The information needs of relatives of childhood cancer patients and survivors: A systematic review of quantitative evidence.

OBJECTIVE: We aimed to: (1) summarize the quantitative evidence on the information needs of relatives of childhood cancer patients, survivors, and children deceased from cancer; and (2) identify factors associated with these needs. METHODS: PubMed, PsycINFO, Scopus, and CINAHL were systematically searched. The methodological quality of all included publications was assessed, and the extracted data were analyzed using narrative synthesis. RESULTS: Of 5810 identified articles, 45 were included. Information needs were classified as unmet, met (satisfied), and unspecified and categorized into five domains: medical information, cancer-related consequences, lifestyle, family, and support. Most unmet information needs concerned cancer-related consequences (e.g., late effects), while information needs on support were generally met. Migrant background and higher education were associated with higher information needs among parents. Siblings had lower information needs than parents. CONCLUSION: This systematic review provides a comprehensive overview of the information needs of relatives in the context of childhood cancer, showing that information on cancer-related consequences is needed most often. The socioeconomic background of the relatives needs continued consideration throughout the cancer trajectory. PRACTICE IMPLICATIONS: Our findings suggest the need for personalized information. Healthcare professionals should adapt their communication strategies to respond to the different and evolving needs of all affected relatives.

The information needs of relatives of childhood cancer patients and survivors: A systematic review of qualitative evidence.

OBJECTIVES: To synthesize qualitative research on the information needs of relatives of childhood cancer patients and survivors. METHODS: Systematic searches of PubMed, PsycINFO, CINAHL, and Scopus identified relevant literature. Extracted data were combined using thematic synthesis. Methodological quality was assessed using the JBI critical appraisal tool for qualitative research. RESULTS: The review included 27 publications, with most research focusing on parents or primary caregivers. Five areas of information needs were identified: treatment, medication, and care; general information about cancer; coping and support; follow-up, late effects, and rehabilitation; and parenting and everyday life. Appropriateness of information depended on health care professionals' aptitude, message characteristics, communication setting, and relatives' personal factors. Preferences for form, sources, and timing for information provision varied. CONCLUSION: The review identified information needs, communication barriers, and preferences among caregivers and siblings of childhood cancer patients and survivors, highlighting areas requiring further research and clinical consideration in addressing the identified challenges. PRACTICE IMPLICATIONS: Caregivers and siblings have unique but similar information needs regarding childhood cancer. To ensure that these needs are met, health care professionals could use eHealth and mHealth technologies, assess each family member's knowledge, and create a safe and supportive environment for questions and feedback.