Web-based Support Program Research Articles

A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial

BackgroundApproximately 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put caregivers of the affected children at high risk for psychological distress. At the same time, their caregivers have limited access to appropriate psychological care. The aim of this study was to evaluate a web-based psychological support program for caregivers of children with chronic rare diseases (WEP-CARE).MethodsGerman-speaking parents (recruited between May 2016 and March 2018) caring for children aged 0–25 years with a rare disease showing clinically relevant anxiety symptoms, were assigned to either the WEP-CARE (n = 38) or treatment as usual (n = 36) condition within a randomized controlled trial. The primary outcome measure was parental anxiety, assessed with the Generalized Anxiety Disorder Questionnaire (GAD-7). Secondary outcomes were fear of disease progression, depression, coping, quality of life and user satisfaction. The group differences were tested through repeated-measures analyses of variance. The WEP-CARE group was additionally followed up three months after the treatment.ResultsA significant time-group interaction was found for anxiety (F (1,35) = 6.13, p = .016), fear of disease progression (F (1,331) = 18.23, p < .001), depression (F (1,74) = 10.79, p = .002) and coping (F (1,233) = 7.02, p = .010), suggesting superiority of the WEP-CARE group. Sustainability of the treatment gains regarding anxiety, fear of disease progression and coping was confirmed at the 6-month follow-up assessment (p < .01). A significant interaction effect could not be found for quality of life (F(1,2) = 0.016; p = .899). Both participating parents and therapists were satisfied with WEP-CARE.ConclusionsOur results underline the efficacy and feasibility of WEP-CARE for parents of children with various rare diseases.

Implementation of a web-based partnership support program for improving the quality of life of male patients undergoing infertility treatment: a pilot feasibility study

ObjectivesIn this study, we aimed to implement and evaluate a Web-based partnership support program to enhance the QoL of male patients undergoing infertility treatment. We conducted a pilot study involving 41 infertile couples from September to October of 2021. We used a quasi-experimental design (pre-test and post-test with comparison) involving purposive sampling. A subgroup analysis was conducted to determine which demographics of the participants would benefit from the program.ResultsThirty-four participants (mean age 37.3 years; duration of infertility treatment 14.5 months) were included in the final analysis (follow-up rate 82.9%). Although there was no significant increase in the participants’ QoL under the Web-based partnership support program, the assisted reproductive technology group (P = 0.03), the no medical history group (P = 0.032), and the with experience of changing hospital group (P = 0.027) showed a significant increase in the relational subscale scores of the QoL before and after the program. The majority of the participants (n = 29; 85.3%) expressed satisfaction with the support program. Participation in the Web-based partnership support program may improve the QoL of some men undergoing infertility treatment.Trial registration Retrospectively registered at the University Hospital Medical Information Network on 26 January 2023 (ID: UMIN0000 000050153).

Effectiveness of a web-based partnership support program for preventing decline in the quality of life of male patients undergoing infertility treatment: A quasi-experimental study.

During infertility treatment, distress increases and the quality of life declines in both men and women over time. Thus, both men and women need equal support and care. In this study, we aimed to explore the effectiveness of a web-based partnership support program in preventing quality of life deterioration and reducing emotional distress in men undergoing infertility treatment. We conducted a non-randomized controlled trial involving 151 infertile couples in Japan from January to April of 2022. The program consisted of couple discussion, information provision for couple cooperation, and communication techniques. We used a quasi-experimental design (non-equivalence two groups pre-test and post-test with comparison) involving purposive sampling. Data were collected using the FertiQoL tool and Distress scales. Analyses were conducted by a two-way factorial analysis of variance using SPSS software. Data for the analysis were included for the intervention group (n = 58) and the control group (n = 62) (valid response rate 79.5%). There were no significant interaction effects between program and time in the FertiQoL and Distress scales. However, there were significant interaction effects between program and time in the Relational (p < .001) and Social (p = .044) subscales. Subgroup analysis showed that in the non-assisted reproductive technologies group, deterioration in the quality of life was more effectively prevented in the intervention group than in the control group. The web-based partnership support program appeared to be effective in preventing the deterioration of the quality of life of only men undergoing non-assisted reproductive technology treatment.

The Influencing Contexts and Potential Mechanisms Behind the Use of Web-Based Self-management Support Interventions: Realistic Evaluation.

