Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study

BACKGROUND: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. AIM: This study aimed to evaluate the model of ‘Hospice Enabled Dementia Partnership’ mapped to international domains of best practice. DESIGN: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SETTING/PARTICIPANTS: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. RESULTS: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data ‘Impact of Dementia’, ‘Value of the Service’, ‘Information and Learning Needs’ and ‘Working in Partnership’. CONCLUSIONS: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally

Effectiveness of advance care planning with family carers in dementia nursing homes:a paired cluster randomized controlled trial

BackgroundIn dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. AimTo evaluate the effectiveness of advance care planning with family carers in dementia care homes. DesignPaired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participantsA total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. ResultsThe primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (−10.5, 95% confidence interval: −16.4 to −4.7; p < 0.001). ConclusionAdvance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers

A study to develop and evaluate a multi-media resource in palliative and end-of-life care for specialist palliative care and learning disability services : promoting collaborative working

Background The literature highlights concerns regarding the quality of palliative care offered to people with learning disabilities (Michael, 2008). It is also recognised that better collaboration between learning disability and specialist palliative care services is essential to develop this area of practice and to provide quality palliative and end-of-life care to this population (Tuffrey- Wijne et ai, 2007b; Read and Morris, 2008; Ryan et ai, 2011). Aim: This study aimed to develop and evaluate a multi-media resource for specialist palliative care and learning disability services which promoted collaborative working Methods: A sequential, exploratory mixed methods research approach involving three phases was used. The study used a unique combined perspective of service users and health and social care professionals. In Phase 1 two focus groups took place with people with learning disabilities and semi structured interviews with five family carers and thirty health and social care professionals. This informed Phase 2 which involved a regional scoping study of end-of-life care service provision based on the structure of the National Gold Standard Framework for end-of-life care. From the findings of Phase 1 and 2, and in consultation with an expert reference group, a multi- media educational resource (DVD and Manual) was developed. An explorative evaluation of the resource took place with twelve professionals who had taken part in interviews in Phase 1. Findings: The findings of the study show that people with learning disabilities and family carers can inform the design and delivery of professional education and service provision in palliative and end-of-life care. Examples of good practice and areas needing service improvement have been identified. It is apparent that there are a range of unmet learning needs across learning disab.lity and specialist palliative care services which can be effectively met through joint working and learning. The study has provided greater insights into the rationale for and concepts of joint working and learning between learning disability and specialist palliative care services and a partnership framework has emerged from the findings of the study. Conclusions: This study has shown the value of involving a robust service user perspective in the development and delivery of a multi-media resource, which has demonstrated transferability of learning to practice. The resource promoted partnership working and the partnership framework which has emerged from the study demonstrates that the perceived barriers to joint working and learning are challenges that can be worked through. Most importantly the person with learning disability, and those who matter to them, have their place at the centre as they are also part of the joint working and learning that goes on in the partnership.EThOS - Electronic Theses Online ServiceGBUnited Kingdo