Cancer Experiences
Collaborative

CECo "Paper of the Month"

March 2012

Reeve J, Lynch T, Lloyd-Williams M, Payne S (2012) From personal challenge to technical fix: the risks of depersonalised care Health and Social Care in the Community, 20(2) pp. 145-154.

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.

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December 2011

Farquhar MC, Ewing G, Booth S (2011) Using mixed methods to develop and evaluate complex interventions in palliative care research Palliative Medicine, 25(8) pp. 748-757.

Background: there is increasing interest in combining qualitative and quantitative research methods to provide comprehensiveness and greater knowledge yield. Mixed methods are valuable in the development and evaluation of complex interventions. They are therefore particularly valuable in palliative care research where the majority of interventions are complex, and the identification of outcomes particularly challenging.

Aims: this paper aims to introduce the role of mixed methods in the development and evaluation of complex interventions in palliative care, and how they may be used in palliative care research.

Content: the paper defines mixed methods and outlines why and how mixed methods are used to develop and evaluate complex interventions, with a pragmatic focus on design and data collection issues and data analysis. Useful texts are signposted and illustrative examples provided of mixed method studies in palliative care, including a detailed worked example of the development and evaluation of a complex intervention in palliative care for breathlessness. Key challenges to conducting mixed methods in palliative care research are identified in relation to data collection, data integration in analysis, costs and dissemination and how these might be addressed.

Conclusions: the development and evaluation of complex interventions in palliative care benefit from the application of mixed methods. Mixed methods enable better understanding of whether and how an intervention works (or does not work) and inform the design of subsequent studies. However, they can be challenging: mixed method studies in palliative care will benefit from working with agreed protocols, multidisciplinary teams and engaging staff with appropriate skill sets.

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December 2011

Walshe C (2011) The evaluation of complex interventions in palliative care: An exploration of the potential of case study research strategies Palliative Medicine, 25(8) pp. 774-781.

Background: Complex, incrementally changing, context dependent and variable palliative care services are difficult to evaluate. Case study research strategies may have potential to contribute to evaluating such complex interventions, and to develop this field of evaluation research.

Aim: This paper explores definitions of case study (as a unit of study, a process, and a product) and examines the features of case study research strategies which are thought to confer benefits for the evaluation of complex interventions in palliative care settings.

Results: Ten features of case study that are thought to be beneficial in evaluating complex interventions in palliative care are discussed, drawing from exemplars of research in this field. Important features are related to a longitudinal approach, triangulation, purposive instance selection, comprehensive approach, multiple data sources, flexibility, concurrent data collection and analysis, search for proving-disproving evidence, pattern matching techniques and an engaging narrative. The limitations of case study approaches are discussed including the potential for subjectivity and their complex, time consuming and potentially expensive nature.

Conclusions: Case study research strategies have great potential in evaluating complex interventions in palliative care settings. Three key features need to be exploited to develop this field: case selection, longitudinal designs, and the use of rival hypotheses. In particular, case study should be used in situations where there is interplay and interdependency between the intervention and its context, such that it is difficult to define or find relevant comparisons.

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December 2011

Froggatt K, Hockley J (2011) Action research in palliative care: Defining an evaluation methodology Palliative Medicine, 25(8) pp. 782-787.

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted.

Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology.

Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined.

Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before–after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults.

Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research.

Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken.

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March 2011

Seymour JE, Kumar A, Froggatt (2011) Do nursing homes for older people have the support they need to provide end- of-life care? A mixed methods enquiry in England Palliative Medicine, 25(2) pp. 125-138.

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools.

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June 2011

Sheila Payne, Jane Seymour, Alex Molassiotis, Katherine Froggatt, Gunn Grande, Mari Lloyd-Williams, Claire Foster, Roger Wilson, Liz Rolls, Chris Todd, Julia Addington-Hall (2011) Benefits and challenges of collaborative research: lessons from supportive and palliative care BMJ Supportive and Palliative Care, 1(1) pp. 5-11.

Objective
To describe the processes of establishing and running the Cancer Experiences Collaborative (CECo), and reflect upon the benefits and challenges of undertaking collaborative research in supportive and palliative care.

Design
A descriptive analysis of a 5-year research collaborative initiated in 2006.

Setting
Research groups at the Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton, England.

Participants
26 UK organisations including the four largest hospices in England, hospital cancer centres, Help the Hospices (a national charity supporting independent hospices) and user representatives.

Findings
The aim of CECo was to enhance the value, quality and productivity of scientific research in supportive and palliative care, and to increase research capacity and improve the coordination of collaborative research. Three programmatic themes of research were established: (i) innovative approaches to complex symptoms, (ii) planning for the care of older adults towards the end of life and (iii) research methodology including narrative approaches. Four benefits and challenges are highlighted: strategic leadership and management structures for cross-institutional work, working in multidisciplinary groups and linking research with practice settings, capacity building, and user involvement.

