My Life, My Future - Evaluation of Down's Syndrome Scotland Life Story Project

Abstract

Background My Life My Future project was developed and delivered by Down’s Syndrome Scotland as an enjoyable family activity with the aim of producing an output that can serve as a valuable communication tool now and in the future. Life story work is a person‐centred approach which enables an individual to focus on their past, present and future by collating images, audio or other types of memorabilia. Aim The aim of the evaluation was to identify short-term outcomes (one-year duration of My Life My Future) among fourteen participating families, and to consider implications for medium- and longer-term planning beyond one year. Evaluation design and methods The University of Stirling research team developed a logic model to focus on and visually represent the short-term (one-year) outcomes of the evaluation. Data collection methods were: pre- and post-project family interviews, pre- and post-completion of Warwick-Edinburgh Mental Wellbeing Scale, pre- and post-completion of Personal Wellbeing Index – Intellectual Disability (PWI-ID) and semi-structured interviews with two project workers and two volunteers. Findings Recognising that people who took part were all able to communicate verbally and that the level of available support was high, there were clear benefits for the families who took part. No significant changes were evidenced in the wellbeing of participants, which remained high over the course of the year. Five themes were identified relating to either the process or outcomes of life story work: - format of life story - increased social interaction - future planning - responding to loss and difficult life events - ownership and affirmation of life story Early concerns from parents and siblings about ownership of the life story work reduced as people with Down’s syndrome became more confident and knowledgeable. The value of support staff being involved in the ongoing development of life story work was recognised although questions were raised about how far this was happening in practice. Unexpected outcomes arose for parents who themselves reflected on their own past and in particular what they had been told about their child at birth, compared to the achievements and progress made in reality. A further unexpected outcome was the increase in positive engagement around bereavement and loss. At the beginning of the project many families were concerned about re-visiting upsetting memories of people who had died, yet by the end most spoke of how helpful it had been to include these memories, both happy and sad. Conclusions My Life My Future was reported to be an enjoyable and beneficial project for the members of Down’s Syndrome Scotland who took part. The potential is evident for individuals with Down’s syndrome to be at the centre of future planning or transitions through ownership of a tool that (with permission) identifies what is important to them. Both families and paid staff have a key role to play in achieving a longer-term outcome of supporting members of Down’s Syndrome Scotland to continue or begin life story work in an appropriate format.