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ABSTRACT: Background:Dementia is a life limiting illness and is becoming a major cause of death in developed countries. Many people with dementia die in nursing homes or long-term residential care settings. Spouse caregivers of people with dementia living in nursing homes find themselves in a position which is difficult to understand and live with.Aim:To explore the caregiving experiences of spouse carers of people with advanced dementia living in nursing homes.Design:Longitudinal narrative study using three sequential interviews and diary accounts.Setting/participants:Spouse caregivers of people with dementia nearing the end of life were recruited from two nursing homes in Northern England.Results:Twenty-seven interviews were conducted and seven diaries collected from 10 spouse caregivers (7 women and 3 men).We demonstrate that for this group the experience of caregiving is one of struggle to live in 'two worlds', the world of the nursing home and the world of wider society, where, in both settings, their role is often ambiguous and their position liminal. We also identify that feelings of guilt associated with nursing home placement of a spouse with dementia endure far beyond the time of the move.Conclusions:Nursing home staff need to acknowledge spouse carers in their own right, inviting them to tell their stories. We recommend that communication skills be included in educational programmes for nursing home staff. Further research is needed to determine the shape and context of carer needs assessment and support, as recommended in health policy.
Palliative Medicine 03/2013; · 2.38 Impact Factor
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ABSTRACT: 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.
BMC Family Practice 02/2013; 14(1):22. · 1.80 Impact Factor
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ABSTRACT: BACKGROUND: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study.Methods/designA cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. DISCUSSION: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.
BMC Palliative Care 11/2012; 11(1):23. · 1.12 Impact Factor
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ABSTRACT: BACKGROUND: Palliative care should be integrated early into the care trajectories of people with life threatening illness such as stroke. However published guidance focuses primarily on the end of life, and there is a gap in the evidence about how the palliative care needs of acute stroke patients and families should be addressed. Synthesising data across a programme of related studies, this paper presents an explanatory framework for the integration of palliative and acute stroke care. METHODS: Data from a survey (n=191) of patient-reported palliative care needs and interviews (n=53) exploring experiences with patients and family members were explored in group interviews with 29 staff from 3 United Kingdom stroke services. A realist approach to theory building was used, constructed around the mechanisms that characterise integration, their impacts, and mediating, contextual influences. RESULTS: The framework includes two cognitive mechanisms (the legitimacy of palliative care and individual capacity), and behavioural mechanisms (engaging with family; the timing of intervention; working with complexity; and the recognition of dying) through which staff integrate palliative and stroke care. A range of clinical (whether patients are being 'actively treated', and prognostic uncertainty) and service (leadership, specialty status and neurological focus) factors appear to influence how palliative care needs are attended to. CONCLUSIONS: Our framework is the first, empirical explanation of the integration of palliative and acute stroke care. The specification in the framework of factors that mediate integration can inform service development to improve the outcomes and experiences of patients and families.
BMC Palliative Care 11/2012; 11(1):22. · 1.12 Impact Factor
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ABSTRACT: 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. 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.
BMC Health Services Research 09/2012; 12(1):342. · 1.66 Impact Factor
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ABSTRACT: We report patients, family members and health professionals' experiences of Chronic Obstructive Pulmonary Disease (COPD) in Barnsley, northern England. A widespread belief that having "bad lungs" is part of normal ageing shapes everyday experience in this former mining town. People with COPD, and their families, link its cause to the areas industrial past and are sceptical of a medical orthodoxy that attributes cause to smoking. They doubt doctors' objectivity. Encouraging uptake of care, promoting smoking cessation, and developing care planning would be enhanced by engaging with the significance of place in the social narrative of health evident in this town.
Health & Place 08/2012; · 2.67 Impact Factor
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ABSTRACT: CONTEXT: The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. OBJECTIVES: To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. METHODS: A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. RESULTS: Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. CONCLUSION: Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy.
Journal of pain and symptom management 07/2012; · 2.42 Impact Factor
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ABSTRACT: Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K.
To explore older adults' experiences as they move between places of care at the end of life.
