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

Abstract

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.

Retracted: Effect of care programme based on Comfort Theory on reducing parental anxiety in the paediatric day surgery: Randomised controlled trial

“…Paediatric day surgery is a stressful and challenging experience for both children and their parents (Chartrand et al, 2017 ;Ronan et al, 2020 ). Parents may experience severe anxiety due to not feeling prepared emotionally or educationally for paediatric day surgery (Rantala et al, 2020 ), uncertainty, hopelessness and loss of control (Fincher et al, 2012 ), their children feeling pain, fear or anxiety due to the procedure (Landier et al, 2018 ), and thoughts about negative effects of anaesthesia or development of unexpected side effects (Salgado et al, 2011 ).…”

“…Further, parental anxiety may make it more difficult to obtain valid informed consent (Kampouroglou et al, 2020 ;Salgado et al, 2011 ). These difficulties may cause parents to experience problems with participating in perioperative care of the child and undertaking postoperative care (Kampouroglou et al, 2020 ;Ronan et al, 2020 ).…”

Coached, Coordinated, Enhanced Neonatal Transition (CCENT): protocol for a multicentre pragmatic randomised controlled trial of transition-to-home support for parents of high-risk infants

“…Differences less than 6.5 points (about 10%) would not be considered clinically important. The range used for the SD [15][16][17][18][19] was confirmed using the data from the first 60 patients.…”

“…17 18 Discharge is accompanied by a sense of loss as families leave the familiarity of the NICU while severing supportive relationships with healthcare providers (HCPs). 19 A lack of continuity of care post-discharge can negatively impact patient outcomes and parent well-being. 20 In Canada, post-discharge care includes scheduled appointments with a primary care provider, and for highrisk infants, a neonatal follow-up (NFU) programme that focuses on neurodevelopmental assessment and outcomes.…”

“…Experience outcomes are captured through purposive sampling and semistructured qualitative interviews with a subset [15][16][17][18][19][20] of intervention participants at 12 months and HCPs [7][8][9][10][11][12][13][14][15] including all NNs at study end. The objective of the qualitative component is to ensure an in-depth understanding of the intervention, especially (1) the most valuable components, (2) facilitators and barriers, and (3) impact on parent stress and mental health.…”