Understanding the spiritual lives of people with profound and complex learning disabilities: a community oriented action research approach

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BACKGROUNDThe University of Aberdeen's Centre for Spirituality, Health and Disability has been involved in developing a unique programme of action-oriented research exploring the role of spirituality and religion in the lives of people with learning disabilities. This programme has shown that religion and spirituality form a significant dimension of the lives of people with learning disabilities. Thus far the primary focus has been on people with moderate learning disabilities; the religious and spiritual needs of people with high support needs remain unexplored. (The term 'high support needs' signifies people who have a profound learning disability which includes communication difficulties that present major challenges to getting one's views and preferences heard and understood). This project will seek to address this gap in knowledge and practice by exploring the spiritual lives of people with profound learning disabilities with a view to gaining deeper understanding of such lives. This Practical Theology (PT) research project will utilise a community oriented action research method based around the principles of Person Centred Planning (PCP) to examine the value of spirituality and religion for people with profound and complex learning disabilities. RESEARCH AIMS1. Understand the role of spirituality and religion in the lives of people with high support needs and effectively mobilise that knowledge to develop, implement and assess concrete practical strategies for enabling effective spiritual care.2. Develop a protocol for facilitating the development of models of inclusive community that can be mobilized as practical and theological resources for people with high support needs.3. Contribute to the emerging body of methodological literature that seeks to discover effective ways of communicating and researching with people who have profound cognitive disabilities and little or no verbal communication.4. Contribute to the literature on Practical Theology and qualitative research.5. Contribute to the development of 'person-centred' forms of care by developing an original care plan approach that will enable communities to recognize, support and value the spirituality of people with high support needs.RESEARCH METHODSThe study is located within the discipline of Practical Theology and will utilise an original qualitative research method which draws on insights from Participatory Action Research and Person Centred Planning. There are close methodological similarities between PCP (a way of organising around one person to define and create a better future), PAR (a family of research methods which simultaneously pursue action (or change) and research (or understanding)) and the methods utilised by PT (a theological discipline that focuses on the interaction between theology and particular forms of human practices). RESEARCH OUTCOMESAn in-depth report of the findings of the research that will be of interest to academics and practitioners in practical theology, social service provision, faith communities, pastoral care, families and others involved in offering support and care. An accessible summary of the research for people with learning disabilities.An A4 briefing paper detailing the key findings and implications circulated to religious communities, social care agencies and self-advocacy groups throughout the United Kingdom and put on the CSHAD website.The submission of at least three academic papers to peer reviewed journals in theology and in social care, focusing on the findings and the methodology. The person-centred plan developed within the study focusing on spirituality and religion will be disseminated to appropriate caring services in the UK, the United States and Europe.The data will contribute to a monograph on theology and disability.