Exploring the role of extended family members in relation to a chronic family stressor : explicating the association between support, standards, stress, and coping in the context of autism

Abstract

[ACCESS RESTRICTED TO THE UNIVERSITY OF MISSOURI AT AUTHOR'S REQUEST.] The recent growth in autism spectrum disorder diagnoses across the United States has alerted scholars to assess the support needs of families with a child on the autism spectrum. One potential large support resource that has been deemed both supportive and unsupportive is the extended family. Much remained to be explored regarding the degree to which communication, particularly in the face of a child's developmental disability, sustains or impedes (extended) family relationships. Therefore, from the perspective of the parent with a child with autism, the current investigation explored the communicative role, including the standards being met and the level of support, of three extended family members in relation to autism. This study drew upon Family Systems Theory with special emphasis on the extended family, literature related to support and relational standards, the Communication-Based Model of Coping (Maguire 2012; 2015), and utilized mixed methods, including content analysis and structural equation modeling. Survey results revealed that parents (n = 191) of a child with autism hold their extended family to certain standards, namely, they ideally want emotional/instrumental support, openness, acceptance, empathy, and positivity. Further, the types of support that parents find the most helpful include tangible, informational, esteem, emotional, appraisal, network, avoidant, child esteem, and social presence, unlike inconsiderate and unaccommodating support. Importantly, parents in this study reported that they do not have any of their standards met in full by their three chosen extended family members. Having all standards go unmet impacts their relational satisfaction, specifically with their first most significant extended family member. Further, having some standards go unmet by their second and third most significant extended family members negatively impacts parents' problem-solving abilities and stress level, but positively impacts their reappraisal ability. Together, these findings offer three contributions: (a) a better understanding of the degree to which parents with a child with autism perceive that their extended family members are meeting their standards, (b) a clear examination of how perceived and actual standards interplay with their relational dynamics, coping ability, and stress level, (c) and a thorough understanding of the ways in which communication from extended family ranges in supportiveness to a parent raising a child with autism.