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1.  A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness 
The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers.
We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease.
Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes.
In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.
PMCID: PMC3706210  PMID: 23819721
2.  Qualitative study of young people's and parents' beliefs about childhood asthma. 
BACKGROUND: Asthma continues to be a common childhood chronic illness managed principally in primary care. Self-management requires co-ordinated efforts of young people, carers and health professionals. Non-compliance occurs even when parents are supervising care, suggesting that decisions are made on the basis of beliefs that contrast with professional advice. Health professionals therefore need to understand the views of parents (or other carers) and patients to promote good self-management. Little attention has been given to carers' and young people's perspectives on asthma. AIM: To gain insights into the beliefs of a group of 25 young people aged nine to 16 years old and their carers about asthma and its management. DESIGN OF STUDY: Qualitative study using conversational-style interviews. SETTING: Generally deprived urban areas of Greater Manchester. METHOD: Interviews were conducted with 25 young people with asthma and separately with their carers. The interviews were analysed using the principles and procedures of grounded theory. RESULTS: Carers reported assessing asthma symptoms through observed effects on the child and other family members, including emotions and behaviours that disrupted family life. Young people emphasised the effect of asthma on their everyday lives and in particular the extent to which they appeared different to their peers. Some young people reported continuing symptoms and restrictions of activity that differed widely from the reports of their carers. CONCLUSION: Differences between young people's and carers' criteria for assessment suggest explanations for some 'non-compliant' behaviour. Carers' assessment of asthma severity through the absence of acute attacks is consistent with managing asthma as intermittent acute episodes. Professionals should take account of differences between young people's, carers' and professionals' perceptions of asthma.
PMCID: PMC1314542  PMID: 14694693
3.  With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study 
BMC Public Health  2011;11:686.
Understanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members.
Nineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software.
Participants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support.
Certain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.
PMCID: PMC3176222  PMID: 21888670
Aboriginal; Indigenous; chronic heart failure; chronic illness; chronic obstructive pulmonary disease; diabetes; qualitative methods; self-management
4.  Economic hardship associated with managing chronic illness: a qualitative inquiry 
Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness.
Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data.
The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses.
This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development.
PMCID: PMC2766369  PMID: 19818128
5.  Reconciling employment with caring for a husband with an advanced illness 
Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles.
A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data.
Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy.
A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.
PMCID: PMC2790453  PMID: 19939262
6.  Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study 
Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers’ familiarity with the patients’ condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a “chaos narrative” of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
PMCID: PMC3025692  PMID: 21262897
7.  Time spent on health related activities associated with chronic illness: a scoping literature review 
BMC Public Health  2012;12:1044.
The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA.
Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised.
Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved.
While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.
PMCID: PMC3533987  PMID: 23206340
Time; Time use; Health related; Chronic illness; Carer; Patient; Survey; Literature review
8.  Achieving Continuity of Care: Facilitators and Barriers in Community Mental Health Teams 
The integration of mental health and social services for people diagnosed with severe mental illness (SMI) has been a key aspect of attempts to reform mental health services in the UK and aims to minimise user and carer distress and confusion arising from service discontinuities. Community mental health teams (CMHTs) are a key component of UK policy for integrated service delivery, but implementing this policy has raised considerable organisational challenges. The aim of this study was to identify and explore facilitators and barriers perceived to influence continuity of care by health and social care professionals working in and closely associated with CMHTs.
This study employed a survey design utilising in-depth, semi-structured interviews with a proportionate, random sample of 113 health and social care professionals and representatives of voluntary organisations. Participants worked in two NHS Mental Health Trusts in greater London within eight adult CMHTs and their associated acute in-patient wards, six local general practices, and two voluntary organisations.
Team leadership, decision making, and experiences of teamwork support were facilitators for cross boundary and team continuity; face-to-face communication between teams, managers, general practitioners, and the voluntary sector were facilitators for information continuity. Relational, personal, and longitudinal continuity were facilitated in some local areas by workforce stability. Barriers for cross boundary and team continuity were specific leadership styles and models of decision making, blurred professional role boundaries, generic working, and lack of training for role development. Barriers for relational, personal, and longitudinal continuity were created by inadequate staffing levels, high caseloads, and administrative duties that could limit time spent with users. Incompatibility of information technology systems hindered information continuity. Flexible continuity was challenged by the increasingly complex needs of service users.
