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Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study

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...

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Autores principales: Fleisher, Jori E, Akram, Faizan, Lee, Jeanette, Klostermann, Ellen C, Hess, Serena P, Myrick, Erica, Levin, Melissa, Ouyang, Bichun, Wilkinson, Jayne, Hall, Deborah A, Chodosh, Joshua
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9185354/
https://www.ncbi.nlm.nih.gov/pubmed/35481819
http://dx.doi.org/10.2196/34750
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author Fleisher, Jori E
Akram, Faizan
Lee, Jeanette
Klostermann, Ellen C
Hess, Serena P
Myrick, Erica
Levin, Melissa
Ouyang, Bichun
Wilkinson, Jayne
Hall, Deborah A
Chodosh, Joshua
author_facet Fleisher, Jori E
Akram, Faizan
Lee, Jeanette
Klostermann, Ellen C
Hess, Serena P
Myrick, Erica
Levin, Melissa
Ouyang, Bichun
Wilkinson, Jayne
Hall, Deborah A
Chodosh, Joshua
author_sort Fleisher, Jori E
collection PubMed
description 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: 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: 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: 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: 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: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459 INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/34750
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spelling pubmed-91853542022-06-11 Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study Fleisher, Jori E Akram, Faizan Lee, Jeanette Klostermann, Ellen C Hess, Serena P Myrick, Erica Levin, Melissa Ouyang, Bichun Wilkinson, Jayne Hall, Deborah A Chodosh, Joshua JMIR Res Protoc Protocol 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: 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: 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: 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: 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: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459 INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/34750 JMIR Publications 2022-05-26 /pmc/articles/PMC9185354/ /pubmed/35481819 http://dx.doi.org/10.2196/34750 Text en ©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. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.
spellingShingle Protocol
Fleisher, Jori E
Akram, Faizan
Lee, Jeanette
Klostermann, Ellen C
Hess, Serena P
Myrick, Erica
Levin, Melissa
Ouyang, Bichun
Wilkinson, Jayne
Hall, Deborah A
Chodosh, Joshua
Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title_full Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title_fullStr Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title_full_unstemmed Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title_short Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study
title_sort peer mentoring program for informal caregivers of homebound individuals with advanced parkinson disease (share the care): protocol for a single-center, crossover pilot study
topic Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9185354/
https://www.ncbi.nlm.nih.gov/pubmed/35481819
http://dx.doi.org/10.2196/34750
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