted in relation to epi- lepsy and some cancers. Self-help organisations Almost all participants spoke very positively about the Discussion benefits they gained from involvement in the self-help Chronic disease management has attracted a lot of atten- organisation which had provided significant assistance in tion in the Australian and international context because of the support and education aspects of managing and com- its impact on mortality, health care resources and its eco- ing to terms with the condition. Several noted the impor- nomic burden on governments and health care funders tance of education and support for family members. [6]. In an effort to ameliorate these threats and deficien- However, 'not everyone is a support groups participant' by cies the Australian government has spent many millions nature. It was interesting to note that very few people were of dollars on Enhanced Primary Care initiatives and a referred to the self-help organisation by their GP. One per- National Chronic Disease Strategy. In Victoria, Australia's son also noted the support that was available through second most populous State, an initiative called Primary Internet based groups, particularly for 'smaller' cancers Care Partnerships have been an attempt to link local gov- with less prominence. Peer support was also very impor- ernment initiatives with both the State government and tant. with private general practitioners, pharmacists and com- munity nursing services in their area to ensure the devel- Self-education opment of relevant care coordination and case The importance of learning and educating oneself about management structures for chronic illness. Other States the condition was highlighted by all the groups. The role and Territories have had similar programs, which are all of the Internet in facilitating this was touched on in sev- essentially top down, building on government and health eral of the groups. Whilst self-education was still regarded professional views of care needs. Much less attention has as a key issue in the epilepsy groups it also highlighted the been paid to the experiences of people with chronic dis- relative lack of available information compared with ease in the health care system, particularly in primary care. some of the other conditions. To what extent are these initiatives responsive to chronic Page 8 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 illness and how has general practice and primary care dynamic changing needs of the ill and vulnerable at low reform change impacted on people's experiences of care? ebb in their life course. While these focus groups are of key informants from The fact that self-help group members included highly chronic disease self-help groups from one locality, Can- educated and politically aware members who were almost berra in the Australian Capital Territory, they typify a wide completely unaware of the enhanced primary care initia- group of patients who described themselves as educated, tives is challenging. This is particularly perplexing as these informed and articulate. Some members were leading in participants were strongly engaged for many years prior to policy making around patient support initiatives and the Australian government initiatives in an 'expert patient' likely to be well informed, comfortable with their condi- philosophy [41]. Perhaps there merely reflects a slow dif- tion and its social situation. They were prepared to be fusion of the initiatives of the Chronic Disease Strategy actively involved with the professionals and support and Enhanced Primary Care, and it may have changed groups, whereas other members described themselves as even to this date. On the other hand, it may reflect an Aus- having difficulty with their condition, difficulty gaining tralian chronic disease program that is still conceptualised and maintaining employment, and feeling socially mar- as a complicated top down rather than as a complex bot- ginalized. tom up system change. These observations reiterate the need to consider psycho- Given the self-management and self-care aspects of social aspects in the management of chronic illness to be chronic disease, many participants indicated they may equally important as disease-specific treatment. As these have chosen to avail themselves of particular Australian informant groups highlight one can successfully adapt to initiatives – particularly multi-disciplinary care planning. ones lasting disease and optimize the experience of 'good However, the general theme was that GPs were getting health' whereas for others their ongoing problems impact busier and would not have time to sufficiently participate. continuously and negatively on several aspects of their Of concern is the perception that the Enhanced Primary life. An issue not often recognised was the social response Care and Chronic Disease programmes seem to be to chronic disease – stigmatisation of chronic disease was designed by bureaucrats for accountability purposes, particularly noted in relation to epilepsy and some can- based on what other countries were doing, rather than try- cers [39], with diabetes and obesity and smoking related ing to help the GP in their care. disorders, being conditions where there was, perhaps, increasing stigmatisation [40]. Clearly there is a need for further studies to fully under- stand the poor penetration of enhanced primary care ini- From a philosophical as well as a pragmatic perspective tiatives to assist people with chronic disease. A recent chronic disease management must reflect the needs and analysis has confirmed the slow uptake of initiatives, per- values of the individual patient. As a consequence chronic haps limited by GPs capacity to absorb the extra work into disease management programmes must provide flexible their every day practices [20]. In addition, access to con- approaches in a resource sufficient environment, and all sultation time is perceived to remain under pressure, per- collaborators in a chronic disease management pro- haps greater than ever. Our qualitative findings are in line gramme need to accept that they are not always needed all with those in other locations as reported by Infante et al of the time. [42]. While the language is slightly different, the relation- ships and social interactions in chronic disease care were It is therefore not surprising that this group very power- found to be similarly important [42]. fully expressed the need for an in depth personal thera- peutic relationship with a primary care physician, Healing is an important concept and therapeutic relation- reaffirming the needs expressed in 1992/3. The 'right GP' ships that are attuned to the patient narratives [43] are an plays the role of healer, confidant and scientific expert often unrecognised aspect of the Chronic Care Model with the self-knowledge and courage to admit the limits of [31,44]. their knowledge. These findings are encouraging for the educators and planners of general practice. They delineate Are these findings relevant to developing countries and an interconnecting adaptive (generalist) GP role in non Western health systems? chronic illness, with in depth skills in diagnosis, treat- ment, active listening and therapeutic relationships across The international literature supports the universality of disease and illness. Ongoing reform needs to strengthen the burden of chronic disease. Control is understood to person-centred primary care approaches in order to better entail a shift to a Western individualistic model of health address both intense threatening illness and disease-based with the aim of managing disease. Studies of women in Page 9 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Philippines, Thailand, Malaysia, Canada, Hong Kong, and and indicates the importance of building change and Singapore have identified common factors in the need for improvement on local culture and existing system con- greater medical understanding of disease [8]. texts and successes based on in depth analysis of existing strengths as well as apparent short comings. Such qualita- Yet, globally, it is health and well being which is arguably tive studies as this are the personal stories and experiences more important. The WHO Commission on Social Deter- to accompany other indicators of complex care [25] and minants of Health defines health as 'the extent to which an as such as are a warning light that draw our attention to individual, family or community is able to realize aspirations & areas of concern. Indicators need detailed and triangu- satisfy needs to cope with their environment' [45]. There are lated studies, often additional in depth research and very many definitions of health which have major commonal- careful interpretation, before they are evidence for policy ities all stressing patient centred care around the personal change over time. experiences and the need to reconstruct the self in the light of chronic illness, despite cultural differences [22,46]. Understanding generic chronic care in complex health While the notion of the patient as 'expert' is not a tradi- systems requires us to observe and understand the lived tional approach of most Asia pacific countries, peer sup- experience and sense making of those who go through the port for self-management may well fit into the socio- care, as much as about the disease and its management. cultural framework. Also, despite commonly accepted dif- ferences in Western individual orientation and non-West- Conclusions and recommendations ern collective social orientation, a bi-culture is emerging Chronic illness is a major social phenomenon as well as a in Asia with a blurring of individual and collective respon- biomedical and economic challenge, and occurs when the sibilities [47]. disease or condition intrudes on people's lives and per- sonal experiences. In the Australian context making sense In regards to research, epilepsy was perceived to be very of chronic illness experiences through personal relation- poorly supported during the past 10 years. People with ship based care with the 'right GP' or right specialist and asthma and diabetes in contrast felt that therapeutics had other professionals, were central to better experiences of improved their support. Cancer was divided into the com- illness. mon 'popular' cancers such as breast cancer which received a great deal of government funding and support Gaining control of the sense of self and holding on to for sufferers and rarer cancers which were the "Cinderel- one's identity was a strongly emergent and spontaneous las" of cancers. The prioritisation of some chronic disease theme across conditions and time. Self-knowledge of and illness over others is clearly not based on social justice one's own disease and body was universally agreed to as concerns and equity. Rather it is based upon perceived being the most important prerequisite to gaining control. public health and economic burden [6]. The main themes identified in response to the study ques- However, that does not mean that results can be immedi- tions were the importance of a person-centred and techni- ately generalised as evidence for health system perform- cally competent general practitioner and did not ance in different countries? substantially differ from the 1992/3 focus groups. The intensity of need for the 'right GP' when people were in a Cultural differences among patients and contextual differ- phase of serious chronic illness was reaffirmed. An in- ences in health systems are very entrenched and impor- depth relationship of trust based upon personal rapport tant considerations. For example, Australian patients have and understanding and clinical and therapeutic compe- a highly developed 'consumer awareness' having a history tence with the ability and commitment to refer to and of being able to shop around for the care they 'want' as liaise with specialists and other professionals was a distinct from 'need' and have a Western individualistic strongly emergent theme. culture. In contrast, patients in other countries have had little choice and have passive acquiescence to what the The self-help group members had little experience of the health system has to offer. enhanced primary care initiatives. Care planning was the initiative that was identified as being potentially most Similarly many constructs examined in the survey, such as helpful in general practice care. Self-management pro- 'access', differ in various contexts. Other areas that need grams that linked with the self-help group activities were closer analysis and examination of underlying assump- perceived as potentially helpful. However, how they are tions include the uncritical use of the Chronic Care Model introduced needs careful planning and it may be that a as a service template rather than as a conceptual frame- variety of self-management programs offering choice to work for chronic care. However, this focus group study is patients may be most desirable. The need for case man- a barometer of what is happening in chronic illness care agement, support and self-management was a key feature Page 10 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 when the illness was complex and patients were most ill tice at the Department of General Practice, Monash Uni- and vulnerable. Government prioritisation and competi- versity, Australia and Conjoint Associate Professor of tion for worthiness and support impacted upon people's General Practice at the Department of General Practice, experiences of care. This need has been recognised by The Newcastle University, Australia many initiatives and trials, but as stated by Harris in 2008 and others previously – these initiatives have been very Appendix slow to become mainstream activities [18,20,48]. Experiences, Needs and Problems in Relation to Chronic Conditions and General Practice Care, 1993 Yet there are many complex issues to deal with in health (members of four self-help groups: diabetes, epilepsy, care reforms, and one has to be particularly wary about cancer, asthma). Source: Martin C. The Care of Chronic Ill- the temptation of 'one-size fit all' solutions. Implement- ness in General Practice, PhD Thesis 1998 ing the Chronic Care Model, which itself has shown a number of significant deficiencies, would require a major Needs of people in relationship to GP and other care restructuring of health services. It is important that the 'wholesale' introduction of changes such as self-manage- � Living with protracted uncertainty or the inevitability of ment and lifestyle change does not interfere with relation- decline required hope and understanding. ship based care and those aspects that are already working well in the current system when patients in the phases of � Living with pain or disability or diminished social role serious chronic illness are most vulnerable. was difficult and required empathy and encouragement. � An awareness of the personal and social impact of illness Competing interests The authors declare that they have no competing interests. was needed from family, friends and healthcare providers. � Wanted the 'right GP' to provide whole-person care; Authors' contributions CMM conceptualized, designed, achieved funding, and characteristics of the 'right GP' included: supportive, inter- lead the focus groups their analysis and write up. She con- ested, helpful in clinical and practical way, good diagnos- ceptualized, designed, achieved funding, and led the ini- tic skills with up-to-date knowledge of when to refer, tial focus groups, their analysis and write up under the investigate and treat. supervision of Dr Jeanne Daly during her PhD studies. RR managed the project, the organization of focus groups, the � Appropriate access and availability to GPs, specialists data collection and audio taping; she conducted the initial and other professional care when needed. analysis of the focus groups and with CMM conducted the thematic analysis and the write up. CP, Co-Investigator, � Good communication between providers. provided valuable sociological expertise to the funding application and the methodological conduct of the study. � Continuity of care to have condition, treatment needs He provided a third analytical perspective to the thematic known and met by someone they could trust. analysis conducted by RR and CMM to ensure validity. He made a significant contribution to the write up of the Problems material. JPS contributed to the analysis and interpreta- tion and write up of the study. � Difficulty finding the 'right GP' to provide whole-person care who was prepared to commit to long-term personal About the authors chronic illness care. Carmel M Martin, MBBS, MSc, PhD, MRCGP, FRACGP, FAFPHM is Associate Professor of Family Medicine at the � GPs often lacked skills in diagnosis, willingness or abil- Northern Ontario School of Medicine, Canada ity to provide adequate explanation and information, often rejected patients when they were threatened by the Chris Peterson, Ph D. is Lecturer at the School of Social incompleteness of their own skills or medical knowledge. Sciences, La Trobe University, Australia � The frequent inability of the GP to know enough about Rowena Robinson, RN, BA previously was the Project specific conditions, but common inability of the specialist Officer with the Australian Medical Association, Can- to know the whole person. berra, Australia � A lack of time given to explanation and information Joachim P Sturmberg, MBBS, DRACOG, MFM, PhD, about medical, psychosocial and practical issues related to FRACGP is Honorary Associate Professor of General Prac- disease management. Page 11 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 � The dynamics of a long-term doctor-patient relationship need to have good communication among providers, usually lead to support or friendship, but could lead to else efforts were counterproductive. complacency or oversight. � Differences among disease groups � Although self-help groups filled an important gap, understanding of the individual, their chronic illness and + The specialist was deemed to be central to care, par- circumstances by professionals was often lacking. ticularly in relation to Epilepsy and Cancer not in remission, while the GP was main provider of diabetes Comparison and Contrast of Chronic Disease Groups and epilepsy care. Themes (1993 and 2003) + The role of the pharmacist was most important for General Practice Care the Epilepsy group. � Consistent themes across time and different disease groups + Community nursing was highly valued, particularly by the Cancer group. + Finding the right GP who had the following very important positive characteristics. + Palliative care was very important for cancer care. ▪ Personal qualities – understanding, support, + Dying was not present as a theme for the asthma, trust, truthfulness. epilepsy and diabetes groups. ▪ Provided adequate time and timely care in gen- � Differences across time eral practice. + GP Care Planning/Case Conferences and team care ▪ GP relationship and personal continuity of care initiatives were recognised as being very important, over time. especially GP Care Planning, although there was little experience of these activities. ▪ Clinical competence with disease knowledge and medication knowledge. Disease/Illness Issues � Differences among disease groups � Consistent themes across time and different disease groups + The Epilepsy group expressed greater reliance on the + Gaining control of the condition. This was the most 'right specialist' rather than the GP, in relation to diag- important goal in disease management and chronic nostic skills and disease knowledge. Prescribing and illness care, bringing health condition(s) into a life therapeutic issues were of concern. fulfilling and non-life threatening state. + The Cancer group who were all in remission placed + Community lack of knowledge of disease issues. very high reliance on the GP diagnostic skills in the very fraught area of detecting early recurrence or com- � Differences among disease groups plications. + Research/medical understanding of disease was � Differences across time driven by drug company/government priorities. + GPs were busier and had less time than previously. + Epilepsy was perceived to be the least well researched and understood across the whole spec- Team/Coordination/Referral Issues trum. � Consistent themes across time and different disease groups + Stigma and discrimination were particularly noted in relation to epilepsy and some cancers. + The 'right' GP, specialist, the pharmacist and com- munity nurses. � Differences across time + Team integration and communication were essen- + Improving research, knowledge and care for asthma tial. In order to help in chronic illness, there was a and diabetes. Perceptions that some cancer such as Page 12 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 breast and bowel were much advanced while other An EPC case conference is a meeting of health and care cancers such as brain cancers were neglected. Epilepsy providers to plan for the health care needs of an individ- was perceived to be lagging further behind other dis- ual with at least one chronic medical condition and com- eases. plex multidisciplinary care needs requiring care from a GP and at least two other health or care providers. Case con- + Stigma and discrimination were emerging in relation ferences may be undertaken in the community, on dis- to obesity and diabetes. charged into the community, or in Residential Aged Care Facilities. http://www.aodgp.gov.au/internet/main/pub The 'Self' lishing.nsf/Content/pcd-programs-epc-chronicdisease � Consistent themes across time and different disease groups accessed 13/1/09 + Control in chronic illness. Gaining control of the self The Sharing Health Care Initiative (SHCI) is designed to and holding on to one's identity was a strongly emer- improve the health related quality of life for people with gent and spontaneous theme across conditions and chronic diseases, to encourage people to use the health time. care system more