Evaluation of the impact of a hospice at home service on place of death

Fewer patients are able to die at home than would wish to do so. A literature review showed that palliative home care patients are more likely to die at home than others. However, findings may be due to case mix differences, as variables which are positively associated with home death, are also positively associated with access to palliative home care. The thesis investigated the impact of a hospice at home (HAH) service on place of death. An observational, case control study compared 121 patients referred to HAH with 206 patients not referred. Multivariate logistic regression analysis showed that HAH care was strongly positively associated with home death. However, case mix effects could not be discounted. A randomised controlled trial (RCD compared 186 patients allocated to HAH care with 43 controls. Analysis was intention to treat. Intervention patients were not significantly more likely to die at home than control patients (67% versus 58%). The RCT suffered loss of power and dilution of the treatment effect. Post hoc multivariate logistic regression analysis showed a positive association between actual HAH input and home death. However, this association was no stronger than that between less intensive home care services and home death. Concerns about case mix effects remained. Content analysis of professional and family carers' explanations of endstage inpatient admissions for RCT patients suggested such admissions were mainly perceived to result from factors unrelated to insufficient home care. While some patients may have benefited from added home support, this may not have affected place of death. Additional home care introduced on top of good existing provision, among patients who are already likely to die at home, may have little impact on home deaths. Careful consideration of service aims, target group, other health service context is required before introduction of further hospice at home services

The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners' perspectives of its impact and mechanisms of action.

BACKGROUND: The importance of supporting family carers is well recognised in healthcare policy. The Carer Support Needs Assessment Tool is an evidence-based, comprehensive measure of carer support needs to facilitate carer support in palliative home care. AIM: To examine practitioner perspectives of the role of the Carer Support Needs Assessment Tool intervention in palliative home care to identify its impact and mechanisms of action. DESIGN: Qualitative - practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes. SETTING/PARTICIPANTS: A total of 29 staff members from two hospice home-care services - contrasting geographical locations, different service sizes and staff composition. A thematic analysis was conducted. RESULTS: Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a carer-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carers, providing an opportunity for carers to express support needs and responding to carers' self-defined priorities. CONCLUSION: The Carer Support Needs Assessment Tool delivered benefits through a change in practice to an identifiable, separate assessment process for carers, facilitated by practitioners but carer-led. Used routinely with all carers, the Carer Support Needs Assessment Tool has the potential to normalise carer assessment and support, facilitate delivery of carer-identified support and enable effective targeting of resources.The pilot work was funded by the Phillip Poole-Wilson Seed Corn Fund, the BUPA Foundation (Grant reference number 22094791). The feasibility study was supported by a grant from Dimbleby Cancer Care Research Fund.This is the author accepted manuscript. The final version is available from SAGE via http://dx.doi.org/10.1177/026921631559666

Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach.

BACKGROUND: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. AIM: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. DESIGN: Qualitative. SETTING/PARTICIPANTS: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. RESULTS: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. CONCLUSION: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital

A world shared - a world apart: the experience of families after the death of a significant other late in life

Aims: The aim of this study was to investigate the impact of the death of an older member on families. Background: The death of a significant other in later life is a dramatic moment. Research has demonstrated that some older persons face negative consequences for their well-being. A majority, however, exhibit resilience in the wake of loss. Nonetheless, the relational process through which older persons come to terms with the loss in interaction with their families is little understood, but vital to support bereaved families. Design: Heideggerian hermeneutic phenomenology. Methods: A purposive sample of ten older persons with their families, represented by children, grandchildren and in-laws (n = 30) were interviewed several times in 2013, alone (n = 16) and in family groups (n = 21), 6-23 months after their significant other's death (mean age 81 years). Data collection and thematic analysis was informed by van Manen's and Benner's analytical strategies. Findings: Three family themes were discerned. First, through meaning-making, bereaved families weaved the death into their family narrative. Second, through sharing-not sharing their feelings and daily moments, family members lived with the loss both together and alone. Third, some families faced upheaval in their family life, which required them to re-create their everyday life, whereas other families continued with little change. Conclusions: Findings demonstrate that families hold an inherent capacity to make meaning of the death and enact family thereafter. Family relations arose as interplay of different, contradicting forces. Nurses should facilitate families’ meaning-making of the death, attend to their converging and diverging sense of loss and strengthen family caring

The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.

BACKGROUND: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care. AIM: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. DESIGN: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. RESULTS: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life. CONCLUSION: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions