The experiences of family members in the year following the diagnosis of a child or adolescent with cancer: a qualitative systematic review.

Abstract

BACKGROUND Research shows that it is stressful for family members when a child or an adolescent within the family unit is diagnosed with cancer and this stress continues over the course of the year after the diagnosis. Qualitative studies have been conducted aimed at exploring parental, siblings’ and other family members’ experiences when facing health-illness transition-related stress during the first year after the child is diagnosed with cancer. This study integrates the research findings of relevant existing qualitative studies on this topic in order to provide empirical evidence-based suggestions for clinical care. OBJECTIVES This study intent is to obtain an understanding of the family members’ experiences over the course of the following year after learning that a child or adolescent within their family unit has been diagnosed with cancer. INCLUSION CRITERIA Types of participants: The participants of interest are family members of a child or adolescent with cancer who verbally describe the whole experience and/or report on the impact of the diagnosis and disease on their lives. In this systematic review, there were no restrictions on the type, severity and prognosis of cancer. Studies investigating the experiences of the family of a child or adolescent with cancer that were reported verbally and the opinions of others external to the family (e.g. nurses) were excluded from the review. Phenomena of interest: The phenomena of interest were the self-reported experiences over the course of the following year of family members of a child or adolescent with cancer and the impact on the whole family of the child or adolescent receiving a cancer diagnosis. The settings included acute care, home and community settings with any cultural context. Research on other phenomena, such as experiences related to social support intervention for the family, the long-term coping experience of the family, the bereavement experiences of children with cancer, the experiences of a child or adolescent with cancer and experiences more than one year after the diagnosis was excluded from the review. Types of studies: This review considered studies that used qualitative methods to examine the experiences of families of a child or adolescent with newly diagnosed cancer; these included but were not limited to designs such as qualitative research, phenomenology, hermeneutic phenomenology, grounded theory, ethnography, action research, focus groups and narrative research. The search was limited to studies published in English or Chinese because the reviewers were fluent in both of these languages. SEARCH STRATEGY The search strategy sought to find both published and unpublished studies. CINAHL, PUBMED, ProQuest Dissertations and Theses and Chinese electronic periodical services were used to search for articles. METHODOLOGICAL QUALITY Each paper was assessed independently by two reviewers for methodological quality. The Joanna Briggs Institute Qualitative Assessment and Review Instrument was used to appraise the methodological quality of the articles. Any disagreements that arose between the reviewers were resolved through discussion, or via a third reviewer. DATA COLLECTION Qualitative data were extracted from papers for inclusion in the review using the standardized data extraction tool from TRUNCATED AT 500 WORDS