Forming a comprehensive picture of families’ perceptions and experiences of supporting a bereaved family member with intellectual disability Laura Douglas1, Suzanne Guerin1, John McEvoy1,2, , Karen Lockhart3 & Philip Dodd1, 3 1UCD Centre for Disability Studies/School of Psychology, 2Midway Services, 3St Michael’s House

Background

• With the increasing life expectancy of people with intellectual disability (PWID, Ryan, McCarthy & Graham, 2012) and the higher volume of PWID living in the community (Carrigan, 2011) this group are more likely to experience family and parental death.

• This can have implications for future care planning as PWID may have to cope with altered living arrangements while simultaneously grieving the death of a loved one (Ryan, McCarthy & Graham, 2012).

• Dodd et al.’s (2005) systematic review on PWIDs’ grief responses post bereavement found that the psychiatric illness and emotional and behavioural changes increased following bereavement of a loved one.

• Bowlby’s (1980) work on attachment tells us that parents, in most cases being the primary caregivers of their children, are extremely important figures in their development.

• The death of a parent, as opposed to another loved one, has been linked with an increased likelihood to result in severe psychological distress (Marshall, 2004).

• Surviving family carers may have to support a FMID through the bereavement of a family member, at a time when they themselves are bereaved.

• Therefore it is important that we understand the repercussions grief can have on PWID and the family members who support them.

Phase 1 • The research question is ‘What is the

content and nature of research on familial perspectives of parental bereavement in individuals with intellectual disability?’

• We searched the databases PsycInfo, PubMed and CINAHL using the search terms:

‘Disab* OR mental retard*’ in Abstract AND ‘intellectual OR learning’ in Abstract AND ‘bereave* OR death OR dying in Abstract AND ‘famil* OR parent* OR sibling* OR uncle* OR aunt*’ in Abstract. • The authors are currently applying a

systematic review analysis framework to 14 articles identified by the search.

Phase 2 • Qualitative interviews will be

conducted with family members regarding their experiences supporting their FMID who have been parentally bereaved.

• Participants will be family members of PWID who have experienced the death of a parent no less than 6 months and no more than 24 months previously.

• Participants will be asked to complete the Complicated Grief Questionnaire for Intellectual Disability (CGQ-ID, Guerin et al., 2009) on behalf of their FMID. This is an assessment tool for complicated grief symptoms specifically designed for PWID.

• Interview data will be audio recorded and transcribed. Data will be analysed as per Braun and Clarke (2006).

Methodology The methodology for this study is twofold. Phase 1 is a systematic review of published literature. Phase 2 consists of qualitative interviews with family members.

Conclusion • It is hoped that upon completion of this project we will have a comprehensive review of all the literature has to say on families’ perceptions and

experiences of family bereavement in relation to PWID. • In addition we will have given voice to families who have experienced having a FMID and subsequently supporting them through losing a parent. This

qualitative report will inform practitioners as to best practice not only when supporting PWID whose mother or father dies, but also when interacting with and supporting with their families.

References • Bowlby, J. (1980). Loss: Sadness & depression. Attachment and Loss (vol. 3). London: Hogarth Press. • Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77 – 101. • Carrigan, N. (2011) Deinstitutionalisation – time to move on to legislation. Irish Journal of Psychological Medicine, 28(4), 182 – 184. • Dodd, P., Dowling, S. & Hollins, S. (2005) A review of the emotional, psychiatric and behavioural responses to bereavement in PWID. Journal

of Intellectual Disability Research, 49(7), 537 – 543. • Guerin et al. (2009). An initial assessment of the psychometric properties of the CQQ-ID. Research in Developmental Disabilities, 30, 1258 –

1267. • Marshall, H. (2004). Midlife loss of parents: The transition from adult child to orphan. Ageing International, 29(4), 351 – 367. • Ryan, J., McCarthy, J. & Graham, M. (2012). How clients cope with the death of a parent. Learning Disability Practice, 15(4), 4 - 18.

John has a sister named Alice.

Alice has an intellectual disability.

Alice goes to Saint Michael’s House day

service.

Their dad dies.

One year later, I talk to John about how he

and Alice are doing since their dad died.

I ask John about:

Where Alice lives

Funerals

Sadness

Who they can talk to for help

Laura Douglas, MLitt Student, School of Psychology, University College Dublin, Ireland.

Email: laura.douglas@ucdconnect.ie

Thanks to Tom Burke, who was involved in the original development of this project.

Poster presented at 4th IASSID Europe Conference July 2014

The Present Study The aims of the present study are to: Systematically review the content and nature of the research literature which exists

on family perceptions and experiences of bereavement for PWID. Use qualitative interviews to explore the first hand experiences of family members

who have supported a FMID who has been parentally bereaved.

OUR PROJECT