Framing advance care planning in Parkinson disease: Patient and care partner perspectives.

Advance Care Planning Aged Caregivers / psychology Female Health Communication Health Knowledge, Attitudes, Practice Humans Interviews as Topic Male Palliative Care Parkinson Disease / psychology Patient-Centered Care / methods Qualitative Research

Journal

Neurology
ISSN: 1526-632X
Titre abrégé: Neurology
Pays: United States
ID NLM: 0401060

Informations de publication

Date de publication:
28 05 2019
Historique:
received: 04 10 2018
accepted: 25 01 2019
pubmed: 28 4 2019
medline: 27 12 2019
entrez: 28 4 2019
Statut: ppublish

Résumé

Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care. This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes. Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP. ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

Identifiants

DOI: 10.1212/WNL.0000000000007552 PMID: 31028124 PMC: PMC6556088
pubmed: 31028124
pii: WNL.0000000000007552
doi: 10.1212/WNL.0000000000007552
pmc: PMC6556088
doi:

Types de publication

Journal Article Multicenter Study Randomized Controlled Trial Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e2571-e2579

Subventions

Organisme : NIA NIH HHS
ID : K76 AG054782
Pays : United States
Organisme : NINR NIH HHS
ID : U24 NR014637
Pays : United States
Organisme : NINR NIH HHS
ID : U2C NR014637
Pays : United States

Commentaires et corrections

Type : CommentIn

Informations de copyright

© 2019 American Academy of Neurology.

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Auteurs

Hillary D Lum (HD)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada. Hillary.lum@ucdenver.edu.

Sarah R Jordan (SR)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Adreanne Brungardt (A)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Roman Ayele (R)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Maya Katz (M)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Janis M Miyasaki (JM)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Anne Hall (A)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Jacqueline Jones (J)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

Benzi Kluger (B)

From the Division of Geriatric Medicine, Department of Medicine (H.D.L., S.R.J., A.B.), College of Nursing (R.A., J.J.), and Department of Neurology (B.K.), University of Colorado Anschutz Medical Campus, Aurora; VA Eastern Colorado Geriatric Research Education and Clinical Center (H.D.L.); Denver-Seattle Center of Innovation (R.A.), Rocky Mountain Regional Veterans Affairs Medical Center, Denver, CO; Movement Disorders and Neuromodulation Center (M.K.) and Research Stakeholder (A.H.), University of California, San Francisco; and Division of Neurology (J.M.M.), University of Alberta, Edmonton, Canada.

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Classifications MeSH

questionsmedicales.fr › Administration des services de santé › Gestion des soins aux patients › Services de santé polyvalents › Planification des soins du patient › Planification anticipée des soins › Framing advance care planning in Parkinson...
questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Sujet âgé › Framing advance care planning in Parkinson...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Personnel de santé › Aidants › Framing advance care planning in Parkinson...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Communication sur la santé › Framing advance care planning in Parkinson...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Prestations des soins de santé › Attitude envers la santé › Connaissances, attitudes et pratiques en santé › Framing advance care planning in Parkinson...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Framing advance care planning in Parkinson...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Entretiens comme sujet › Framing advance care planning in Parkinson...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Services de santé › Soins aux patients › Soins palliatifs › Framing advance care planning in Parkinson...
questionsmedicales.fr › Maladies du système nerveux › Maladies neurodégénératives › Maladie de Parkinson › Framing advance care planning in Parkinson...
questionsmedicales.fr › Administration des services de santé › Gestion des soins aux patients › Services de santé polyvalents › Soins de santé primaires › Soins centrés sur le patient › Framing advance care planning in Parkinson...
questionsmedicales.fr › Disciplines des sciences naturelles › Science › Recherche › Recherche empirique › Recherche qualitative › Framing advance care planning in Parkinson...