Conclusions
The activities of CECo have resulted in significant benefits with an increase in good quality research studies that have led to the production of a significant number of peer-reviewed papers, and learning between academics, clinicians and users, which has contributed to raising the standards of supportive and palliative care research. However, the future of such research initiatives is fragile, with concerns about the sustainability of collaboration in the face of diminishing resources.

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February 2011

Wood, M. J. M., Molassiotis, A. and Payne, S. (2011) What research evidence is there for the use of art therapy in the management of symptoms in adults with cancer? A systematic review Psycho-Oncology, 20(2) pp. 135-145.

Objective: Common psychosocial difficulties experienced by cancer patients are fatigue, depression, anxiety, and existential and relational concerns. Art therapy is one intervention being developed to address these difficulties. The purpose of this research was to assess and synthesize the available research evidence for the use of art therapy in the management of symptoms in adults with cancer.
Methods: A literature search of electronic databases, ‘grey’ literature, hand searching of key journals, and personal contacts was undertaken. Keywords searched were ‘art therapy’ and ‘cancer’ or ‘neoplasm’. The inclusion criteria were: research studies of any design; adult cancer population; and art therapy intervention. There were no language or date restrictions. Data extraction occurred and quality appraisal was undertaken. Data were analyzed using narrative synthesis.
Results: Fourteen papers reporting 12 studies met the inclusion criteria. Symptoms investigated spanned emotional, physical, social and global functioning, and existential/spiritual concerns. Measures used were questionnaires, in-depth interviews, patients' artwork, therapists' narratives of sessions, and stress markers in salivary samples. No overall effect size was determined owing to heterogeneity of studies. Narrative synthesis of the studies shows art therapy is used at all stages of the cancer trajectory, most frequently by women, the most common cancer site in participants being breast.
Conclusion: Art therapy is a psychotherapeutic approach that is being used by adults with cancer to manage a spectrum of treatment-related symptoms and facilitate the process of psychological readjustment to the loss, change, and uncertainty characteristic of cancer survivorship. Research in this area is still in its infancy.

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November 2010

Froggatt K, Hockley J, Parker D, Brazil K (2010) A system lifeworld perspective on dying in long term care settings for older people: Contested states in contested places Health & Place (Online)

In many Western countries, older people live and die in long-term institutional care settings. Habermas's concepts of lifeworld, system and communicative action are drawn upon to illuminate the experience of living and dying in this particular place. It is proposed that dying older adults, their family and care staff occupy different contested states and long term care settings are contested places, located in a wider system. This wider system, mediated through care homes, can colonise the life world experiences of dying individuals. The development of communicative space bridges the lifeworld and system and offers a way for the lifeworld of dying individuals, and those around them to be reintegrated into, and influence the wider system.

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October 2010

Rolls L, Seymour JE, Froggatt KA, Hanratty B (2010) Older people living alone at the end of life in the UK: research and policy challenges Palliative Medicine

Older people who live alone face particular challenges if they are to age and die well in the place and manner of their choosing. This discussion paper examines the experiences and needs of older people living alone towards the end of life. The paper focuses on the UK, given recent policy and service development initiatives there which emphasize home as a place of support and care; the promotion of independence; ensuring choice and decision making; and equity. These initiatives do not acknowledge diversity in the older population and make little provision to meet the specific needs that older people living alone may have as they approach the end of life. We identify three broader social factors that influence whether older people who live alone can remain at home until the end of their lives. The first factor is the physical environment; the second concerns their material environment; and the third relates to their social environment and their access to informal and formal care services. In future, palliative care research of relevance to older people should consider living arrangements as an important variable and be cognisant of the way in which wider social issues constrain the quality of end-of-life care that those living alone in older age receive.

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September 2010

Stajduhar KI, Funk L, Toye C, Grande GE, Aoun S, Todd CJ (2010) Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008) Palliative Medicine, 24(6) pp. 573-593.

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.

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September 2010

Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ (2010) Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008) Palliative Medicine, 24(6) pp. 594-607.

Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998—2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life.

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July 2010

C. Stevinson, N. Preston, C. Todd and Cancer Experiences Collaborative (CECo) (2010) Defining priorities in prognostication research: results of a consensus workshop Palliative Medicine, 24(5) pp. 462-468.

