For families with a member with disability, parent carers may prioritise the needs of the family member with disability over their own. In order for families to thrive, parent carers need support to maintain their own wellbeing while continuing to care for their family member. This short article presents the findings from Australian research about the health and wellbeing outcomes of parent carers and provides strategies to guide practitioners working with parent carers.
Families with a member with disability have a wide range of strengths and capabilities but may experience poor health outcomes and lack of social support. While much is known about the characteristics of people with disability and the challenges they face, less is known about parent carers. This research identified health and wellbeing outcomes experienced by parent carers while providing care, as well as their use of support services.
Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) is a nationally representative cohort study that has followed over 10,000 children from birth (B cohort) and age 4–5 (K cohort) since 2004. Every two years, these children and their parents answer questions about their health and wellbeing, relationships and school experiences.
Data from both LSAC cohorts in 2016 (B cohort aged 12–13 and K cohort aged 16–17) were used to examine outcomes of parents living with a child/ren or a partner with disability. Around one in 12 families (8%) had at least one parent with disability and just under one in 25 families (4%) had a child/ren with disability. Families with a member with disability were more likely to be jobless, have lower weekly parental income and more likely to be headed by sole parents, compared to families without a member with a disability.
The data showed that having a child/ren with disability is associated with significantly higher psychological stress for parents. Around twice as many parents with a child/ren with disability reported moderate to high psychological stress compared to parents without a child with disability.
Women with either a child/ren or a partner with disability also reported poorer physical health outcomes (22–25%) and lower access to emotional support (score of 3.6 out of 5) than women without a partner or a child with disability (poor physical health outcomes: 13%; access to emotional support: 4 out of 5). There were no significant differences in physical health and emotional support between men whether or not they had a child/ren or a partner with disability.
There was no difference in a mother’s mental health or physical health by the type of disability their child had. Approximately one in three (33%) of mothers with a child with any type of disability reported moderate to high psychological stress; around one in four (25%) of mothers with a child with any type of disability reported poor physical health. There was also no difference in reported access to emotional support for parents based on children’s type of disability.
Around one in three families with a child/ren with disability and around one in 10 of families with parent/s with disability reported using disability services in the 12 months prior to being interviewed.
For other support services, around one in five families with a child/ren with disability reported using adult mental health services and less than one in 10 used family support groups. For families with a parent/s with disability, one in 10 of families reported using adult mental health services and less than one in 20 used family support groups.
Many parent carers face barriers to accessing family support services (e.g. lack of time and reluctance to use services for their own needs) and also report a high degree of unmet needs for various services (e.g. respite care, case management and coordination). Without a family-based approach to support, many critical needs of parent carers can be unmet.
Practitioners with an ongoing relationship with the family are in a unique position to work with parent carers to provide support. However, to effectively implement any family support strategy, practitioners need training in identifying issues and engaging early with parent carers to understand their service needs and how and where to connect families with other support agencies.
This study also suggests that compared to fathers, mothers caring for partners or children with disability report poorer health outcomes, but only a very small proportion of them seek help. Therefore, being attentive to the support needs of mother caregivers could ensure that they have access to appropriate support and information. Resources are listed below to support practitioners and parents to address these barriers and meet carer needs.