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

被引:13
作者
Ilic, Anica [1 ,2 ,3 ]
Sievers, Yara [1 ]
Roser, Katharina [1 ]
Scheinemann, Katrin [1 ,4 ,5 ]
Michel, Gisela [1 ,6 ]
机构
[1] Univ Lucerne, Fac Hlth Sci & Med, Luzern, Switzerland
[2] Emory Univ, Dept Pediat, Sch Med, Atlanta, GA USA
[3] Childrens Healthcare Atlanta, Aflac Canc & Blood Disorders Ctr, Atlanta, GA USA
[4] East Swiss Childrens Hosp, Ctr Pediat Hematol Oncol, St Gallen, Switzerland
[5] McMaster Univ, McMaster Childrens Hosp, Dept Pediat, Hamilton, ON, Canada
[6] Univ Lucerne, Fac Hlth Sci & Med, Alpenquai 4, CH-6005 Luzern, Switzerland
基金
瑞士国家科学基金会;
关键词
Childhood cancer; Information needs; Relatives; Thematic synthesis; Systematic review; PEDIATRIC CANCER; PARENTS; CHILDREN; EXPERIENCES; SIBLINGS; FAMILY; SUPPORT; HEALTH;
D O I
10.1016/j.pec.2023.107840
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
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.
引用
收藏
页数:15
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