Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial

Duggleby, Wendy; Ploeg, Jenny; McAiney, Carrie; Peacock, Shelley; Fisher, Kathryn; Ghosh, Sunita; Markle‐Reid, Maureen; Swindle, Jennifer; Williams, Allison; Triscott, Jean; Forbes, Dorothy; Ruiz, Kathya Jovel

doi:10.2196/10484

Cited by 53 publications

(101 citation statements)

References 40 publications

(48 reference statements)

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“…Participants reported spending the most time on the hope activity, and the preliminary findings suggest significant increases in hope from baseline. Despite no significant differences in mental health scores from baseline, similar to our study findings, several studies have found a significant positive relationship of hope and quality of life in carers of person with ADRD; as their hope increased so did their mental health [ 8 , 17 ]. As well, there were significant decreases in grief, in particular, the participants’ tension and guilt.…”

Section: Discussionsupporting

confidence: 89%

“…We used a self-reporting tool to examine what activities/sections of MT4C-In Care were used the most, but data were missing. Similar findings have been reported for other self-administered web-based interventions [ 17 , 29 ]. Future research should build measures of time spent by each participant on each activity, into the design of the intervention, so that such data would be captured automatically and not rely on self-report.…”

Section: Discussionsupporting

confidence: 88%

“…Based on an adaptation of transition theory [ 15 ], our research team has previously developed a flexible multi-component intervention that combines information and interactive activities tailored to family carers of older persons with ADRD living in the community (My Tools 4 Care). My Tools 4 Care (https:// www.mytools4care.ca ) was recently evaluated using a pragmatic randomized control trial approach [ 16 ] and found to have a significant positive impact on the hope of participants in the treatment group compared to an educational control group and from baseline [ 17 ]. Hope has also been found to have a significant positive relationship with mental health in this population [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

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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

Duggleby

Ruiz

Ploeg

et al. 2018

Pilot Feasibility Stud

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BackgroundFollowing 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.MethodsThe 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.ResultsThe 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.ConclusionMT4C-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 registrationClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).

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Section: Discussionsupporting

confidence: 89%

Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

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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

Duggleby

Ruiz

Ploeg

et al. 2018

Pilot Feasibility Stud

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“…This mode of delivery for interventions for carers of individuals living with chronic diseases other than dementia, has been shown to effectively improve self‐esteem, self‐efficacy and depression (Ploeg et al, ). Web‐based interventions in particular are beneficial for informal carers due to the 24/7 nature of caring and consequent difficulties in accessing services (Duggleby et al, ). Delivery of interventions online may result in improved accessibility of services as well as reduced healthcare costs (Bennett & Glasgow, ).…”

Section: Discussionmentioning

confidence: 99%

What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review

Carter

Monaghan

Santin

2020

Health Soc Care Community

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This scoping review comprehensively describes evidence of using peer support to assist informal carers of individuals with dementia (any type). A systematic search of 11 databases (CINAHL, Cochrane Library, Medline, Embase, PsychInfo, Web of Science, Scopus, Science Direct, ProQuest, TRIP and PubMed) was conducted for research published between 2007-2017 focussing on informal dementia carers, and research designs with interventions incorporating or consisting exclusively of peer support. Authors worked independently to screen retrieved articles, review applicability and extract data.Thirty-six research papers (representing 28 original studies) were identified, from these, two modes of delivery were demonstrated: 12 studies provided the intervention online, and the remainder face-to-face. The review indicated that peer support is of potential benefit to carers if it is delivered via either mode. It is not clear what components may or may not be effective as results provided a mixed landscape of differing intervention effectiveness due to the wide variation in outcome measurements. Trial design using a multi-component intervention was the predominant choice, with the most common components being Information Sharing and Non-Healthcare Professional Support for both delivery modes. The burden/anxiety/depression compendium and health and well-being were the most frequently measured outcomes; perceived level of support was one of the least. The peer support interventions identified included various components, demonstratingno true best practice model. Nonetheless, they can be offered successfully online or faceto-face. This provides a unique opportunity to develop and supply tailored peer support interventions for informal dementia carers to ensure their specific needs are met. Further work is required to construct and evaluate the effectiveness of targeted peer-led support whether online or face-to-face to meet the individual needs of dementia carers. K E Y W O R D Scarers, dementia, interventions, peer support, scoping review, support services | INTRODUC TI ONDementia is a collective term used to describe a group of conditions affecting the brain causing a progressive decline in a range of cognitive and behavioural symptoms including memory loss, change in personality, and problems with communicating and reasoning. Additionally, there is a reduction in ability to carry out normal activities of daily living such as washing, dressing and cooking | 1135 CARTER ET Al.

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“…Based on our previous study [27], the sample should contain approximately 15 participants from each of Alberta and Ontario and 5 participants from each of Saskatchewan and Manitoba, or enough to obtain rich findings. Interviews will last between 15 and 30 min and will be audiotaped.…”

Section: Qualitative Interviewsmentioning

confidence: 99%

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care

et al. 2020

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Background: When a family member resides in long term care facility (LTC), family carers continue caregiving and have been found to have decreases in mental health. The aim of My Tools 4 Care-In Care (an online intervention) is to support carers of persons living with dementia residing in LTC through transitions and increase their selfefficacy, hope, social support and mental health. This article comprises the protocol for a study to evaluate My Tools 4 Care-In Care (MT4C-In Care) by asking the following research questions: 1) Is there a 2 month (immediately post-intervention) and 4 month (2 months post-intervention) increase in mental health, general self-efficacy, social support and hope, and decrease in grief and loneliness, in carers of a person living with dementia residing in LTC using MT4C-In CARE compared to an educational control group? 2) Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care-In Care helps them with the transitions they experience? Methods: This study is a single blinded pragmatic mixed methods randomized controlled trial. Approximately 280 family carers of older persons (65 years of age and older) with dementia residing in LTC will be recruited for this study. Data will be collected at three time points: baseline, 2 month, and 4 months. Based on the feasibility study, we hypothesize that participants using MT4C-In Care will report significant increases in hope, general self-efficacy, social support and mental health quality of life, and significant decreases in grief and loneliness from baseline, as compared to an educational control group. To determine differences between groups and over time, generalized estimating equations analysis will be used. Qualitative descriptive analysis will be used to further evaluate MT4C-In Care and if it supports carers through transitions.

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Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial

Cited by 53 publications

References 40 publications

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

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

What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care

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