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

Anica Ilic; Yara Sievers; Katharina Roser; Katrin Scheinemann; Gisela Michel

doi:10.1016/j.pec.2023.107840

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

Patient Educ Couns. 2023 Sep:114:107840. doi: 10.1016/j.pec.2023.107840. Epub 2023 Jun 7.

Authors

Anica Ilic¹, Yara Sievers², Katharina Roser², Katrin Scheinemann³, Gisela Michel⁴

Affiliations

¹ Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland; Department of Pediatrics, Emory University School of Medicine, Atlanta, GA, USA; Aflac Cancer & Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA.
² Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.
³ Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland; Center for Pediatric Hematology/Oncology, East Swiss Children's Hospital, St. Gallen, Switzerland; Department of Pediatrics, McMaster Children's Hospital and McMaster University, Hamilton, Canada.
⁴ Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland. Electronic address: gisela.michel@unilu.ch.

PMID: 37321115
DOI: 10.1016/j.pec.2023.107840

Abstract

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.

Keywords: Childhood cancer; Information needs; Relatives; Systematic review; Thematic synthesis.

Publication types

Systematic Review
Review
Research Support, Non-U.S. Gov't

MeSH terms

Caregivers
Child
Health Personnel
Humans
Neoplasms* / therapy
Parents
Qualitative Research
Survivors