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

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.

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 EXTRACTION: Qualitative data were extracted from papers for inclusion in the review using the standardized data extraction tool from JBI-QARI.

DATA SYNTHESIS: Qualitative research findings were extracted and pooled using JBI-QARI.

RESULTS: A total of eight qualitative papers were included in the review (two grounded theory, four phenomenology and two qualitative inquiries). Five syntheses were derived: (1) family loss and the turmoil that surrounds the diagnosis of cancer; (2) a sense of courage and hope for mutual responsibility inspired by the changes in circumstances; (3) family support enhancing family members’ resilience; (4) health professional-patient communication that provide a deeper understanding of the illness and their own situations; and (5) a positive attitude towards the illness and planning for the future.

CONCLUSIONS: The research findings should help health professionals understand the nature of the experiences of family members of a child or adolescent with cancer. It is critical to assess the family member’s level of preparedness in the face of the psychological stress associated with the potential loss of their healthy child. Health professionals should enhance family coping strategies in order to promote normal family life. This can be done by inspiring positive attitudes and empowerment aimed at caring for the child and helping the family to build the necessary health-related communication capacities in order to clarify the child’s condition.

IMPLICATIONS FOR PRACTICE: Clinical guideline suggestions for health professionals working with families of children or adolescent diagnosed with cancer within the first year following the diagnosis were identified. Health professionals must listen to and accept the emotions of shock, anger and loss by the family members who are facing the potential loss of their healthy child together with the upheaval in their lives and disruptions to their plans for the future. Health professionals should be encouraged to provide clear information to the whole family in relation to the treatment plan and caring strategies for the child. Nurses should provide family members with strategies to help with the normalization of their life and a return to their previous pre-cancer lifestyle. The medical team should exhibit professionalism and skills when treating the cancer in order to enhance the child’s and his/her family members’ trust and sense of safety in the medical care environment. Encouraging the family members of children with cancer to develop positive thinking and to plan for their future life should be a priority of the nursing care plan.