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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: 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://clinicaltrials.gov/ct2/show/NCT02428387.

SUBMITTER: Duggleby W

PROVIDER: S-EPMC6913509 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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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.

Duggleby Wendy W Ploeg Jenny J McAiney Carrie C Fisher Kathryn K Jovel Ruiz Kathya K Ghosh Sunita S Peacock Shelley S Markle-Reid Maureen M Williams Allison A Triscott Jean J Swindle Jennifer J

Journal of medical Internet research 20191017 10

<h4>Background</h4>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 in ...[more]

PMID: 31625947

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Project description:BackgroundPeople living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources.ObjectiveThis study aims to evaluate CareVirtue's feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use?MethodsWe conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews.ResultsCare networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating "good" usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting <US $100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=-0.33, 95% CI -0.55 to -0.06).ConclusionsThis study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue's effectiveness in improving caregiver outcomes.

Project description:BACKGROUND:When dependent older persons (carees) experience a fall at home, their carers worry that they will fall again. This ongoing concern affects the carers' wellbeing, perception of burden and can potentially change care arrangements. Previous research has focused on carers of high fall risk older persons with stroke, dementia or Parkinson's disease. However, little is known about the carers' concerns for carees at risk of falling generally; and there is no validated instrument to measure this concern. This study aims to explore carers' fall concern about carees at risk of falling and the development of an instrument to measure this concern. METHODS:This study utilises an exploratory sequential design in the development of an instrument to measure carers' concerns. Phase One will explore carers' fall concern using a descriptive qualitative approach. Phases Two and Three will involve expert review, pilot testing and field testing of the instrument. Twenty participants will be recruited by purposive sampling in phase one, and convenience sampling of 50 and 250 participants respectively, in Phases Two and Three. The participants will be recruited from research volunteer registers and local hospital outpatient clinics. Participants will be 18 years old and older and the main carer of an older person. Participants will be interviewed about their concerns about falls. Inductive content analysis will be used to analyse interviews and develop items for the instrument. The psychometric properties of the raw instrument will be tested using an online survey. This study has received ethics approval from the Hunter New England Human Health Research Ethics Committee. DISCUSSION:This study aims to provide greater depth of understanding about the psychological concerns and emotional burden related to carees' falls for carers. Quantifying carers' concerns will provide a context for interventions to assist and support carers and in the greater vigilance of monitoring the falling incidence of carees.

Project description: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).

Project description:BackgroundInformal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed.ObjectiveThis study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts.MethodsA stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist.ResultsBetween August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study.ConclusionsThe Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf.International registered report identifier (irrid)RR1-10.2196/33023.

Project description:ImportanceAlzheimer disease and related dementias (ADRD), currently incurable neurodegenerative diseases, can threaten patients' financial status owing to memory deficits and changes in risk perception. Deteriorating financial capabilities are among the earliest signs of cognitive decline, but the frequency and extent of adverse financial events before and after diagnosis have not been characterized.ObjectivesTo describe the financial presentation of ADRD using administrative credit data.Design, setting, and participantsThis retrospective secondary data analysis of consumer credit report outcomes from 1999 to 2018 linked to Medicare claims data included 81 364 Medicare beneficiaries living in single-person households.ExposuresOccurrence of adverse financial events in those with vs without ADRD diagnosis and time of adverse financial event from ADRD diagnosis.Main outcomes and measuresMissed payments on credit accounts (30 or more days late) and subprime credit scores.ResultsOverall, 54 062 (17 890 [33.1%] men; mean [SD] age, 74 [7.3] years) were never diagnosed with ADRD during the sample period and 27 302 had ADRD for at least 1 quarter of observation (8573 [31.4%] men; mean [SD] age, 79.4 [7.5] years). Single Medicare beneficiaries diagnosed with ADRD were more likely to miss payments on credit accounts as early as 6 years prior to diagnosis compared with demographically similar beneficiaries without ADRD (7.7% vs 7.3%; absolute difference, 0.4 percentage points [pp]; 95% CI, 0.07-0.70:) and to develop subprime credit scores 2.5 years prior to diagnosis (8.5% vs 8.1%; absolute difference, 0.38 pp; 95% CI, 0.04-0.72). By the quarter after diagnosis, patients with ADRD remained more likely to miss payments than similar beneficiaries who did not develop ADRD (7.9% vs 6.9%; absolute difference, 1.0 pp; 95% CI, 0.67-1.40) and more likely to have subprime credit scores than those without ADRD (8.2% vs 7.5%; absolute difference, 0.70 pp; 95% CI, 0.34-1.1). Adverse financial events were more common among patients with ADRD in lower-education census tracts. The patterns of adverse events associated with ADRD were unique compared with other medical conditions (eg, glaucoma, hip fracture).Conclusions and relevanceAlzheimer disease and related dementias were associated with adverse financial events years prior to clinical diagnosis that become more prevalent after diagnosis and were most common in lower-education census tracts.