Purpose: To establish consensus among palliative care researchers on the priorities for prognostication research.
Methods: A nominal group technique was employed involving palliative care researchers attending a workshop within a scientific meeting on prognostication. Participants worked in small facilitated groups to generate future research questions which were amalgamated and rated according to importance.
Results: Twenty-five meeting delegates took part in the workshop including 10 palliative care physicians and four nurses,one dietician, and 10 academic researchers, all of whom had experience and/or interest in prognosis research. A total of 40 research questions were generated and after prioritization ratings, the top five questions were: (1) How valid are prognostic tools? (2) Can we use prognostic criteria as entry criteria for research? (3) How do we judge the impact of a prognostic score in clinical practice? (4) What is the best way of presenting survival data to patients? (5) What is the most user-friendly validated tool?
Conclusions: Although a wide range of research questions relating to prognostication were identified, the strongest priority to emerge from the consensus data concerned the validity of prognostic tools. Further research to validate existing tools is essential to ensure their clinical value.

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July 2010

Clark D, Clark J, Greenwood A (2010) The place of supportive, palliative and end-of-life care research in the United Kingdom Research Assessment Exercise, 2001 and 2008 Palliative Medicine, 24(5) pp. 533-543.

We report on a study of the place of research on supportive, palliative and end-of-life care within the United Kingdom Research Assessment Exercise of 2001 and 2008. Sixty-seven Higher Education Institutions in 2001 and 66 in 2008 contributed work to the Research Assessment Exercise relevant to supportive, palliative and end-of-life care. This comprised 16 subject areas in 2001 and 25 in 2008, and was generated by 178 authors in 2001 and 176 authors in 2008. Seven 'high-intensity groups' of concentrated research activity were identified in 2001, and eight such groups in 2008. Between the years little growth occurred in contributions to the Research Assessment Exercise relating to supportive, palliative and end-of-life care, and the 'high-intensity groups' remain relatively fragile. With one exception, there is no concentration of effort in clinical studies relating to the medical aspects of supportive, palliative and end-of-life care. By 2008 there were still less than 40 university academics in the UK with major commitments to research in supportive, palliative and end-of-life care, as measured by their Research Assessment Exercise participation.

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May 2010

Hennings J, Froggatt K, Keady J (2010) Approaching the end of life and dying with dementia in care homes: the accounts of family carers Reviews in Clinical Gerontology

Research into end of life and dying with dementia in care homes from the family carer’s perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more ppropriate approach. This requires ongoing communication between the person with dementia, family members and rofessionals from the early stages of the condition.

April 2010

Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences BMC Palliative Care, 9(4) pp. 1-9.

Background: Advance care planning (ACP) is a process of discussion about goals of care and a means of setting on record preferences for care of patients who may lose capacity or communication ability in the future. Implementation of ACP is widely promoted by policy makers. This study examined how community palliative care nurses in England understand ACP and their roles within ACP. It sought to identify factors surrounding community nurses’ implementation of ACP and nurses’ educational needs.
Methods: An action research strategy was employed. 23 community nurses from two cancer networks in England were recruited to 6 focus group discussions and three follow up workshops. Data were analysed using a constant comparison approach.
Findings: Nurses understood ACP to be an important part of practice and to have the potential to be a celebration of good nursing care. Nurses saw their roles in ACP as engaging with patients to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care. They perceived challenges to ACP including: timing, how to effect team working in ACP, the policy focus on instructional directives which related poorly to patients’ concerns; managing differences in patients’ and families’ views. Perceived barriers included: lack of resources; lack of public awareness about ACP; difficulties in talking about death. Nurses recommended the following to be included in education programmes: design of realistic scenarios; design of a flow chart; practical advice about communication and documentation; insights into the need for clinical supervision for ACP practice.
Conclusions: Nurses working in the community are centrally involved with patients with palliative care needs who may wish to set on record their views about future care and treatment. This study reveals some important areas for practice and educational development to enhance nurses’ use and understanding of ACP.

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April 2010

Rigby J, Payne S, Froggatt K (2010) Review: What evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review Palliative Medicine, 24(3) pp. 268-285.

Relatively little is known about the type of physical environment which is needed and preferred by patients aged 65 and over, with a prognosis of 1 year or less, who are receiving care in hospitals, care homes and hospices, and their families and staff. A narrative literature review was conducted to identify and analyse evidence on this issue, with twenty-nine papers meeting the inclusion criteria. The patients were found to have a wide range of views on their environment, but there was some variation between the views of patients and those of their families and staff. Four main themes emerged: the physical environment should be ‘homely’; it should support patients’ need for social interaction and privacy; it should support the caring activities of staff, family members and patients; and it should allow opportunities for spiritual expression. It is evident that the physical environment contributes significantly to the quality of life of older people with a life-limiting illness, and there is a need for more research in this area. Regular assessment of patients’ environmental needs should form part of care planning.