effectively and to enhance collaboration between individuals, their families, carers and health care + Self-knowledge of one's own disease and body. This professionals in the management of chronic disease was universally agreed to as the most important pre- requisite to gaining control. These were both strong http://www.aodgp.gov.au/internet/main/publishing.nsf/ themes reflecting an 'expert patient' philosophy [41]. Content/chronicdisease-sharing.htm Age and life stage were factors that shaped self-image in chronic illness. Asthma Chronic Disease management. The Asthma Cycle of Care is a tool for general practitioners (GPs) and + Self-management/self-help and peer support. It is people with moderate to severe asthma to work together noteworthy that as these informants were all members to improve asthma management and quality of life of self-help groups that they were all supportive of the through an ongoing cycle of best practice asthma manage- concepts. ment. � Differences among disease groups http://www.medicareaustralia.gov.au/provider/incen tives/pip/files/asthma-cycle-of-care.pdf + Epilepsy comprised more members who were younger and the group formed because of personal accessed 13/1/09 difficulties with identity, personal development, edu- cation/employment, stage of life expectations and Acknowledgements The initial focus groups were funded by an Australian General Practice Eval- intrusive chronic illness. uation Program Grant and the second focus groups were funded by a RACGP Family Medical Care, Education and Research Foundation Grant. � Differences across time The initial focus groups conducted by Carmel Martin were supervised by Dr Jeanne Daly and Professor RM Douglas. The second focus groups were + Personal themes were consistent over time conducted by Carmel Martin and Rowena Robinson. The enthusiastic sup- port and selfless dedication of the self help groups who supported the An Enhanced Primary Care (EPC) GP management plan project is gratefully acknowledged – the Epilepsy Association of the ACT, (GPMP) is a comprehensive written plan that describes: the ACT Cancer Society, Asthma Association of the ACT and the non-insu- the patient's health care needs, health problems and rele- lin dependent Diabetes self-help group of Diabetes Australia, Canberra and Bosom Buddies. vant conditions; management goals with which the patient agrees; actions to be taken by the patient; treat- References ment and services the patient is likely to need; arrange- 1. Walker C: Putting the "self" back into self-management. In ments for providing these treatment and services; a date to Chronic illness: new perspective and new directions Edited by: Walker C, review these matters. Reviewing a GPMP is important. Peterson C, Millen N, Martin C. Melbourne: Tertiary Press; 2003:1-13. 2. WHO: Innovative Care for Chronic Conditions: Building http://www.aodgp.gov.au/internet/main/publishing.nsf/ Blocks for Action. Geneva 2002 [http://www.who.int/diabetesac tiononline/about/icccglobalreport.pdf]. Content/pcd-programs-epc-chronicdisease 3. Holmes AM, Ackermann RD, Zillich AJ, Katz BP, Downs SM, Inui TS: The Net Fiscal Impact Of A Chronic Disease Management accessed 13/1/09 Program: Indiana Medicaid. Health Aff 2008, 27(3):855-864. Page 13 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 4. 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Care for chronic illness in Australian general practice – focus groups of chronic disease self-help groups over 10 years: implications for chronic care systems reforms

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Springer Journals
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Copyright © 2009 by Martin et al; licensee BioMed Central Ltd.
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Medicine & Public Health; General Practice / Family Medicine; Primary Care Medicine
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1447-056X
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10.1186/1447-056X-8-1
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19161636
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Abstract

Background: Chronic disease is a major global challenge. However, chronic illness and its care, when intruding into everyday life, has received less attention in Asia Pacific countries, including Australia, who are in the process of transitioning to chronic disease orientated health systems. Aim: The study aims to examine experiences of chronic illness before and after the introduction of Australian Medicare incentives for longer consultations and structured health assessments in general practice. Methods: Self-help groups around the conditions of diabetes, epilepsy, asthma and cancer identified key informants to participate in 4 disease specific focus groups. Audio taped transcripts of the focus groups were coded using grounded theory methodology. Key themes and lesser themes identified using a process of saturation until the study questions on needs and experiences of care were addressed. Thematic comparisons were made across the 2002/3 and 1992/3 focus groups. Findings: At times of chronic illness, there was need to find and then ensure access to 'the right GP'. The 'right GP or specialist' committed to an in-depth relationship of trust, personal rapport and understanding together with clinical and therapeutic competence. The 'right GP', the main specialist, the community nurse and the pharmacist were key providers, whose success depended on interprofessional communication. The need to trust and rely on care providers was balanced by the need for self-efficacy 'to be in control of disease and treatment' and 'to be your own case manager'. Changes in Medicare appeared to have little penetration into everyday perceptions of chronic illness burden or time and quality of GP care. Inequity of health system support for different disease groupings emerged. Diabetes, asthma and certain cancers, like breast cancer, had greater support, despite common experiences of disease burden, and a need for research and support programs. Conclusion: Core themes around chronic illness experience and care needs remained consistent over the 10 year period. Reforms did not appear to alleviate the burden of chronic illness across disease groups, yet some were more privileged than others. Thus in the future, chronic care reforms should build from greater understanding of the needs of people with chronic illness. Page 1 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 national chronic disease networks are being set up in Background Chronic illness is when the disease intrudes upon every- China and India. day life in physical, psychological and social domains over a period of six months or more [1]. Chronic illness There has been a slow uptake in Australia of the key com- care for people has been conceptualised as ameliorating ponents of what is now known internationally as the the burden of chronic disease as it impacts upon people's Chronic Care Model [11]. For example, a recent qualita- lives [2], while Chronic Disease Management focuses on tive study of GP perceptions of chronic illness care indi- disease outcomes and processes linked to disease – mostly cated that such initiatives may have had a minimal impact primary secondary and tertiary prevention [3]. upon their everyday practice [24]. In Australia this has been attributed to constraints of time and a balance of Depending upon a perspective, the terms chronic disease, responsibilities [24]. As Harris stated in November 2008, condition and illness are either interchangeable, or con- 'the capacity of general practice to take these (components of vey different meanings. Most authors make philosophical the chronic care model) up has been constrained by funding distinctions between illness (and health) and disease. Dis- and workforce availability' and that he supports the more ease strictly relates to a diagnosis based on a biomedical intensive major workforce and health system restructuring diagnostic classification system, while illness relates to the planned by federal and state governments [20]. In addi- intrusion of unwanted and distressing symptoms and tion, a recent 2008 Commonwealth Fund survey of peo- experiences into everyday life, related to diseases or condi- ple with complex chronic care needs supports the need for tions. ongoing improvement of chronic illness care in 8 devel- oped countries [25]. Complex Adaptive Chronic Care addresses multiple phases and stages of chronic illness and disease care [4]. It On the other hand, there is international evidence to chal- deals with multiple dimensions beyond single disease lenge the effectiveness and efficiency of many current outcomes – bio-psycho-social and sense making or mak- approaches towards restructuring of health care to intro- ing sense of the disease(s), illness and care experiences [5]. duce major aspects of the Chronic Care Model [26,27]. This focus group study explores the sense making of peo- The Chronic Care Model appears to be better suited to ple with chronic disease in the Australian context over prevention of disease, than cost effective management of time. chronic illness [3,17]. Linking the Chronic Care Model to incentive based payments as in the UK, appears to deliver The global challenges of chronic disease prevention and improved performance on certain chronic disease param- the management of chronic illness are international. In eters [28]. However, performance was improving at a 2005, there were predicted to be 35 million deaths from rapid rate based on better information and practice organ- chronic diseases [6]. It is a global concern that has consid- isation before the introduction of incentives [29]. Alterna- erable urgency in terms of impact on population well tive models of narrative based medicine [30], being and economic burden [7]. Common concerns have transformative relationship based medicine [31] and been identified across developed, developing and transi- complexity science [13,32] may be more appropriate to tional countries [8] and the increased ageing of the popu- address the need to transform health systems to meet the lation exacerbates the problem. The Asia Pacific region needs of those with chronic illness, rather than the top has particular concerns arising from the rapid health tran- down linear and implementation 'science' based enforce- sition to obesity and diabetes [9]. ment of rigid protocols which emphasise the disease rather than the illness [4,28,33]. Other models of system There have been considerable efforts to implement transformation such as complex adaptive chronic care are chronic illness care through a number of initiatives dynamic, adaptive and bottom up building on individual through general practice/family medicine/primary care in needs in chronic illness [14,33,34]. Complex adaptive the past 10–15 years both internationally [10-15] and in chronic care recognises different stages in the chronic con- Australia [16-18]. Australian initiatives include Enhanced dition trajectory with