Project description:INTRODUCTION:Limited research exists about the possible cardiovascular effects of electronic nicotine delivery systems (ENDS). We therefore sought to compare exposure to known or potentially cardiotoxic volatile organic compounds (VOCs) in ENDS users, smokers, and dual users. METHODS:A total of 371 individuals from the Cardiovascular Injury due to Tobacco Use study, a cross-sectional study of healthy participants aged 21-45 years, were categorized as nonusers of tobacco (n = 87), sole ENDS users (n = 17), cigarette smokers (n = 237), and dual users (n = 30) based on 30-day self-reported tobacco product use patterns. Participants provided urine samples for VOC and nicotine metabolite measurement. We assessed associations between tobacco product use and VOC metabolite measures using multivariable-adjusted linear regression models. RESULTS:Mean (SD) age of the population was 32 (±6.8) years, 55% men. Mean urinary cotinine level in nonusers of tobacco was 2.6 ng/mg creatinine, whereas cotinine levels were similar across all tobacco product use categories (851.6-910.9 ng/mg creatinine). In multivariable-adjusted models, sole ENDS users had higher levels of metabolites of acrolein, acrylamide, acrylonitrile, and xylene compared with nonusers of tobacco, but lower levels of most VOC metabolites compared with cigarette smokers or dual users. In direct comparison of cigarettes smokers and dual users, we found lower levels of metabolites of styrene and xylene in dual users. CONCLUSION:Although sole ENDS use may be associated with lower VOC exposure compared to cigarette smoking, further study is required to determine the potential health effects of the higher levels of certain reactive aldehydes, including acrolein, in ENDS users compared with nonusers of tobacco. IMPLICATIONS:ENDS use in conjunction with other tobacco products may not significantly reduce exposure to VOC, but sole use does generally reduce some VOC exposure and warrants more in-depth studies.

Project description:ObjectivesParent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the 'Healthy Parent Carers' (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement.Intervention, setting and participantsHPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male).DesignA preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial.ResultsHPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants' expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery.ConclusionHPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme.Trial registration numberISRCTN151144652.

Project description:BackgroundWearable devices permit the continuous, unobtrusive collection of data from children in their natural environments and can transform our understanding of child development. Although the use of wearable devices has begun to emerge in research involving children, few studies have considered families' experiences and perspectives of participating in research of this kind.ObjectiveThrough a mixed methods approach, we assessed parents' and children's experiences of using a new wearable device in the home environment. The wearable device was designed specifically for use with infants and young children, and it integrates audio, electrocardiogram, and motion sensors.MethodsIn study 1, semistructured phone interviews were conducted with 42 parents of children aged 1 month to 9.5 years who completed 2 day-long recordings using the device, which the children wore on a specially designed shirt. In study 2, a total of 110 parents of children aged 2 months to 5.5 years responded to a questionnaire assessing their experience of completing 3 day-long device recordings in the home. Guided by the Digital Health Checklist, we assessed parental responses from both studies in relation to the following three key domains: (1) access and usability, (2) privacy, and (3) risks and benefits.ResultsIn study 1, most parents viewed the device as easy to use and safe and remote visits as convenient. Parents' views on privacy related to the audio recordings were more varied. The use of machine learning algorithms (vs human annotators) in the analysis of the audio data, the ability to stop recordings at any time, and the view that the recordings reflected ordinary family life were some reasons cited by parents who expressed minimal, if any, privacy concerns. Varied risks and benefits were also reported, including perceived child comfort or discomfort, the need to adjust routines to accommodate the study, the understanding gained from the study procedures, and the parent's and child's enjoyment of study participation. In study 2, parents' ratings on 5 close-ended items yielded a similar pattern of findings. Compared with a "neutral" rating, parents were significantly more likely to agree that (1) device instructions were helpful and clear (t109=-45.98; P<.001), (2) they felt comfortable putting the device on their child (t109=-22.22; P<.001), and (3) they felt their child was safe while wearing the device (t109=-34.48; P<.001). They were also less likely to worry about the audio recordings gathered by the device (t108=6.14; P<.001), whereas parents' rating of the burden of the study procedures did not differ significantly from a "neutral" rating (t109=-0.16; P=.87).ConclusionsOn the basis of parents' feedback, several concrete changes can be implemented to improve this new wearable platform and, ultimately, parents' and children's experiences of using child wearable devices in the home setting.

Project description:BackgroundVoice assistants allow users to control appliances and functions of a smart home by simply uttering a few words. Such systems hold the potential to significantly help users with motor and cognitive disabilities who currently depend on their caregiver even for basic needs (eg, opening a door). The research on voice assistants is mainly dedicated to able-bodied users, and studies evaluating the accessibility of such systems are still sparse and fail to account for the participants' actual motor, linguistic, and cognitive abilities.ObjectiveThe aim of this work is to investigate whether cognitive and/or linguistic functions could predict user performance in operating an off-the-shelf voice assistant (Google Home).MethodsA group of users with disabilities (n=16) was invited to a living laboratory and asked to interact with the system. Besides collecting data on their performance and experience with the system, their cognitive and linguistic skills were assessed using standardized inventories. The identification of predictors (cognitive and/or linguistic) capable of accounting for an efficient interaction with the voice assistant was investigated by performing multiple linear regression models. The best model was identified by adopting a selection strategy based on the Akaike information criterion (AIC).ResultsFor users with disabilities, the effectiveness of interacting with a voice assistant is predicted by the Mini-Mental State Examination (MMSE) and the Robertson Dysarthria Profile (specifically, the ability to repeat sentences), as the best model shows (AIC=130.11).ConclusionsUsers with motor, linguistic, and cognitive impairments can effectively interact with voice assistants, given specific levels of residual cognitive and linguistic skills. More specifically, our paper advances practical indicators to predict the level of accessibility of speech-based interactive systems. Finally, accessibility design guidelines are introduced based on the performance results observed in users with disabilities.

Dataset Information

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.

Publications

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.

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