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Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities

BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care...

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Autores principales: Duggleby, Wendy, Jovel Ruiz, Kathya, Ploeg, Jenny, McAiney, Carrie, Peacock, Shelley, Nekolaichuk, Cheryl, Holroyd-Leduc, Jayna, Ghosh, Sunita, Brazil, Kevin, Swindle, Jennifer, Forbes, Dorothy, Woodhead Lyons, Sandra, Parmar, Jasneet, Kaasalainen, Sharon, Cottrell, Laura, Paragg, Jillian
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208108/
https://www.ncbi.nlm.nih.gov/pubmed/30410783
http://dx.doi.org/10.1186/s40814-018-0356-7
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author Duggleby, Wendy
Jovel Ruiz, Kathya
Ploeg, Jenny
McAiney, Carrie
Peacock, Shelley
Nekolaichuk, Cheryl
Holroyd-Leduc, Jayna
Ghosh, Sunita
Brazil, Kevin
Swindle, Jennifer
Forbes, Dorothy
Woodhead Lyons, Sandra
Parmar, Jasneet
Kaasalainen, Sharon
Cottrell, Laura
Paragg, Jillian
author_facet Duggleby, Wendy
Jovel Ruiz, Kathya
Ploeg, Jenny
McAiney, Carrie
Peacock, Shelley
Nekolaichuk, Cheryl
Holroyd-Leduc, Jayna
Ghosh, Sunita
Brazil, Kevin
Swindle, Jennifer
Forbes, Dorothy
Woodhead Lyons, Sandra
Parmar, Jasneet
Kaasalainen, Sharon
Cottrell, Laura
Paragg, Jillian
author_sort Duggleby, Wendy
collection PubMed
description BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer’s feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. METHODS: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. RESULTS: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = − 0.66, p < 0.001) were significantly related to mental health quality of life. CONCLUSION: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).
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spelling pubmed-62081082018-11-08 Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities Duggleby, Wendy Jovel Ruiz, Kathya Ploeg, Jenny McAiney, Carrie Peacock, Shelley Nekolaichuk, Cheryl Holroyd-Leduc, Jayna Ghosh, Sunita Brazil, Kevin Swindle, Jennifer Forbes, Dorothy Woodhead Lyons, Sandra Parmar, Jasneet Kaasalainen, Sharon Cottrell, Laura Paragg, Jillian Pilot Feasibility Stud Research BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer’s feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. METHODS: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. RESULTS: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = − 0.66, p < 0.001) were significantly related to mental health quality of life. CONCLUSION: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered). BioMed Central 2018-10-31 /pmc/articles/PMC6208108/ /pubmed/30410783 http://dx.doi.org/10.1186/s40814-018-0356-7 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Duggleby, Wendy
Jovel Ruiz, Kathya
Ploeg, Jenny
McAiney, Carrie
Peacock, Shelley
Nekolaichuk, Cheryl
Holroyd-Leduc, Jayna
Ghosh, Sunita
Brazil, Kevin
Swindle, Jennifer
Forbes, Dorothy
Woodhead Lyons, Sandra
Parmar, Jasneet
Kaasalainen, Sharon
Cottrell, Laura
Paragg, Jillian
Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title_full Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title_fullStr Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title_full_unstemmed Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title_short Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
title_sort mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208108/
https://www.ncbi.nlm.nih.gov/pubmed/30410783
http://dx.doi.org/10.1186/s40814-018-0356-7
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