A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.

Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center. We conducted a cross-sectional qualitative stu...

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Publicado en:Academic Pediatrics Vol. 22; no. 1; pp. 107 - 116
Autores principales: Yu, Justin A., Cook, Stacey, Imming, Christina, Knezevich, Liana, Ray, Kristin, Houtrow, Amy, Rosenberg, Abby R., Schenker, Yael
Formato: research tables/charts Journal Article
Publicado: Elsevier B.V. Jan2022
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jan2022
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      pub: Elsevier B.V.
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        10.1016/j.acap.2021.05.012
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        atl: A Qualitative Study of Family Caregiver Perceptions of High-Quality Care at a Pediatric Complex Care Center.
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        au:
          Yu, Justin A.
          Cook, Stacey
          Imming, Christina
          Knezevich, Liana
          Ray, Kristin
          Houtrow, Amy
          Rosenberg, Abby R.
          Schenker, Yael
        affil: Department of Pediatrics, Division of Pediatric Hospital Medicine, University of Pittsburgh School of Medicine (JA Yu and C Imming), Pittsburgh, Pa
      sug:
        subj:
          Caregiver Attitudes Evaluation
          Quality of Health Care
          Pediatric Care
          Family Attitudes Evaluation
          Human
          Qualitative Studies
          Cross Sectional Studies
          Semi-Structured Interview
          Life Experiences
          Thematic Analysis
          Descriptive Statistics
          Female
          Male
          Outpatient Service
          Female
          Male
      ab: Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center. We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework. We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs. Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
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      ougenre: Article
    language: English
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