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

Wendy Duggleby, Kathya Jovel Ruiz, Jenny Ploeg, Carrie McAiney, Shelley Peacock, Cheryl Nekolaichuk, Jayna Holroyd-Leduc, Sunita Ghosh, Kevin Brazil, Jennifer Swindle, Dorothy Forbes, Sandra Woodhead Lyons, Jasneet Parmar, Sharon Kaasalainen, Laura Cottrell, Jillian Paragg, Wendy Duggleby, Kathya Jovel Ruiz, Jenny Ploeg, Carrie McAiney, Shelley Peacock, Cheryl Nekolaichuk, Jayna Holroyd-Leduc, Sunita Ghosh, Kevin Brazil, Jennifer Swindle, Dorothy Forbes, Sandra Woodhead Lyons, Jasneet Parmar, Sharon Kaasalainen, Laura Cottrell, Jillian Paragg

Abstract

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).

Keywords: Dementia; Family carers; Grief; Hope; Long-term care; Quality of life; Self-efficacy; Web-based intervention.

Conflict of interest statement

A statement on ethical approval can be found on page 19.Not applicableThe authors declare that they have no competing interest.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Flow of participants through the study

References

    1. Prince, M., et al., World Alzheimers Report 2105 The Global Impact of Dementia. Analysis of the prevalanece, incidence, costs & trends. 2015, Alzheimer’s Disease International London, UK.
    1. Papastavrou E, et al. Factors associated with quality of life among family members of patients with dementia in Cyprus. Int Psychogeriatr. 2014;26(3):443–452. doi: 10.1017/S104161021300224X.
    1. Duggleby, W., D. Schroder, and N. C., Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility. BMC Geriatr, 2013. 13(112): p. 1–8.
    1. Mulin J, Simpson J, Froggatt K. Experiences of spouses with dementia in long term care. Dementia. 2013;12(2):177–191. doi: 10.1177/1471301211418096.
    1. Gaugler JE, et al. Identifying at-risk dementia caregivers following institutionalization. The nursing home admission-burden and nursing home admission-depression diagnostic tools. J Appl Gerontol. 2012;33(5):624–646. doi: 10.1177/0733464812454008.
    1. Statistics and Canada. Living arrangements of seniors. 2015; Available from: .
    1. Canadian, et al., When a nursing home is home: how do Canadian nursing homes mesaure up on quality? 2013, CIHI: Ottawa Ontario.
    1. Duggleby W, et al. A mixed methods study of hope, transitions and quality of life in family caregivers of persons with Alzheimer’s disease. BMC Geriatr. 2011;11.
    1. Meleis, A., Transitions as nursing theory in Transitions Theory. Middle-range and situation specific theories in nursing research and practice, A. Meleis, Editor. 2010, Springer Publishing Company New York. p. 11.
    1. Godwin KM, et al. Technology-driven interventions for caregivers of persons with dementia: a systematic review. American Journal of Alzheimers Disease and Other Dementias. 2013;28(3):216–222. doi: 10.1177/1533317513481091.
    1. Boots LM, et al. A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. International Journal of Geriatric Psychiatry. 2014;29(4):331–344. doi: 10.1002/gps.4016.
    1. Hopwood J, et al. Internet-based interventions aimed at supporting family caregivers of people with dementia: a systematic review. J Med Internet Res. 2018;20(6):e216. doi: 10.2196/jmir.9548.
    1. Andersson S, et al. Information and communication technology-mediated support for working carers of older family members: an integrated literature review. International Journal of Care and Caring. 2017;1(2):247–273. doi: 10.1332/239788217X14957228181753.
    1. Ploeg J, et al. Rapid evidence review of the impact of internet interventions on mental health, general caregiving outcomes, and general health for informal caregivers of adults with chronic conditions living in the community. J Med Internet Res. 2017;19(7):3263. doi: 10.2196/jmir.7564.
