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1.  What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care 
BMC Family Practice  2013;14:22.
Background
Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers.
Methods
In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer. They were recruited from general practices and hospice day care, when the responsible health professional answered no to the question, of whether they would be surprised if the patient died within twelve months. Twenty participants lived alone. Interviews were recorded and transcribed and the data analysed using a Framework approach, focussing on the differences and commonalities between the two groups.
Results
Many experiences were common to all participants, but had broader consequences for people who lived alone. Five themes are presented from the data: a perception that it is a disadvantage to live alone as a patient, the importance of relational continuity with health professionals, informal appraisal of care, place of care and future plans. People who lived alone perceived emotional and practical barriers to accessing care, and many shared an anxiety that they would have to move into a care home. Participants were concerned with remaining life, and all who lived alone had made plans for death but not for dying. Uncertainty of timescales and a desire to wait until they knew that death was imminent were some of the reasons given for not planning for future care needs.
Conclusions
Older people who live alone with cancer have emotional and practical concerns that are overlooked by their professional carers. Discussion and planning for the future, along with continuity in primary care may hold the key to enhancing end-of-life care for this group of patients.
doi:10.1186/1471-2296-14-22
PMCID: PMC3640927  PMID: 23425223
Living arrangements; Aged; Aged, 80 and over; Health services for the aged; Neoplasms; Palliative care; Terminal care; Advanced care planning
2.  A comparison of strategies to recruit older patients and carers to end-of-life research in primary care 
Background
Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care.
Methods
Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers’ perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life.
Results
33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers.
Conclusion
Obtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment.
doi:10.1186/1472-6963-12-342
PMCID: PMC3519499  PMID: 23016796
Patient selection; Primary health care; Caregivers; Palliative care; Aged; Recruitment to research; End-of-life care research; Research in primary care
3.  Funding health and social services for older people – a qualitative study of care recipients in the last year of life 
Objectives
This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure.
Design
Qualitative interview study
Setting
North West England
Participants
30 people aged 69–93 years, diagnosed with lung cancer, heart failure or stroke and judged by health professionals to be in their last year of life. Sixteen participants lived in disadvantaged areas.
Main outcome measures
Views of older adults on funding of services.
Results
Participants expressed a belief in an earned entitlement to services funded from taxation, based on a broad sense of being a good citizen. Irrespective of social background, older people felt that those who could afford to pay for social care, should do so. Sale of assets and use of children's inheritance to fund care was widely perceived as an injustice. The costs of living with illness are a burden, and families are filling many of the gaps left by welfare provision. People who had worked in low-wage occupations were most concerned to justify their current acceptance of services, and distance themselves from what they described as welfare ‘spongers’ or ‘layabouts.’
Conclusions
There is a gap between the health and social care system that older adults expect and what may be provided by a reformed welfare state at a time of financial stringencies. The values that underpinned the views expressed – mutuality, care for the most needy, and the importance of working to contribute to society – are an important contribution to the debate on welfare funding.
doi:10.1258/jrsm.2012.110189
PMCID: PMC3360529  PMID: 22537882
5.  Leaders, leadership and future primary care clinical research 
BMC Family Practice  2008;9:52.
Background
A strong and self confident primary care workforce can deliver the highest quality care and outcomes equitably and cost effectively. To meet the increasing demands being made of it, primary care needs its own thriving research culture and knowledge base.
Methods
Review of recent developments supporting primary care clinical research.
Results
Primary care research has benefited from a small group of passionate leaders and significant investment in recent decades in some countries. Emerging from this has been innovation in research design and focus, although less is known of the effect on research output.
Conclusion
Primary care research is now well placed to lead a broad re-vitalisation of academic medicine, answering questions of relevance to practitioners, patients, communities and Government. Key areas for future primary care research leaders to focus on include exposing undergraduates early to primary care research, integrating this early exposure with doctoral and postdoctoral research career support, further expanding cross disciplinary approaches, and developing useful measures of output for future primary care research investment.
doi:10.1186/1471-2296-9-52
PMCID: PMC2565662  PMID: 18822178
6.  Doctors' perceptions of palliative care for heart failure: focus group study 
BMJ : British Medical Journal  2002;325(7364):581-585.
Objectives
To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change.
Design
Qualitative study with focus groups.
Setting
North west England.
Participants
General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine.
Results
Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure.
Conclusions
Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients.
What is already known on this topicPatients with heart failure have unmet needs for health care at the end of lifeSpecialist palliative care services see few patients with heart failureThe national service framework for coronary heart disease endorses the provision of palliative care for heart failureLittle evidence exists on how this care should be provided, and doctors' views are not knownWhat this study addsBarriers to adopting a palliative care approach in heart failure care relate to the current organisation of health services, the difficulties of prognostication, and doctors' understanding of roles and responsibilitiesDoctors believe that the general practitioner should be the central figure in palliative care for heart failure, supported by specialistsDoctors' future priorities are developing the role of nurses, increasing essential community services, such as district nursing, and improving communication with colleagues
PMCID: PMC124557  PMID: 12228136
7.  Coping with winter bed crises  
BMJ : British Medical Journal  1999;319(7224):1511-1512.
PMCID: PMC1117242  PMID: 10591690

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