Challenges for palliative care day services: a focus group study.

BACKGROUND: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. METHODS: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. RESULTS: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. CONCLUSIONS: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Comparison of informal caregiver and named nurse assessment of symptoms in elderly patients dying in hospital using the palliative outcome scale.

OBJECTIVES: A prospective study of symptom assessments made by a healthcare professional (HCP; named nurse) and an informal caregiver (ICG) compared with that of the patient with a terminal diagnosis. To look at the validity of HCP and ICG as proxies, which symptoms they can reliably assess, and to determine who is the better proxy between HCP and ICG. METHODS: A total of 50 triads of patient (>65 years) in the terminal phase, ICG and named nurse on medical wards of an acute general hospital. Assessments were made using the patient and caregiver versions of the palliative outcome scale (POS), all taken within a 24 h period. Agreement between patient-rated, ICG-rated and HCP-rated POS and POS for symptoms (POS-S) was measured using weighted-κ statistics. Demographic and clinical data on each group of participants were collected. RESULTS: ICG assessments have higher agreement with those of the patient than HCP. Better agreement in both groups was found for physical symptoms, and best agreement was for pain. The worst agreements were for psychological symptoms, such as anxiety and depression, and for satisfaction with information given. Psychological symptoms are overestimated by both ICG and HCP. CONCLUSIONS: ICGs are more reliable proxies than HCPs. A trend for overestimation of symptoms was found in both groups which may lead to undervaluation of the quality of life by proxy and overtreatment of symptoms. This highlights the need to always use the patient report when possible, and to be aware of the potential flaws in proxy assessment. Reasons for overestimation by proxies deserve further research.

Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life.

BACKGROUND AND OBJECTIVES: Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL). METHODS: Qualitative data from 'thinkaloud' interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures. RESULTS: Data collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions. CONCLUSION: Despite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals.

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

'The ICECAP-SCM tells you more about what I'm going through': A think-aloud study measuring quality of life among patients receiving supportive and palliative care.

BACKGROUND: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. AIM: To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. DESIGN: Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. SETTING/PARTICIPANTS: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). RESULTS: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. CONCLUSIONS: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

PA14†The legacy of cancer: why a health promoting approach is so important in palliative care.

BACKGROUND: A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications. AIM: To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on their lived experiences and how these affected their beliefs, attitudes and constructions of cancer risk. METHODS: 27 in-depth, semi-structured interviews were conducted with advanced breast, colorectal or lung cancer patients and their close relatives. Interviews were recorded and transcribed verbatim. Data was analysed using the constant comparison method. RESULTS: A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy - the hope that their situation would have a positive impact on others in the future. CONCLUSION: Despite the prominence of 'prevention' in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs.

PA22†The arts of connexion.

BACKGROUND: There is growing evidence that creative arts interventions improve perceived physical and mental. However, there is little research into arts interventions in relation to palliative care and the published studies in arts and health have focussed on visual arts with little attention to dance. AIM: A one year clinical audit was followed by a ten week pilot research study explored whether creative movement enabled people to feel more connected to themselves and each other, whether it supported the development of their collective voice and their ability to advocate for themselves and their peers. The service was offered on a group basis in Day Therapy and on a one-to-one basis for patients in the in patient unit. METHOD: Dance sessions were run weekly and evaluated at each session on a simple scale measuring connectedness to oneself and each other in the group, and the joy derived from attendance. RESULTS: Healthcare professionals reported that the sessions offered patients a chance to reconnect with the memories of their physicality, whilst also offering an experience that proferred joy, the opportunity to participate in a social group and focussed on sharing support. A patient's daughter who co-participated in a session reported "Two days before {my mother} died we had a movement session together; we have never felt so together as we did after that session". CONCLUSION: Whilst palliative care has long recognised the arts, there are benefits to be gained from collaborating and further research is needed to understand the nature and impact of creative interventions.