JMIR Publications

ABSTRACT

Background:

Online support groups have become vital for families managing chronic childhood conditions like congenital adrenal hyperplasia (CAH), a rare genetic disorder requiring lifelong care. These platforms offer health information and peer support, helping parents cope with the emotional, cognitive, and social demands of caregiving. While widely used, their impact on parental adjustment-especially in cognitive, psychological, and social domains-remains underexplored. Additionally, little is known about how mothers and fathers differ in their use of and response to these resources, despite evidence of distinct coping strategies. This highlights the need to examine how virtual communities support caregiver adjustment, with attention to gender-specific experiences.

Objective:

This study aims to assess the perceived benefits of online support groups in parental adjustment across cognitive, psychological, and social domains, and to examine gender-specific challenges faced by mothers and fathers of children with CAH.

Methods:

We employed a quantitative cross-sectional design, utilizing an online survey distributed to parents of children with CAH. Participants were recruited exclusively through the Facebook group CAH Parent Support - The MAGIC Foundation. The survey included a validated adjustment scale, to measure parental adaptation across three domains: cognitive (disease understanding), psychological (emotional resilience), and social (community engagement). Quantitative data were analyzed descriptively, with independent samples t-tests conducted in SPSS to assess gender differences.

Results:

Among 197 surveyed parents (32 fathers, 165 mothers), overall adjustment was high (mean=4.38, SD=0.43). Cognitive adjustment scored highest (mean=4.49), followed by psychological (mean=4.42) and social (mean=4.28). Fathers showed greater psychological resilience (mean=4.47 vs. 4.41) but lower social adjustment (mean=4.00 vs. 4.31), with gender differences significant (P<.05). Findings highlight the benefits of online support groups in enhancing knowledge and emotional support, while revealing the need for gender-sensitive strategies to support fathers’ social integration and mothers’ psychological well-being.

Conclusions:

Online support groups play a key role in helping parents of children with CAH adjust, especially by enhancing disease knowledge and caregiving confidence. However, gender differences were evident: fathers showed more psychological resilience but weaker social ties, while mothers had stronger social networks but greater stress. These findings highlight the need for gender-sensitive support-such as social connection initiatives for fathers and stress-reduction resources for mothers-to ensure more balanced, inclusive caregiver support.