| Description |
The purpose of this study was to explore and describe factors related to use of Internet parent support groups (IPSG) by primary caregivers of a child with special health care needs (CSHCN) at home. The Transactional Model of Stress, Coping and Adaptation was used as a framework for developing an Internet survey which was completed by a sample of 114 primary caregivers, caring for 140 CSHCN, using over 100 different Internet parent support groups. Power analysis for correlations with a moderate effect size required a minimum sample size of 85 (alpha = >.05, beta = .80). Retrospective self-report was in the form of both narrative and Likert type ratings. Outcome variables included perceived satisfaction, social support, change of view, positive and negative emotion, somatic health, physical functioning, family relationships, and wellbeing. The typical participant was a White, well-educated American mother in her late 30s caring for a 3-year-old male with a chronic disability. Participants used a variety of coping strategies, but unusually high optimism scores may have skewed perceptions. The top two motives for seeking online social support were "to get usable ideas" (99%) and "to help others" (94%). The majority not only obtained what they sought, but found more than expected in terms of insight and people to trust. The highest ranking sources of emotional support were family (52%), with IPSGs as a strong second. Strongest relationships (p > .001) with satisfaction were finding people to trust (r > = .44) and improved caregiver-CSHCN relationship (r = .42). Finding people to trust was more powerfully related to positive feelings than any other type of support. The top three things having the most long-lasting effect on wellbeing were finding people with similar circumstances (79%), receiving guidance and information (59%), and understanding and acceptance. The majority agreed their viewpoint changed with IPSG use (64%). IPSGs primarily generated positive feelings, especially hope (87%). They were associated with improved physical functioning (73%), mostly did not interfere with sleep (61%), or result in neglect of the family (68%). Caregivers recommended participating in an IPSG as soon as possible, and many recommended belonging to more than one. It appears that IPSGs may be an important adjunct for social support for primary caregivers of a CSHCN, but further research is needed to establish their efficacy and function. |
