Family quality of life of caregivers of individuals with autism, with other disabilities, and without disabilities: the case of Saudi Arabia

The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.

There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities. Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information. The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy. Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health. Show more

Parental depression was assessed using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), and in 214 control families. Mothers with children with autism had higher depression scores (mean = 11.8) than mothers of children with ID without autism (mean = 9.2), who in turn, had higher depression scores than fathers of children with autism (mean = 6.2), fathers of children with ID without autism (mean = 5.0), and control mothers (mean = 5.0) and fathers (mean = 4.1). Forty-five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression scores (BDI > 9), compared to 15-21% in the other groups. Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner. Show more