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

背景阿伯丁大学灵性、健康和残疾中心一直在参与制定一个独特的以行动为导向的研究方案，探索灵性和宗教在学习障碍人士生活中的作用。该方案表明，宗教和精神信仰是学习障碍人士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的人；有高度支持需要的人的宗教和精神需求仍未得到探索。(“高支持需求”一词指的是有严重学习障碍的人，其中包括沟通困难，这对表达自己的观点和偏好构成了重大挑战)。该项目将寻求通过探索严重学习障碍者的精神生活来解决知识和实践方面的差距，以期对这种生活有更深的了解。这一实用神学(PT)研究项目将使用基于以人为中心的规划(PCP)原则的面向社区的行动研究方法，以检查灵性和宗教对严重和复杂学习障碍的人的价值。研究目的1.了解灵性和宗教在有高度支持需要的人的生活中的作用，并有效地调动这方面的知识，以制定、实施和评估具体的实用战略，以实现有效的精神护理。制定一项议定书，以促进包容性社区模式的发展，这些模式可作为实际资源和神学资源动员起来，供有高度支持需要的人使用。为新出现的方法论文献做出贡献，这些文献试图发现与严重认知障碍、很少或根本没有语言交流的人进行沟通和研究的有效方法。为实践神学和定性研究方面的文献贡献力量。通过开发一种原创的关怀计划方法，使社区能够认识、支持和重视有高度支持需求的人的灵性，从而促进“以人为本”的关怀形式的发展。研究方法这项研究位于实用神学学科范围内，将利用一种原创的定性研究方法，该方法借鉴了参与式行动研究和以人为中心的规划的见解。PCP(一种围绕一个人组织起来定义和创造更美好未来的方式)、PAR(同时追求行动(或改变)和研究(或理解)的一系列研究方法)与PT(专注于神学和特定形式的人类实践之间的互动的神学学科)所使用的方法之间有密切的方法论相似之处。深入报告研究结果，这些研究结果将使实际神学、社会服务提供、信仰社区、牧民关怀、家庭和其他参与提供支持和关怀的学者和从业者感兴趣。为有学习障碍的人提供的研究摘要。一份4份简报文件，详细说明主要研究结果和影响，分发给英国各地的宗教社区、社会关怀机构和自我倡导团体，并放在CSHAD网站上。向同行评议的神学和社会关怀杂志提交至少三篇学术论文，重点介绍研究结果和方法。在这项研究中制定的以人为本的计划专注于灵性和宗教，将被传播到英国、美国和欧洲的适当护理服务机构。数据将有助于出版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.