different strategies and system Primary Care items such as Care Planning and Case Con- reform approaches needed to address the journey from ferencing [19], Co-ordinated Care Trials [17], Sharing primary prevention to chronic illness to pre-terminal care. Care (self-management) [20] and more recently the In this context, our study qualitatively explored the illness National Chronic Disease Strategy [21] around specific experience and care experiences of Australian people with diseases in the National Health Priorities [20]. Other Asia chronic disease. Focus groups of key informants who were Pacific countries such as Singapore and Malaysia are intro- members of self-help groups and who were willing to ducing Chronic Care Model style initiatives [22,23], and share their stories of having chronic illness and providing Page 2 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 peer support for self-management. This study compared It is recognised that this method produces a sampling bias their experiences in 2002/3 and 1992/3 [35]. but it did provide the most effective convenience sample for the project, and ensured a range of comparative answers to the researchers' questions. In addition, as key Aims The study aims to investigate the common and differing expe- informants, ACT self-help groups are largely comprised of riences of important chronic disease groups over time in relation the highly educated middle class of Australian society to their experiences of illness in the context of health system with many public servants or ex public servants residing in reform. This study aims to follow up previous work under- the nation's capital. They are articulate and empowered taken by the chief investigator, approximately 10 years and are likely to be early adopters of innovations and after the initial study, examining patients' perceptions of improvements in their care. chronic illness care provided by general practitioners, pri- mary care and the health system more broadly [35]. This Analysis study aims to inform other countries, as well as Australia, who Each focus group lasted between two and two and half are in the process of transitioning to chronic disease orientated hours and was audio taped and transcribed. Rice and Ezzy health systems. [36] recommend this method for gaining a good spread of ideas form study participants. The project officer and chief investigator independently categorised key themes, in an Materials and methods Focus groups were conducted with four self-help/con- exploratory and open ended manner, of the first focus sumer groups representing patients affected by epilepsy, group (Epilepsy ACT). The themes and categories coded asthma, cancer and Type 2 Diabetes in the ACT region, independently from this transcript were then analysed by replicating and adapting a previous study [35]. The groups the project officer and chief investigator together to clarify were conducted using theoretical sampling; that is they commonalities, differences, outliers or emergent phe- were conducted until no new themes emerged and there nomena. This was also checked back to the original focus was thematic saturation with no new variations emerging. group categories and codes derived by the use of grounded Rice and Ezzy [36] recommend the use of focus groups to theory, iteratively to develop a framework for analysis. gain insights into personal experience and to refine and Coding was then carried out independently by the two develop ideas about common experiences. The methodol- researchers and the same process repeated until saturation ogy is a grounded theory approach based on that refined and crystallisation of themes was achieved. For subse- by Glasser and Straus [37]. This approach was used by the quent groups the project officer and chief investigator chief investigator in her previous research with chroni- each independently coded half the transcript prior to dis- cally ill patients. cussion and clarification of the complete coding. Discus- sion of the coding and results were undertaken by face to Participant Recruitment face and teleconference meetings with the co-investigator. In the original research four focus groups were undertaken with members of self-help groups from the following A matrix was developed to allow a comparison of the organisations – Epilepsy Association of the ACT, the ACT themes from the current groups with those of the original Cancer Society Asthma Association of the ACT and the research. Emergent themes were identified. In the writing non-insulin dependent Diabetes self-help group of Diabe- of the report key themes were aggregated into broad issues tes Australia, Canberra. These four groups were invited to address the research questions. The final draft reports again to participate in the current research, and with the were sent to the self-help group members for member exception of the ACT Cancer Society (renamed Council) checking. The Epilepsy self-help group in particular felt all agreed to participate. The ACT Cancer Council was 'understood' by the focus group study. already engaged in participating in other research; how- ever they suggested another local cancer support group, Findings Bosom Buddies, who agreed to participate. To contextualise the findings of this study we briefly sum- marise the characteristics of the illness and care experi- Each of these groups recruited participants from their ences and the insights gained from the original focus membership. Not all groups had active self-help groups at groups in 1992/93. the time. A total of 32 people participated with 10 from Epilepsy ACT; 5 from Asthma Association; 6 from Bosom Original Focus groups 1993 Buddies and 11 from Diabetes ACT. Signed consent was In 1993, the self-help group members who attended the obtained from each participant. This study was approved focus groups described themselves as core members who by the Royal Australian College of General Practitioners were involved in the running of the organisation or were Research Ethics Committee. in a crisis period as a result of their disease status. Page 3 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 The key themes from the original groups related to the Issues regarding medication were prominent, particularly qualities desired in, and the concept of, the 'right GP'. relating to side effects, the years spent trying to find the Qualities of the 'right GP' included good disease knowl- right medication and the impact on quality of life with edge and diagnostic skills; commitment, caring and one person when speaking of experiencing 'the shakes' as a understanding and a trusting and therapeutic relation- side effect of a particular medication saying, 'I preferred to ship. The original groups also identified issues around the have the seizures'. To participants, epilepsy was not a prior- lack of time in GP consultations for chronic illness man- ity to medical research, the community or government – agement and the need for appropriate access to, and avail- there was a feeling of 'take your pills and shut up'. Loss of ability of, GPs and other health professionals. Appendix 1 jobs, licences, control during fits and friends were perti- outlines the key issues in the initial focus groups in more nent and distressing. Experiences resulting from commu- detail. nity stigma and lack of understanding and knowledge of epilepsy are exemplified by. 'Once they know you have epi- Follow up focus groups lepsy and still have fits, they are frightened to employ you on We first described the participants' experiences of 'being a manual jobs.' and 'We keep our epilepsy hidden ... as much as patient with a chronic disease' and their common experi- possible.' ences and disease-specific management experiences in general practice. In the second part we outline the remain- Asthma Group 2003 ing study questions regarding how the GP might better Asthma group participants were associated with the assist; examples of successful and less successful chronic organisation rather than belonging to a self-help group as illness care; and how chronic illness care in general prac- such. Most were female and aged over 40 years. Several, tice changed over the last 10 years. including Ben had a long standing relationship with the organisation and were advocates for better care. Ben Epilepsy Group 2003 described his experiences and felt he had 'lived on the knife The Epilepsy Group participants were associated with the edge for 20 years with severe asthma and COPD, and an eye organisation but not part of a formal support group. They condition called glaucoma'. He was desperately afraid of were convened on an ad hoc basis. Participants ages having a bad attack of asthma and landing in an emer- ranged from a primary school aged child to an aged pen- gency department somewhere and being given injectable sioner and there was an even gender split amongst partic- corticosteroids which could render him blind. 'My GP and ipants. asthma specialist know me and I am desperate to go through them and get directed into care ... I am working very hard to Difficult to control epilepsy was devastating. 'I was so psy- try to make sure that doctors know about asthma.' chologically destabilised by the grief of losing who I was (and) then coming to grips with the degenerating condition'. Participants felt that some GPs had a good general knowl- edge regarding asthma and its medications. Most felt that Most participants experienced that their GP did not know their GP referred and consulted appropriately with their enough about epilepsy and its medication to be able to specialist. The importance of good communication with provide management and support for it. Comments such the GP was emphasised by the group as well as the need as 'they don't know anything, so they can't help me' typified for a doctor with holistic skills to care for chronic illness. this. With drug therapy a central aspect of epilepsy care, Several spoke of the fear involved in a serious asthma most care was provided by the neurologist if not an epi- attack, particularly if it was in relation to their children. lepsy specialist. Numerous issues were raised around 'Fear and panic can be overwhelming.' Sometimes it is diffi- referral to specialists including whether referral should be cult to be taken seriously by medical practitioners. 'It can to a neurologist or epilepsy specialist. Finding the right be very hard to get past receptionists at time. They just fob you epilepsy specialist or neurologist was of paramount off to emergency.' Most spoke of the chronicity of asthma importance as there was a general consensus, that for peo- and the ongoing efforts and battles involved in keeping ple with challenging epilepsy, the right biomedical thera- their asthma and other lung conditions particularly peutic was critical. The self-help group networks allowed chronic obstructive lung disease well controlled, trying to informal 'insider' comparisons of GPs and specialists and prevent crises and to live a normal life. Alice had been provided advice on who to attend when care wasn't work- plagued with exacerbations of her long term lung prob- ing. 