A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia
Journal of Pediatric Nursing
School of Nursing and Midwifery
Perth Children's Hospital Foundation Project Grant # 9898
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.