Your browser doesn't support javascript.
loading
Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity.
Finlay, Melissa; Chakravarti, Vishakha; Buchanan, Francine; Dewan, Tammie; Adams, Sherri; Mahant, Sanjay; Nicholas, David; Widger, Kimberley; McGuire, Kristina Mangonon; Nelson, Katherine E.
Afiliación
  • Finlay M; Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada.
  • Chakravarti V; Clinical Operations (V.C.), IQVIA, Mississauga, Ontario, Canada.
  • Buchanan F; Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada.
  • Dewan T; Alberta Children's Hospital Research Institute (T.D.), Calgary, Alberta, Canada; Department of Pediatrics (T.D.), University of Calgary, Calgary, Alberta, Canada.
  • Adams S; Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada; Lawrence S. Bloomberg Faculty of Nursing (S.A., K.W.), University of Toronto, Toronto, Ontario, Canada; Department of Paediatrics (S.A., S.M., K.E.N.), Division of Paediatric Med
  • Mahant S; Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada; Department of Paediatrics (S.A., S.M., K.E.N.), Division of Paediatric Medicine, Hospital for Sick Children, Toronto, Ontario, Canada; Institute for Clinical Evaluative Sciences
  • Nicholas D; Faculty of Social Work (D.N.), University of Calgary, Edmonton, Alberta, Canada.
  • Widger K; Lawrence S. Bloomberg Faculty of Nursing (S.A., K.W.), University of Toronto, Toronto, Ontario, Canada; Institute for Clinical Evaluative Sciences (S.M., K.W., K.E.N.), Toronto, Ontario, Canada; Pediatric Advanced Care Team (K.W., K.E.N.), Hospital for Sick Children, Toronto, Ontario, Canada.
  • McGuire KM; Patient Research Partner (K.M.), Patient and Community Engagement Research, Calgary, Alberta, Canada.
  • Nelson KE; Child Health Evaluative Sciences (M.F., F.B., S.A., S.M., K.E.N.), SickKids Research Institute, Toronto, Ontario, Canada; Department of Paediatrics (S.A., S.M., K.E.N.), Division of Paediatric Medicine, Hospital for Sick Children, Toronto, Ontario, Canada; Institute for Clinical Evaluative Sciences
J Pain Symptom Manage ; 68(3): 237-245.e5, 2024 Sep.
Article en En | MEDLINE | ID: mdl-38810951
ABSTRACT
CONTEXT Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement.

OBJECTIVES:

To describe the skills that caregivers developed as they gained experience making medical decisions.

METHODS:

Eligible caregivers had a child who met referral criteria for their centre's Complex Care program for >1 year, were adults responsible for their child's medical decisions, and spoke English or a language with an available interpreter. We followed a semistructured interview guide to ask caregivers to describe and reflect on two challenging medical decisions that they made for their child-one early and one recent. Guided by interpretive description, we identified and refined themes in an iterative process.

RESULTS:

We conducted 15 interviews with 16 parents (14 [88%] women, two [13%] men) of a child with medical complexity (aged 1-17 years). Parents described 1) becoming more adept at managing decisional information, 2) recognizing the influence of the decision's context, 3) building stronger relationships with providers, and 4) becoming more effective at guiding their child's care as a decision-maker. As parents built these skills, they developed a greater sense of agency and confidence as decision-makers.

CONCLUSION:

Parents of children with medical complexity change how they approach decision making over time as they acquire relevant skills. These findings can inform the development of interventions to support skill-building among new caregivers.
Asunto(s)
Palabras clave
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Toma de Decisiones / Confianza Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male / Middle aged Idioma: En Revista: J Pain Symptom Manage Asunto de la revista: NEUROLOGIA / PSICOFISIOLOGIA / TERAPEUTICA Año: 2024 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Toma de Decisiones / Confianza Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male / Middle aged Idioma: En Revista: J Pain Symptom Manage Asunto de la revista: NEUROLOGIA / PSICOFISIOLOGIA / TERAPEUTICA Año: 2024 Tipo del documento: Article País de afiliación: Canadá Pais de publicación: Estados Unidos