'Wouldn't attend him in a million years' was a common lems. This culminated in a recent hospital admission a few verdict about a certain specialist. 'My GP's OK, I trust him weeks ago. Since her discharge from hospital, Alice claims because he has served me and my father well, although he she 'has not been the best'. Despite this, she has continued doesn't know anything about epilepsy. At least he knows what to keep up with her many social activities. She 'never gives he doesn't know, so I trust him if I have the flu or other sorts of up'. problems.' Page 4 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Cancer Group 2003 for accurate information was heavily emphasised, for Most of the cancer self-help group – 'Bosom Buddies' – example, 'that's what diabetes is, it's always learning, always focus group participants had had a diagnosis of breast learning'. cancer. One woman was experiencing a recurrence of can- cer at the time of the meeting and one participant was the Key themes to emerge from the research husband of a woman called June who had died from brain The main themes focussed on general practice access and cancer. June had no access to a brain cancer support group availability; health system issues; disease issues and other throughout a gruelling battle to her death. She and her issues. Focus group themes were identified and catego- husband, Brian, had been 'adopted' by Bosom Buddies. rised. Strong themes were expressed as being important by All were over 40 years of age. more than half the group and reached saturation early. They were also spontaneous without prompting. Moder- The issue of finding the 'right GP' was a particularly key ate themes were presented often resulting from inter- theme in the cancer group. Also, the need for good com- viewer prompts. Themes that were not present were munication with the GP and between the GP and the neither spontaneously stated nor stated in response to sometimes multiple specialists was emphasised. 'Having a interviewer prompts. Key findings are shown below in the GP who listened to and treated concerns promptly and appro- (Appendix 2) and reported in more detail below. priately;' was paramount in the ever vigilant defence against the constant spectre of potential recurrence. Thor- General Practice Access and Availability oughness and a responding to 'gut' feelings of the patient One participant summed up the challenges of access and were recurrent themes and key qualities desired in a GP, availability as threefold in 'finding a doctor and getting in for example, 'I knew it was a recurrence but I had a hard time and having enough time'. convincing people of that.' This was particularly important Finding a GP in relation to diagnostic skills and looking at a person holistically rather than focussing on the results of a partic- Many in the groups reflected current concerns regarding ular blood test or scan. There was a need to 'listen to the the availability of GPs. Several had experienced the diffi- whole body.' culty of finding a new GP when their GP retired or closed the practice. Many had either personal experience or were Diabetes Group 2003 aware of situations where GPs had 'closed their books'. All the focus group participants had mature onset diabetes Several spoke of the relief of having found a GP they were ranging from those controlled by diet and exercise satisfied with and having become a patient before the through to medication. They were all members of the Dia- 'books' had been closed. betes Australia support groups and met regularly for activ- ities and support. There was a fairly even gender split with Finding the 'Right GP' most participants being of retirement age. One of the One of the main recurrent themes of the original and cur- members, Joan, was a participant in both 1993 and 2003 rent research was finding the 'right GP' in terms of profes- focus groups. She was recovering from her first heart sional and personal qualities. Sometimes finding the attack. However she was grateful for the developments in 'right GP' takes on a sense of urgency, 'When you are diabetes care and felt very secure. 'I just thought of it as being younger and well and the kids just have minor illnesses, it inconvenient in some ways.' doesn't matter so much ... then all of a sudden to jump into this world of malignancy (cancer), you're in a different ball game A strong theme for participants was that diabetes care and ... Well what we did once it became serious, we looked for a management was their responsibility. 'But really the respon- good GP and that was important in the whole process, a sym- sibility is our own because he can't cure the disease, he can pathetic GP and we were very lucky to get associated with him'. manage it and that's what we've got to do, just manage it' and 'apart from smoking and smoking related diseases, it's probably Some noted the importance of the GP when facing the most patient controlled illness'. There was an almost chronic illness, for example, 'chronic disease, that's when mixed reaction to the advent of HbA1c testing that gives a you need your time, your space, the knowledge, the experience reading on the degree of blood sugar control over the pre- and the skilled GP'. One person commented that the 'right' vious three months with some patients feeling a loss of was a time influenced event in that 'the GP you've got today personal freedom and omnipotent control by the doctor might not be the one you need in five years time when you con- as is illustrate by this quote, 'you can play up for (just one dition's different'. week) and get into trouble'. Finding the 'right GP' is a process of finding the one with For most, their GP managed their diabetes with only a few the desirable qualities. How is this done? Participants consulting a specialist. The issue of learning and the need commented on the lack of guidance for people in this Page 5 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 process and how it often came down to 'word of mouth' Diagnostic skills although this was obviously difficult for those new to a GPs diagnostic skills were regarded as extremely impor- city. Self-help groups provided considerable support tant whether in making the original diagnosis of the when people with serious need were new to a city and chronic condition or in relation to aspects of other condi- looking for a GP. For many participants the length of rela- tions. Some comments emphasised the difficulty in the tionship they had with their GP was a significant aspect in GP role in being able to discern between the trivial and the the ongoing trust, confidence and personal rapport. They serious of symptoms. Others noted the importance of gained a lot from this continuity of care. 'He instils confi- generalism in diagnosis and management 'I suspect too that dence ... He gives me the impression – he seems to have a com- the true value of a GP is just that, general, everything'. mon sense approach... No, he (has been visiting this patient Referral to specialist care for over 20 years) ... he got me through that (exacerbation of condition) amazingly ... he was brilliant. Three months it Referral issues were prominent in most groups. For took, and together we will do it, and that is his approach.' patients with epilepsy there was the issue of being referred to a specialist with sufficient specialised knowledge while Qualities of the 'Right GP' for those with multiple specialist involved, for example Supportive, understanding and a good communicator with cancer care, it was important to have good links Focus group participants were consistent in the qualities between all the specialists and the GP. they were looking for from their GP and reaffirmed the qualities identified in the original focus groups. Under- Whilst many participants assumed there was ongoing ver- standing and supportive, trustworthy, holistic care, good bal communication between their GP and specialist few listening and communication skills were key qualities par- were able to confirm this. However many were happy with ticipants were looking for. 'They're looking at the whole pic- the links between their GP and specialist with one person ture'. These qualities were important even if their specific commenting 'between the doctor and the specialist, they seem medical chronic illness care came from their specialist. to work in tandem'. Other qualities included being interested, thorough, and approachable; having a good sense of humour, empathy, Prescriptions With the exception of the cancer group, participants in the and being able to talk to about concerns. It was vital to recognize the emotional state of people at the diagnostic other groups identified the provision of prescriptions as a or transitional stages of disease as is exemplified by '(you) key reason for attending the GP. For some this was their only hear (the) first bit of information and after that you're in prime reason as particularly with the epilepsy groups they shock" and 'She understood that I was in shock and rang me did not perceive the GP as having much of a role in their later at home ...' disease care. Pharmacists had an important role in moni- toring and supporting medication use, particularly in epi- It was important to patients to be seen as a whole person, lepsy when most of the prescribing is by specialists and for example 'she sees me as a diabetic person rather than as 'a GPs are limited to writing repeat prescriptions. '... it's as if patient'' and ' ... treat me more as a personal patient ... an indi- he (the GP) didn't know because I just went through a whole vidual ... rather than just someone who has epilepsy'. heap of pills' from the specialist that didn't work and he (the GP) just repeated the prescriptions. Matching of expectations was another important quality. 'A distinction has to be made between patient and general prac- Access to the GP titioner expectations of the interaction, which may differ mark- Difficulties of getting an appointment edly and would seem to require a 'match' between the general Some noted the increasing difficulty of getting an practitioner and the patient in order to obtain mutually satisfy- appointment at short notice 'it's like, if you're very unwell ing outcomes of the interaction during (the) consultation.' you just have to sit unwell and just cope as well as you can until you get access to the doctor'. Disease knowledge Most groups identified that there was a general lack of In most groups there was some discussion of locum med- knowledge amongst GPs of their particular condition, its ical practitioners. There was general dissatisfaction regard- treatment and medications. The GP was however regarded ing the thoroughness and quality of care from locums. as a key source of general information. Whilst recognising Several had had experiences of being given, or nearly GP heavy workloads and the fact that they were not spe- being given, the wrong medication with others experienc- cialists, all groups identified the importance of GPs keep- ing their symptoms as being trivialised and resulting in a ing up to date with latest information particularly in reluctance to see a locum again. 