Substantive challenges exist in harnessing the benefits of integrated CMHT working to deliver continuity of care. Team support should be prioritised in terms of IT provision linked to a review of current models of administrative support. Investment in education and training for role development, leadership, workforce retention, and skills to meet service users' complex needs are recommended.
PMCID: PMC3073925  PMID: 21418579
9.  Patient involvement in primary care mental health: a focus group study 
Patient involvement in health care is a strong political driver in the NHS. However in spite of policy prominence, there has been only limited previous work exploring patient involvement for people with serious mental illness.
To describe the views on, potential for, and types of patient involvement in primary care from the perspectives of primary care health professionals and patients with serious mental illness.
Design of study
Qualitative study consisting of six patient, six health professional and six combined focus groups between May 2002 and January 2003.
Six primary care trusts in the West Midlands, England.
Forty-five patients with serious mental illness, 39 GPs, and eight practice nurses participated in a series of 18 focus groups. All focus groups were audiotaped and fully transcribed. Nvivo was used to manage data more effectively.
Most patients felt that only other people with lived experience of mental illness could understand what they were going through. This experience could be used to help others navigate the health- and social-care systems, give advice about medication, and offer support at times of crisis. Many patients also saw paid employment within primary care as a way of addressing issues of poverty and social exclusion. Health professionals were, however, more reluctant to see patients as partners, be it in the consultation or in service delivery.
Meaningful change in patient involvement requires commitment and belief from primary care practitioners that the views and experiences of people with serious mental illness are valid and valuable.
PMCID: PMC1839015  PMID: 16762122
consumer involvement; mental health; primary health care
10.  Decision aids for respite service choices by carers of people with dementia: development and pilot RCT 
Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options. However, they are rarely utilised to help those with chronic or age related conditions to make decisions about care services. Decision aids should also be useful for carers of people with decreased decisional capacity. These carers' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns, while relying on information from health professionals. This paper reports on a study that both developed and pilot tested a decision aid aimed at assisting carers to make evaluative judgements of community services, particularly respite care.
A mixed method sequential study, involving qualitative development and a pilot randomised controlled trial, was conducted in Tasmania, Australia. We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid. For the randomised control trial we randomly assigned 31 carers of people with dementia to either receive the service decision aid at the start or end of the study. The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid. Pilot data was collected from carers using interviewer-administered questionnaires at the commencement of the project, two weeks and 12 weeks later.
The qualitative data strongly suggest that the intervention provides carers with needed decision support. Most carers felt that the decision aid was useful. The trial data demonstrated that, using the mean change between baseline and three month follow-up, the intervention group had less increase in burden, a decrease in decisional conflict and increased knowledge compared to control group participants.
While these results must be interpreted with caution due to the small sample size, all intervention results trend in a direction that is beneficial for carers and their decisional ability. Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive. Decision aids may prove useful in a community health services context.
Trial registration number
PMCID: PMC3315425  PMID: 22429384
Decisional conflict; Decision aid; Dementia; Carer; Community services; Randomised-control trial; Qualitative
11.  What are the current barriers to effective cancer care coordination? A qualitative study 
National cancer policies identify the improvement of care coordination as a priority to improve the delivery of health services for people with cancer. Identification of the current barriers to effective cancer care coordination is needed to drive service improvement.
A qualitative study was undertaken in which semi-structured individual interviews and focus groups were conducted with those best placed to identify issues; patients who had been treated for a range of cancers and their carers as well as health professionals involved in providing cancer care. Data collection continued until saturation of concepts was reached. A grounded theory influenced approach was used to explore the participants' experiences and views of cancer care coordination.
Overall, 20 patients, four carers and 29 health professionals participated. Barriers to cancer care coordination related to six aspects of care namely, recognising health professional roles and responsibilities, implementing comprehensive multidisciplinary team meetings, transitioning of care: falling through the cracks, inadequate communication between specialist and primary care, inequitable access to health services and managing scarce resources.
