A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis

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

Abstract

Background: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period.

Objective: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse.

Methods: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage.

Results: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction).

Conclusions: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access.

Trial registration: ClinicalTrials.gov NCT02428387; https://ichgcp.net/clinical-trials-registry/NCT02428387.

Keywords: Web-based intervention; carers; dementia; multiple chronic conditions; program evaluation.

Conflict of interest statement

Conflicts of Interest: None declared.

©Wendy Duggleby, Jenny Ploeg, Carrie McAiney, Kathryn Fisher, Kathya Jovel Ruiz, Sunita Ghosh, Shelley Peacock, Maureen Markle-Reid, Allison Williams, Jean Triscott, Jennifer Swindle. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 17.10.2019.

Figures

Figure 1
Figure 1
Data collection procedures and numbers of participants. ADRD: Alzheimer disease and related dementias; GSES: general self-efficacy scale; HHI: herth hope index; MT4C: My Tools 4 Care; SF-12v2: short-form 12-item health survey.

References

    1. World Health Organization. 2012. [2019-03-13]. Dementia: A Public Health Priority .
    1. Ploeg J, Northwood M, Duggleby W, McAiney CA, Chambers T, Peacock S, Fisher K, Ghosh S, Markle-Reid M, Swindle J, Williams A, Triscott JA. Caregivers of older adults with dementia and multiple chronic conditions: exploring their experiences with significant changes. Dementia (London) 2019 Mar 6;:1471301219834423. doi: 10.1177/1471301219834423. (epub ahead of print)(forthcoming)(forthcoming)
    1. Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015 Apr;55(2):309–19. doi: 10.1093/geront/gnu177.
    1. Fonareva I, Oken BS. Physiological and functional consequences of caregiving for relatives with dementia. Int Psychogeriatr. 2014 May;26(5):725–47. doi: 10.1017/S1041610214000039.
    1. Bangerter LR, Griffin J, Harden K, Rutten LJ. Health information–seeking behaviors of family caregivers: analysis of the health information national trends survey. JMIR Aging. 2019 Jan 14;2(1):e11237. doi: 10.2196/11237.
    1. Guay C, Auger C, Demers L, Mortenson WB, Miller WC, Gélinas-Bronsard D, Ahmed S. Components and outcomes of internet-based interventions for caregivers of older adults: systematic review. J Med Internet Res. 2017 Sep 19;19(9):e313. doi: 10.2196/jmir.7896.
    1. Sherifali D, Ali MU, Ploeg J, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C. Impact of internet-based interventions on caregiver mental health: systematic review and meta-analysis. J Med Internet Res. 2018 Jul 3;20(7):e10668. doi: 10.2196/10668.
    1. Ploeg J, Ali MU, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C, Sherifali D. Caregiver-focused, web-based interventions: systematic review and meta-analysis (part 2) J Med Internet Res. 2018 Oct 26;20(10):e11247. doi: 10.2196/11247.
    1. Chiu T, Marziali E, Colantonio A, Carswell A, Gruneir M, Tang M, Eysenbach G. Internet-based caregiver support for Chinese Canadians taking care of a family member with Alzheimer disease and related dementia. Can J Aging. 2009 Dec;28(4):323–36. doi: 10.1017/S0714980809990158.
    1. Lewis ML, Hobday JV, Hepburn KW. Internet-based program for dementia caregivers. Am J Alzheimers Dis Other Demen. 2010 Dec;25(8):674–9. doi: 10.1177/1533317510385812.
    1. Ducharme F, Dubé V, Lévesque L, Saulnier D, Giroux F. An online stress management training program as a supportive nursing intervention for family caregivers of an elderly person. Can J Nurs Inform. 2011;6(2):1–9.
    1. Marziali E, Garcia LJ. Dementia caregivers' responses to 2 internet-based intervention programs. Am J Alzheimers Dis Other Demen. 2011 Mar;26(1):36–43. doi: 10.1177/1533317510387586.
    1. Duggleby W, Swindle J, Peacock S. Self-administered intervention for caregivers of persons with Alzheimer's disease. Clin Nurs Res. 2014 Mar;23(1):20–35. doi: 10.1177/1054773812474299.
    1. MyTools4Care. [2019-07-01].
    1. Duggleby W, Ploeg J, McAiney C, Peacock S, Fisher K, Ghosh S, Markle-Reid M, Swindle J, Williams A, Triscott JA, Forbes D, Jovel Ruiz K. Web-based intervention for family carers of persons with dementia and multiple chronic conditions (My Tools 4 Care): pragmatic randomized controlled trial. J Med Internet Res. 2018 Jun 29;20(6):e10484. doi: 10.2196/10484.
    1. Eysenbach G. The law of attrition. J Med Internet Res. 2005 Mar 31;7(1):e11. doi: 10.2196/jmir.7.1.e11.
    1. Eysenbach G, Consort-eHealth Group Consort-eHealth: improving and standardizing evaluation reports of Web-based and mobile health interventions. J Med Internet Res. 2011 Dec 31;13(4):e126. doi: 10.2196/jmir.1923.
    1. Duggleby W, Ploeg J, McAiney C, Fisher K, Swindle J, Chambers T, Ghosh S, Peacock S, Markle-Reid M, Triscott J, Williams A, Forbes D, Pollard L. Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers. BMC Geriatr. 2017 Aug 14;17(1):181. doi: 10.1186/s12877-017-0581-6.
    1. Ploeg J, McAiney C, Duggleby W, Chambers T, Lam A, Peacock S, Fisher K, Forbes DA, Ghosh S, Markle-Reid M, Triscott J, Williams A. A web-based intervention to help caregivers of older adults with dementia and multiple chronic conditions: qualitative study. JMIR Aging. 2018 Apr 23;1(1):e2. doi: 10.2196/aging.8475.
    1. Alzheimer Society of Canada. 2013. [2019-03-13]. Progression of Alzheimer's Disease: Overview .
    1. Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs. 1992 Oct;17(10):1251–9. doi: 10.1111/j.1365-2648.1992.tb01843.x.
    1. Schwarzer R. Self-Efficacy - Userpage. 2012. [2019-03-13]. General Self-Efficacy Scale (GSE) .
    1. Markowitz JS, Gutterman EM, Sadik K, Papadopoulos G. Health-related quality of life for caregivers of patients with Alzheimer disease. Alzheimer Dis Assoc Disord. 2003;17(4):209–14. doi: 10.1097/00002093-200310000-00003.
    1. Arango-Lasprilla JC, Lehan T, Drew A, Moreno A, Deng X, Lemos M. Health-related quality of life in caregivers of individuals with dementia from Colombia. Am J Alzheimers Dis Other Demen. 2010 Nov;25(7):556–61. doi: 10.1177/1533317510382287.
    1. Ware JE. User's Manual for the SF-12v2 Health Survey (with a Supplement Documenting SF-12 Health Survey) Lincoln, Rhode Island, United States: Quality Metric Incorporated; 2002.
    1. Thabane L, Mbuagbaw L, Zhang S, Samaan Z, Marcucci M, Ye C, Thabane M, Giangregorio L, Dennis B, Kosa D, Debono VB, Dillenburg R, Fruci V, Bawor M, Lee J, Wells G, Goldsmith CH. A tutorial on sensitivity analyses in clinical trials: the what, why, when and how. BMC Med Res Methodol. 2013 Jul 16;13:92. doi: 10.1186/1471-2288-13-92.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004 Mar;24(2):105–12. doi: 10.1016/j.nedt.2003.10.001.
    1. Duggleby W, Williams A, Ghosh S, Moquin H, Ploeg J, Markle-Reid M, Peacock S. Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions. Health Qual Life Outcomes. 2016 May 27;14:81. doi: 10.1186/s12955-016-0486-7.
    1. Zhang S, Edwards H, Yates P, Guo Q, Li C. Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai. PLoS One. 2013;8(12):e83326. doi: 10.1371/journal.pone.0083326.
    1. Crellin NE, Orrell M, McDermott O, Charlesworth G. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging Ment Health. 2014;18(8):954–69. doi: 10.1080/13607863.2014.915921.
    1. Gallagher D, Mhaolain AN, Crosby L, Ryan D, Lacey L, Coen RF, Walsh C, Coakley D, Walsh JB, Cunningham C, Lawlor BA. Self-efficacy for managing dementia may protect against burden and depression in Alzheimer's caregivers. Aging Ment Health. 2011 Aug;15(6):663–70. doi: 10.1080/13607863.2011.562179.
    1. Rabinowitz YG, Saenz EC, Thompson LW, Gallagher-Thompson D. Understanding caregiver health behaviors: depressive symptoms mediate caregiver self-efficacy and health behavior patterns. Am J Alzheimers Dis Other Demen. 2011 Jun;26(4):310–6. doi: 10.1177/1533317511410557.
    1. Deeken F, Rezo A, Hinz M, Discher R, Rapp MA. Evaluation of technology-based interventions for informal caregivers of patients with dementia - a meta-analysis of randomized controlled trials. Am J Geriatr Psychiatry. 2019 Apr;27(4):426–45. doi: 10.1016/j.jagp.2018.12.003.
    1. Greenberg AJ, Haney D, Blake DK, Moser RP, Hesse BW. Differences in access to and use of electronic personal health information between rural and urban residents in the United States. J Rural Health. 2018 Mar;34(Suppl 1):s30–8. doi: 10.1111/jrh.12228.
    1. Federation of Canadian Municipalities. 2014. [2019-03-13]. Broadband Access in Rural Canada: The Role of Connectivity in Building Vibrant Communities .
    1. Park E, Kim H, Steinhoff A. Health-related internet use by informal caregivers of children and adolescents: an integrative literature review. J Med Internet Res. 2016 Mar 3;18(3):e57. doi: 10.2196/jmir.4124.
    1. Vaughan C, Trail TE, Mahmud A, Dellva S, Tanielian T, Friedman E. Informal caregivers' experiences and perceptions of a web-based peer support network: mixed methods study. J Med Internet Res. 2018 Aug 28;20(8):e257. doi: 10.2196/jmir.9895.
    1. Son J, Erno A, Shea DG, Femia EE, Zarit SH, Stephens MA. The caregiver stress process and health outcomes. J Aging Health. 2007 Dec;19(6):871–87. doi: 10.1177/0898264307308568.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe