The types and functions of social supports used by parents caring for a child with autism spectrum disorder
Author(s): Shepherd, D., Goedeke, S., Landon, J., and Meads, J.
Published In: J Autism Dev Disord, Apr; 50(4):1337-1352
Study Aim/Purpose: The purpose of this study was to document the kinds of social support used by parents caring for children with autism spectrum disorder (ASD) and to understand how they characterize the benefits and effectiveness of these supports for them as caregivers.
Summary of Methods: The study design was cross-sectional, utilizing an online survey with parents recruited via email and Facebook posts. Only volunteers who had a child with ASD living with them and residing in New Zealand were included in the study. The study sample included 674 parents, with parent age ranging from 23 to over 70 years, with a mean of 43.91 years, and their children’s age ranging from 2 to 47 years, with a mean age of 11.69 years.
In addition to questions about child and parent characteristics, the survey asked parents to document whether or not they used any of 14 types of social supports, including 9 formal supports, 4 informal supports, and social media. The categories of formal supports included several government-funded programs that provide financial support and/or referrals for health, special education or other related services, national autism organizations, respite services, general practitioners, private therapists, and teachers (mainstream or specialized educators). The categories of informal supports were: partners/spouse, immediate family (parents/siblings), other relatives, and close friends. Parents were asked several questions about the function and effectiveness of the supports used. For each support used, respondents were asked a short series of questions to categorize the function of that support for them as “tangible”, “emotional”, “financial”, and/or “informational”. To assess the support’s perceived effectiveness, respondents were asked to rate whether it was a substantial source of support for them and if it reduced their parenting stress.
Summary of Results: Across the nine formal support types, three government-funded services ranked as the most utilized. Formal supports were used less often by parents of adolescents and adults compared to parents of young children with ASD. Among informal supports, spouses were the most frequently reported type of support used, followed by immediate family and then friends. Social media was listed as a source of support for approximately 45 percent of parents. The significant differences found related to support use and parental characteristics included: parents not currently in a relationship were more likely to utilize respite services and friends as support, but less likely to report support from school teachers; those with less education reported higher utilization of some of the government-funded programs and lower utilization of spouses as informal supports than those who went on to higher education; females were significantly more likely than males to use social media for support; and males were more likely to seek support from two of the government agencies and informal support from their spouse.
With regard to effectiveness, overall parents rated informal sources as more effective for them than formal support types. Within the group of informal supports, spouses received the highest mean ratings of support. Within the group of formal support types, private therapy was the exception, having the highest level of tangible and informational support among the formal supports used. Though it is noteworthy that private therapy was significantly more likely to be used by parents who attended university than those who did not, the authors point out that these parents may have more access to the financial resources to pay for this kind of support. While not as highly rated for effectiveness as informal supports overall, social media was rated the highest of all the support types for emotional support and equally as high as spouses for providing tangible and informational support.
Limitations of Study: The authors acknowledged that the sample overrepresents well-educated European females, thus limiting the generalizability of the study findings. They also note that the specificity of the formal supports studied to those offered in New Zealand may limit their study’s generalizability to other countries. Additionally, recruitment of study participants through Facebook groups of national ASD organizations may have limited study participation among parents of children with ASD who are not members of those organizations. Lastly, the authors suggest that the category of immediate family support as they defined it may have been too broad and could have different findings if it had been more narrowly defined to focus on the participant’s parents and children.
Authors’ Discussion/Conclusions: The study findings indicate that informal supports have greater functionality and value than formal supports for parents of children with ASD. The findings are also novel in demonstrating the benefits of social media platforms that involved virtual interpersonal exchanges for parents of children with ASD. Given the importance of information supports, the authors recommend that research is needed to understand how social supports are established, maintained and disrupted for this group of parents.
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