"It goes against the grain" : a qualitative study of the experiences of parents’ administering distressing health-care procedures for their child at home

Background: Parents caring for children with complex and long-term conditions at home take on responsibility for technical health-care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role. Aims: To explore and understand parents’ experiences of administering distressing health-care procedures as part of caring for their child at home. Design: An explorative qualitative study. Methods: A purposive sample of parents who were currently carrying out, or had previously carried out, health-care procedures they thought their child found distressing was recruited. Data were collected using in-depth interviews and analysed thematically. Findings: Administering these procedures was not just a clinical task. That the procedures caused distress for the child meant there were additional issues to consider and address. A major issue for parents was being able to prevent or minimize their child's distress, which in turn was closely linked to parents’ own emotional discomfort in the situation. Parents also had to manage their child's physical and verbal resistance, their own emotional discomfort during the procedure, and the presence and reaction of siblings in the home. The types of support that were valued by parents included advice about managing their child's distress and resistance, occasional assistance with procedures, addressing the emotional aspects of the role, and adequate training and on-going supervision. Conclusion: The “added” challenges of assuming this responsibility have implications for the support of parents caring for ill children at home.                  