In-depth qualitative interviews and thematic analysis of the data were performed. Thirty adults aged between 69 and 93 years took part. All were judged by their physicians to be in the last year of life, diagnosed with heart failure (13), lung cancer (14), and stroke (3). Sixteen participants were from the lowest socioeconomic groups.
Four themes were identified from the data relating to 1) the prioritization of institutional processes, 2) support across settings, 3) being heard, and 4) dignity. As they moved between different settings, much of the care received by older adults was characterized by inflexibility and a failure of professional carers to listen. Liaison between and within services was not always effective, and community support after a hospital admission was perceived to be, on occasions, absent, inappropriate, or excessive.
Qualitative study of transitions provides valuable insights into end-of-life care, even in countries where there are few financial barriers to services. This study has highlighted a need for continued attention to basic aspects of care and communication between professionals and with patients.
Journal of pain and symptom management 05/2012; 44(1):74-83. · 2.42 Impact Factor
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ABSTRACT: 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.
Qualitative interview study.
North West England.
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.
Views of older adults on funding of services.
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.'
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.
Journal of the Royal Society of Medicine 04/2012; 105(5):201-7. · 1.41 Impact Factor
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ABSTRACT: BACKGROUND: Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. AIM: This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. DESIGN: Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. SETTING: Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. PARTICIPANTS: Participants were 27 older adults living with heart failure (n=13) or lung cancer (n=14), aged 69-89 years (mean 79±4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. FINDINGS: For community-dwelling older adults, family carers are conceptualised as 'conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of 'second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. CONCLUSIONS: Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.
International journal of nursing studies 02/2012; · 1.91 Impact Factor
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ABSTRACT: Background Humour is a complex, dynamic phenomenon that mainly occurs in social situations between two or more people. Most humour research reviews rehearsed as opposed to spontaneous humour and rarely review the patients' perspective. Aim We explore patients' perspectives on the use of humour in health care. We discuss the asymmetrical and divergent humour use between patients and clinical nurse specialists and posit nurses' approaches to risk as a contributing factor. Design A constructivist grounded theory collated researcher-provoked (interviews, observation, field notes, pre-and post-interaction audio diaries) and non-researcher-provoked data (naturally occurring interactions) over 18 months. This paper is based upon four patient focus groups. A constant comparison approach to data collection and analyses was applied using interpretative and illustrative frameworks that balanced what was 'known' and 'unknown' about humour. Setting and participants Patients were recruited from four patient-peer groups. Three audio-taped (n = 20) and one observed focus group interactions (n = 12) were undertaken at the groups' regular meeting places. Results Patients hold a broad appreciation of humour and recognize it as being evident in subtle and nuanced forms. Patients wish health-care staff to initiate and reciprocate humour. Conclusion A chasm exists between what patients apparently want with regard to humour use in health-care interactions and what actually transpires. Initiating humour involves risk, and risk-taking requires a degree of self-esteem and confidence. Nurses are, arguably, risk-averse and have low self-esteem. Future research could review confidence and self-esteem markers with observed humour use in nurses and their interactions across a range of specialities.
Health expectations: an international journal of public participation in health care and health policy 01/2012; · 1.80 Impact Factor
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ABSTRACT: An emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life.
To explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment.
A qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory.
One multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008.
Interviews took place with 25 patients with lung cancer and 19 family members.
Qualitative constructivist grounded theory study.
The study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory 'maintaining integrity in the face of death' is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as 'normal' to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one's own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death.
The study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the 'social' rather than just the physical or 'medicalised' aspects of death.
International journal of nursing studies 12/2011; 49(6):718-26. · 1.91 Impact Factor
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ABSTRACT: Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches.
Health & Social Care in the Community 08/2011; 20(2):145-54. · 0.86 Impact Factor
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ABSTRACT: The aim of this study was to explore key stakeholders and direct care managers' perspectives on the current provision of end-of-life care for older people in acute and long-stay care settings in Ireland and to construct a model of these.
Although the literature reveals a number of factors that impact on end-of-life care, no study has examined staff perceptions concerning the provision of good end-of-life care for older people in an Irish context.
