Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons

Carlisle, Erica M.; Shinkunas, Laura; Lieberman, Maxwell T.; Hoffman, Richard M.; Reisinger, Heather Schacht

doi:10.1016/j.jpedsurg.2022.12.029

Cited by 3 publications

(22 citation statements)

References 29 publications

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“…38,40,56,63 In some studies parents used other sources of information, including other parents in a similar situation and the internet. 38,40,50,52,57 supported by loved ones. When making decisions, parents valued the support of their partner, wider family and friends.…”

Section: Table 3 (Continued)mentioning

confidence: 99%

“…36,38,43,48,50,52,53,56,57,60,63 The experience of decisionmaking was less stressful if parents were engaged in the process, given professional guidance, treated with respect and received support from clinicians. 36,38,50,52,57,60,63 Having enough information. Having sufficient information was particularly emphasised as important in the active participation in the decision-making process.…”

Section: Table 3 (Continued)mentioning

confidence: 99%

“…Having sufficient information was particularly emphasised as important in the active participation in the decision-making process. 38,40,42,50,52,[55][56][57]63 This enabled parents to know about the options available and to trust their feelings and instincts during the process. 36,39,52,56 The lack of information had a negative impact on parental ability to participate in the process, but finding the right amount of information was challenging as being overwhelmed with information led to similar outcomes.…”

Section: Table 3 (Continued)mentioning

confidence: 99%

“…Most parents felt like they did not have a real choice. 35,37,39,41,43,[48][49][50][51]54,56,63 This was because they were not given any alternative choices to the proposed option, and the other option meant they would agree with letting the child die, or the procedure was undertaken without asking them, and they were not given a choice in the matter. 37,39,41,51,54,56 For parents of children with cancer, the expectation was that they would follow a treatment protocol.…”

Section: Synthesismentioning

confidence: 99%

“…When making decisions, parents wanted to try all options of treatment available or to look for treatment elsewhere, including alternative therapies and seeking a second opinion. 36,37,[41][42][43]45,[49][50][51]56,57,61 This was particularly evident when making decisions about withdrawing treatment; parents needed to be sure there were no other options remaining and that they could change their decision depending on the health state of their child. 36,43,45,49,51,54,57,58,61 Even when the condition was uncurable and clearly terminal, some parents wanted to try all possible options.…”

Section: Table 3 (Continued)mentioning

confidence: 99%

See 4 more Smart Citations

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

Polakova,

Ahmed,

Vlckova

et al. 2023

Palliat Med

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Background: Parental involvement in the decision-making processes about medical treatment for children with life-limiting conditions is recognised as good practice. Previous research highlighted factors affecting the decision-making process, but little is known about how parents experience their participation. Aim: To explore how parents experience their participation in the process of decision-making about treatment and future care for their children with life-limiting conditions. Design: A systematically constructed review using narrative synthesis. The PRISMA guidelines were followed to report the findings. Databases Medline, EMBASE, SCOPUS, CINAHL and PsycINFO were searched up to December 2023. The study protocol was registered at PROSPERO (RN CRD42021215863). Results: From the initial 2512 citations identified, 28 papers met the inclusion criteria and were included in the review. A wide range of medical decisions was identified; stopping general or life-sustaining treatment was most frequent. Narrative synthesis revealed six themes: (1) Temporal aspects affecting the experience with decision-making; (2) Losing control of the situation; (3) Transferring the power to decide to doctors; (4) To be a ‘good’ parent and protect the child; (5) The emotional state of parents and (6) Sources of support to alleviate the parental experience. Conclusions: Parental experiences with decision-making are complex and multifactorial. Parents’ ability to effectively participate in the process is limited, as they are not empowered to do so and the circumstances in which the decisions are taking place are challenging. Healthcare professionals need to support parental involvement in an effective way instead of just formally asking them to participate.

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Section: Table 3 (Continued)mentioning

confidence: 99%

Section: Table 3 (Continued)mentioning

confidence: 99%

Section: Table 3 (Continued)mentioning

confidence: 99%

Section: Synthesismentioning

confidence: 99%

Section: Table 3 (Continued)mentioning

confidence: 99%

See 3 more Smart Citations

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

Polakova,

Ahmed,

Vlckova

et al. 2023

Palliat Med

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Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology

Carlisle

Shinkunas

Lieberman

et al. 2023

Journal of Surgical Research

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The Art and Science of Pediatric Tumor Reconstruction Surgery: A Comprehensive Review

Fabre Morales,

Guzmán Canaba,

Llerena Chicaiza

et al. 2023

Salud, Ciencia y Tecnología

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Introducción: la cirugía de reconstrucción de tumores pediátricos se encuentra en la intersección de múltiples disciplinas, lo que exige una combinación única de experiencia quirúrgica, innovación tecnológica y una comprensión profunda de la oncología pediátrica. Con la evolución de las técnicas quirúrgicas, las modalidades de imágenes avanzadas y el advenimiento de la cirugía robótica y mínimamente invasiva, el panorama de la reconstrucción tumoral pediátrica ha experimentado transformaciones sustanciales.Objetivo: esta revisión tiene como objetivo proporcionar una descripción general completa del estado actual y las direcciones futuras en la cirugía de reconstrucción de tumores pediátricos, arrojando luz sobre el arte y la ciencia de esta disciplina compleja y destacando la necesidad de una colaboración multidisciplinaria para mejorar los resultados de los pacientes.Métodos: Se realizó una búsqueda bibliográfica sistemática utilizando las bases de datos PubMed, MEDLINE y Google Scholar con los términos "Oncología pediátrica", "Cirugía reconstructiva", "Cirugía tumoral", "Cirugía mínimamente invasiva", "Cirugía robótica", "Resultados quirúrgicos" y "Calidad de vida". La búsqueda incluyó artículos de 2004-2023.Resultados: Los hallazgos de la revisión revelan una tendencia hacia la cirugía robótica y mínimamente invasiva, que ofrece el potencial de opciones de tratamiento menos invasivas y una mejor recuperación para los pacientes. Los avances tecnológicos han jugado un papel importante, con la terapia fotodinámica, la fotoinmunoterapia de infrarrojo cercano y la cirugía guiada por fluorescencia que proporcionan nuevas herramientas para el tratamiento local y regional del cáncer.Conclusiones: La cirugía de reconstrucción tumoral pediátrica continúa evolucionando con los avances en las técnicas quirúrgicas y la integración de tecnología innovadora. El campo presenta direcciones futuras prometedoras, pero se necesita más investigación, particularmente en relación con nuevos tratamientos, comprensión de la recaída local y mejora de la calidad de vida posoperatoria.

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Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons

Cited by 3 publications

References 29 publications

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology

The Art and Science of Pediatric Tumor Reconstruction Surgery: A Comprehensive Review

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