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

背景：阿伯丁大学精神、健康和残疾中心参与制定了一项独特的面向行动的研究方案，探索精神和宗教在有学习障碍的人的生活中的作用。该方案表明，宗教和精神是学习障碍者生活的一个重要方面。到目前为止，主要关注的是中度学习障碍患者；需要高度支持的人的宗教和精神需求仍未得到探索。（“高支持需求”指的是那些有严重学习障碍的人，其中包括沟通困难，这对让别人听到和理解自己的观点和偏好构成了重大挑战。）本项目将通过探索有深度学习障碍的人的精神生活，以期更深入地了解他们的生活，从而解决这一知识和实践上的差距。这个实用神学（PT）研究项目将利用基于以人为本的计划（PCP）原则的以社区为导向的行动研究方法，来研究灵性和宗教对有深刻和复杂学习障碍的人的价值。研究AIMS1。了解精神和宗教在高支持需求人群生活中的作用，并有效地调动这些知识来制定，实施和评估具体的实用策略，以实现有效的精神护理。制定一项协议，以促进包容性社区模式的发展，这些模式可以作为实际和神学资源动员起来，为有高度支持需求的人提供资源。为方法学文献的新兴主体做出贡献，这些文献旨在发现与有严重认知障碍且很少或没有语言交流的人进行有效交流和研究的方法。对实践神学和定性研究的文献有贡献。通过制定原始的护理计划方法，促进“以人为本”的护理形式的发展，使社区能够认识、支持和重视有高度支持需求的人的精神。研究方法该研究属于实践神学学科，将采用原始的定性研究方法，该方法借鉴了参与性行动研究和以人为本的规划的见解。PCP（一种围绕一个人来定义和创造更美好未来的组织方式）、PAR（一系列同时追求行动（或改变）和研究（或理解）的研究方法）和PT（一种专注于神学与特定形式的人类实践之间相互作用的神学学科）所使用的方法在方法论上有密切的相似之处。研究成果一份深入的研究结果报告，将对实践神学，社会服务提供，信仰社区，教牧关怀，家庭和其他参与提供支持和关怀的学者和实践者感兴趣。对有学习障碍的人的研究进行了简单的总结。一份详细说明主要调查结果和影响的A4简介文件分发给英国各地的宗教团体、社会关怀机构和自我倡导团体，并在CSHAD网站上公布。向神学和社会关怀领域的同行评审期刊提交至少三篇学术论文，重点是研究结果和方法。在研究中制定的以人为中心的计划侧重于灵性和宗教，将传播给联合王国、美国和欧洲的适当护理服务机构。这些数据将用于撰写一本关于神学和残疾的专著。

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.