The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence

Background Home is often reported as the preferred place of care for patients at the end-of-life. The support of family caregivers is crucial if this is to be realised. However, little is known about their preferences; a greater understanding would identify how best to support families at the end-of-life, ensuring more patients are cared for in their preferred location. Objectives To systematically search and synthesise the qualitative literature exploring the preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. Methods Ten databases (MEDLINE, PsycINFO, EMBASE, AMED, ASSIA, CINAHL, Social Care Online, Cochrane Database, Scopus, Web of Science) and reference lists of key journals were searched up to January 2014. Included studies were appraised for quality and data thematically synthesised. Results Eighteen studies were included; all were of moderate or high quality. Two main themes were identified: (1) Preferences and perspectives: most family caregivers preferred home care, although a range of perspectives were reported. Both positive and negative perspectives of home, hospices and hospitals emerged. At times, family caregivers reported feeling obligated to provide home care. (2) Impact of facilitating home care; both positive and negative effects on family caregivers were reported. Conclusions Many family caregivers reported home as the preferred place of care; other places of care were infrequently considered. Healthcare professionals and service providers should be aware of these preferences and provide support where needed to enable family caregivers to successfully care at home, thus improving end-of-life experiences for families as a whole

Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky’s (1979) Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one’s illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This paper considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions

Background Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. Methods The PeolcPSP data (n=1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach. Results Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. Conclusions This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families

'I didn't really understand it, I just thought it'd help': exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial

BACKGROUND: Few studies have explored in depth the experiences of patients with advanced cancer who are participating in clinical investigational medicinal product trials. However, integrated qualitative studies in such trials are needed to enable a broader evaluation of patient experiences in the trial, with important ethical and practical implications for the design and conduct of similar trials and treatment regimes in the future. METHODS: Ten participants were recruited from the control and intervention arms of FRAGMATIC: a non-placebo trial for patients with advanced lung cancer. Participants were interviewed at up to three time points during their time in the trial. Interviews were analysed using Interpretive Phenomenological Analysis. RESULTS: Patients were motivated to join the trial out of hope of medical benefit and altruism. Understanding of randomisation was mixed and in some cases poor, as was appreciation of trial purpose and equipoise. The trial was acceptable to and evaluated positively by most participants; participants receiving the intervention focused on the potential treatment benefits they hoped they would receive, whilst participants in the control arm found alternative reasons, such as altruism, personal fulfilment and positive attention, to commit to and perceive benefits from the trial. However, whilst experiences were generally very positive, poor understanding, limited engagement with trial information and focus on treatment benefits amongst some participants give cause for concern. CONCLUSIONS: By exploring longitudinally the psychological, emotional and cognitive domains of trial participation, we consider potential harms and benefits of participation in non-placebo trials amongst patients with advanced lung cancer and identify several implications for future research with and care for patients with advanced cancer. TRIAL REGISTRATION: ISRCTN80812769. Registered on 8 July 2005

Free communication FC 12.1 (oral abstract): Educating adult palliative care teams about the needs of transition age young people. What do they need to know?

Aims: The prognosis of life-limiting conditions in childhood has improved and an increasing number of young people are accessing adult Specialist Palliative Care (SPC) services. Adult SPC teams are sometimes inexperienced in caring for the complex needs of young people and have concerns regarding skills, knowledge and service capabilities. We aimed to identify the training needs of SPC teams regarding the care of young adults. Methods: Delphi: An online Delphi process collated expert opinion on format, delivery and content of the package. Round 1 participants (n=44) answered free text questions, generating items for Round 2. In Round 2, 68 participants rated the extent to which they agreed/disagreed with the items on 5- point Likert type scales. Median and mean scores assessed the importance of each item. Interquartile range scores assessed level of consensus for each item; items lacking consensus were re-rated by 35 participants in Round 3. Focus Groups: Focus groups were held with young people pre-transition, post-transition, parents/carers of young people post-transition and staff from a local adult hospice. Discussions explored the care and support needs of young people and their families, and the training needs of SPC teams. Data were analysed using thematic analysis. Results: Delphi: Consensus was reached on a range of suggested formats, on who could deliver the training, and on several clinical, psychosocial and practical topics. Training should be delivered as a continuous/rolling programme and not as ‘a one-off’. Focus Groups: Discussions centred on: challenges of caring for young people; barriers to transition; staff education and training; facilitating transition. Conclusions: Recommendations include a continuous/rolling programme of education, tailored for content and mode of delivery, and incorporated into working practice. A template to guide handover and a single point of contact would facilitate the transition process

Transition in palliative care study day series

Background / Context Medical advances have led to more children with life-limiting conditions surviving into adulthood with an increasing number accessing adult Specialist Palliative Care (SPC) services. These young adults often have conditions unfamiliar to adult SPC professionals, who may be inexperienced in caring for their complex needs. Results from previous research carried out by the same team, identified a need for a training/education programme for adult SPC professionals and provided recommendations regarding content and delivery. Aim To develop a training programme to help up skill and build confidence in adult SPC professionals regarding the care of young adults with life-limiting conditions. Approach Used A project team, consisting of children’s and adult palliative care providers, researchers and the All Wales Palliative Care Transition Lead, was convened to design a purposeful and effective training. The training was specifically created such that it would be suitable for a multi-disciplinary audience which would provide a comprehensive grounding if completed, but could also be delivered piecemeal so that participants had as much flexibility as possible regarding attendance. The content was informed by previous research. Outcomes A series of six linked study days was designed such that each day could be attended as standalone, but those attending all of the days would have a comprehensive grounding in young adult care. Each study day includes a balance of clinical, practical and psychosocial topics suitable for a multi-disciplinary audience. Training will be delivered between June 2013 and June 2014. Application to Hospice Practice The study day series is open to all professionals working in adult hospices who may increasingly be called upon to care for young people with life-limiting conditions. By improving the knowledge and skill base of these professionals, professional confidence will increase and lead to an improvement of care for these young people

Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky’s (1979) Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one’s illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This paper considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services