Improving quality of life for carers

A new study has examined the wellbeing of caregivers – mostly mothers – of children with an intellectual disability and found a decreased quality of life compared to the broader Australian population.

The researchers found three key risk factors that increased the negative impact on quality of life: the amount of social support available, the degree of behavioural and emotional problems in the child, and the level of household income.

“These are important findings from a policy perspective because if you can implement programs that improve these areas, then you improve quality of life for the whole family,” says co-author Dr Sheena Arora from the University of Technology Sydney (UTS).

“Decisions around the provision of programs and services often only consider the impact on the child, and not the impact on the caregiver,” she says.

Approximately 4% of children aged 0-14 in Australia have an intellectual disability, with more than half having a severe or profound limitation where assistance or supervision is required for self-care, mobility or communication.

Intellectual disability affects a child’s learning and development, and can occur alongside disorders such as Fragile X Syndrome, autism and Down syndrome.

The study, by the UTS Centre for Health Economics Research and Evaluation, was recently published in the Journal of Intellectual Disability Research, with co-authors Professor Stephen Goodall, Professor Rosalie Viney and Professor Stewart Einfeld.

The researchers surveyed more than 600 caregivers of children aged between two and 12 with an intellectual disability to determine the impact on caregivers’ health-related quality of life, as well as risk factors that increased the negative impact.

“Many of these families face a wide range of challenges, including financial pressures, increased time demands and emotional stresses. This impacts their physical and mental health, as well as their social wellbeing,” says Dr Arora.

“Caregivers are responsible for the daily needs of the child and spend large amounts of time providing care, resulting in reduced workforce participation,” she says.

The research revealed that caregivers spend on average 67 hours per week caring for a child with an intellectual disability and 56% were not in any paid employment.

These families were also more likely to have difficulties paying gas, electricity or telephone bills on time compared to families in the general population.

The study showed carers often felt unsupported and experienced a lack of understanding from family and friends, with social isolation exacerbated by feelings of social stigma.

“This finding highlights the need to identify those at risk of feeling socially isolated and provide increased access to appropriate services such as family support groups and respite care,” says Dr Arora.

Interventions targeted at improving a child’s behavioural problems may also help caregivers. Skills training programs, parenting programs and family education services are examples of interventions that could make a difference to both parents and children.

Nearly 90% of the children in the survey had an additional disability. These were categorised into five areas: language disabilities, genetically acquired disabilities, sensory disabilities, physical disabilities and Autism Spectrum Disorders.

Caregivers of children with Autism Spectrum Disorders reported the lowest health-related quality of life of the five groups.

“We hope this study will provide a better understanding of the factors associated with caregiver quality of life to inform the design and delivery of services and make a difference for these families,” Dr Arora says.