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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BackgroundWhen 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 self-efficacy, 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: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?Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care- In Care helps them with the transitions they experience?MethodsThis 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.DiscussionData collection will begin in four Canadian provinces (Alberta, Manitoba, Ontario and Saskatchewan) in February 2020 and is expected to be completed in June 2021. The results will inform policy and practice as MT4C-In Care can be revised for local contexts and posted on websites such as those hosted by the Alzheimer Society of Canada.Trial registrationNCT04226872 ClinicalTrials.gov Registered 09 January 2020Protocol Version #2 Feb 19, 2020.

Highlights

  • 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 results will inform policy and practice as MT4CIn Care can be revised for local contexts and posted on websites such as those hosted by the Alzheimer Society of Canada

  • The purpose of this study is to evaluate whether use of My Tools 4 Care (MT4C)-In Care over 2 months is effective to decrease loneliness and grief, and increase hope, general selfefficacy, social support and mental health as compared to an educational control group

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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. Family and friend carers (hereafter referred to as ‘carers’) are challenged to cope with the many transitions that occur across all stages of dementia. For these carers, transitions involve learning new tasks, making significant adaptations to the physical and/or social environment, and changing their roles and relationships [2]. Little is known about the transition experience, support needs, and effective interventions for carers after their family member with dementia moves to a 24-h long-term care (LTC) community [4, 5]. Hope, confidence in the ability to deal with difficult situations or self-efficacy, and social support can improve their mental health

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ReferencesShowing 10 of 46 papers
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  • 10.1186/s12877-017-0581-6
Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers
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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
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CitationsShowing 3 of 3 papers
  • Open Access Icon
  • Research Article
  • 10.1016/j.jamda.2025.105484
Effectiveness of My Tools for Care-in Care: A Pragmatic Randomized Controlled Trial.
  • Apr 1, 2025
  • Journal of the American Medical Directors Association
  • Hannah M O'Rourke + 9 more

Effectiveness of My Tools for Care-in Care: A Pragmatic Randomized Controlled Trial.

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  • 10.1186/s12877-022-03236-8
Building a new life: a qualitative study of how family carers deal with significant changes
  • Jul 1, 2022
  • BMC Geriatrics
  • Wendy Duggleby + 12 more

BackgroundFamily carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers’ experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers.MethodsEight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data.Findings/resultsCarers dealt with the significant changes they experienced through the process of “building a new life” consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life.ConclusionThe process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

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  • Research Article
  • Cite Count Icon 28
  • 10.1002/cl2.1369
Digital interventions to reduce social isolation and loneliness in older adults: An evidence and gap map.
  • Nov 27, 2023
  • Campbell systematic reviews
  • Vivian Welch + 18 more

Social isolation and loneliness are more common in older adults and are associated with a serious impact on their well-being, mental health, physical health, and longevity. They are a public health concern highlighted by the COVID-19 pandemic restrictions, hence the need for digital technology tools to enable remotely delivered interventions to alleviate the impact of social isolation and loneliness during the COVID-19 restrictions. To map available evidence on the effects of digital interventions to mitigate social isolation and/or loneliness in older adults in all settings except hospital settings. We searched the following databases from inception to May 16,2021, with no language restrictions. Ovid MEDLINE, Embase, APA PsycInfo via Ovid, CINAHL via EBSCO, Web of Science via Clarivate, ProQuest (all databases), International Bibliography of the Social Sciences (IBSS) via ProQuest, EBSCO (all databases except CINAHL), Global Index Medicus, and Epistemonikos. Titles and abstracts and full text of potentially eligible articles were independently screened in duplicate following the eligibility criteria. We developed and pilot tested a data extraction code set in Eppi-Reviewer and data were individually extracted and coded based on an intervention-outcome framework which was also used to define the dimensions of the evidence and gap map. We included 200 articles (103 primary studies and 97 systematic reviews) that assessed the effects of digital interventions to reduce social isolation and/or loneliness in older adults. Most of the systematic reviews (72%) were classified as critically low quality, only 2% as high quality and 25% were published since the COVID-19 pandemic. The evidence is unevenly distributed with clusters predominantly in high-income countries and none in low-income countries. The most common interventions identified are digital interventions to enhance social interactions with family and friends and the community via videoconferencing and telephone calls. Digital interventions to enhance social support, particularly socially assistive robots, and virtual pets were also common. Most interventions focused on reducing loneliness and depression and improving quality of life of older adults. Major gaps were identified in community level outcomes and process indicators. No included studies or reviews assessed affordability or digital divide although the value of accessibility and barriers caused by digital divide were discussed in three primary studies and three reviews. Adverse effects were reported in only two studies and six reviews. No study or review included participants from the LGBTQIA2S+ community and only one study restricted participants to 80 years and older. Very few described how at-risk populations were recruited or conducted any equity analysis to assess differences in effects for populations experiencing inequities across PROGRESS-Plus categories. The restrictions placed on people during the pandemic have shone a spotlight onto social isolation and loneliness, particularly for older adults. This evidence and gap map shows available evidence on the effectiveness of digital interventions for reducing social isolation or loneliness in older adults. Although the evidence is relatively large and recent, it is unevenly distributed and there is need for more high-quality research. This map can guide researchers and funders to consider areas of major gaps as priorities for further research.

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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
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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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  • Research Article
  • Cite Count Icon 12
  • 10.1186/s12877-017-0581-6
Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers
  • Aug 14, 2017
  • BMC Geriatrics
  • Wendy Duggleby + 12 more

BackgroundFamily carers of older persons with Alzheimer’s’ disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions:Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group?Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? andAre the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group?Methods/DesignUsing a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time.DiscussionData collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society.Trial registrationClinicalTrials.gov Identifier: NCT02428387

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Standards and quality of care for older persons in long term care facilities: a scoping review
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BackgroundCaring for older persons has become a global necessity to ensure functional ability and healthy ageing. It is of paramount importance that standards of care are monitored, especially for older persons who live in long term care facilities (LTCF). We, therefore, scoped and summarised evidence relating to standards and the quality of care for older persons in LTCFs in gerontological literature globally.MethodsWe conducted a scoping review using Askey and O’Malley’s framework, including Levac et al. recommendations. PubMed, CINAHL, Health Sources, Scopus, Cochrane Library, and Google Scholar were searched with no date limitation up to May 2020 using keywords, Boolean terms, and medical subject headings. We also consulted the World Health Organization website and the reference list of included articles for evidence sources. This review also included peer-reviewed publications and grey literature in English that focused on standards and quality of care for older residents in LTCFs. Two reviewers independently screened the title, abstract, and full-text of evidence sources screening stages and performed the data extraction. Thematic content analysis was used, and a summary of the findings are reported narratively.ResultsSixteen evidence sources published from 1989 to 2017 met this study’s eligibility criteria out of 73,845 citations obtained from the broader search. The majority of the studies were conducted in the USA 56% (9/16), and others were from Canada, Hong Kong, Ireland, Norway, Israel, Japan, and France. The included studies presented evidence on the effectiveness of prompted voiding intervention for urinary incontinence in LTCFs (37.5%), the efficacy of professional support to LTCF staff (18.8%), and the prevention-effectiveness of a pressure ulcer programme in LTCFs (6.3%). Others presented evidence on regulation and quality of care (12.5%); nursing documentation and quality of care (6.3%); medical, nursing, and psychosocial standards on the quality of care (6.3%); medication safety using the Beer criteria (6.3%); and the quality of morning care provision (6.3%).ConclusionThis study suggests most studies relating to standards and quality of care in LTCFs focus on effectiveness of interventions, few on people-centredness and safety, and are mainly conducted in European countries and the United States of America. Future studies on people-centerdness, safety, and geographical settings with limited or no evidence are recommended.

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Pressure ulcer multidisciplinary teams via telemedicine: a pragmatic cluster randomized stepped wedge trial in long term care
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BackgroundThe study was conducted to determine the clinical and cost effectiveness of enhanced multi-disciplinary teams (EMDTs) vs. ‘usual care’ for the treatment of pressure ulcers in long term care (LTC) facilities in Ontario, CanadaMethodsWe conducted a multi-method study: a pragmatic cluster randomized stepped-wedge trial, ethnographic observation and in-depth interviews, and an economic evaluation. Long term care facilities (clusters) were randomly allocated to start dates of the intervention. An advance practice nurse (APN) with expertise in skin and wound care visited intervention facilities to educate staff on pressure ulcer prevention and treatment, supported by an off-site hospital based expert multi-disciplinary wound care team via email, telephone, or video link as needed. The primary outcome was rate of reduction in pressure ulcer surface area (cm2/day) measured on before and after standard photographs by an assessor blinded to facility allocation. Secondary outcomes were time to healing, probability of healing, pressure ulcer incidence, pressure ulcer prevalence, wound pain, hospitalization, emergency department visits, utility, and cost.Results12 of 15 eligible LTC facilities were randomly selected to participate and randomized to start date of the intervention following the stepped wedge design. 137 residents with a total of 259 pressure ulcers (stage 2 or greater) were recruited over the 17 month study period. No statistically significant differences were found between control and intervention periods on any of the primary or secondary outcomes. The economic evaluation demonstrated a mean reduction in direct care costs of $650 per resident compared to ‘usual care’. The qualitative study suggested that onsite support by APN wound specialists was welcomed, and is responsible for reduced costs through discontinuation of expensive non evidence based treatments. Insufficient allocation of nursing home staff time to wound care may explain the lack of impact on healing.ConclusionEnhanced multi-disciplinary wound care teams were cost effective, with most benefit through cost reduction initiated by APNs, but did not improve the treatment of pressure ulcers in nursing homes. Policy makers should consider the potential yield of strengthening evidence based primary care within LTC facilities, through outreach by APNs.Trial registrationClinicalTrials.gov identifier NCT01232764

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