Caregiver Health Related Quality of Life (HRQoL) and the Regularity of Family Routines in Families Raising Children with Autism Spectrum Disorder (ASD) in the Western Cape: A Descriptive Study

Background:

Literature states that the health-related quality of life (HRQoL) of caregivers may be impacted by caring for children with Autism Spectrum Disorder (ASD). Aspects of family life reported to be affected by the presence of a child with ASD include caregiver social, physical & mental health, and family routines. However, limited research exists which describes factors affecting well-being in families raising children with ASD in South Africa, a middle-income country. Available published literature indicates a direct and positive relationship between the regularity of family routines and families’ satisfaction with their family quality of life for families of children with ASD living in South Africa. However, no studies have been conducted which describe the relationship between the regularity of family routines, and the health-related quality of life of caregivers who are raising a child with ASD in South Africa.

Objectives:

This study describes the HRQoL of caregivers raising children with ASD and the regularity of their family routines and explores the associations between these two variables.

Methods: A descriptive survey design was employed. Twenty-four parents of children with ASD participated in the online survey. The 36-Item Short Form Health survey (SF-36) was used to determine caregiver’s HRQoL and the Family Routines Inventory (FRI) to determine the regularity of family routines. These surveys, together with a demographic survey were distributed to parents via SurveyMonkey, an online survey tool.

Results:

Sub-scale and total scale data for 21 participants were analysed using descriptive and correlational statistics. Data were normally distributed. Data obtained from the HRQoL measure indicates that caregivers of children with ASD experienced low levels of energy/vitality (M=48.57, SD=5.55), emotional well-being (M=57.33, SD=5.14) role limitations due to emotional health (M=57.14, SD =8.70), and social functioning (M=61.50, SD= 9.19). There was a significant correlation between social functioning and general health [r = 0.484, n = 21, p = 0.026]; and between emotional well-being and energy/vitality [r = 0.738, n = 21, p = 0.000]. Data obtained from the FRI measure indicate that, of all the routines explored in the FRI, bedtime (M=0.72, SD=0.014)), and leisure routines (M=0.75, SD=0.718) are implemented with the least regularity. Workday (M=1.65, SD=0.491), leaving and homecoming (M=1.65, SD= 0.246)), child focused routines (M= 1.492 SD = 0.542) and mealtime routines (M= 1.546, SD= 0.445) occurred with more regularity. There was no significant correlation between participant scores on the FRI and the SF-36 [r = 0.195, n = 21, p = 0.199].

Conclusions:

This data indicate that ASD impacts on caregivers’ emotional well-being and social functioning, which are correlated with parents’ perceptions of their general health and levels of energy/fatigue. When implementing routine-based interventions in the home, clinicians should focus on embedding goals in routines which happen regularly. Surveys such as the FRI can be used to assist clinicians and families to identify these routines.