Current Knowledge on the Evolution of Care Partner Burden, Needs, and Coping in Parkinson's Disease.

Parkinson's disease burden care partner coping needs

Journal

Movement disorders clinical practice
ISSN: 2330-1619
Titre abrégé: Mov Disord Clin Pract
Pays: United States
ID NLM: 101630279

Informations de publication

Date de publication:
May 2021
Historique:
received: 16 11 2020
revised: 01 03 2021
accepted: 07 03 2021
entrez: 13 5 2021
pubmed: 14 5 2021
medline: 14 5 2021
Statut: epublish

Résumé

Care partners support people with Parkinson's disease through a long journey ranging from independence to dependence for many daily tasks. Longitudinal studies are important to understand the evolution of this process and predictors of future needs of care partners. A scoping review was conducted, searching PubMed for longitudinal studies examining care partner burden, needs or coping in Parkinson's disease published through May 2020. Eight observational studies and 19 interventional studies met the eligibility criteria. Longitudinal observation ranged from 7 weeks to 10 years, involving between six and 8515 care partners. All studies addressed care partner burden, while two and three studies respectively addressed needs and coping. Only one study related burden to specific stages or duration of disease. Results from identified studies show that care partners in Parkinson's disease are at risk for increasing burden over time. Multiple predictors of future burden have been identified related to the person with Parkinson's disease, the care partner, or an intervention. No studies examined the evolution of needs and coping in caregiving in Parkinson's disease. The scarcity of longer term, observational research on the temporal evolution of burden and particularly needs and coping in caregiving for someone with PD is a main identified gap. Even within these observational studies, the impact of caregiving is not often reported. Longitudinal studies on these topics are needed to help understand their change over time and relation to each other, which can inform support planning for care partners.

Sections du résumé

BACKGROUND BACKGROUND
Care partners support people with Parkinson's disease through a long journey ranging from independence to dependence for many daily tasks. Longitudinal studies are important to understand the evolution of this process and predictors of future needs of care partners.
METHODS METHODS
A scoping review was conducted, searching PubMed for longitudinal studies examining care partner burden, needs or coping in Parkinson's disease published through May 2020.
RESULTS RESULTS
Eight observational studies and 19 interventional studies met the eligibility criteria. Longitudinal observation ranged from 7 weeks to 10 years, involving between six and 8515 care partners. All studies addressed care partner burden, while two and three studies respectively addressed needs and coping. Only one study related burden to specific stages or duration of disease. Results from identified studies show that care partners in Parkinson's disease are at risk for increasing burden over time. Multiple predictors of future burden have been identified related to the person with Parkinson's disease, the care partner, or an intervention. No studies examined the evolution of needs and coping in caregiving in Parkinson's disease.
CONCLUSION CONCLUSIONS
The scarcity of longer term, observational research on the temporal evolution of burden and particularly needs and coping in caregiving for someone with PD is a main identified gap. Even within these observational studies, the impact of caregiving is not often reported. Longitudinal studies on these topics are needed to help understand their change over time and relation to each other, which can inform support planning for care partners.

Identifiants

DOI: 10.1002/mdc3.13201 PMID: 33981783 PMC: PMC8088088
pubmed: 33981783
doi: 10.1002/mdc3.13201
pii: MDC313201
pmc: PMC8088088
doi:

Types de publication

Journal Article Review

Langues

eng

Pagination

510-520

Informations de copyright

© 2021 International Parkinson and Movement Disorder Society.

Déclaration de conflit d'intérêts

No specific funding was received for this work and the authors declare that there are no conflicts of interest relevant to this work.

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Auteurs

Max J Hulshoff (MJ)

Department of Neurology and Parkinson Center Radboud University Medical Center Nijmegen The Netherlands.

Elaine Book (E)

Pacific Parkinson's Research Centre University of British Columbia Vancouver British Columbia Canada.

Nabila Dahodwala (N)

Department of Neurology, Perelman School of Medicine University of Pennsylvania Philadelphia Pennsylvania USA.

Caroline M Tanner (CM)

Department of Neurology, Weill Institute for Neuroscience University of California - San Francisco, and Parkinson's Disease Research Education and Clinical Center, San Francisco Veteran's Affairs Medical Center San Francisco California USA.

Christina Robertson (C)

Independent Researcher USA.

Connie Marras (C)

Morton and Gloria Shulman Movement Disorders Centre and the Edmond J Safra Program in Parkinson's Research Toronto Western Hospital Toronto Ontario Canada.

Classifications MeSH