The Visible Difference Parenting Toolkit: development of an ACT-based intervention to improve the well-being of parents and caregivers of children with appearance-affecting conditions and injuries

OBJECTIVES: Caregivers of children with appearance-affecting conditions or injuries can experience common psychosocial challenges, regardless of the cause or nature of their child's visible difference. Despite these common challenges, there is a lack of evidence-based cross-condition support for caregivers of children with visible differences. METHODS: A self-guided acceptance and commitment therapy-based e-book intervention was developed utilizing a Participatory Action Research approach. Twenty-two caregivers of children with a range of visible differences reviewed the full pilot e-book intervention and responded to an online acceptability survey. RESULTS: While several changes aimed at increasing the accessibility of the intervention materials were discussed, overall the feedback suggested that The Visible Difference Parenting Toolkit addressed an unmet support need. Both the content and the format of the intervention were found to be acceptable by parents, with ehealth Impact Questionnaire scores of >80. Participants recommended specific changes related to accessibility including adding features such as hyperlinks and a search bar to enable users to navigate the e-book. CONCLUSIONS: Caregivers reported that the content of The Visible Difference Parenting Toolkit was relevant to their lived experiences of caring for a child with a visible difference. Parents also reported that the presentation and format of The Visible Difference Parenting Toolkit was clear and accessible. The intervention addresses a previously unmet support need and is an acceptable intervention for caregivers of children with a visible difference.