This study has identified a number of barriers to coordination of cancer care. Development and evaluation of interventions based on these findings is now required.
PMCID: PMC2891740  PMID: 20482884
12.  Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory – use of the Chronic Care Model 
Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people.
This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members.
Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence – strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages – facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management – promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support – facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design – strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems – facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support.
Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.
PMCID: PMC2430955  PMID: 18505591
13.  How do informal self-care strategies evolve among patients with chronic obstructive pulmonary disease managed in primary care? A qualitative study 
There is much description in the literature of how patients with chronic obstructive pulmonary disease (COPD) manage their breathlessness and engage in self-care activities; however, little of this is from the perspective of those with less severe disease, who are primarily managed in primary care. This study aimed to understand the self-care experiences of patients with COPD who are primarily managed in primary care, and to examine the challenges of engaging in such behaviors.
Semistructured interviews were carried out with 15 patients with COPD as part of a larger project evaluating a self-management intervention. Thematic analysis was supported by NVivo software (version 8, QSR International, Melbourne, Australia).
Three main themes are described, ie, experiencing and understanding symptoms of COPD, current self-care activities, and the importance of family perceptions in managing COPD.
Self-care activities evolved spontaneously as participants experienced symptoms of COPD. However, there was a lack of awareness about whether these strategies would impact upon symptoms. Perceptions of COPD by family members posed a challenge to self-care for some participants. Health care professionals should elicit patients’ prior disease experiences and utilize spontaneous attempts at disease management in future self-management. These findings have implications for promoting self-management and enhancing quality of life.
PMCID: PMC3942113  PMID: 24600218
chronic obstructive pulmonary disease; self-care; qualitative interviews; primary care
14.  Is Europe putting theory into practice? A qualitative study of the level of self-management support in chronic care management approaches 
Self-management support is a key component of effective chronic care management, yet in practice appears to be the least implemented and most challenging. This study explores whether and how self-management support is integrated into chronic care approaches in 13 European countries. In addition, it investigates the level of and barriers to implementation of support strategies in health care practice.
We conducted a review among the 13 participating countries, based on a common data template informed by the Chronic Care Model. Key informants presented a sample of representative chronic care approaches and related self-management support strategies. The cross-country review was complemented by a Dutch case study of health professionals’ views on the implementation of self-management support in practice.
Self-management support for chronically ill patients remains relatively underdeveloped in Europe. Similarities between countries exist mostly in involved providers (nurses) and settings (primary care). Differences prevail in mode and format of support, and materials used. Support activities focus primarily on patients’ medical and behavioral management, and less on emotional management. According to Dutch providers, self-management support is not (yet) an integral part of daily practice; implementation is hampered by barriers related to, among others, funding, IT and medical culture.
Although collaborative care for chronic conditions is becoming more important in European health systems, adequate self-management support for patients with chronic disease is far from accomplished in most countries. There is a need for better understanding of how we can encourage both patients and health care providers to engage in productive interactions in daily chronic care practice, which can improve health and social outcomes.
PMCID: PMC3621080  PMID: 23530744
Chronic illness; Disease management; Self-management support; Comparative study; Qualitative research
15.  Rethinking ‘risk' and self-management for chronic illness 
Social Theory & Health  2011;10(1):78-99.
Self-management for chronic illness is a current high profile UK healthcare policy. Policy and clinical recommendations relating to chronic illnesses are framed within a language of lifestyle risk management. This article argues the enactment of risk within current UK self-management policy is intimately related to neo-liberal ideology and is geared towards population governance. The approach that dominates policy perspectives to ‘risk' management is critiqued for positioning people as rational subjects who calculate risk probabilities and act upon them. Furthermore this perspective fails to understand the lay person's construction and enactment of risk, their agenda and contextual needs when living with chronic illness. Of everyday relevance to lay people is the management of risk and uncertainty relating to social roles and obligations, the emotions involved when encountering the risk and uncertainty in chronic illness, and the challenges posed by social structural factors and social environments that have to be managed. Thus, clinical enactments of self-management policy would benefit from taking a more holistic view to patient need and seek to avoid solely communicating lifestyle risk factors to be self-managed.
