Keilty et al. - 2018 - Experiences with unregulated respite care among family caregivers of children dependent on respiratory technologies

Last modified by Hendrick Guerra on 2019/04/12 16:16


Keilty et al.








 Journal Article - Qualitative Cross Sectional Study


 Explore experiences of parents of children with chronic respiratory conditions who have used unregulated respite (‘informal’ providers such as family members, nannies and students) to provide complex care at home for their child with a chronic respiratory condition. 

Main goal was to build family capacity by helping parents identify workable respite solutions based on their family strengths, family needs and available community resources

Key Notes/Findings:

  • Family caregivers identified a preference for unregulated providers who are selected by, and/or already known to, them and their child through engagement in everyday life
  • Described advantages of using unregulated providers:
    • Flexibility in services and their willingness to adopt the mothers’ care preferences
    • Adhered more closely (than regulated providers) to parental instructions and wishes
    • Were more willing to learn from parents
    • Were accountable directly to the parents
    • Offered help on parents’ terms
    • Could be trained for specific tasks
    • Providers were not as limited in the type of tasks that they were allowed to perform
    • Parents had greater control over their hours
  • Challenges:
    • Lack of systemic resources to support and sustain unregulated care in the home
    • Discrepancies and gaps in respite funding for unregulated providers
    • Training unregulated providers was expected to be carried out by parents


Keilty K, Nicholas D, Selkirk E. Experiences with unregulated respite care among family caregivers of children dependent on respiratory technologies. Journal of Child Health Care. 2018 Mar;22(1):46–56. Available from:

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