'I will wait until my GP relation to medications. 'We are in their hands and we are returns. The locums are generally useless.' vulnerable.' Page 6 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Consultation length any improvement. 'I don't think it has changed much, every- The general experience across the four groups was of not one seems to be busier and no one has time to talk and explain.' having sufficient time in consultation with the GP. One person noted: 'Sometimes you actually just want to have a big The Enhanced Primary Care items were designed to talk just for... reassurance maybe ... and that is the time that deliver more coordinated, structured care to patients, you are feeling ... the need ... it is so disappointing when you however, based on this sample there was little experience are pushed out the door'. Some participants in most groups of their penetration to everyday care. had experience with requesting longer consultations, at the time of making the appointment, and found this val- A subtle change in language had emerged over the 10 year uable. Another person commented: 'My feeling is that most period. There were examples of appreciation of the use of GPs are so busy and their time is so precious. And they make it structured care in terms of three monthly diabetes checks, that way, I mean; they don't have to.. in my opinion. They use of Information Technology (IT) systems. Some com- could decide to spend 25 minutes with every patient and to hell ments were made on the role of the GP as 'case manager'. with whatever the statutory rate is and just make less money but Many made reference to desiring that their GPs would be still have, I would have thought, a more interesting life'. able to access hospital records electronically. 'I would so welcome my GP getting my hospital records so that she could Many participants felt that GP's had been increasingly understand and explain to me what happened there. It is like a busy and were concerned that some government initia- black hole, my experiences there.' and 'We know there are pri- tives, whilst good ideas, would add further to this burden. vacy issues, but I want to understand what happened to me, I In relation to the introduction of care planning and the want to understand what happened to my body.' While being chronic disease items one participant noted, 'And I just cognisant of the impact of privacy concerns on the imple- wonder how they are going to fit more in'. mentation of IT, several participants noted the used of IT systems for various aspects of the consultation and felt Other Providers and Care in the home that informational continuity that they provided was very This study focussed upon GP care; however other provid- important in their chronic care. ers were identified as playing key roles. Other initiatives Community nurses were seen as especially important, Only one person was aware of, and participating in the 'Community nurses have holistic view and ability to refer on'. Sharing Health Care [Appendix 5] (self management pro- and 'They are wonderful'. They have a central role in the gram) and this person spoke positively, regarding it as continuity of care in serious sickness and disability. Palli- 'really helpful'. Others in the group noted the barriers to ative care nurses and palliative care doctors were so access to this program that was restricted by age and hav- important in the terminal stage of home care, as their reg- ing certain conditions. ular GP did not visit. 'Oh – the GP he never came to the home. We relied on the home-based palliative care, community Most in the asthma group were aware of the Asthma Man- nurses, specialists, hospice in that situation.' Yet, coordina- agement Plan Program with several raising concerns that tion of care was challenging.' One could only trust they were the program delivered payment to doctors for better man- all travelling in the same direction.' Pharmacists were partic- agement of their asthma rather than patients who did the ularly helpful in stages of care where medication was a work – 'the incentives in medicine, in health care, are focussed major feature of the therapy, especially when there were on the professionals as opposed to some of the incentives being frequent dosage and treatment changes, and sometimes within the community or the consumers'. [Appendix 6 provided considerable informational and at times rela- describes the modification of the program discussed at the tionship support. 'I really rely on my local pharmacist. We are focus groups which still pays the practice rather than good friends over the years.' patients for good care]. Whilst only one person was aware of the GP yearly payment for a diabetes register and struc- Health system issues tured care, many were engaged in regular three monthly Enhanced Primary Care/Structured Care diabetes checkups but were not aware of these as specific On average, only one person in each group was aware of government initiatives. the Enhanced Primary Care or chronic disease initiatives per se. Most seemed to feel that care planning [Appendix Change over time 3] [38] was a worthwhile initiative that could help organ- Many participants experienced their GPs as being very ise their care better. Some groups expressed concern about pressured these days, for example 'There's more pressure on the fairness of GP payments for case conferences [Appen- doctors now days ... I really feel when I go to see him that he's dix 4] as this was regarded as something they should on edge'. Participants in some groups noted the improve- already be doing. When asked about changes in primary ment in medications or management of their condition care over the last 10 years most felt there had been little, if over time. Page 7 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 One person noted their changed experience of general Self-management programs practice care as a trajectory moving from a shopfront type Self-management training and support were perceived to of practice to a group practice to one now where he has an be useful, but restricted to specific age groups, locations ongoing relationship with his GP. Others felt their care and types of diseases. The common overriding themes had become more impersonal and mechanical. about the experience of serious illness were fear and anxi- ety, the need to trust medical care providers balanced by Prioritisation of Issues the need to make your own way and 'to be your own case An issue was raised in regards to government prioritisa- manager'. Knowing about the next steps and 'the nature of tion of issues and concentrating on areas where they per- the beast' and how to manage the disease and its mental ceive they can make gains to the detriment of other and emotional concomitants for the sufferer and the carer conditions. For example, 'having been associated with one of were huge existing gaps. Training of GPs and all health the minority areas I know what it's like from the outside, seeing professionals in this regard would be invaluable. a lot of work done, a lot of attention, a lot of focus, a lot of book- lets, resources, support groups for some conditions such as breast Common themes – narratives of experiences of health and cancer compared to fumbling around in the dark, struggling, illness differed across diseases according to the predomi- trying to find someone to make some sense of this very minority nant pattern of bodily dysfunction, yet fear and anxiety type of grouping you're in – brain cancer'. Whilst not made and a shaken trust in their own body were ubiquitous. by a participant in the epilepsy group it has particular res- Gaining control of the condition was the most important onance from the participants in that group and the lack of goal in disease management. Control was secondary to knowledge, research and resources related to epilepsy. cure, which was the ideal. Compared to the initial focus groups, the later groups had perceptions of considerable Disease issues improvement in medical knowledge for asthma and dia- Control betes. Cancer was a variable field with perceptions that The issue of control was a recurrent theme throughout the some cancer such as breast and bowel were much groups although the context varied. For some it was con- advanced while other cancers such as brain cancers were trol of quality of life or medication side effects while for neglected. Epilepsy was perceived to be the least well others, as in the case, of asthma, it was of the condition, researched and understood across the whole spectrum of for example 'the fear that's behind the scenes when you do lose the conditions. Community lack of knowledge of disease control' and 'It takes at least a month frequently to get back to issues was perceived to be lacking with associated stigma the level of control I had before that exacerbation.' and discrimination and this was noted in relation to epi- lepsy and some cancers. Self-help organisations Almost all participants spoke very positively about the Discussion benefits they gained from involvement in the self-help Chronic disease management has attracted a lot of atten- organisation which had provided significant assistance in tion in the Australian and international context because of the support and education aspects of managing and com- its impact on mortality, health care resources and its eco- ing to terms with the condition. Several noted the impor- nomic burden on governments and health care funders tance of education and support for family members. [6]. In an effort to ameliorate these threats and deficien- However, 'not everyone is a support groups participant' by cies the Australian government has spent many millions nature. It was interesting to note that very few people were of dollars on Enhanced Primary Care initiatives and a referred to the self-help organisation by their GP. One per- National Chronic Disease Strategy. In Victoria, Australia's son also noted the support that was available through second most populous State, an initiative called Primary Internet based groups, particularly for 'smaller' cancers Care Partnerships have been an attempt to link local gov- with less prominence. Peer support was also very impor- ernment initiatives with both the State government and tant. with private general practitioners, pharmacists and com- munity nursing services in their area to ensure the devel- Self-education opment of relevant care coordination and case The importance of learning and educating oneself about management structures for chronic illness. Other States the condition was highlighted by all the groups. The role and Territories have had similar programs, which are all of the Internet in facilitating this was touched on in sev- essentially top down, building on government and health