Parent‐centered communication at time of pediatric cancer diagnosis: A systematic review

Hentea, Cristiana; Bauer, Nerissa S.; Mueller, Emily L.

doi:10.1002/pbc.27070

Cited by 16 publications

(15 citation statements)

References 42 publications

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“…The reviewed studies emphasized the roles of extended family members in communication and in parallel described a diffusion of communication responsibility beyond the physician to a broader health care team. This dynamic extends past the traditional patient‐provider relationship emphasized in HICs 62‐64 and supports findings from pediatric cancer communication literature that emphasize the importance of a team approach 7,65 . The health care team is potentially even more important where human resources are limited.…”

Section: Discussionsupporting

confidence: 71%

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

Graetz

Garza

Rodríguez‐Galindo

et al. 2020

Cancer

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The burden of global childhood cancer lies in low‐ and middle‐income countries (LMICs). Communication is essential to pediatric cancer care, and the National Cancer Institute (NCI) has defined 6 functions of communication between patients, family members, and providers, including 1) fostering healing relationships, 2) responding to emotions, 3) exchanging information, 4) making decisions, 5) managing uncertainty, and 6) enabling self‐management. Nevertheless, communication needs and practices in LMICs remain incompletely understood. For this review, the Web of Science, Scopus, PubMed, and Turning Research Into Practice databases were searched according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis Extension for Scoping Reviews. Searching identified 2988 articles, with 11 added through snowballing. Forty articles met the inclusion criteria. Two reviewers extracted data on study characteristics, communication functions, enablers, barriers, and additional major themes. This review included work from 17 countries. Most studies (85%) used qualitative methodology; the number of participants ranged from 7 to 304. All 6 of the NCI‐defined communication functions were identified in included studies, with rates ranging from 100% of studies for information exchange to 28% of studies for decision making. Communication barriers included cancer misconceptions, stigma, and hierarchy between parents and providers. Provider training and community education facilitated communication. Additional themes included disclosure to children, family dynamics, and the multidisciplinary health care team. In conclusion, all 6 of the communication functions defined by the NCI were applied by pediatric cancer researchers in LMICs. Additional barriers, enablers, and communication themes noted in LMICs deserve further exploration, and a relative paucity of research in comparison with high‐income countries highlights the need for further work.

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Section: Discussionsupporting

confidence: 71%

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

Graetz

Garza

Rodríguez‐Galindo

et al. 2020

Cancer

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“…For medical professionals to be aware of factors influencing POHCE retention, an informed flexibility approach can be used . This is an iterative process that oscillates between delivering portions of the diagnosis message, and checking the parents’ response to assess changes in their informational needs .…”

Section: Discussionmentioning

confidence: 99%

“…18 This is an iterative process that oscillates between delivering portions of the diagnosis message, and checking the parents' response to assess changes in their informational needs. 18 The approach ensures a parent-centered educational experience and alerts educators to parents who, for example, may respond differently to written decisional aids versus in-person educational sessions. In this case, a pictogram-based educational material, which has been shown to improve uptake of complex instructions in the pediatric setting, may be of use.…”

Section: Discussionmentioning

confidence: 99%

Impact of socioeconomic markers on parents' retention of pediatric oncology home care education: A pilot study

Hentea

Downs

Edmonds

et al. 2019

Pediatric Blood & Cancer

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Little is known about the extent to which parents retain the education on how to manage home medical emergencies. We sought to describe retention of pediatric oncology home care education (POHCE) in a cohort of 24 parents of newly diagnosed children with cancer and investigate sociodemographic disparities in this retention. We measured retention using a vignette‐based survey instrument. The mean score was 4 (range 0–6, SD = 1.6) and parents with high school only education and those with limited cancer health literacy scored lowest (2.5 and 2.8, respectively). Future POHCE interventions can focus on parents’ literacy and education levels as predictors to tailor alternative education strategies.

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“…In the current study, the participants made a clear effort to adjust to each family's needs and conditions and to time the right moment to introduce the clinical trial as part of the treatment. It is a well‐known fact in paediatric oncology that communication is characterised by many challenges . Families may be emotionally unstable at the time of diagnosis, and it is hard to find the right moment to deliver information .…”

Section: Discussionmentioning

confidence: 99%

Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

et al. 2019

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Aim:To explore Swedish healthcare professionals' (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions. Methods:In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method. Results:The participants' main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants' struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust.The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). Conclusion: Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP-related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long-term risk of developing professional moral distress. K E Y W O R D S ethics, healthcare professionals, informed consent, paediatric oncology, qualitative study | 1041 SCHRÖDER HÅKANSSON Et Al.

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Parent‐centered communication at time of pediatric cancer diagnosis: A systematic review

Cited by 16 publications

References 42 publications

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

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

Impact of socioeconomic markers on parents' retention of pediatric oncology home care education: A pilot study

Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

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