Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study.
Parkinson disease
anxiety
care partner
caregiver strain
caregiving
carer
depression
intervention
peer mentor
peer support
volunteer
Journal
JMIR research protocols
ISSN: 1929-0748
Titre abrégé: JMIR Res Protoc
Pays: Canada
ID NLM: 101599504
Informations de publication
Date de publication:
26 May 2022
26 May 2022
Historique:
received:
06
11
2021
accepted:
28
04
2022
revised:
27
04
2022
pubmed:
29
4
2022
medline:
29
4
2022
entrez:
28
4
2022
Statut:
epublish
Résumé
Homebound individuals with advanced Parkinson disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. The aim of this study was to test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. This was a single-center, 16-week pilot study of caregiver peer mentoring nested within a year-long controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and postmentoring intervention at home visits 2 and 3. Enrollment and peer-mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were White, female spouses or partners of individuals with PD; mentors had a mean of 8.7 (SD 6.4) years of caregiving experience, and 33 mentors were matched with at least 1 mentee. This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. DERR1-10.2196/34750.
Sections du résumé
BACKGROUND
BACKGROUND
Homebound individuals with advanced Parkinson disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD.
OBJECTIVE
OBJECTIVE
The aim of this study was to test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain.
METHODS
METHODS
This was a single-center, 16-week pilot study of caregiver peer mentoring nested within a year-long controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and postmentoring intervention at home visits 2 and 3.
RESULTS
RESULTS
Enrollment and peer-mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were White, female spouses or partners of individuals with PD; mentors had a mean of 8.7 (SD 6.4) years of caregiving experience, and 33 mentors were matched with at least 1 mentee.
CONCLUSIONS
CONCLUSIONS
This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases.
TRIAL REGISTRATION
BACKGROUND
ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID)
UNASSIGNED
DERR1-10.2196/34750.
Identifiants
pubmed: 35481819
pii: v11i5e34750
doi: 10.2196/34750
pmc: PMC9185354
doi:
Banques de données
ClinicalTrials.gov
['NCT03189459']
Types de publication
Journal Article
Langues
eng
Pagination
e34750Subventions
Organisme : NINDS NIH HHS
ID : K23 NS097615
Pays : United States
Organisme : NIA NIH HHS
ID : P30 AG066512
Pays : United States
Informations de copyright
©Jori E Fleisher, Faizan Akram, Jeanette Lee, Ellen C Klostermann, Serena P Hess, Erica Myrick, Melissa Levin, Bichun Ouyang, Jayne Wilkinson, Deborah A Hall, Joshua Chodosh. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 26.05.2022.
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