Untitled Document

The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers

E DAVIS PHD 1, A SHELLY 2, E WATERS 1, R BOYD 5,3,4,
K COOK 2, D REDDIHOUGH 6,3

1. McCaughey Centre, University of Melbourne, Melbourne, VIC, Australia;
2. School of Health and Social Development, Deakin University, Melbourne, VIC, Australia;
3. Murdoch Children’s Research Institute, Melbourne, VIC, Australia;
4. Paediatrics, University of Melbourne, Melbourne, VIC, Australia;
5. Queensland Cerebral Palsy and Rehabilitation Research Centre, University of Queensland, Brisbane, VIC, Australia;
6. Department of Developmental Medicine, Royal Children’s Hospital, Melbourne, VIC, Australia

Background/Objectives: Although increasing attention has been given to the QOL of children with cerebral palsy, much less attention has been given to the QOL of parents of children with cerebral palsy. Traditionally, studies examining the impact of care giving have focused on health, stress or depression. These variables may not capture the range of health and social dimensions that are affected. A more holistic and contemporary approach to understanding the impact of child disability on the lives of caregivers is to explore their QOL. Given that there no condition-specific questionnaire to assess the QOL of parentsw, qualitative research has the potential for exploring the impact of caring for a child with CP on parent’s lives. The aims of this study are to a) explore the QOL of mothers and fathers of children with CP aged 3-18 years and b) examine whether the impact of caring for a child with CP changes from childhood to adolescence.

Design: A qualitative study was conducted utilizing a grounded theory framework.

Participants and Setting: Twenty four mothers and 13 fathers of children and adolescents with CP aged 3-7 years (n=15), 8-12 years (n=10) and 13-18 years (n=12) and with varying levels of impairment (GMFCS level I=1, II=4, II=3, IV=5, V=12) were involved in the study.

Materials/Methods: Parents participated in semi-structured interviews about their QOL. The transcripts were analyzed to identify issues affecting parental QOL.

Results: There were no differences in parental QOL among sub-groups (i.e., mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP can negatively impact on parents in terms of demands on physical health, disrupted sleep, difficulty in maintaining social relationships, pressure on marital relationships, difficulty in taking family holidays, limited freedom, limited time, a child’s long term dependence, difficulty in maintaining maternal employment, financial burden, difficulty in accessing funding and insufficient support from services. Caring for a child with CP can also positively impact on a parent’s ability to build new social support networks and additionally, parents can draw inspiration from their children.

Conclusions/Significance: These results have significant implications for program planning and service delivery. A major concern for parents included difficulty in accessing funding and insufficient support from services. Parents indicated that more financial stability and better access to services would improve their QOL. Therefore, professionals who plan and deliver services must Endeavour to improve current programs whilst also finding new and innovative ways to meet the needs of parents. These results also have implications for the measurement of QOL of parents of children with CP. Given the range of issues identified by parents in this study, it appears that a generic QOL questionnaire may provide a somewhat limited picture of these parents’ lives.

 
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