eral of the groups. Whilst self-education was still regarded professional views of care needs. Much less attention has as a key issue in the epilepsy groups it also highlighted the been paid to the experiences of people with chronic dis- relative lack of available information compared with ease in the health care system, particularly in primary care. some of the other conditions. To what extent are these initiatives responsive to chronic Page 8 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 illness and how has general practice and primary care dynamic changing needs of the ill and vulnerable at low reform change impacted on people's experiences of care? ebb in their life course. While these focus groups are of key informants from The fact that self-help group members included highly chronic disease self-help groups from one locality, Can- educated and politically aware members who were almost berra in the Australian Capital Territory, they typify a wide completely unaware of the enhanced primary care initia- group of patients who described themselves as educated, tives is challenging. This is particularly perplexing as these informed and articulate. Some members were leading in participants were strongly engaged for many years prior to policy making around patient support initiatives and the Australian government initiatives in an 'expert patient' likely to be well informed, comfortable with their condi- philosophy [41]. Perhaps there merely reflects a slow dif- tion and its social situation. They were prepared to be fusion of the initiatives of the Chronic Disease Strategy actively involved with the professionals and support and Enhanced Primary Care, and it may have changed groups, whereas other members described themselves as even to this date. On the other hand, it may reflect an Aus- having difficulty with their condition, difficulty gaining tralian chronic disease program that is still conceptualised and maintaining employment, and feeling socially mar- as a complicated top down rather than as a complex bot- ginalized. tom up system change. These observations reiterate the need to consider psycho- Given the self-management and self-care aspects of social aspects in the management of chronic illness to be chronic disease, many participants indicated they may equally important as disease-specific treatment. As these have chosen to avail themselves of particular Australian informant groups highlight one can successfully adapt to initiatives – particularly multi-disciplinary care planning. ones lasting disease and optimize the experience of 'good However, the general theme was that GPs were getting health' whereas for others their ongoing problems impact busier and would not have time to sufficiently participate. continuously and negatively on several aspects of their Of concern is the perception that the Enhanced Primary life. An issue not often recognised was the social response Care and Chronic Disease programmes seem to be to chronic disease – stigmatisation of chronic disease was designed by bureaucrats for accountability purposes, particularly noted in relation to epilepsy and some can- based on what other countries were doing, rather than try- cers [39], with diabetes and obesity and smoking related ing to help the GP in their care. disorders, being conditions where there was, perhaps, increasing stigmatisation [40]. Clearly there is a need for further studies to fully under- stand the poor penetration of enhanced primary care ini- From a philosophical as well as a pragmatic perspective tiatives to assist people with chronic disease. A recent chronic disease management must reflect the needs and analysis has confirmed the slow uptake of initiatives, per- values of the individual patient. As a consequence chronic haps limited by GPs capacity to absorb the extra work into disease management programmes must provide flexible their every day practices [20]. In addition, access to con- approaches in a resource sufficient environment, and all sultation time is perceived to remain under pressure, per- collaborators in a chronic disease management pro- haps greater than ever. Our qualitative findings are in line gramme need to accept that they are not always needed all with those in other locations as reported by Infante et al of the time. [42]. While the language is slightly different, the relation- ships and social interactions in chronic disease care were It is therefore not surprising that this group very power- found to be similarly important [42]. fully expressed the need for an in depth personal thera- peutic relationship with a primary care physician, Healing is an important concept and therapeutic relation- reaffirming the needs expressed in 1992/3. The 'right GP' ships that are attuned to the patient narratives [43] are an plays the role of healer, confidant and scientific expert often unrecognised aspect of the Chronic Care Model with the self-knowledge and courage to admit the limits of [31,44]. their knowledge. These findings are encouraging for the educators and planners of general practice. They delineate Are these findings relevant to developing countries and an interconnecting adaptive (generalist) GP role in non Western health systems? chronic illness, with in depth skills in diagnosis, treat- ment, active listening and therapeutic relationships across The international literature supports the universality of disease and illness. Ongoing reform needs to strengthen the burden of chronic disease. Control is understood to person-centred primary care approaches in order to better entail a shift to a Western individualistic model of health address both intense threatening illness and disease-based with the aim of managing disease. Studies of women in Page 9 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 Philippines, Thailand, Malaysia, Canada, Hong Kong, and and indicates the importance of building change and Singapore have identified common factors in the need for improvement on local culture and existing system con- greater medical understanding of disease [8]. texts and successes based on in depth analysis of existing strengths as well as apparent short comings. Such qualita- Yet, globally, it is health and well being which is arguably tive studies as this are the personal stories and experiences more important. The WHO Commission on Social Deter- to accompany other indicators of complex care [25] and minants of Health defines health as 'the extent to which an as such as are a warning light that draw our attention to individual, family or community is able to realize aspirations & areas of concern. Indicators need detailed and triangu- satisfy needs to cope with their environment' [45]. There are lated studies, often additional in depth research and very many definitions of health which have major commonal- careful interpretation, before they are evidence for policy ities all stressing patient centred care around the personal change over time. experiences and the need to reconstruct the self in the light of chronic illness, despite cultural differences [22,46]. Understanding generic chronic care in complex health While the notion of the patient as 'expert' is not a tradi- systems requires us to observe and understand the lived tional approach of most Asia pacific countries, peer sup- experience and sense making of those who go through the port for self-management may well fit into the socio- care, as much as about the disease and its management. cultural framework. Also, despite commonly accepted dif- ferences in Western individual orientation and non-West- Conclusions and recommendations ern collective social orientation, a bi-culture is emerging Chronic illness is a major social phenomenon as well as a in Asia with a blurring of individual and collective respon- biomedical and economic challenge, and occurs when the sibilities [47]. disease or condition intrudes on people's lives and per- sonal experiences. In the Australian context making sense In regards to research, epilepsy was perceived to be very of chronic illness experiences through personal relation- poorly supported during the past 10 years. People with ship based care with the 'right GP' or right specialist and asthma and diabetes in contrast felt that therapeutics had other professionals, were central to better experiences of improved their support. Cancer was divided into the com- illness. mon 'popular' cancers such as breast cancer which received a great deal of government funding and support Gaining control of the sense of self and holding on to for sufferers and rarer cancers which were the "Cinderel- one's identity was a strongly emergent and spontaneous las" of cancers. The prioritisation of some chronic disease theme across conditions and time. Self-knowledge of and illness over others is clearly not based on social justice one's own disease and body was universally agreed to as concerns and equity. Rather it is based upon perceived being the most important prerequisite to gaining control. public health and economic burden [6]. The main themes identified in response to the study ques- However, that does not mean that results can be immedi- tions were the importance of a person-centred and techni- ately generalised as evidence for health system perform- cally competent general practitioner and did not ance in different countries? substantially differ from the 1992/3 focus groups. The intensity of need for the 'right GP' when people were in a Cultural differences among patients and contextual differ- phase of serious chronic illness was reaffirmed. An in- ences in health systems are very entrenched and impor- depth relationship of trust based upon personal rapport tant considerations. For example, Australian patients have and understanding and clinical and therapeutic compe- a highly developed 'consumer awareness' having a history tence with the ability and commitment to refer to and of being able to shop around for the care they 'want' as liaise with specialists and other professionals was a distinct from 'need' and have a Western individualistic strongly emergent theme. culture. In contrast, patients in other countries have had little choice and have passive acquiescence to what the The self-help group members had little experience of the health system has to offer. enhanced primary care initiatives. Care planning was the initiative that was identified as being potentially most Similarly many constructs examined in the survey, such as helpful in general practice care. Self-management pro- 'access', differ in various contexts. Other areas that need grams that linked with the self-help group activities were closer analysis and examination of underlying assump- perceived as potentially helpful. However, how they are tions include the uncritical use of the Chronic Care Model introduced needs careful planning and it may be that a as a service template rather than as a conceptual frame- variety of self-management programs offering choice to work for chronic care. However, this focus group study