Communication during childhood cancer: Systematic review of patient perspectives

Beryl Lin; Talia Gutman; Camilla S Hanson; Angela Ju; Karine Manera; Phyllis Butow; Richard J Cohn; Luciano Dalla-Pozza; Katie A Greenzang; Jennifer Mack; Claire E Wakefield; Jonathan C Craig; Allison Tong

doi:10.1002/cncr.32637

Communication during childhood cancer: Systematic review of patient perspectives

Cancer. 2020 Feb 15;126(4):701-716. doi: 10.1002/cncr.32637. Epub 2019 Dec 10.

Authors

Beryl Lin^{1

2}, Talia Gutman^{1

3}, Camilla S Hanson^{1

3}, Angela Ju^{1

3}, Karine Manera^{1

3}, Phyllis Butow⁴, Richard J Cohn^{2

5}, Luciano Dalla-Pozza⁶, Katie A Greenzang⁷, Jennifer Mack⁷, Claire E Wakefield^{2

5}, Jonathan C Craig^{1

3}, Allison Tong^{1

3}

Affiliations

¹ School of Public Health, University of Sydney, Sydney, New South Wales, Australia.
² School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia.
³ Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
⁴ Psycho-oncology Co-operative Research Group, School of Psychology, University of Sydney, Sydney, New South Wales, Australia.
⁵ Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
⁶ Cancer Centre for Children, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
⁷ Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Dana-Farber Cancer Institute, Boston, Massachusetts.

PMID: 31821552
DOI: 10.1002/cncr.32637

Abstract

Effective communication is challenging in childhood cancer, where decisions carry unpredictable and life-threatening implications. We aimed to describe patients' experiences of communicating with clinicians during treatment of childhood cancer. A systematic review of qualitative studies to April 2019 was performed. Eligible studies included patients diagnosed with cancer at age ≤ 18 years and reported their perspectives of communicating with clinicians during treatment of childhood cancer. Data were extracted from primary studies for thematic synthesis. From 101 articles across 25 countries involving 1870 participants who were diagnosed with cancer between ages 3 to 18 years, we identified 6 themes: 1) rendered invisible and powerless (displaced and undermined by adult authority; betrayed and distrustful; feeling neglected; helpless and intimidated; disempowered by lack of information); 2) fear and worry for the future (paralyzed by devastating news; uncertainty, anticipation, and dread; broaching intimate and private topics); 3) burdened with responsibility (pressured and unprepared; balancing external expectations; protecting hope); 4) therapeutic patient-provider relationships (emotional support and encouragement; validated personhood and companionship); 5) safety in trust (truthfulness and transparency; prepared by awareness and understanding; reassured by reliable expertise; depending on adults for protection and difficult decisions; security in expressing opinions and needs); and 6) empowerment and assertive agency (right to individual knowledge and choice; control over own life; partnership and respect; enhancing capacity for self-management). During treatment of childhood cancer, patients gain a sense of respect, safety, and control when they feel clinicians address their information and developmental needs. However, communication that is perceived to be parent-centered can be disempowering. Promoting child agency and partnership may improve care and outcomes for children with cancer.

Keywords: adolescent; cancer; child; communication; decision making; patient; qualitative.

Publication types

Systematic Review

MeSH terms

Adolescent
Child
Child, Preschool
Communication*
Family
Female
Hope
Humans
Male
Neoplasms / psychology
Neoplasms / therapy*
Parents / psychology*
Physician-Patient Relations*
Qualitative Research*
Trust