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

Abstract

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.