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Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
Ames, Stefanie G; Delaney, Rebecca K; Delgado-Corcoran, Claudia; Houtrow, Amy J; Alvey, Justin; Watt, Melissa H; Murphy, Nancy.
Afiliación
  • Ames SG; Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA.
  • Delaney RK; Department of Population Health Sciences, University of Utah School of Medicine, Salt Lake City, UT, USA.
  • Delgado-Corcoran C; Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA.
  • Houtrow AJ; Department of Physical Medicine & Rehabilitation, University of Pittsburgh, Pittsburgh, PA, USA.
  • Alvey J; Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA.
  • Watt MH; Department of Population Health Sciences, University of Utah School of Medicine, Salt Lake City, UT, USA.
  • Murphy N; Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA.
Dev Med Child Neurol ; 66(9): 1226-1233, 2024 Sep.
Article en En | MEDLINE | ID: mdl-38327250
ABSTRACT

AIM:

To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC).

METHOD:

In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to identify themes describing the impact of disability-based discrimination in pediatric healthcare on the parents of CMC.

RESULTS:

Thirty participants from 15 US states were interviewed. Four themes were developed regarding the impact of disability-based discrimination in healthcare on parents. The themes were (1) discrimination leads to a loss of trust in healthcare providers; (2) discrimination increases the burden of caregiving; (3) discrimination impacts parental well-being; and (4) racism and poverty-based discrimination amplifies disability-based discrimination.

INTERPRETATION:

The experience of discrimination toward their child results in loss of trust and therapeutic relationship between provider and parent, causes increased burden to the family, and contributes to decreased parental well-being. These experiences are magnified in minoritized families and in families perceived to have a lower socioeconomic status based on insurance type.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Investigación Cualitativa Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Adolescent / Adult / Child / Female / Humans / Male / Middle aged País/Región como asunto: America do norte Idioma: En Revista: Dev Med Child Neurol Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido
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 / Investigación Cualitativa Tipo de estudio: Prognostic_studies / Qualitative_research Límite: Adolescent / Adult / Child / Female / Humans / Male / Middle aged País/Región como asunto: America do norte Idioma: En Revista: Dev Med Child Neurol Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido