Profile and Impact of Participating in a Parent Support Group in Latin America

Background:  Parent support groups (PSGs) have been shown to be an effective coping mechanism for parents of children with disabilities, reducing stress and improving quality of life. PSGs related to ASD in Latin-America have been instrumental in the development of research, resources, and advocacy, playing major roles in policy and awareness campaigns. Only a few studies have investigated the profile and impact of participating in ASD-specific PSGs, and mostly in North America. 

Objectives:  The objective of this study is to describe the profile of Latin-American families affected by ASD participating in PSGs compared to those not in PSGs, and to analyze the possible impact of being in a PSG in the Latin-American region on quality of life, access to services and attitudes towards stigma.

Methods:  A needs survey for caregivers of people with ASD was performed in the Latin-American Region between 2015-2016 by the Red Espectro Autista Latinoamerica (REAL). 2965 families were surveyed in six Latin-American countries using the Autism Speaks Caregiver Needs Survey. The profile and impact of participating in a parent/family association was analyzed in this sample, considering: demographic characteristics, subjective quality of life, access to resources, satisfaction with services, and perception of stigma.

Results:  Twenty-seven percent of survey respondents across countries reported having a family member who currently participates in a PSG. Participating in a PSG showed a very significant association with having more access to services; 29% of people not in PSGs reported receiving no services or treatment for the person with autism, while only 14% of the PSG group reported the same. Meanwhile, more than half of the PSG group reported receiving 3 or more types of services or treatment (compared to only 37% in the non-PSG group).

PSG involvement was also associated with fewer feelings of impotence and less perception of stigma; however, caregivers in the PSG group reported more financial impact of having a child with autism.

More people participating in PSGs had children in the 6-11 age range, and with lower level of functioning. No significant differences were found in sex, language level, cognitive level, problem behaviors or educational level of caregivers.

Conclusions:  PSG participation showed a strongly significant association with access to services. Other factors that could be affecting access to services, like educational level of caregivers or distance from site of diagnosis, did not show significant differences between groups. Participation in PSGs might increase awareness of community prejudices and the existence and efficacy of treatments.

People in PSGs report fewer feelings of impotence and less concern about people knowing about their child’s diagnosis, but are more conscious of the possibility of discrimination. Participating in a PSG might be a way of actively coping with having a family member with ASD.

PSGs have an important role for families in Latin-America, shown not only by the amount of families reporting participation, but also by the concrete benefits regarding access to services, feelings of empowerment, and more optimistic perceptions towards having a child with ASD.