Eleni Epiphaniou

How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness.

Introduction: Informal caregivers needs in cancer/advanced disease are largely unmet. The science of carer intervention evaluation is methodologically challenging, and the evidence historically weak. Objective: This systematic review updates an earlier effectiveness review to determine both the effectiveness of subsequently published intervention studies, and the current state of science. Method: The evidence was identified and appraised using a comprehensive search strategy. Articles were searched from 2001 to 2010 using the following electronic databases: Medline, PsychINFO and CINAHL. Inclusion criteria were studies reporting intervention data for informal adult caregivers of a patient with a diagnosis of cancer or receiving palliative care. The design and evidence rigour were assessed using the Jadad Rating Scale, and the Quality Rating Scale. Results: 33 studies met inclusion criteria. From the original review, an encouraging increase was identified in the number of evaluations (from 8 to 33), in carer-specific interventions (from 6 to 17) and in the robustness of the study design (an increase from 2 to 12 studies with before/after measures, comparison groups and prospective data). Conclusions: The evidence suggests a rapid increase in the number of robust intervention studies. However, the range of models remains narrow in relation to caregivers’ needs and preferences.

Needs, Experiences, and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systematic Review

OBJECTIVES To identify and appraise the existing evidence for the needs, experiences, and preferences for palliative and end-of-life (EOL) care in lesbian, gay, bisexual and transgender (LGBT) populations. METHOD The databases searched were Medline (1950-present), PsycInfo (1806-2010), Cinahl (1982-2010), and ASSIA (1987-2010). RESULTS Among 4483 articles, 133 papers were chosen for further exploration. Overall, 12 papers were retained in the study. The majority of papers focused on the cancer experience of gay men and lesbian women. Only a few papers had evidence for the bisexual population, while no studies related to transgender people. CONCLUSIONS Existing evidence is explicit and indeed repetitive in highlighting the educational needs of health care professionals to explore sexual preferences, avoid heterosexist assumptions, and recognize the importance of partners in decision making. There is also a significant need to research LGBT experiences and refine services for patients and their caregivers.

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention

PurposeTailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers’ experiences.MethodSingle, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care.ResultsCarers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient’s condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems.ConclusionsConsidering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

BACKGROUND Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

Successful Weight Loss Maintenance and a Shift in Identity From Restriction to a New Liberated Self

The present qualitative study aims to explore the experiences of dieters who successfully maintain their weight loss with a focus on the transition in perception of self from their heaviest to their current reduced weight. Ten successful women from a slimming club who had lost at least 10 per cent of their weight for a minimum of one year participated in the study. The results showed an identity shift from a previous restrained self towards a liberated individual, regarding their social interactions, dietary habits, emotional regulation and self-appraisal. The results are discussed in terms of the process of reinvention and the impact of stigma on an obese person’s self-identity.

The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers

Objectives To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. Design A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. Methods Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. Participants Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. Settings Three cases from contrasting primary, secondary and tertiary settings within Britain. Results Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. Conclusions Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future.

Evaluating the Role of Life Events and Sustaining Conditions in Weight Loss Maintenance

Background. Recent qualitative research indicates that life events can enhance behaviour change maintenance. if a number of sustaining conditions are met. This study aimed to quantitatively test this theory in the context of weight loss maintenance. Method. Based upon their weight histories participants were classified as either successful (n = 431) or unsuccessful (n = 592) dieters and all completed questionnaires relating to life events, choice, the function of eating and exercise and the model of their weight problem. Findings. Successful dieters reported a higher number of life events than unsuccessful dieters particularly for events such as “clothes did not fit me”, “doctors recommendation” and “reached my heaviest weight”. Successful participants also indicated reduced choice over their previous unhealthy diet, more choice over their exercise behaviours and more benefits from the new healthy behaviours. They were also less likely to attribute their previous increased weight to any medical and psychological factors. This was accompanied by a belief about the effectiveness of behavioural solutions to their weight problem. Discussion. Life events can promote behaviour change for some individuals. This change is facilitated by a reduction in choice and disruption of function over the unhealthy behaviours, and a belief that behavioural solutions will be effective.