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March 2010

Addicott R, Ashton R (Eds) (2010) Delivering better care at end of life: The next steps The King's Fund

The government’s End of Life Care Strategy set out to improve the care that patients receive at the end of their life and to give them meaningful choice about where they are cared for and where they die. Implementation of the strategy has proved challenging, however, for a number of reasons: death and dying remain taboo subjects; the number of people dying is rising, putting extra pressure on end-of-life care services; budgets are likely to be limited in the coming years.

To help those who have responsibility for implementing the strategy, The King’s Fund organised the Sir Roger Bannister Summit at Leeds Castle in November 2009 at which senior policy-makers, clinicians, managers, officials and academics could share the challenges and suggest practical solutions.

Delivering better care at end of life: the next steps includes papers given at the summit – covering issues including commissioning, hospice and hospital care, quality markers, challenges for providers – and an account of the debate generated. It identified 10 critical actions to help the successful implementation of the strategy. It should be invaluable for those seeking to improve the quality of the care offered to patients at the end of life.

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December 2009

Alex Molassiotis, Sarah Brearley, Mark Saunders, Olive Craven, Andrew Wardley, Carole Farrell, Ric Swindell, Chris Todd, and Karen Luker (2009) Effectiveness of a Home Care Nursing Program in the Symptom Management of Patients With Colorectal and Breast Cancer Receiving Oral Chemotherapy: A Randomized, Controlled Trial Journal of Clinical Oncology, 27(36) pp. 6191-6198.

Purpose: To assess the effectiveness of a symptom-focused home care program in patients with cancer who were receiving oral chemotherapy in relation to toxicity levels, anxiety, depression, quality of life, and service utilization.

Patients and Methods: A randomized, controlled trial was carried out with 164 patients with a diagnosis of colorectal (n = 110) and breast (n = 54) cancers who were receiving oral capecitabine. Patients were randomly assigned to receive either a home care program by a nurse or standard care for 18 weeks (ie, six cycles of chemotherapy). Toxicity assessments were carried out weekly for the duration of the patients' participation in the trial, and validated self-report tools assessed anxiety, depression, and quality of life.

Results: Significant improvements were observed in the home care group in relation to the symptoms of oral mucositis, diarrhea, constipation, nausea, pain, fatigue (first four cycles), and insomnia (all P < .05). This improvement was most significant during the initial two cycles. Unplanned service utilization, particularly the number of inpatient days (57 v 167 days; P = .02), also was lower in the home care group.

Conclusion: A symptom-focused home care program was able to assist patients to manage their treatment adverse effects more effectively than standard care. It is imperative that patients receiving oral chemotherapy are supported with such programs, particularly during initial treatment cycles, to improve their treatment and symptom experiences.

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July 2009

M Gott, C Gardiner, N Small, S Payne, D Seamark, S Barnes, D Halpin, and C Ruse (2009) Barriers to advance care planning in chronic obstructive pulmonary disease Palliative Medicine, 23(7) pp. 642-648.

The English End of Life Care Strategy promises that all patients with advanced, life limiting illness will have the opportunity to participate in Advance Care Planning (ACP). For patients with Chronic Obstructive Pulmonary Disease (COPD), the barriers to this being achieved in practice are under-explored. Five focus groups were held with a total of 39 health care professionals involved in the care of patients with COPD. Participants reported that discussions relating to ACP are very rarely initiated with patients with COPD and identified the following barriers: inadequate information provision about the likely course of COPD at diagnosis; lack of consensus regarding who should initiate ACP and in which setting; connotations of comparing COPD with cancer; ACP discussions conflicting with goals of chronic disease management; and a lack of understanding of the meaning of ‘end of life’ within the context of COPD. The findings from this study indicate that, for patients with COPD, significant service improvement is needed before the objective of the End of Life Care Strategy regarding patient participation in end of life decision-making is to be achieved. Whilst the findings support the Strategy's recommendations regarding an urgent for both professional education and increased public education about end of life issues, they also indicate that these alone will not be enough to effect the level of change required. Consideration also needs to be given to the integration of chronic disease management and end of life care and to developing definitions of end of life care that fit with concepts of ‘continuous palliation’.

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July 2009

Small N, Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S (2009) Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK BMC Palliative Care, 8 pp. 6.

This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods:
Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Results:
Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling.

Discussion:
Our findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.

This is an "Open Access" article and can be downloaded in full from the link below, with acknowledgement to BioMed Central.

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June 2009

Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C (2009) Supporting lay carers in end of life care: current gaps and future priorities Palliative Medicine, 23(4) pp. 339-344.

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

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May 2009

Thomas C, Reeve J, Bingley A, Brown J, Payne S, Lynch T (2009) Narrative Research Methods in Palliative Care Contexts: Two Case Studies Journal of Pain and Symptom Management, 37(5) pp. 788-796.

Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed. The authors’ contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals’ perceived illness states and symptoms, care-related needs, behaviours, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients’ experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management.

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