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A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia

Published:September 30, 2022DOI:https://doi.org/10.1016/j.pedn.2022.09.018

      Highlights

      • Parents who care for their children with medical complexity need support.
      • Support needs change over time and occur in recognisable phases.
      • Parents' support needs are similar despite the heterogeneity of their children's condition.
      • Interventions should be tailored to the changing support needs of parents over time.

      Abstract

      Purpose

      In a recent paediatric nursing research priority setting study, youth, parents and healthcare professionals included ‘practical and emotional support’ among the top ten areas to focus on. The aim of this study was to explore the support needs of parents who have a child with medical complexity living in the family home.

      Design

      Exploratory with a qualitative inductive approach.

      Methods

      Semi-structured interviews with 12 mothers of children living with heterogenous medical complexity. Interviews were recorded, transcribed and analysed using thematic analysis. The COREQ checklist was used as a reporting guide.

      Results

      Three themes were tied together by the finding that participants identified as ‘a parent first’. The first theme represents the early days where participants desired emotional and practical support for becoming a parent of a child with medical complexity. In the second theme, participants desired more support for the discharge home from the hospital. In the last theme, participants described high levels of knowledge and expertise in relation to their child's unique needs and desired highly accessible support for keeping their child out of hospital.

      Conclusion

      Parents' support needs change over time and are similar despite the heterogeneity of their children's medical complexity. Parents seek services that support an independent family life and are responsive to their confidence and competence in caring for their child at home.

      Practice implications

      Interventions should be tailored to the changing support needs of parents over time.

      Keywords

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