Date of Award

2015

Document Type

Open Access Dissertation

Department

College of Social Work

Sub-Department

Social Work

First Advisor

Arlene Bowers Andrews

Abstract

This short-term longitudinal qualitative study used grounded theory methods to explore how parents of children with autism spectrum disorder (ASD) benefit from one-to-one support (P2P), factors affecting success, and how these relationships evolved. In-depth interviews were conducted with 6 staff, 12 referred parents, and 11 support parents.

Most referred parents found P2P helpful, deriving informational/practical, emotional, and a few social benefits. Six interrelated factors affected success including a) parent-support relationship; b) program level; c) support parents’ experiences with P2P and the disability community; d) practical/logistical factors; e) psycho-emotional factors; and f) referred parents’ expectations relationship program level. The relationship was the most crucial factor, and both parents perceiving similarity was the central process leading to success. These six factors affected the helpfulness by facilitating or inhibiting matched pairs’ ability to perceive and use similarity to meet referred parents’ needs.

Perceiving similarity contributed to helpfulness by fostering emotional connection, causing both parents to see the support parent as a credible helper and to open up to each other. It enabled the support parent to understand concerns, provide useful information, and be a non-stigmatizing source of social interaction.

Matching referred parents to someone with similar but longer experience with their type need and children’s functioning was critical to both parents perceiving similarity and subsequently to the match’s success. Also, training and support parents’ P2P experience gave them the relationship skills to communicate similarity, build rapport, and use their lived experience to meet their referred parents’ needs.

Mutual openness was essential for perceiving similarity and meeting referred parents’ needs. Parents’ choices about making contact, what they disclosed, and how they responded to each other’s disclosures affected the success of the match. This was important because the benefits of P2P accrued from the mutual exchange of information and stories that allowed referred parents to conduct social comparisons to their support parents. Comparisons to parents who had similar difficulties but had experienced improvement provided hope, normalized their experiences, validated their emotional reactions, reduced their sense of isolation, and yielded practical information for problem-solving. Both parents continually assessed similarity and each other’s relational qualities. Referred parents chose to continue contact and accept assistance when they perceived support parents as similar, open, genuine, non-judgmental, and empathic. Their readiness was also a major factor influencing them to disclose and accept help. Support parents chose to continue offering help based on referred parents’ receptiveness. Practical issues such as busy lives, along with poor emotional well-being undermined success by preventing contact. Also, incongruence in parents’ expectations for the match was a barrier to success.

Most relationships were short-term, remained primarily unidirectional with support parents providing support and referred parents receiving support. Over time, contact decreased in frequency and length but was increasingly initiated by referred parents.

Overall, the findings suggest that P2P can be a viable approach for providing support to parents of children with ASD. Implications for optimizing beneficial outcomes and advancing research are discussed.

Rights

© 2015, Nina Nelson

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