Parents' experiences of transition from hospital to home of a child with complex health needs: A systematic literature review

Aims and objectives: To critically appraise primary research on the views and experiences of parents of children with complex health needs during the transition from hospital to home. Background: Children with complex health needs frequently transition across and within healthcare systems, due to their age, care needs and ongoing health conditions. Repeated and unplanned admissions are significantly higher for children with complex health needs. Yet parents, as the primary providers of care, report being unsupported and unprepared during the transition from hospital back to home due to poor communication, inadequate discharge planning and education, resulting in stress and anxiety within the home environment. Design: Systematic review following PRISMA guidelines. Methods: A systematic search was completed of the databases CINAHL, MEDLINE, PsycINFO, EMBASE and the Cochrane Library Review between January 2009 and September 2019. Data were extracted, categorised and analysed using a thematic analysis approach. An adapted CASP qualitative assessment tool was utilised for quality assessment. All included articles were marked for validity and relevance to current research with an overall score from 0–20. Results: A total of 13 studies of mixed quality were identified. CASP quality scores ranged from 13–18. Four themes emerged highlighting parents' experiences of the emotional processes, communication, coordination and support and resources when transitioning from hospital to home. Conclusions: Hospital discharge and transition from hospital to home is a complicated and at times frustrating process for parents of children with complex health needs. Parents report being exhausted and stressed during this often-challenging period of adjustment which was perceived as a difficult and emotional process. There is a clear lack of support available for parents both from hospital and community services.