Leisure and Social Participation and Health-Related Quality of Life in Caregivers of Children with Autism

Abstract

The objective of this cross-sectional study was to compare health-related quality of life (HRQoL) in mothers of children with autism spectrum disorders (ASD) with a norm-based sample. An additional aim was to examine the relationship between engagement in leisure and social occupations and HRQoL in mothers of children with ASD. Thirty-three mothers of children with ASD, between 27 and 49 years of age, participated. Study participants between the ages of 35 and 44 years reported poorer mental HRQoL than a national sample, but comparable physical HRQoL. Findings also revealed inverse correlations between participation in hobbies and community/education activities and physical HRQoL (e.g., participation in hobbies and community education/activities increased as physical HRQoL decreased). The mental HRQoL of caregivers of children with ASD is lower than that of the general population, suggesting the need for occupational therapists to include psychosocial screening and referral for this group in their practice. In addition, results suggest that the relation between participation and health is complex, warranting further investigation.

Quality of life interventions for primary caregivers of children with autism spectrum disorder: a scoping review

“…For example, networking with other PCGs as a form of support and stress management which is incurred from raising a CASD (Bromley et al, 2004;Estes et al, 2009). The ongoing care of the CASD requires PCG and family members to make constant changes and accommodations which aid towards the improvement of QOL for the CASD and overall family functioning (Rizk, Pizur-Barnekow, & Darragh, 2011;Gurayah, 2017). The characteristics of ASD, such as poor communication, difficult behaviours, and limited reciprocal signs of affection towards the PCG, may be the source of the PCG challenges, frustrations, and stress.…”

“…The studies reflecting the theme "getting the support I need" included opportunities to meet and share with other PCG. Sharing difficulties and successes allow PCG to gain support and a perception that they are not alone in their struggles which promotes mental health and well-being (Ekas et al, 2010;Lu et al, 2015;Rizk et al, 2011). The studies reflecting the theme "getting the 'know how' to care for myself" included activities such as management strategies for self and family, goal setting, and stress management.…”

Families referred to a Child Assessment Team: The Campbelltown experience

“…13 Mothers of children with autism spectrum disorders have been found to have significantly poorer mental health than the national sample. 14 Whittingham et al further demonstrated a relationship between child behavioural problems and parental psychological symptoms and experienced parenting burden. 15 For any family, a diagnosis of child disability is stressful, 16 and is best done with care in a supported setting and with adequate time 17,18 and consideration for the family's situation and understanding of their child's difficulties.…”

“…Amber Havens found that having a child with a disability can ‘drive families apart or into a state of chronic stress or crisis’ . Mothers of children with autism spectrum disorders have been found to have significantly poorer mental health than the national sample . Whittingham et al .…”

The Research on Anxiety and Depression in the Parents of Children with Autism and Relevant Policies

“…Positive cognition level of mothers of children with autism is lower than mothers of Down's syndrome or mentally retarded children's [5,6]. The parents of children with autism suffer from greater pressure [7,8], more anxiety and depression [9][10][11], compared with normal children's. Zhang et al proposed that parents are the first resource for rehabilitation of children with autism [12].…”