PMCID: PMC3500834  PMID: 23226974
risk; self-management; policy; neo-liberalism; lay-perspective
16.  Patient, Carer and Professional Perspectives on Barriers and Facilitators to Quality Care in Advanced Heart Failure 
PLoS ONE  2014;9(3):e93288.
Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care.
Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework.
Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom.
Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms.
PMCID: PMC3968134  PMID: 24676421
17.  Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers 
PLoS ONE  2013;8(8):e70855.
People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.
Method and Main Findings
Twenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.
Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.
PMCID: PMC3741324  PMID: 23951026
18.  Does trust in health care influence the use of complementary and alternative medicine by chronically ill people? 
BMC Public Health  2006;6:188.
People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM), often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use.
The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD). Patients (≥25 years) were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis.
Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics.
Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care.
PMCID: PMC1544335  PMID: 16848897
19.  Time’s Up. Descriptive Epidemiology of Multi-Morbidity and Time Spent on Health Related Activity by Older Australians: A Time Use Survey 
PLoS ONE  2013;8(4):e59379.
Most Western health systems remain single illness orientated despite the growing prevalence of multi-morbidity. Identifying how much time people with multiple chronic conditions spend managing their health will help policy makers and health service providers make decisions about areas of patient need for support. This article presents findings from an Australian study concerning the time spent on health related activity by older adults (aged 50 years and over), most of whom had multiple chronic conditions. A recall questionnaire was developed, piloted, and adjusted. Sampling was undertaken through three bodies; the Lung Foundation Australia (COPD sub-sample), National Diabetes Services Scheme (Diabetes sub-sample) and National Seniors Australia (Seniors sub-sample). Questionnaires were mailed out during 2011 to 10,600 older adults living in Australia. 2540 survey responses were received and analysed. Descriptive analyses were completed to obtain median values for the hours spent on each activity per month. The mean number of chronic conditions was 3.7 in the COPD sub-sample, 3.4 in the Diabetes sub-sample and 2.0 in the NSA sub-sample. The study identified a clear trend of increased time use associated with increased number of chronic conditions. Median monthly time use was 5–16 hours per month overall for our three sub-samples. For respondents in the top decile with five or more chronic conditions the median time use was equivalent to two to three hours per day, and if exercise is included in the calculations, respondents spent from between five and eight hours per day: an amount similar to full-time work. Multi-morbidity imposes considerable time burdens on patients. Ageing is associated with increasing rates of multi-morbidity. Many older adults are facing high demands on their time to manage their health in the face of decreasing energy and mobility. Their time use must be considered in health service delivery and health system reform.
PMCID: PMC3613388  PMID: 23560046
20.  Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK 
Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.
Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.
Setting Community settings in London.
Participants 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.
Results Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.
Conclusions The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients’ general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals’ authority to gain patients’ agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia’s previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.
PMCID: PMC2923693  PMID: 20719843
21.  Report of the Northern California Conference for Guidelines on Aid-in-Dying: definitions, differences, convergences, conclusions. 
Western Journal of Medicine  1997;166(6):381-388.
In September 1996, the Stanford University Center for Biomedical Ethics convened a conference entitled "Comprehensive Care of the Terminally Ill: The Northern California Consensus Development Conference for Guidelines on Aid-in-Dying." The regionally based, multidisciplinary conference gathered people from a variety of disciplines and diverse perspectives on physician aid-in-dying. This report documents important points of convergence, disagreement, and uncertainty that emerged from the conference and provides commentary on crucial issues: the definition of terminal illness, ensuring adequate palliative care, psychiatric challenges, coping with family pressures, the doctor-patient relationship, the managed care context, the role of ethics committees, and institutional challenges. Should physician aid-in-dying become a legal practice in California, the report will provide guidance to health care organizations, health professionals, and public policy officials engaged in local or state guideline or policy development.
PMCID: PMC1304313  PMID: 9217449
22.  A systematic review of psychosocial interventions for family carers of palliative care patients 
BMC Palliative Care  2010;9:17.
Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration
A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.
A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.
The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.
PMCID: PMC2924287  PMID: 20687960
23.  Self-Management: Enabling and empowering patients living with cancer as a chronic illness 
With recent improvements in early detection, diagnosis and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncology's work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this paper, we review self-management interventions that enable patients and families to participate in managing their care along this continuum. We review randomized controlled trials of self-management interventions with cancer patients and families in the treatment, survivorship, and end-of-life phases of the cancer-care continuum. We also present the Chronic Care Model as a model of care that oncology practices can use to enable and empower patients and families to engage in self-management. We conclude that, the need for a common language by which to speak about self-management and a common set of self-management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually-agreed upon care plans that enable and empower patients to care for themselves in the way they prefer.
PMCID: PMC3058905  PMID: 21205833
Chronic illness; Chronic Care Model; self-management; cancer; survivorship
24.  Common elements in self-management of HIV and other chronic illnesses: an integrative framework 
AIDS care  2009;21(10):1321-1334.
HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Similar to other chronic diseases, HIV requires lifetime changes in physical health, psychological functioning, social relations, and adoption of disease-specific regimens. The shift from acute to chronic illness requires a self-management model in which patients assume an active and informed role in healthcare decision making to change behaviors and social relations to optimize health and proactively address predictable challenges of chronic diseases generally and HIV specifically. This article reviews literature on chronic disease self-management to identify factors common across chronic diseases, highlight HIV-specific challenges, and review recent developments in self-management interventions for people living with HIV (PLH) and other chronic diseases. An integrated framework of common elements or tasks in chronic disease self-management is presented that outlines 14 elements in three broad categories: physical health; psychological functioning; and social relationships. Common elements for physical health include: a framework for understanding illness and wellness; health promoting behaviors; treatment adherence; self-monitoring of physical status; accessing appropriate treatment and services; and preventing transmission. Elements related to psychological functioning include: self-efficacy and empowerment; cognitive skills; reducing negative emotional states; and managing identity shifts. Social relationship elements include: collaborative relationships with healthcare providers; social support; disclosure and stigma management; and positive social and family relationships. There is a global need to scale up chronic disease self-management services, including for HIV, but there are significant challenges related to healthcare system and provider capacities, and stigma is a significant barrier to HIV-identified service utilization. Recognizing that self-management of HIV has more in common with all chronic diseases than differences suggests that the design and delivery of HIV support services can be incorporated into combined or integrated prevention and wellness services.
PMCID: PMC2881847  PMID: 20024709
AIDS; HIV; chronic illness; chronic care model; common elements; self-management
25.  Is chronic pelvic pain a comfortable diagnosis for primary care practitioners: a qualitative study 
BMC Family Practice  2010;11:7.
Chronic pelvic pain (CPP) has a prevalence similar to asthma and chronic back pain, but little is known about how general practitioners (GPs) and practice nurses manage women with this problem. A clearer understanding of current management is necessary to develop appropriate strategies, in keeping with current health care policy, for the supported self-management of patients with long term conditions. The aim of this study was to explore GPs' and practice nurses' understanding and perspectives on the management of chronic pelvic pain.
Data were collected using semi-structured interviews with a purposive sample of 21 GPs and 20 practice nurses, in three primary care trusts in the North West of England. Data were analysed using the principles of Framework analysis.
Analysis suggests that women who present with CPP pose a challenge to GPs and practice nurses. CPP is not necessarily recognized as a diagnostic label and making the diagnosis was achieved only by exclusion. This contrasts with the relative acceptability of labels such as irritable bowel syndrome (IBS). GPs expressed elements of therapeutic nihilism about the condition. Despite practice nurses taking on increasing responsibilities for the management of patients with long term conditions, respondents did not feel that CPP was an area that they were comfortable in managing.
The study demonstrates an educational/training need for both GPs and practice nurses. GPs described a number of skills and clinical competencies which could be harnessed to develop a more targeted management strategy. There is potential to develop facilitated self- management for use in this patient group, given that this approach has been successful in patients with similar conditions such as IBS.
PMCID: PMC2835666  PMID: 20105323

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