About

The Centre for Spirituality, Health and Disability exists to help individuals and organizations address pressing spiritual and theological issues and needs within the religious communities and the health and social care professions and within the field of disability theology. It seeks to achieve this task through the development of a rigorous evidence based empirical research program with a particular focus on research that informs practice.

Areas of activity include the Theology of Disability, Dementia, Mental Health, Intellectual Disabilities, Health and Healing, Oncology, End of Life Care, Genetics and Disability, Parish Nursing, Ethics, Staff Support, Chaplaincy, and Suicide.

Projects

The Centre seeks to develop strong relationships with other disciplines within theology, health and social care, the sciences, the Arts and Humanities, and religious communities. Such creative collaborations are welcomed as vital for actualising the Centre’s vision and aims.

Projects supported by the Centre include:

Dementia

Intellectual, cognitive and developmental Disabilites

Spirituality and Health

Dementia - Developing a Resource

Meeting the spiritual needs of people with advanced dementia

In 2010 the Centre completed a piece of work funded by the AHRC which looked at the spiritual needs and lives of people with profound learning disability: 'Understanding the spiritual lives of people with profound and complex learning disabilities: a community oriented action research approach.'

A product that came unexpectedly out of this study was the 'ASSFAP: a seven stepped facilitated action plan for meeting the spiritual needs of intellectually and cognitively disabled people.'

This educational and process tool/system was specifically designed to be used by communities to explore, understand and respond to the spiritual needs of people with severe intellectual and cognitive impairments through the use of an action planning system of spiritual care development and delivery. Whilst there are recognisable differences between the two populations, it was felt that this process could be transferred and applied to other settings and that it could provide for the needs of a wide range of people with profound communication difficulties.

People with advanced dementia are a group of people, like those with profound learning difficulties, who are often overlooked and can be the subject of poor care through a lack of knowing what to do and how to be with them. This resource provides a method of "doing and being" for those who care for them professionally and within families, which enhances the quality of life of both the carers and the people with communication difficulties.

The project presented here focuses on making this resource (ASSFAP) available to the community of carers who look after people with advanced dementia; either those who live either at home, in residential care or in hospital. It comes at a time when the care of frail elderly people has been spotlighted by The Care Inspectorate (formerly the Care Commission) as requiring urgent attention. There is growing concern that care of older people, particularly those with advanced dementia, is being reduced to what has been called "bed and body work" to the enormous detriment of the older person and shame of our society.

This project is funded by the Arts and Humanities Research Council. It will focus specifically on exploring how the ASSFAP model can be effectively utilised within the context of advanced dementia.

The Lived Experience of Dementia

Developing a Contextual Theology

This is a collaborative project between the Centre and Centre for Ageing and Pastoral Studies in Canberra Australia which is headed up by Professor Elizabeth Mackinlay. The project is funded by the British Academy.

There has been a lot of interesting work done exploring the role of spirituality in the lives of people with dementia. However, to date, very little reflection has been done on how theology might impact on our understanding of dementia and dementia care. In the light of the experiences of people with dementia the project will seek to challenge the ways in which we understand dementia and how we interpret and practice Scripture, theology, and tradition in the light of the experience of dementia. These challenges will be theological and conceptual; but they will also be practical. The assumption running through the project is that theory and practice are deeply intertwined. We hope that the project will initiate an ongoing conversation that will be transformative to theology and the practice of dementia care.

The project began in June 2012.

Intellectual Disabilities - A Community Orientated Action Research Approach

About

The project focused on accessing and understanding the role of spirituality in the lives of people who have profound learning disabilities with high support needs (the term ‘high support needs’ signifies people who have a profound learning disability which includes high support needs and communication difficulties that present major challenges to getting one’s views and preferences heard and understood).

Theologians such as Stanley Hauerwas and Jean Vanier have written extensively on the spirituality of people with profound learning disabilities and the ways in which Christian communities can become places of spiritual growth, acceptance and well-being. However, to date there has been no empirical work done exploring the spirituality of people with profound learning disabilities and the role of such communities in facilitating spiritual well-being. The current study will address this gap in our knowledge by exploring the spirituality of people with profound and complex learning disabilities as they live out their lives in relation to various forms of Christian community. It is expected that the results and strategies that emerge from the study will have wider application than any single faith tradition. The project began in June 2008.

Project Overview

The intention of the project is to find out more about the spiritual lives and needs of people with profound learning disabilities who have limited or no verbal language with which to communicate. We are finding other ways to communicate.

The project is using an approach drawn from Person Centred Planning known as MAPS (making an action plan) which was developed initially by teachers in special needs schools who identified the importance of friendships and circles of friends in the sustenance and support of the children in their care. They have based their entire work on the assumption that all people belong, all can learn, we are better off together and diversity is one of our most critical strengths. It is a very inclusive process. We have borrowed the idea of a circle of friends and the use of the tools which facilitate the production of a plan. Our project focuses specifically on the spiritual lives and needs of the individuals with whom we are working.

The first thing we do is get the circle of friends together. The wider the circle the more likely it is that the picture reflects nuances and details of the person's life. We need the support of the “inner circle” for this and it is usually the family. The meetings move through a series of questions which help us tell the person’s story, identify her dreams (and nightmares) and paint a picture that allows a plan of action to emerge. At this first stage it can be quite basic and often there is already a great deal going on which sustains and enriches the person’s spiritual journey. We then ask the family to keep a diary so that this plan and MAP can be supplemented, if you like fleshed out a bit, and so that specific changes can be made if they are required. We use, what’s known as, action research as our research mode. This means that we find out what’s going on, agree any actions and then monitor them – all as part of the research model.

