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• 2011

Poster presentation in Miami

Developing a Bereavement Tool for Intellectual Disabilities

Developing a Bereavement Tool for Intellectual Disabilities

(Click here for the conference review)

The attached poster was presented at the presented at the joint conference of the Association for Death Education and Counselling (ADEC) 33^rd Annual Conference and the 9^th International Conference on Grief and Bereavement in Contemporary Society.  The conference was entitled: Making Connections: Dying, Death and Bereavement in the Global Community, held at the Intercontinental Hotel, Miami, Florida, June 22-25^th, 2011. The poster abstract is below for your information.

Introduction: Loss is a universal experience but, for many, death is usually perceived as the ultimate loss. For the majority of people, loss is dealt with within the bereaved individual’s immediate social context, with help and support sought and found from friends, family and work colleagues (Worden, 2001). For a small percentage of people, there is the need for more specific professional help and support in the form of psychological support from psychotherapists or counsellors. However, for some groups of people, such help may be difficult to access and grief work can be left unsupported and unresolved. This applies particularly to those with intellectual disability (ID). More than 50% of people with ID  are recognised as having some form of communication impairment (Kerr et al, 1996), this may result in a limited ability to express and articulate their inner feelings and sadness. Additionally, some people may have difficulties in recognising; translating; regulating; and expressing emotions (McAlpine et al, 1991).This difficulty with verbal articulation of needs is one reason why there are currently no empirically tested assessment formats available to gauge and assess the need for bereavement support in people with ID.

We worked together with a small group of adults with an intellectual disability to develop a series of unique images for a computerised tool that would help people with intellectual disabilities to explore and express feelings related to loss and bereavement in an accessible format.

Aim: To introduce the process of designing suitable types / formats of images that could support bereaved people with Intellectual Disability (ID), as Phase one of a qualitative research study. Involving people with ID as co-developers was seen as essential to create appropriate materials because of the nature of the ID itself and the sensitivities of researching bereavement as a topic of enquiry.

Method: Action research was used by a collaborative research team to work alongside seven people with ID, an advocate and a creative designer, to explore the nature and content of the proposed tool over a six month time span. Further consultation with a range of professional carers in various health and social care contexts helped to refine the tool in readiness for more formal testing (Phase two).

Results: A draft software tool which enables the user, by combining images sequentially, to tell their own personal story in relation to loss, transition, death and bereavement, was developed. In addition a paper based story telling tool based on the Repertory Grid Technique (Kelly, 1955) was developed.

Conclusions: Working alongside adults with ID as co-researchers was a valuable experience that helped to shape the tool in a constructive and meaningful way (Read & Corcoran, 2009) in helping people to tell their stories of loss (Jennings, 2005). Involving people with ID within the research process can be difficult because it hasn’t been done enough to be perceived as easy, but the researchers saw this as being indicative to the research process. Many people with ID often want to share their experiences of loss and death (Todd & Read, 2010), but lack opportunities to do so. Phase one has been fruitful exercise in collaborative working to develop a flexible bereavement support tool that is more likely to be used in practice.

References

Jennings, S. (2005). Creative storytelling with adults at risk. Bicester, Oxon: Speechmark.

Kelly, G. (1955). The Psychology of Personal Constructs. New York: W. W. Norton.

McAlpine, C., Kendall, K & Singh, N. (1991). Recognition of facial expressions of emotiona by persons with mental retardation. Ameroican Journaof NMental Retardation, 96:29-36.

Kerr, M., Fraser, W., & Felce, D. (1996). Primary healthcare for people with a  learning disability. British Journal of Learning Disabilities, 24 (1), 2-8.

Read, S. & Corcoran, P. (2009). Research: A vehicle for listening and promoting meaningful consultation with people with an intellectual disability. The British Psychological Society: Quality Methods in Psychology Section, 8: 29-37.

Read, S. Nte, S., Corcoran, P. Stephens, R. (in press). Using action research to design bereavement software: Engaging people with intellectual disabilities for effective development.

Todd, S & Read, S. (2010) Perspectives on death and dying. Int J Child Health Hum Dev 3(2), 67-72.

Worden, J.W. (2001). Grief counselling and grief therapy: A handbook for mental health practitioners (3rd edit). London: Routledge.

Download a PDF copy of the Developing a Bereavement Tool for Intellectual Disabilities Poster