How do parents of a child with cancer perceive their psychosocial needs from cancer diagnosis to remission? : a systematic review of qualitative data
Introduction: To improve psychosocial care, it is imperative to focus on the needs of parents, based on their own opinions and experiences. Objectives: This systematic review of the literature and thematic synthesis aims to: (1) identify the different categories of psychosocial needs reported by parents (2) isolate the unmet needs of parents, and (3) analyze the relationship between reported needs and the moment of the trajectory. We selected qualitative and mixed studies on the psychosocial needs of parents in pediatric oncology in PUBMED, EMBASE, CINAHL and PsycINFO databases. To select studies and extract methodological data for the thematic synthesis, we used the Consolidated criteria for qualitative research - COREQ tool (Tong, Sainsbury, & Craig, 2007). Results: We identified 102 studies with these criteria, of which 18 were synthesized in Nvivo 11 with line-by-line coding and thematic analysis of study results. This analysis revealed five categories of unmet needs: 1) social; 2) relational; 3) emotional; 4) displacement; 5) informational. Parents' unmet needs related to 1) lack of family and social support; 2) difficult relationship with the healthcare team; 3) ineffective coping with cancer; 4) ineffective communication about cancer; 5) difficult transition from hospital to home. These reported needs were present at all stages of the cancer trajectory, except for the need for support during the return home after the end of treatment. The thematic synthesis also identified the following themes of improvement suggestions for psychosocial care based on parental opinion: 1) strengthening relationships with family and community; 2) investing in a positive relationship with parents; 3) helping manage emotions and the practical aspects of the disease; 4) helping with the transition to the home; 5) giving information about cancer. Conclusion: This systematic review presents parents’ unmet psychosocial needs and their suggestions about how the psychosocial care they receive could be improved, based on their own unmet needs. Parental opinions about their care are the base for the social validity of psychosocial care.
Parents’ psychosocial unmet needs Thematic synthesis Psychosocial care