Information provision to caregivers of children with rare dermatological disorders: an international multimethod qualitative study.

Objective: To identify service-provided information needs among dermatological caregivers of patients living with ichthyosis.

Design: This is the first online international qualitative study to explore caregiver-reported service-provided information needs, using transnational focus groups (n=6), individual interviews (n=7) and in-depth emails (n=5). NVivo facilitated the coding process and Framework Analysis was applied.

Setting: Caregivers were recruited through two online ichthyosis support groups and resided across 10 countries and 5 continents (USA, Greece, Netherlands, Ireland, UK, Canada, India, Philippines, Switzerland and Australia).

Participants: A purposive sample of 8 male and 31 female caregivers participated (mean age range 35-44 years). Participants were aged 18 years old or older and fluent in English. Participants cared for a total of 46 children (1:1 ratio for child gender and clinical classification of disease severity). Participants represented all stages along the care continuum, including neonatal intensive care unit and bereavement.

Results: This study advances understanding of how to optimise information-sharing across hospital, community and online settings at three points along the care continuum (screening, active caregiving and survivorship). Timely, personalised and appropriate service-provided information support was considered key in influencing the self-efficacy, coping ability and psychosocial well-being of both the caregiver and their child. The modification of information support, through feedback loops, can result in a different bidirectional psychosocial impact for the caregiver and the affected child.

Conclusion: Our findings provide a novel insight into how existing gaps between caregiver expectations and needs, in terms of information support, can be addressed. As information support is a modifiable factor, improved healthcare education around these themes should become an urgent public health matter to inform future educational and psychosocial interventions.