Service use and health outcomes among parents with children or a partner with disability

Service use and health outcomes among parents with children or a partner with disability

15 April 2021

This short article presents research on adult family carers’ health and social wellbeing with implications for practitioners supporting parent carers.

This is the third short article in a series focusing on disability in Australia. This article discusses research on adult family carers’ health and social wellbeing, and briefly outlines the implications for practitioners.

Introduction

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.

What’s the research about?

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.1,2 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.

What are the main findings?

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.

Mental and physical health impacts of caring

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.

Family-level service use in past year††

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.

What do the findings mean?

Many parent carers face barriers to accessing family support services (e.g. lack of time and reluctance to use services for their own needs)3 and also report a high degree of unmet needs for various services (e.g. respite care, case management and coordination).4,5,6 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.7 Resources are listed below to support practitioners and parents to address these barriers and meet carer needs.

How will you use the evidence or information in this short article in your work? We would love to hear from you in the Comments field below.

A disability was characterised as intellectual if a child experienced the following medical conditions or disability lasting or likely to last for more than 6 months: difficulty learning or understanding and/or any mental illness for which help or supervision is required.

†† The survey data was collected in 2016 before the National Disability Insurance Scheme (NDIS) was available in most parts of Australia.

Further reading and related resources

  • Carer Gateway
    This website for carers provides information and advice, online support and access to services in the carer’s local area.
  • Carers Australia
    Carers Australia works to improve the health, wellbeing, resilience and financial security of carers, providing national programs, support and services for carers across Australia.
  • My Time
    This website provides local support groups for parents and carers of children with disability, developmental delay or a chronic medical condition.
  • Caring for families caring for a person with a disability
    This resource provides information and a range of resources for practitioners supporting families

References

1. Muir, K., Tudball, J., & Robinson, S. (2008). Family resilience where families have a child (0–8 years) with disability: Final report (SPRC Report 10/08). Sydney: Social Policy Research Centre, UNSW.

2. World Health Organization. (2011). World report on disability 2011. Geneva, Switzerland: WHO.

3. Gilson, K. M., Davis, E., Johnson, S., Gains, J., Reddihough, D., & Williams, K. (2018). Mental health care needs and preferences for mothers of children with a disability. Child Care Health and Development44(3), 384–391.

4. MacIntyre, G., Stewart, A., & McGregor, S. (2019). The double‐edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities32(6), 1523–1534.

5. Burton-Smith, R., McVilly, K. R., Yazbeck, M., Parmenter, T. R., & Tsutsui, T. (2009). Service and support needs of Australian carers supporting a family member with disability at home. Journal of Intellectual and Developmental Disability34(3), 239–247.

6. McConkey, R. (2005). Fair shares? Supporting families caring for adult persons with intellectual disabilities. Journal of Intellectual Disability Research49(8), 600–612.

7. Davis, E., & Gilson, K. M. (2018). Paying attention to the mental health of parents of children with a disability. Melbourne: Australian Institute of Family Studies. Retrieved from aifs.gov.au/cfca/2018/10/15/paying-attention-mental-health-parents-children-disability


Featured image: © GettyImages/SDI Productions

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Authors

Neha Swami

Dr Neha Swami is a Senior Research Officer in the Longitudinal and Lifecourse Studies team.

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