Your browser doesn't support javascript.
loading
Perceptions of palliative care in Huntington's disease: A qualitative study.
Heffernan, B; Forbes, E; Seeberger, L; Shattuck, J; Cook, M; Ayele, R; Kluger, B M.
Afiliación
  • Heffernan B; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA. Electronic address: brooke.heffernan@cuanschutz.edu.
  • Forbes E; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA.
  • Seeberger L; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA.
  • Shattuck J; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA.
  • Cook M; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA.
  • Ayele R; University of Colorado, 1635 Aurora Ct, Aurora, CO, 80045, USA.
  • Kluger BM; University of Rochester, 919 Westfall Rd, Rochester, NY, 14618, USA.
Parkinsonism Relat Disord ; 120: 106007, 2024 Mar.
Article en En | MEDLINE | ID: mdl-38241953
ABSTRACT

INTRODUCTION:

Palliative care focuses on improving patient and family quality of life by managing symptoms, psychosocial issues and spiritual concerns. Huntington's disease is a progressive neurodegenerative disorder with no current disease modifying therapy. Although the palliative care model has been postulated to be an integral part of HD care, there are gaps in knowledge about how this care should be implemented. This study aims to identify perceptions of palliative care in Huntington's Disease (HD), palliative care needs of people living with HD, and at what point they feel they would benefit from these resources.

METHODS:

Participants volunteered from a large academic institution patient base to be involved in semi structured interviews that explored patient and caregiver experience surrounding their diagnosis, disease management, quality of life, and areas for improvement. Inclusion criteria for participants was a diagnosis of Huntington's disease and/or a self-identified caregiver of a person living with the disease.

RESULTS:

A total of 12 independent patients, three independent caregivers, and five dyads completed the interviews. Themes identified included needs that would provide patient and caregiver centered treatment, current gaps in care, an openness and desire for palliative care, and knowledge about the desired timing of palliative care in treatment plans.

CONCLUSION:

People living with HD and caregivers of people with HD most desire access to treatment that would focus on symptom management, availability of social resources, advanced care planning and spiritual wellbeing. The preferred timing of this intervention for most individuals would be at the onset of symptoms.
Asunto(s)
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: Cuidados Paliativos / Enfermedad de Huntington Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Parkinsonism Relat Disord Asunto de la revista: NEUROLOGIA Año: 2024 Tipo del documento: Article 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: Cuidados Paliativos / Enfermedad de Huntington Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Parkinsonism Relat Disord Asunto de la revista: NEUROLOGIA Año: 2024 Tipo del documento: Article Pais de publicación: Reino Unido