We are doing this research with various families and organisations across the country. We are finding that each group process is different. What is common to all is the willingness and the interest that families and friends have shown in this process. Our spiritual lives are so central to our being and our relationships that we feel this kind of approach should become much more widespread. If you would like to know more about this research please do contact me.

The project has now been concluded and the results are currently being writen up.

Intellectual Disabilities - A Participatory Action Research Approach

About

The project will enter into research partnerships with people who have Learning Disabilities in order to explore the role of religion and spirituality in their lives, with a view to developing effective educational materials and at the same time enabling the development of communities which can effectively meet the expressed spiritual needs of people with Learning Disabilities.

The study has the potential to open up improvements in the quality of life for people with Learning Disabilities by providing religious and non religious communities with currently unavailable resources relating to the meeting of their spiritual and religious needs. The structure, content and approach of the study also has the intention of helping to develop forms of community within which  people with disabilities are acknowledged, valued and accepted in every dimension of their lives: spiritual, didactical, relational and environmental (ie relating to the nature of the environment provided by religious communities).

A unique aspect of this study is that the insights and materials that will be produced will emerge directly from the experiences of and according to the wishes of people with Learning Disabilities who will be viewed as co-researchers throughout the project. As well as enabling access and inclusion, the project will provide theological and practical insights which will be of great benefit to religious and non religious communities.

Research Aims

The project aims to achieve the following:

  • develop new practical knowledge and understanding of the role of religion and spirituality in the lives of people with Learning Disabilities and how this relates to religious and non religious communities, and to use this to develop, implement and assess concrete practical strategies for enabling effective spiritual care and support
  • develop training/educational materials that will enable carers and support workers to understand, participate in (this adds in the personal spiritual growth that may occur), recognise and help to facilitate this dimension of the experience of people with Learning Disabilities. This may comprise of an educational handbook, a CD-Rom or it may comprise of a formal educational programme for individuals, groups and/or religious / non religious communities. The most effective method of delivery will be determined by the findings of the report
  • develop a method for mobilising religious and non religious communities to cultivate strategies, theologies and ways of being that will enable the full incorporation of people with Learning Disabilities
  • develop a deeper understanding of the essential role of disability within an ongoing study of ecclesiology and the vital role that the theology of disability has within the spiritual and communal development of religious and non religious communities as they impact upon wider society
  • contribute to the body of methodological literature that seeks to discover effective ways of communicating and researching with people who have Learning Disabilities

The project will challenge religious and non religious communities truly to become communities of resistance ie communities that have made a conscious decision to resist accepting culture’s devaluing assumptions about people with Learning Disabilities and its consequent failure to craft valued social roles that allow everyone to bring their gifts to their community.

This project has now been completed.

The Purple Bicycle Project

About

The Purple Bicycle Project provides a way of helping our most vulnerable people living within residential settings to find a sense of community, dignity and belonging and to have their spiritual needs recognised and met with and thoughtfulness compassion.

The Project is an empirically based person-centred spiritual care resource developed by Professor John Swinton and Dr Harriet Mowat from research funded by the United Kingdom’s Arts and Humanities Research Council. The Project brings together caring practices that are often found individually within organisations that care for older people. Its unique contribution is that these practices are presented as a linked process and expression of care and concern for the spiritual lives of people with dementia. This is a resource for everybody, not just for those who are religious. It helps us to understand one another more deeply. As we come to understand one another more deeply so we inevitably begin to care more compassionately.  The Purple Bicycle Project aims to help us all to create a better way of living together.  

The Spiritual lives of people living with dementia: finding good stories

This Project focuses on the spiritual lives and needs of people with intellectual or cognitive impairment. Currently the primary focus is on people with advanced dementia who are living in residential care. We plan to develop the programme to help meet the needs of people with profound intellectual disabilities in 2015.

Many of the stories that we tell about dementia are profoundly negative. The Project seeks to change the story and help us all to see that which is positive and which has potential even in the light of deep cognitive decline. The Purple Bicycle Project is a six step process which we describe as a kind of journey. As we travel along this journey, we gather together life story information, and along the way endeavour to help to create communities that can listen attentively to the stories told by people with dementia, their relatives, friends and carers. As the journey moves on so we are able to create new and positive stories that lead to new and positive forms of care and support.  These stories lead to new forms of action which leads to new possibilities for the person with dementia.

The Project gives the person with dementia, relatives and friends an opportunity to review and sustain relationships that are meaningful and sincere. It gives all of us together a chance to become actively involved in the shaping of the care plan for those we care for. It focuses on the present and future possibilities for the quality of life of the older person. The project aims to discover in the present those things that delight and encourage the older person.

The Spiritual task is to offer love, friendship, comfort and hope to each other in ways that are meaningful to the individuals concerned. The Purple Bicycle Project hopes to be a catalyst within this transformative process.

If you would like to know more about this project please contact Dr Harriet Mowat or Professor John Swinton.

Funding

The Centre is self-funding and receives no external public money. It generates income purely through research grants and donations from supportive parties. The Centre thus far has managed research projects funded by, amongst others:

  • The Scottish Executive
  • The Mental Health Foundation
  • Highland NHS Trust
  • The Foundation for People with Learning Disabilities.
  • The Church of Scotland
  • The Camphill Trust
  • The Jerusalem Trust
  • The Porticus Trust