Avoid ‘prognostic paralysis’—just get ahead and plan and co-ordinate care

Dear Sirs, We are grateful for the letters responding to our article which highlighted that poor last-year-of-life care for chronic obstructive pulmonary disease (COPD) patients was partly due to the prognostic uncertainty.1 In response, Crawford et al.2 called for more accurate prognostication as a way forward. This is fine in theory but near impossible in practice, and use of a greater number of tools may not be appropriate in fatigued and breathless patients. Instead we agree with the response by Kendall et al.3 that rather than wait to identify a transition point to trigger palliative care, we should avoid ‘prognostic paralysis’ and plan holistic care according to needs. This will encourage integrated, early use of palliative care alongside disease-oriented care. As palliative care input has been shown to improve care coordination, early integrated palliative care input should provide benefits for patients and their unpaid caregivers.4 One of the largest barriers to initiating generalist palliative care is the perception among patients, family carers and some health professionals that palliative care is a ‘death sentence’.5 Attempts to focus on the accuracy of prognostication will only reinforce that perception. Instead, we suggest that all patients with chronic illness such as COPD should have anticipatory care for expected deteriorations, which can be extended in scope as the illness progresses. In this way we can make progress towards the holistic, well-coordinated management of patients with one or often multiple chronic conditions by generalist clinicians in the community.6 This will improve the continuity of care and overall care coordination, as well as facilitate the access to specialist care as necessary, and should improve patient outcomes.

Co-ordination of generalist end of life care in the UK: a multi-site ethnographic study

Abstract Introduction and aims Appropriate, effective and timely generalist care for patients and their families towards the end of life is recognised as an essential component of high quality, equitable care. Improving coordination of care is one of the core objectives of the UK Department of Health End of Life Care Strategy. We aimed to identify the contextual complexities and challenges to well co-ordinated care delivery for people towards the end of life in different generalist settings. Method We used organisational ethnography among staff who were not specialist palliative care providers in three locations; an acute receiving unit, a respiratory outpatient clinic, and a primary care practice. The protocol included sustained interactions with health providers and interviews with patients and their carers over 9 months. The integrated datasets offer an understanding of how end-of-life care co-ordination is understood, initiated and conducted within patient trajectories and in the context of everyday healthcare provision. Results The patient-centred, long term focus of primary care drives individual and team activity and requires flexibility and collaboration. In the secondary care short-term, acute setting, role boundaries and a clearly defined process, in which time constraints are paramount, may result in a less personalised experience for patients. Conclusions Coordination of care for patients and their families with advanced progressive diseases undergoing emergency admissions or transition across settings is important. The level of coordination and the systems in place influences peoples experience of coordination of generalist settings. Further research regarding how collaboration influences coordination of care is required.

Co-ordination of generalist care for patients towards the end of life: a literature review

Abstract Introduction and aim Increased coordination and collaboration have been highlighted as improving the provision of health and social care for people at the end of life. We aimed to review the literature concerning coordination or collaboration of care to determine whether coordination and collaboration improves the quality of care delivered by generalists towards the end of life. Methods Searches in PUBMED and ISI Web of Knowledge for the stems ‘coordinat-‘ or ‘collaborat-‘ in the context of the stem ‘palliat-‘ or the phrase ‘terminal care.’ Search of Web of Knowledge for the categories ‘generalist health care’ and ‘palliative.’ Search of PUBMED MeSH terms ‘palliative care admin and organisation’, ‘terminal care admin and organisation’ and ‘Cooperative Behavior.’ Electronic searches were supplemented by hand searches of leading palliative care journals (2008–2010). Results 1672 articles initially identified as requiring further screening, and 55 eligible studies identified. Different approaches/terminology to enabling coordination and collaboration were identified including networks, integrated care pathways, partnerships, frameworks, programmes and ‘collaboratives’. Lack of coordination and/or collaboration was routinely identified as a barrier to good palliative care. Conclusion Approaches to enabling coordination and collaboration are evident in the literature but no metrics to measure coordination or collaboration were uncovered so it is impossible to determine whether a particular intervention increased coordination or collaboration. Therefore more research to determine whether collaboration and coordination improves quality of care is needed. Management or organisational theory as well as robust evaluation of models of co-ordination is indicated to guide current policy developments. This will require increased conceptual clarity regarding the terms collaboration and coordination in this context.