Impact on family quality of life for rural carers of children with disabilities

Background: There is limited information on the challenges faced by carers of children with disabilities in rural regions. This study explores a range of these issues in relation to impact on family quality of life (FQOL). Method: The study was conducted across rural northern New South Wales, Australia. In addition to demographic information, the questionnaire used contained two validated scales to measure family quality of life (FQLS) and behavioural issues (BFRS-R). The FQLS assesses the family’s perceived satisfaction with their quality of life. The scale contains items covering five aspects of FQOL; family interaction, parenting, emotional wellbeing, physical/material wellbeing and disability related services. The Behavior Flexibility Rating Scale-Revised (BFRS-R) assesses the extent to which various situations in the life of a child with disability causes behavioural problems. Results: Some 51 families of children with disabilities participated in the survey. A high proportion of families experienced moderate to severe behavioural issues associated with disability. A trend toward significant negative correlation between families’perceived quality of life and their behaviour rating of their child was revealed (Spearman’s r(17) = -0.44, p = 0.07). Each of the five domains of the FQLS were correlated using non-parametric methods. Scores on the BFRS-R were significantly negatively correlated with scores on the Family Interaction Domain (r(17)=-0.68, p = 0.002). Scores on the BFRS-R were significantly negatively correlated with scores on the Parenting Domain (r(17)=-0.54, p = 0.03). A significant negative relationship was revealed between scores on the BFRS-R and Emotional Well-Being Domain (r(17) = -0.68, p = 0.002). Conclusions: There are significant issues of poor quality of life for carers of children with disabilities associated with lack of available support, long waiting periods, inadequate respite programs and services being geo-graphically distant. There are implications of these issues for service provision in rural underserved areas.1 page(s