is patients may be most desirable. The need for case man- a barometer of what is happening in chronic illness care agement, support and self-management was a key feature Page 10 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 when the illness was complex and patients were most ill tice at the Department of General Practice, Monash Uni- and vulnerable. Government prioritisation and competi- versity, Australia and Conjoint Associate Professor of tion for worthiness and support impacted upon people's General Practice at the Department of General Practice, experiences of care. This need has been recognised by The Newcastle University, Australia many initiatives and trials, but as stated by Harris in 2008 and others previously – these initiatives have been very Appendix slow to become mainstream activities [18,20,48]. Experiences, Needs and Problems in Relation to Chronic Conditions and General Practice Care, 1993 Yet there are many complex issues to deal with in health (members of four self-help groups: diabetes, epilepsy, care reforms, and one has to be particularly wary about cancer, asthma). Source: Martin C. The Care of Chronic Ill- the temptation of 'one-size fit all' solutions. Implement- ness in General Practice, PhD Thesis 1998 ing the Chronic Care Model, which itself has shown a number of significant deficiencies, would require a major Needs of people in relationship to GP and other care restructuring of health services. It is important that the 'wholesale' introduction of changes such as self-manage- � Living with protracted uncertainty or the inevitability of ment and lifestyle change does not interfere with relation- decline required hope and understanding. ship based care and those aspects that are already working well in the current system when patients in the phases of � Living with pain or disability or diminished social role serious chronic illness are most vulnerable. was difficult and required empathy and encouragement. � An awareness of the personal and social impact of illness Competing interests The authors declare that they have no competing interests. was needed from family, friends and healthcare providers. � Wanted the 'right GP' to provide whole-person care; Authors' contributions CMM conceptualized, designed, achieved funding, and characteristics of the 'right GP' included: supportive, inter- lead the focus groups their analysis and write up. She con- ested, helpful in clinical and practical way, good diagnos- ceptualized, designed, achieved funding, and led the ini- tic skills with up-to-date knowledge of when to refer, tial focus groups, their analysis and write up under the investigate and treat. supervision of Dr Jeanne Daly during her PhD studies. RR managed the project, the organization of focus groups, the � Appropriate access and availability to GPs, specialists data collection and audio taping; she conducted the initial and other professional care when needed. analysis of the focus groups and with CMM conducted the thematic analysis and the write up. CP, Co-Investigator, � Good communication between providers. provided valuable sociological expertise to the funding application and the methodological conduct of the study. � Continuity of care to have condition, treatment needs He provided a third analytical perspective to the thematic known and met by someone they could trust. analysis conducted by RR and CMM to ensure validity. He made a significant contribution to the write up of the Problems material. JPS contributed to the analysis and interpreta- tion and write up of the study. � Difficulty finding the 'right GP' to provide whole-person care who was prepared to commit to long-term personal About the authors chronic illness care. Carmel M Martin, MBBS, MSc, PhD, MRCGP, FRACGP, FAFPHM is Associate Professor of Family Medicine at the � GPs often lacked skills in diagnosis, willingness or abil- Northern Ontario School of Medicine, Canada ity to provide adequate explanation and information, often rejected patients when they were threatened by the Chris Peterson, Ph D. is Lecturer at the School of Social incompleteness of their own skills or medical knowledge. Sciences, La Trobe University, Australia � The frequent inability of the GP to know enough about Rowena Robinson, RN, BA previously was the Project specific conditions, but common inability of the specialist Officer with the Australian Medical Association, Can- to know the whole person. berra, Australia � A lack of time given to explanation and information Joachim P Sturmberg, MBBS, DRACOG, MFM, PhD, about medical, psychosocial and practical issues related to FRACGP is Honorary Associate Professor of General Prac- disease management. Page 11 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 � The dynamics of a long-term doctor-patient relationship need to have good communication among providers, usually lead to support or friendship, but could lead to else efforts were counterproductive. complacency or oversight. � Differences among disease groups � Although self-help groups filled an important gap, understanding of the individual, their chronic illness and + The specialist was deemed to be central to care, par- circumstances by professionals was often lacking. ticularly in relation to Epilepsy and Cancer not in remission, while the GP was main provider of diabetes Comparison and Contrast of Chronic Disease Groups and epilepsy care. Themes (1993 and 2003) + The role of the pharmacist was most important for General Practice Care the Epilepsy group. � Consistent themes across time and different disease groups + Community nursing was highly valued, particularly by the Cancer group. + Finding the right GP who had the following very important positive characteristics. + Palliative care was very important for cancer care. ▪ Personal qualities – understanding, support, + Dying was not present as a theme for the asthma, trust, truthfulness. epilepsy and diabetes groups. ▪ Provided adequate time and timely care in gen- � Differences across time eral practice. + GP Care Planning/Case Conferences and team care ▪ GP relationship and personal continuity of care initiatives were recognised as being very important, over time. especially GP Care Planning, although there was little experience of these activities. ▪ Clinical competence with disease knowledge and medication knowledge. Disease/Illness Issues � Differences among disease groups � Consistent themes across time and different disease groups + The Epilepsy group expressed greater reliance on the + Gaining control of the condition. This was the most 'right specialist' rather than the GP, in relation to diag- important goal in disease management and chronic nostic skills and disease knowledge. Prescribing and illness care, bringing health condition(s) into a life therapeutic issues were of concern. fulfilling and non-life threatening state. + The Cancer group who were all in remission placed + Community lack of knowledge of disease issues. very high reliance on the GP diagnostic skills in the very fraught area of detecting early recurrence or com- � Differences among disease groups plications. + Research/medical understanding of disease was � Differences across time driven by drug company/government priorities. + GPs were busier and had less time than previously. + Epilepsy was perceived to be the least well researched and understood across the whole spec- Team/Coordination/Referral Issues trum. � Consistent themes across time and different disease groups + Stigma and discrimination were particularly noted in relation to epilepsy and some cancers. + The 'right' GP, specialist, the pharmacist and com- munity nurses. � Differences across time + Team integration and communication were essen- + Improving research, knowledge and care for asthma tial. In order to help in chronic illness, there was a and diabetes. Perceptions that some cancer such as Page 12 of 14 (page number not for citation purposes) Asia Pacific Family Medicine 2009, 8:1 http://www.apfmj.com/content/8/1/1 breast and bowel were much advanced while other An EPC case conference is a meeting of health and care cancers such as brain cancers were neglected. Epilepsy providers to plan for the health care needs of an individ- was perceived to be lagging further behind other dis- ual with at least one chronic medical condition and com- eases. plex multidisciplinary care needs requiring care from a GP and at least two other health or care providers. Case con- + Stigma and discrimination were emerging in relation ferences may be undertaken in the community, on dis- to obesity and diabetes. charged into the community, or in Residential Aged Care Facilities. http://www.aodgp.gov.au/internet/main/pub The 'Self' lishing.nsf/Content/pcd-programs-epc-chronicdisease � Consistent themes across time and different disease groups accessed 13/1/09 + Control in chronic illness. Gaining control of the self The Sharing Health Care Initiative (SHCI) is designed to and holding on to one's identity was a strongly emer- improve the health related quality of life for people with gent and spontaneous theme across conditions and chronic diseases, to encourage people to use the health time. care system more effectively and to enhance collaboration between individuals, their families, carers and health care + Self-knowledge of one's own disease and body. This professionals in the management of chronic disease was universally agreed to as the most important pre- requisite to gaining control. These were both strong http://www.aodgp.gov.au/internet/main/publishing.nsf/ themes reflecting an 'expert patient' philosophy [41]. Content/chronicdisease-sharing.htm Age and life stage were factors that shaped self-image in chronic illness. Asthma Chronic Disease management. The Asthma Cycle of Care is a tool for general practitioners (GPs) and + Self-management/self-help and peer support. It is people with moderate to severe asthma to work together noteworthy that as these informants were all members to improve asthma management and quality of life of self-help groups that they were all supportive of the through an ongoing cycle of best practice asthma manage- concepts. ment. � Differences among disease groups http://www.medicareaustralia.gov.au/provider/incen tives/pip/files/asthma-cycle-of-care.pdf + Epilepsy comprised more members who were younger and the group formed because of personal accessed 13/1/09 difficulties with identity, personal development, edu- cation/employment, stage of life expectations and Acknowledgements The initial focus groups were funded by an Australian General Practice Eval- intrusive chronic illness. uation Program Grant and the second focus groups were funded by a RACGP Family Medical Care, Education and Research Foundation Grant. � Differences across time The initial focus groups conducted by Carmel Martin were supervised by Dr Jeanne Daly and Professor RM Douglas. 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Journal

Asia Pacific Family MedicineSpringer Journals

Published: Jan 23, 2009

References