Coping with care-giving: Behaviour probelms in preschool children with developmental disabilities

Abstract

This thesis details the outcomes of a research project involving the development and evaluation of an intervention program designed to assist parents cope more effectively in their role of caring for their preschool-aged child with a developmental disability. Specifically, it airns to examine factors which contribute to parents' caregiving burden and stress, develop an intervention program to address these factors, and evaluate the efficacy of this intervention program. Over the past 7 years, the author has been involved in a University of Queensland research project focusing on parental care-giving of preschool-aged children with developmental disabilities. Initially, the project's aim was to examine those aspects of care-giving which posed particular difficulties for parents, and contributed to their caregiving burden and stress. The second phase of the project was to develop an intervention program designed to address the difficulties identified by parents. Thirdly, the project included conducting an evaluation of a behavioural family intervention (BFI) specifically designed for parents of children with developmental disabilities. The intervention program consisted of an adaptation of the Triple P - Positive Parenting Program (Sanders & Markie-Dadds, 1996) known as Stepping Stones Triple P (SSTP: Sanders, Mazzucchelli, & Studman, 2003a) as well as an adjunctive intervention known as Coping with Care-Giving (Sanders & Plant, 2002). The current research program assesses the effectiveness of SSTP which primarily targets difficult child behaviour, and examines whether the addition of an adjunctive intervention enhances parents' ability to cope with caring for a child with a developmental disability. The SSTP intervention includes individual consultation sessions with parents, as well as print and video materials that aim to promote positive, caring relationships between parents and children, and to help parents develop effective management strategies for dealing with a variety of common behaviour problems and developmental issues. The Coping with Care-Giving adjunctive intervention focuses on teaching parents about grief and loss issues associated with child disability, how to manage stress and other negative emotions, how to communicate effectively with professionals, how to manage their time effectively, and how to strengthen social support networks. Several reviews were undertaken pertaining to this program of research. The first, which is outlined in Chapter 1, discusses a conceptual framework for understanding parental care-giving, and identifies core constructs which are an integral part of the caregiving experience. Second, in Chapter 2, the prevalence and aetiology of childhood behaviour problems in children with developmental disability is detailed. In Chapters 3 and 4, behavioural family interventions for both typically developing children with behaviour problems and children with developmental disabilities and behaviour problems are reviewed. This includes evidence supporting the efficacy of interventions, and highlights the limitations of current research, particularly in relation to the use of BFIs for parents of children with developmental disabilities. The first study, detailed in Chapter 5, examines the extent to which difficulty of care-giving tasks, time involved in care-giving tasks, child problem behaviour, and level of child disability predict parent stress. In addition, the mediating effects of cognitive appraisal of care-giving responsibilities, and the moderating effects of positive coping strategies and social supports are explored. Chapter 6 outlines the second study which involves a randomised controlled trial examining the efficacy of Stepping Stones Triple P - Standard (SSTP-S) and Stepping Stones Triple P - Enhanced (SSTP-E) in comparison to a waitlist control condition (WL). Finally, in Chapter 7 primary outcomes of the research project are discussed, and recommendations for future directions are outlined. This program of research provides an evidence-base for improving future early intervention services to families of preschool-aged children with developmental disabilities. Also, it advances our understanding of the factors influencing parents' ability to effectively fulfil their care-giving role. The research had the following specific aims: 1. To examine the extent to which difficulty of care-giving tasks, time involved in care-giving tasks, child problem behaviour, and level of child disability predicts parent stress. 2. To explore the mediating effects of cognitive appraisal of care-giving responsibilities, and the moderating effects of positive coping strategies and social supports on parent stress. 3. To evaluate the efficacy of BFIs (SSTP-S and SSTP-E) for parents of preschool-aged children with developmental disabilities and problem behaviours in comparison to a waitlist control group (WL). 4. To examine if the addition of enhanced training (SSTP-E) aimed at assisting parents to cope with their care-giving role produces more positive outcomes than standard behavioural parent training intervention alone (SSTP-S). 5. To provide recommendations, based on outcomes of this research program, regarding future availability and dissemination of BFIs to families of preschool-aged children with developmental disabilities.