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

Abstract

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).

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

“…MT4C-In Care has been shown to be feasible and acceptable and holds promise in promoting mental well-being by supporting carers of a person living with dementia residing in LTC [ 24 ]. The study protocol outlined in this manuscript includes an assessment of the potential for MT4C-In Care to target social support and loneliness as well as hope, general self-efficacy and grief, which evidence supports are closely related to mental health.…”

“…The components of MT4C-In Care include a home page which introduces the toolkit and sections: a) "About Me" (contains guided evidence-based activities), b) "Common Changes to Expect", c) "Frequently Asked Questions", and d) Resources. More detailed information about My Tools 4 Care-In Care is published elsewhere [24].…”

“…A feasibility study of MT4C-In Care with 37 participants demonstrated an increase in hope (p = 0.006) and decrease in grief (p = 0.005) from baseline to a time point 2 months later [24]. Although statistically significant differences in mental health were not detected, hope (r = 0.43, p = 0.027) and grief (r = − 0.66, p = 0.00) were significantly related to mental health.…”

Qualitative Research and Its Importance in Adapting Interventions

“…MT4C was then adapted for family carers of persons living with dementia residing in LTC using a variety of qualitative methodologies at different stages of adaptation. The adapted intervention (known as MT4C-In Care) was evaluated and found to be feasible, acceptable, and easy to use and increased carers hope, self-efficacy, and decreased feelings of guilt and grief (Duggleby, Jovel Ruiz, et al, 2018).…”

“…Other adaptations important to consider are that language and presentation are acceptable to the new target population (Escoffery et al, 2019). Qualitative focus groups of carers of persons living with dementia residing in LTC were engaged in reviewing MT4C and were asked about language and presentation (Duggleby, Jovel Ruiz, et al, 2018). Wording was revised and additional pictures were added.…”