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 Duggleby¹, Kathya Jovel Ruiz², Jenny Ploeg³, Carrie McAiney⁴, Shelley Peacock⁵, Cheryl Nekolaichuk⁶, Jayna Holroyd-Leduc⁷, Sunita Ghosh⁸, Kevin Brazil⁹, Jennifer Swindle², Dorothy Forbes¹⁰, Sandra Woodhead Lyons¹¹, Jasneet Parmar¹², Sharon Kaasalainen¹³, Laura Cottrell², Jillian Paragg²

Affiliations

¹ 1Nursing Research Chair Aging and Quality of Life, Innovations in Seniors Care Research Unit, Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, 11405 87 Avenue, Edmonton, AB T6G 1C9 Canada.
² 9Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, 11405 87 Avenue, Edmonton, AB T6G 1C9 Canada.
³ 2Aging, Community and Health Research Unit, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1 Canada.
⁴ 3School of Public Health and Health Systems, Schlegel Research Chair in Dementia, Schlegel-UW Research Institute for Aging, University of Waterloo, 200 University Avenue West, Waterloo, ON N2l 3G1 Canada.
⁵ 4College of Nursing, University of Saskatchewan, 4340 E-wing Health Sciences104 Clinic Place, Saskatoon, SK S7N 2Z4 Canada.
⁶ 5Division of Palliative Care Medicine, University of Alberta, c/o Palliative Institute, 404, Health Services Centre, 1090 Youville Drive West, Edmonton, AB T6L 0A3 Canada.
⁷ 6Section of Geriatric Medicine, Cumming School of Medicine, Brenda Strafford Foundation Chair of Geriatric Medicine, University of Calgary, 1403 29th Street NW, Calgary, AB T2N 2T9 Canada.
⁸ 7Department of Medical Oncology/Department of Mathematical and Statistical Sciences, University of Alberta, 11560 University Avenue, Edmonton, AB T6G 1Z2 Canada.
⁹ 8School of Nursing and Midwifery, Queen's University Belfast, 97 Lisburn Road, Belfast, BT9 7BL UK.
¹⁰ 10Arthur Labatt Family School of Nursing, Western University, London, ON N6A 5B9 Canada.
¹¹ 11Institute for Continuing Care Education and Research (ICCER), 4-023 Edmonton Clinic Health Academy, University of Alberta, 11405 - 87 Avenue NW, Edmonton, AB T6G 1C9 Canada.
¹² 12Department of Family Medicine University of Alberta, CH Network of Excellence in Seniors' Health and Wellness, Home Living and Transitions, AHS EZ Continuing Care, c/o Grey Nuns Community Hospital, 416 St. Marguerite Health Services Centre, 1090 Youville Drive West, Edmonton, AB T6L 0A3 Canada.
¹³ 13School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1 Canada.

PMID: 30410783
PMCID: PMC6208108
DOI: 10.1186/s40814-018-0356-7

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 et al. Pilot Feasibility Stud. 2018.

. 2018 Oct 31:4:165.

doi: 10.1186/s40814-018-0356-7. eCollection 2018.

Authors

Affiliations

¹ 1Nursing Research Chair Aging and Quality of Life, Innovations in Seniors Care Research Unit, Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, 11405 87 Avenue, Edmonton, AB T6G 1C9 Canada.
² 9Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, 11405 87 Avenue, Edmonton, AB T6G 1C9 Canada.
³ 2Aging, Community and Health Research Unit, School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1 Canada.
⁴ 3School of Public Health and Health Systems, Schlegel Research Chair in Dementia, Schlegel-UW Research Institute for Aging, University of Waterloo, 200 University Avenue West, Waterloo, ON N2l 3G1 Canada.
⁵ 4College of Nursing, University of Saskatchewan, 4340 E-wing Health Sciences104 Clinic Place, Saskatoon, SK S7N 2Z4 Canada.
⁶ 5Division of Palliative Care Medicine, University of Alberta, c/o Palliative Institute, 404, Health Services Centre, 1090 Youville Drive West, Edmonton, AB T6L 0A3 Canada.
⁷ 6Section of Geriatric Medicine, Cumming School of Medicine, Brenda Strafford Foundation Chair of Geriatric Medicine, University of Calgary, 1403 29th Street NW, Calgary, AB T2N 2T9 Canada.
⁸ 7Department of Medical Oncology/Department of Mathematical and Statistical Sciences, University of Alberta, 11560 University Avenue, Edmonton, AB T6G 1Z2 Canada.
⁹ 8School of Nursing and Midwifery, Queen's University Belfast, 97 Lisburn Road, Belfast, BT9 7BL UK.
¹⁰ 10Arthur Labatt Family School of Nursing, Western University, London, ON N6A 5B9 Canada.
¹¹ 11Institute for Continuing Care Education and Research (ICCER), 4-023 Edmonton Clinic Health Academy, University of Alberta, 11405 - 87 Avenue NW, Edmonton, AB T6G 1C9 Canada.
¹² 12Department of Family Medicine University of Alberta, CH Network of Excellence in Seniors' Health and Wellness, Home Living and Transitions, AHS EZ Continuing Care, c/o Grey Nuns Community Hospital, 416 St. Marguerite Health Services Centre, 1090 Youville Drive West, Edmonton, AB T6L 0A3 Canada.
¹³ 13School of Nursing, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4K1 Canada.

PMID: 30410783
PMCID: PMC6208108
DOI: 10.1186/s40814-018-0356-7

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.

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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**
Flow of participants through the study

See this image and copyright information in PMC

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.
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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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Associated data

LinkOut - more resources

Full Text Sources

Medical