Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Zimmermann, Karin; Simon, Michaël; Scheinemann, Katrin; Oehler, Eva Maria Tinner; Widler, Michèle; Keller, Simone; Fink, Günther; Mitterer, Stefan; Gerber, Anne-Kathrin; Felten, Stefanie von; Bergstraesser, Eva

doi:10.1186/s12904-022-01089-x

Cited by 4 publications

(2 citation statements)

References 30 publications

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“…Neste artigo é feita uma atualização sobre as indicações e particularidades da abordagem paliativa no contexto dos cuidados intensivos pediátricos. Zimmermann et al, 2022 Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol.…”

Section: Arch Argent Pediatrunclassified

Atuação frente ao paciente pediátrico em cuidados paliativos

Bomfim

Araújo²,

Barbosa³

et al. 2022

RSD

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O estudo objetiva demonstrar o cuidado prestado ao paciente pediátrico em cuidados paliativos.Trata-se de uma revisão integrativa da literatura realizada através das bases de dados Scientific Electronic Library Online (SciELO), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) e Medical Literature Analysis and Retrieval System Online (MEDLINE), através dos seguintes Descritores em Ciências da Saúde (DeCS): "cuidados paliativos" e "paciente pediátrico". Combinados entre si pelo operador booleano AND. Como critérios de inclusão: artigos disponíveis na íntegra, nos idiomas português, espanhol e inglês, que abordassem a temática, nos últimos cinco anos (2017-2022). Como critérios de exclusão: artigos que não contemplavam o tema e estudos repetidos nas bases de dados. Foram encontrados 6206artigos, após a busca combinada de descritores e operadores booleanos foram selecionados 9 artigos para compor a amostra final. O cuidado paliativo não está mais no pólo oposto da terapia de cura. A integração dos dois modelos pode conceder multa maior de existência para famílias e para crianças com doenças contínuas que ameaçam a existência. Reconhecer e lidar eficientemente com os sinais e sintomas mais cotidianos dos pacientes, participar de uma equipe multidisciplinar, desenvolver bom relacionamento entre a equipe, a família e os pacientes e discutir problemas associados ao abandono de estilos de vida são alguns dos fundamentos fundamentais dos cuidados paliativos.

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Section: Arch Argent Pediatrunclassified

Atuação frente ao paciente pediátrico em cuidados paliativos

Bomfim

Araújo²,

Barbosa³

et al. 2022

RSD

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show abstract

“…Following publication of the original article [ 1 ], the author reported that there is an error in the data on page 8.…”

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confidence: 99%

Correction: Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

et al. 2023

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Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis

Mitterer,

Zimmermann,

Fink

et al. 2024

Eur J Pediatr

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The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two events: a child’s hospitalization and death. This cohort study used panel data collected prospectively for a larger study investigating the effectiveness of specialized pediatric palliative care. Participants were recruited by medical professionals between November 2019 and May 2022 at four Swiss children’s hospitals. The care follow-up and bereavement follow-up assessments were 330 and 300 days, respectively. We measured out-of-pocket non-medical expenses, individual full-time equivalent units, and personal income, as well as sick leave and vacation days taken. Analyses included descriptive statistics and two-way linear fixed-effects regressions. The analysis included 110 parents (mothers n = 59, fathers n = 51) of 61 children. Children were hospitalized for a median of 7 days (interquartile range 0–21, range 0–227). The fixed-effects models found a positive association between hospitalization, i.e., length of stay, and travel and accommodation expenses (coefficient 4.18, 95% confidence interval 2.20–6.16). On average, for each week of hospitalization, parents spent an additional 29 Swiss francs on travel and accommodation. During the 300-day bereavement follow-up, six (26%) of 23 parents increased their work commitments, while one reported a decrease.Conclusions: Families incur higher travel and accommodation expenses during hospitalization than during non-hospitalized periods. Instrumental support, e.g., parking vouchers, can help families minimize these costs. Future studies should investigate whether early return to work during bereavement is driven by economic considerations or a desire for distraction.Clinical trial registration: Data analyzed in this study were collected as part of a clinical trial, registered on ClinicalTrials.gov, No. NCT04236180, 15 March 2019 What Is Known:• Families of children with life-limiting conditions are at risk of substantial financial burden from high out-of-pocket medical expenses.• It is also known that parents often have to incur out-of-pocket non-medical expenses and reduce their work commitments. Little is known about the economic consequences of losing a child to a life-limiting condition.What Is New:• We provide new longitudinal evidence on the hospitalization- and death-related financial and employment implications for families of children with life-limiting conditions.• Child hospitalizations add to families’ financial burden through increased travel and accommodation expenses. Work commitments rose during early bereavement.

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Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Cited by 4 publications

References 30 publications

Atuação frente ao paciente pediátrico em cuidados paliativos

Atuação frente ao paciente pediátrico em cuidados paliativos

Correction: Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis

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