Impact of specialized pediatric palliative care programs on communication and decision-making

Streuli, Jürg C; Widger, Kimberley; Medeiros, Christina; Zuniga-Villanueva, Gregorio; Trenholm, Madeline

doi:10.1016/j.pec.2019.02.011

Cited by 15 publications

(6 citation statements)

References 47 publications

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“…5 Although both children and parents may have unique needs, parents' needs are required to be addressed because they often represent their child's needs. 6 The benefits of PPC include ameliorating distress, 7 improving communication and decision making, 8 and improving the family's satisfaction with health care and quality of life. 9 Palliative care in South Korea was launched in 2003 as hospice care for patients with refractory cancer and has been growing since then.…”

Section: Introductionmentioning

confidence: 99%

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions

Kim

Yi-Ji

et al. 2022

J Hosp Palliat Nurs

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This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care.

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Section: Introductionmentioning

confidence: 99%

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions

Kim

Yi-Ji

et al. 2022

J Hosp Palliat Nurs

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“…O diagnóstico de paliação das crianças é um desafio para os profissionais, pois essa experiência pode criar um fardo psicossocial a longo prazo para os pais e cuidadores (4) . Por esse motivo, é importante reconhecer o sofrimento do paciente e compartilhar angústias, medos e dores vivenciados pelos envolvidos nos cuidados.…”

Section: Introductionunclassified

Paliar, cuidando além da dor: uma reflexão dos profissionais de saúde na oncologia pediátrica

Trainoti

Melcherth

Cembranel

et al. 2022

Rev Bras Promoc Saúde

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Artigo de RevisãoEste artigo está publicado em acesso aberto (Open Access) sob a licença Creative Commons, que permite uso, distribuição e reprodução em qualquer meio, sem restrições, desde que o trabalho seja corretamente citado. Paliar, cuidando além da dor: uma reflexão dos profissionais de saúde na oncologia pediátrica To palliate, caring beyond pain: a reflection of health professionals in pediatric oncologyPaliar, cuidando más allá del dolor: una reflexión de los profesionales de salud en oncología pediátrica

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“…2021 ; Muskat et al, 2020 ). There are enormous challenges to clinical practice when providing pediatric end-of-life care, such as decision-making for starting or withdrawing treatments, discussing goals of care with minors, and sensitively ascertaining the hopes and worries of a family who may not share expectations or wishes ( Streuli et al, 2019 ). As a result, many health care professionals require support in the care of children who are dying ( Atout, 2019 ), as this is an area that can be both stressful and challenging ( Bergsträsser et al, 2017 ; Bloomer et al, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

“Holding back my own emotions”: Evaluation of an online education module in pediatric end-of-life care

Rawlings

Winsall

Yin

et al. 2022

J Child Health Care

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Providing quality end-of-life care to a child who is dying in hospital can be stressful and challenging, and health professionals often feel ill-prepared and require additional support. End-of-Life Essentials offers online education modules for health professionals working in acute hospitals, including one on end-of-life care in pediatric settings. This study aimed to evaluate this module and explore learners’ views on challenges faced when caring for a dying child and their family in a hospital setting. Learners comprised nurses, doctors, and allied health professionals. A quantitative pre-/post-evaluation analysis was conducted using learner data ( n = 552) on knowledge and skills gained from engagement with the module, along with a qualitative thematic content analysis on learner responses ( n = 395) to a post-evaluation free-text response question, between May 2019 and May 2020. Learners’ post-evaluation ranks of perceived knowledge, skill, attitude, and confidence were significantly higher than pre-evaluation ranks ( p < 0.001). Effect sizes were small to medium, ranging from 0.31 to 0.38 (95% confidence intervals from 0.23 to 0.45). Emerging themes from the qualitative data were dealing with emotions, and communicating effectively. This evaluation suggests that the Pediatrics module could be a useful online learning resource for health professionals. A planned longitudinal study will further investigate practice change.

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Impact of specialized pediatric palliative care programs on communication and decision-making

Cited by 15 publications

References 47 publications

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions

Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions

Paliar, cuidando além da dor: uma reflexão dos profissionais de saúde na oncologia pediátrica

“Holding back my own emotions”: Evaluation of an online education module in pediatric end-of-life care

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