Grounded theory was used. Semi-structured interviews were employed to collect data between 2007-2008.
A purposive sample of 33 staff involved in the delivery of end-of-life care to older people working in six sites were selected.
Factors that influence provision of end-of-life care in Ireland were identified. The core category was 'dying well'. The potential to 'die well' was influenced by three factors, namely philosophy, culture and organisation of care, knowing the person and physical environment and resources.
People are living longer consequently acute and long-stay care setting will increasingly become places where older people die. This study identified the factors that influence the provision of good end-of-life care for older people. Mobilising resources to ensure that these factors are considered is crucial to ensuring that regardless of where older people die in Ireland, they will receive the highest standard of care that nurses can provide.
Understanding the factors that influence the provision of end-of-life care in acute and long-stay facilities in Ireland can help health professionals give more focused support and ensure that influencing factors are addressed so that older people at end-of-life receive quality end-of-life care.
Journal of Clinical Nursing 07/2011; 20(13-14):1824-33. · 1.12 Impact Factor
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ABSTRACT: To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community.
In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme.
The wider evaluation used a formative evaluation methodology.
This paper draws on in-depth interviews with a range of stakeholders (n = 17), in-depth interviews with bereaved carers (n = 6) and an analysis of documentation.
Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans.
Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care.
The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers.
Journal of Clinical Nursing 02/2011; 20(13-14):2043-52. · 1.12 Impact Factor
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ABSTRACT: This study aimed to evaluate health professionals' views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice.
Palliative Medicine 01/2011; 25(4):370-7. · 2.38 Impact Factor
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ABSTRACT: There is increasing recognition of the importance of good communication between healthcare professionals and patients facing cancer or end of life. In England, a new national 3-day training programme called 'Connected' has been developed and is now mandatory for all cancer and palliative care professionals. This study aimed to explore the attitudes of staff in one region to undertaking this training.
A survey questionnaire was developed through a series of discussions with experts and semi-structured interviews with five healthcare professionals. The questionnaire was distributed to 200 cancer and palliative care staff; 109 were completed and returned.
There were significant differences between doctors' and nurses' attitudes to communication skills training, with doctors demonstrating more negative attitudes. More nurses than doctors felt that communication skills training should be mandatory for cancer and palliative care professionals (p ≤ 0.001), whilst more doctors felt that these staff should already be skilled communicators and not require further training (p ≤ 0.001). Nurses also self-rated their communication skills more highly than doctors.
The current 'one size fits all' approach being taken nationally to advanced communication skills training does not meet the training preferences of all healthcare professionals, and it is recommended that tailoring courses to individuals' needs should be considered.
European journal of oncology nursing: the official journal of European Oncology Nursing Society 12/2010; 15(5):398-403. · 1.13 Impact Factor
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ABSTRACT: The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families.
International journal of palliative nursing 10/2010; 16(10):505-10.
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ABSTRACT: despite a mortality rate of approximately 30% in acute stroke, little is known about the palliative care needs of this group of patients.
prospective study of 191 acute stroke patients admitted to hospital in England. Biographical, medical and stroke-related data were collected. Participants completed the Sheffield Profile for Assessment and Referral to Care (SPARC), a screening tool for referral to specialist palliative care.
over 50% reported moderate to significant fatigue-related problems. Approximately 50% reported symptom-related problems (e.g. pain) or psychological distress (e.g. anxiety). Approximately 25% had concerns about death or dying, and 66% had concerns about dependence and disability. Over 50% were worried about the impact of stroke on family members. There were significant main effects of dependence (Barthel Index) (F(1,123) = 12.640 P = 0.001) and age (F(4,123) = 3.022 P = 0.020), and a significant three-factor interaction between dependence, age and co-morbidities (F(9,123) = 2.199 P = 0.026) in predicting total SPARC scores.
acute stroke patients have a high prevalence of palliative care needs. Acute stroke services should use the SPARC for needs assessment. Priority for assessment should be given to patients with a score of <15/20 on the Barthel Index, a tool already used in most stroke services.
Age and Ageing 09/2010; 39(5):554-9. · 3.09 Impact Factor
