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