    1. Duggleby W, et al. Self-administered intervention for caregivers of persons with Alzheimer’s disease. Clin Nurs Res. 2014;23(1):20–35. doi: 10.1177/1054773812474299.
    1. Duggleby W, et al. Study protocol: pragmatic randomized control trial of an internet-based intervention (My Tools 4 Care) for family caregivers. BMC Geriatr. 2017.
    1. Duggleby W, et al. Web-based intervention for family carers of persons with dementia and multiple chronic conditions (My Tools 4 Care): pragmatic randomized control trial. J Med Internet Res. 2018;20(6):e10484. doi: 10.2196/10484.
    1. Gaugler JE, et al. Family involvement in nursing homes: effects on stress and well-being. Aging Ment Health. 2004;8(1):65–75. doi: 10.1080/13607860310001613356.
    1. Peacock Shelley, Duggleby Wendy, Koop Priscilla. The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia. Palliative and Supportive Care. 2013;12(02):117–126. doi: 10.1017/S1478951512001034.
    1. Cottrell, L., et al., Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24 hour care homes. Aging and Mental Health., Submitted March 14, 2018.
    1. Song M, Sandelowski M, and H.M. ISBN:1412972663, Current practices and emerging trends in conducting mixed methods intervention studies in the health sciences., in Sage Handbook of Mixed Methods in Social and Behavorial Research, A. Tashakkori and C. Teddlie, Editors. 2010, SAGE Thousand Oaks ,CA p 725–748.
    1. Lancaster G, Dodd S, Williamson PR. Design and analysis of pilot studies: recommendations for good practice. Journal of Evaluation of Clinical Practice. 2004;10(2):307–312. doi: 10.1111/j..2002.384.doc.x.
    1. Herth Kaye. Abbreviated instrument to measure hope: development and psychometric evaluation. Journal of Advanced Nursing. 1992;17(10):1251–1259. doi: 10.1111/j.1365-2648.1992.tb01843.x.
    1. Schwarzer R. The general self-efficacy scale. 2012.
    1. Lev E, Munor B, McCorkle RA. A shortened version of an instrument measuring bereavemen. Int J Nurs Stud. 1993;30(3):213–226. doi: 10.1016/0020-7489(93)90032-P.
    1. Duggleby W, et al. A mixed methods study of hope, transitions and quality of life in family caregivers of persons with Alzheimer’s disease. BMC Geriatr. 2011;11(88).
    1. Markowitz JS, et al. Health-related quality of life for caregivers of patients with Alzheimer’s disease. Alzheimer’s Diease and Associated Disorders. 2003;17:209–214. doi: 10.1097/00002093-200310000-00003.
    1. Ware, J.E., et al., User’s manual for the SF-12v2 Health Survey: with a suplement documenting SF-12 Health Survey. 2002, Lincoln, RI QualityMetric Incorporated.
    1. Duggleby W, et al. Feasibility study of an online intervention to support male spouses of women with breast cancer. Oncol Nurs Forum. 2017;44(6):765–775. doi: 10.1188/17.ONF.765-775.
    1. Ploeg J, et al. Using a web-based transitions intervention to help informal caregivers of older adults with dementia and multiple chronic conditions: a qualitative study. J Med Internet Res. 2018;1(1):e2.
    1. Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33(1):77–84.
    1. Dam, A., et al., Development and feasibilty of Inlife: a pilot study of an online social support intervention for informal caregivers of persons with dementia PLoS One, 2017. 12(9): p. e0183386.
    1. Jovel-Ruiz, K., W. Duggleby, and A. Williams, Quality of life: caregivers of persons with dementia and multiple chronic conditions. International journal of care and caring. , Resubmitted June 27, 2018.
    1. Gibbons C, et al. The psychological and health consequences of caring for a spouse with dementia: a critical comparison of husbands and wives. Journal of Women & Aging. 2014;26(1):3–21. doi: 10.1080/08952841.2014.854571.

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