Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives

Mack, Jennifer W.; Ilowite, Maya; Taddei, Sarah

doi:10.1002/cncr.30395

Cited by 31 publications

(57 citation statements)

References 30 publications

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“…Parents are often optimistic regarding their child's likelihood of survival, and they desire intensive treatment for their child until the end of life, hoping to achieve cure or to extend life . This often remains a priority for oncologists as well, and the same barriers for adult pRT may be further compounded with the addition of the parent‐physician therapeutic alliance …”

Section: Introductionsupporting

confidence: 54%

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Lee

Boyle

Zaslowe-Dude

et al. 2019

Pediatric Blood & Cancer

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Objectives Palliative radiation therapy (pRT) is often used to improve quality of life for pediatric patients. Though palliative doses are generally lower than those for cure, pRT may still introduce undesirable effects. The decision to pursue additional therapy for a child may be challenging and depends on parents’ knowledge and expectations. The goal of this study was to explore parental perceptions of pRT. Methods Twenty‐eight children referred for pRT were enrolled in our prospective study. Parents were counseled regarding the indication and expected outcomes. They then completed a series of questionnaires to assess their understanding of pRT, side effects that their child experienced, and how the outcomes compared to their expectations. Results The majority of parents listed pain relief and addressing new disease as the main indication for pRT. When asked about expectations, the majority chose improvement in quality of life and prolongation of their child's life. Interestingly, 32% of parents expected pRT to cure their child's disease. Most patients undergoing pRT did not experience any adverse symptoms. The outcomes of pRT in the majority of cases exceeded parental expectations. Conclusion Improved quality of life with pRT sometimes blurs the distinction between palliation and cure. We found that most parents understand the aim to improve quality of life, although a proportion of parents perceived pRT as a cure to their child's disease. Despite this, the majority of parents reported that the outcome of the pRT course exceeded their expectations. We postulate that parents derive comfort from pursuing active treatment.

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Section: Introductionsupporting

confidence: 54%

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Lee

Boyle

Zaslowe-Dude

et al. 2019

Pediatric Blood & Cancer

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“…Children with cancer have reported impaired quality of life, loss of control, and insufficient inclusion in their health care decisions. 11,14 Syntheses of qualitative studies of children's own perspectives have the capacity to generate in-depth insights into communication and decision-making needs across different developmental stages, health care contexts, and illness trajectories, including end-of-life scenarios. 3,12 Understanding children's information needs and the impact of clinician communication behaviors on patients have been identified as research priorities.…”

Section: Introductionmentioning

confidence: 99%

“…12,13 Most studies on communication in childhood cancer have focused on parents or physicians, rather than patients. 11,14 Syntheses of qualitative studies of children's own perspectives have the capacity to generate in-depth insights into communication and decision-making needs across different developmental stages, health care contexts, and illness trajectories, including end-of-life scenarios. 15 This study describes patient experiences and preferences for communicating Cancer February 15, 2020 with clinicians during childhood cancer to inform strategies for improving patient-centered communication and decision-making processes.…”

Section: Introductionmentioning

confidence: 99%

Communication during childhood cancer: Systematic review of patient perspectives

Lin

Gutman

Hanson

et al. 2019

Cancer

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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.

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“…Revisiting may reveal and clarify misunderstandings, repair prior insensitive communication, and equip parents to engage in shared decision-making. 6–8 Notably, parents of children with cancer report wanting to revisit prognostic discussions during the year after diagnosis. 9 Additionally, parents hold less active decision-making roles than they desire.…”

Section: Introductionmentioning

confidence: 99%

“…Several studies suggest a role for revisiting initial discussions regarding the cancer diagnosis and treatment decisions. Revisiting may reveal and clarify misunderstandings, repair prior insensitive communication, and equip parents to engage in shared decision making . Notably, parents of children with cancer report wanting to revisit prognostic discussions during the year after diagnosis .…”

Section: Introductionmentioning

confidence: 99%

Development of the “Day 100 Talk”: Addressing existing communication gaps during the early cancer treatment period in childhood cancer

Feraco

Brand

Gagne

et al. 2018

Pediatric Blood & Cancer

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Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives

Cited by 31 publications

References 30 publications

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Palliative radiotherapy for pediatric patients: Parental perceptions of indication, intent, and outcomes

Communication during childhood cancer: Systematic review of patient perspectives

Development of the “Day 100 Talk”: Addressing existing communication gaps during the early cancer treatment period in childhood cancer

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