Palliative Care in Pediatric Oncology

Wolfe, Joanne; Jones, Barbara; Kreicbergs, Ulrika; Jankovic, Momcilo

doi:10.1007/978-3-319-61391-8

Cited by 10 publications

(1 citation statement)

References 189 publications

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“…There is an extensive body of research literature about siblings of children with cancer (Brennan et al, 2013 ; Gaab et al, 2014 ; Tay et al, 2022 ), but only a few studies have reported on siblings of children with other LT/LL conditions (Knecht et al, 2015 ; Kreicbergs et al, 2022 ; Tay et al, 2022 ; Wolfe et al, 2018 ). Further, many studies have investigated bereaved siblings’ experiences (Eaton Russell et al, 2018 ; Eilegård et al, 2013 ) rather than the experiences of siblings living with the ill child.…”

Section: Introductionmentioning

confidence: 99%

“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

Kittelsen,

Castor,

Lee

et al. 2024

International Journal of Qualitative Studies on Health and Well

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Background There is a lack of knowledge regarding siblings’ experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings’ perspectives are often expressed through their parents and not by siblings themselves. Method This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3–29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen’s lifeexistentials. Results One overall theme, “What about me?”, illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one’s own. Conclusion The study revealed that siblings’ own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings’ needs.

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Section: Introductionmentioning

confidence: 99%

“What about me?”: lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition

Kittelsen,

Castor,

Lee

et al. 2024

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

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Goals of Surgical Interventions in Youths Receiving Palliative Care

Ellis,

Chen,

Gordon Wexler

et al. 2024

JAMA Netw Open

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ImportanceMost youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated.ObjectiveTo describe the goals and purposes of surgical intervention in youths receiving palliative care and propose a framework discussing intervention using goal-oriented language.Design, Setting, and ParticipantsThis retrospective cohort analysis was conducted among a subset of patients enrolled between April 2017 and March 2021 in a prospective multicenter cohort study of youths receiving palliative care (the Pediatric Palliative Care Research Network’s Shared Data and Research [SHARE] Study). Patients younger than 30 years receiving palliative care services were eligible for inclusion in SHARE, and all enrolled at Boston Children’s Hospital/Dana Farber Cancer Institute, a SHARE site, were included in this study. Goals and purposes of all surgical interventions from the time of diagnosis through the present were abstracted from patient records. A goal and purpose framework was generated using a hybrid deductive-inductive approach based on established goals-of-care frameworks and the clinical context of surgical interventions. Data were analyzed in September 2023.Main Outcomes and MeasuresPrimary outcomes included goals and purposes of surgical interventions performed in the study population.ResultsAmong 197 youths receiving palliative care (mean [SD] age at palliative care start, 8.01 [7.53] years; 108 male [54.8%]; 6 Asian [3.0%], 12 Black [6.1%], 129 White [65.5%], and 16 with &gt;1 race [8.1%]; 27 Hispanic [13.7%] and 142 not Hispanic [72.1%]), almost all individuals (189 youths [95.9%]) underwent at least 1 surgical intervention (mean [SD] 17.5 [16.3] interventions; median [IQR] 13 [5-22] interventions). Of 3331 surgical interventions, there were 878 interventions (26.5%) conducted with the goal of life extension, 1229 interventions (37.1%) conducted for life enhancement, and 79 interventions (2.4%) conducted for both goals; the remaining 1130 interventions (34.1%) held neither goal. Most interventions were performed with the purpose of diagnosis (1092 interventions [32.9%]) or cure and repair (1055 interventions [31.8%]), with fewer performed for the purpose of placing or maintaining assistive technology (696 interventions [21.0%]) or for supportive (434 interventions [13.1%]) or temporizing (39 interventions [1.2%]) purposes. Patients with cardiovascular disease and cancers constituted approximately half (592 patients [56.1%]) of those undergoing curative or repair interventions, whereas youths with neurologic or genetic conditions constituted approximately half (244 patients [56.2%]) of those undergoing supportive interventions.Conclusions and RelevanceIn this cohort study, nearly all youths underwent surgical intervention, and the purposes of intervention differed by serious illness type. These findings suggest that conversations centered on a proposed framework concerning goals and purposes of surgical intervention may facilitate goal-concordant, high-quality care for youths with serious illness.

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