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Centering the person in development of a model of care for people with Parkinson's disease: a qualitative study.
Clarkin, Christine M; Smith, D Grace; McGough, Ellen L; Mahler, Leslie A.
Afiliación
  • Clarkin CM; Physical Therapy Department, University of Rhode Island, Kingston, RI, USA.
  • Smith DG; Interdisciplinary Neuroscience Program, University of Rhode Island, Kingston, RI, USA.
  • McGough EL; George and Anne Ryan Institute for Neuroscience, University of Rhode Island, Kingston, RI, USA.
  • Mahler LA; Advance Clinical and Translational Research, Division of Biology and Medicine, Brown University, Providence, RI, USA.
Disabil Rehabil ; : 1-12, 2024 Aug 13.
Article en En | MEDLINE | ID: mdl-39136378
ABSTRACT

PURPOSE:

Obtain the perspectives of people with Parkinson's disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson's Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs.

METHODS:

This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis.

RESULTS:

Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community.

CONCLUSIONS:

Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.
Health professionals need to inquire about an individual's lived experience and employ strategies that center the person and personalizes their care while also integrating a coordinated interdisciplinary approach.An ideal model of care needs to integrate healthcare professionals as part of a larger care team that includes the person with Parkinson's disease, and facilitates communication and planning with those team membersAn ideal model of care needs to integrate the larger community and seek to refer and build relationships with health professionals, organizations, and non-medical providers that will facilitate holistic care and advocate for people with Parkinson's disease.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Disabil Rehabil Asunto de la revista: REABILITACAO 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 Idioma: En Revista: Disabil Rehabil Asunto de la revista: REABILITACAO Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido