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

Abstract

BackgroundA 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.ObjectiveThis 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.MethodsData 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.ResultsOf 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).ConclusionsWeb-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 acce...

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

“…In the reviewed literature, informal caregivers find ICT-based supporting solutions to be time-consuming [ 33 , 39 , 43 , 44 ]. This time consumption may overload the caregiving daily routines instead of supporting them and thus increases the burden [ 36 ]. Furthermore, informal caregivers are a group of people for whom time is typically strained, hence they prefer simple and easy-to-operate technologies [ 39 ].…”

“…The literature identifies digital illiteracy as a major challenge for informal caregivers as it increases the need for additional time and effort to adopt a new technology [ 26 - 29 , 36 , 44 , 52 , 58 ]. Lack of digital skills is found to be a main barrier for informal caregivers in using ICT solutions in many studies analyzed in this review [ 26 , 28 , 29 , 31 , 37 , 48 ].…”

“…The literature identifies a series of socioeconomic issues that might have a negative influence on the deployment of ICT-based support solutions delivered over the internet for informal caregivers of older people. Questions such as who should fund ICT solutions for informal caregivers and whether a successful business model can be demonstrated for these solutions are common in the literature [ 26 , 36 , 38 , 42 , 44 , 49 , 52 , 58 ]. In the following, some of the challenges related to this category of issues are highlighted.…”

“…The lack of adequate ICT infrastructure in some countries acts as a barrier to the deployment of ICT for informal caregivers. Poor connectivity to the internet, particularly for informal caregivers in rural areas, is a barrier to the use of any ICT solutions delivered over the internet [ 36 , 58 ]. Poor ICT infrastructure and underperforming internet connection is also a concern for research with ICT solutions and possibly an exclusion criterion for participants in efficacy and effectiveness trials [ 36 ].…”

“…For some informal caregivers, it is considered important to have personal contact with the health care personnel to obtain individualized information [ 26 , 58 ]. The literature notes that informal caregivers view ICT solutions as beneficial in terms of helping with care, but less preferable to care provided by a real person [ 28 , 36 , 38 , 40 ]. Many studies reported the lack of desire of the informal caregiver to engage with ICT solutions because of the impersonal nature and their preference to access support using methods such as face-to-face settings [ 40 , 47 , 53 ].…”