Parental bereavement when a child with an intellectual disability dies

• Main Author: Reilly, Deirde Emer
• Published: Bangor University 2008
• Subjects: 155.937
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.445990

This thesis describes a series of studies investigating the experiences of parents whose child with an intellectual disability has died. Parental bereavement research has identified a range of symptoms exhibited in grief, and acknowledged that circumstances surrounding the loss may have an impact on symptoms exhibited. Little is known about the circumstances surrounding the death of a child with an intellectual disability. An extensive review of the literature (Chapter 2) uncovered a small number of qualitative studies with such an experience as their focus. Reports of disenfranchised grief, unsatisfactory healthcare, variations in coping strategies, and positive reflections characterised parents' accounts. The aim of the thesis was to use mixed methods to investigate the variety of parental experience when a child with an intellectual disability dies. In Study 1 (Chapter 3) Interpretative Phenomenological Analysis (IPA) was used to inspect nine mothers' accounts of the parenting and bereavement experience. Five themes emerged: loss; benefit finding; coping; sources of support; and medical relationships. Similar analysis of interviews with six bereaved couples of children with Down syndrome and a congenital heart condition (CHC; Chapter 4) highlighted differences that result when couples are faced by a bereavement. Four themes were extracted from the data: "One disastrous diagnosis after another"; "We had to make a decision"; "We weren't really going through it together"; and Ripples from the child's life. Quantitative analysis of the experiences of 38 mothers whose child with Down syndrome and a CHC died (Chapter 5) uncovered intense grief reactions alongside high levels of positive perceptions. Mothers with higher grief scores used more active avoidant coping strategies. Regression analysis indicated that the use of active avoidant coping and holding positive perceptions accounted for a significant amount of variance in total grief scores. Findings of these three studies are discussed in terms of their contribution to the literature, implications for policy and practice, methodological and theoretical limitations, and potential avenues for future research.