Communication during childhood cancer: Systematic review of patient perspectives

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. Cancer 2020;126:701-716.

Pediatric cancer communication in low‐ and middle‐income countries: A scoping review

“…For example, variability in caregivers' desired level of involvement in decision making appeared to be influenced by the role of women in a family. Included studies also highlighted different levels of involvement of children in information exchange, and this was consistent with a recent review that suggested cultural values affect pediatric patient inclusion in diagnostic communication 61 . Some of the reviewed studies described distant caregiver‐provider relationships and a hierarchical medical culture, which may reflect differences in the extent to which providers embrace principles of patient‐ or family‐centered communication.…”

Much is left unspoken: Self‐reports from families in pediatric oncology

“…Studies show that ill children experience distress associated with the illness; for example, side effects of treatment and feelings of loneliness, isolation, and powerlessness 1 . They also report feeling disempowered due to a lack of information and being neglected by clinicians who do not have time to talk or answer questions 2 . Early physical and emotional distress has been found to predict long‐term suffering among these children, which suggests that implementation of family interventions could reduce the risk of suffering in children with cancer 3,4 .…”

In the name of the family? Against parents’ refusal to disclose prognostic information to children

“…The child is a spectator "of the hushed whispers and discussions among grown-ups and can ascertain that a secret exists that is not to be discussed" (Sisk et al 2016;Claflin and Barbarin 1991;Coyne et al 2016;Cole and Kodish 2013, p. 641;Bluebond-Langer 1980;Lin et al 2019). Children know when something is wrong (Wangmo et al 2016).…”

“…Thirdly, the child (and the family) benefits from disclosing information. For example, it provides the opportunity to develop their decisional capacity (Lin et al 2019), it causes children to value more strongly their treatment (Fukuda and Fukuda 2018), it promotes the therapeutic relationship and compliance with treatment recommendations (Hudson et al 2019;Slavin et al 1982), it gives the child some control over the situation and a validation of the experience (Lin et al 2019;Kunin 1997), it fosters trust in the physician (Lin et al 2019;Kunin 1997; American Academy of Pediatrics 1995), it improves a child's well-being (Bluebond-Langer 1980; Hudson et al 2019), it generally increases the likelihood of children approaching their parents for information (LePoire 2006), and it empowers children by enhancing their assertive agency (Lin et al 2019).…”