BackgroundSelf-management can increase self-efficacy and quality of life and improve disease outcomes. Effective self-management may also help reduce the pressure on health care systems. However, patients need support in dealing with their disease and in developing skills to manage the consequences and changes associated with their condition. Web-based self-management support programs have helped patients with cardiovascular disease (CVD) and rheumatoid arthritis (RA), but program use has been low.ObjectiveThis study aimed to identify the patient, disease, and program characteristics that determine whether patients use web-based self-management support programs or not.MethodsA realistic evaluation methodology was used to provide a comprehensive overview of context (patient and disease characteristics), mechanism (program characteristics), and outcome (program use). Secondary data of adult patients with CVD (n=101) and those with RA (n=77) were included in the study. The relationship between context (sex, age, education, employment status, living situation, self-management [measured using Patient Activation Measure-13], quality of life [measured using RAND 36-item health survey], interaction efficacy [measured using the 5-item perceived efficacy in patient-physician interactions], diagnosis, physical comorbidity, and time since diagnosis) and outcome (program use) was analyzed using logistic regression analyses. The relationship between mechanism (program design, implementation strategies, and behavior change techniques [BCTs]) and outcome was analyzed through a qualitative interview study.ResultsThis study included 68 nonusers and 111 users of web-based self-management support programs, of which 56.4% (101/179) were diagnosed with CVD and 43.6% (78/179) with RA. Younger age and a lower level of education were associated with program use. An interaction effect was found between program use and diagnosis and 4 quality of life subscales (social functioning, physical role limitations, vitality, and bodily pain). Patients with CVD with higher self-management and quality of life scores were less likely to use the program, whereas patients with RA with higher self-management and quality of life scores were more likely to use the program. Interviews with 10 nonusers, 10 low users, and 18 high users were analyzed to provide insight into the relationship between mechanisms and outcome. Program use was encouraged by an easy-to-use, clear, and transparent design and by recommendations from professionals and email reminders. A total of 5 BCTs were identified as potential mechanisms to promote program use: tailored information, self-reporting behavior, delayed feedback, providing information on peer behavior, and modeling.ConclusionsThis realistic evaluation showed that certain patient, disease, and program characteristics (age, education, diagnosis, program design, type of reminder, and BCTs) are associated with the use of web-based self-management support programs. These results represent the first step in improving the tailoring of web-based self-management support programs. Future research on the interaction between patient and program characteristics should be conducted to improve the tailoring of participants to program components.

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia

Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior. MethodsA cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data. ResultsA total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min). ConclusionsThe Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals.

The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study.

Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers' support needs. A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.

Process Evaluation of an Online SUpport PRogram for Older Hearing Aid Users Delivered in a Cluster Randomized Controlled Trial.

Objectives: To evaluate the process of implementing a web-based support program (SUPR) for hearing aid users in the Dutch dispensing setting in order to allow interpretation of the randomized controlled trial's results (positive effects on hearing-aid related outcomes; no effects on psychosocial outcomes).Design: Measures: context of implementation, recruitment, SUPR's: reach, implementation fidelity, dose delivered, dose received, satisfaction, and benefit. Data collection: quantitative and qualitative.Study Sample: One hundred thirty-eight clients (mean age 68.1 years; 60% male) and 44 dispensers completed questionnaires. Five clients and 6 dispensers participated in interviews and focus groups.Results: Clients and dispensers were generally satisfied with SUPR's usefulness. SUPR-videos were watched by 7–37% of the clients. Around half of the dispensers encouraged clients to watch them or informed them about SUPR. Some clients found the SUPR-materials suboptimal, and changes in personnel and limited dispenser-training were barriers acting on a contextual level.Conclusions: This study identified several factors that contributed to the success of SUPR. Others factors, acting on various levels (e.g., intervention material, dispensers, and implementation context), were suboptimal and may explain the absent psychosocial effects. The identified factors are important to consider in further development of SUPR, and in other web-based support programs.

Effectiveness of a web-based SUpport PRogramme (SUPR) for communication partners of persons with hearing loss: results of a two-arm, cluster randomised controlled trial and process evaluation

Objectives To examine the effects of web-based SUpport PRogram (SUPR) for communication partners (CPs) of persons with hearing loss (PHLs) in a HA dispensing setting. Design Cluster randomised controlled trial (cRCT) with two arms (SUPR: Booklet, online videos; care as usual: no support) plus process evaluation. Measurements: baseline, and immediately-, six, and 12 months post-intervention. Outcomes: Significant Other Scale for Hearing Disability (SOS-HEAR), International Outcome Inventory for HAs/Alternative Interventions for Significant Others (IOI-HA/AI-SO). Process evaluation: dose-received, satisfaction, and benefit. Study sample The cRCT included 73 (SUPR) and 57 (care as usual) CPs. In the process evaluation study, 41 CPs (SUPR) participated. Results There were no significant effects of SUPR for third-party disability (SOS-HEAR), the proxy report (IOI-HA-SO item “use”), and third-party disability (IOI-HA-SO items “satisfaction”, and “quality of life”). SUPR-videos were watched by 15-22% of the CPs. SUPR materials were rated as moderately beneficial and useful. Conclusions Low baseline disability (floor effect) and low intervention dose-received may explain the findings. Directly targeting CPs rather than via their PHLs and providing intervention materials specifically for CPs may improve their engagement and contribute to SUPR’s value supplementary to standard HA care.

Functionality, Impact, and Satisfaction of a Web-Based and Mobile Application Support Program for Students with Autism Spectrum Disorder

This paper presents the functionality, impact and satisfaction of a self-management web-based or mobile application student support program (i.e., College Connect) for post-secondary students with Autism Spectrum Disorder (PSS-ASD) in the United States. Five professionals and four successful college graduates with ASD evaluated College Connectand completed an intervention satisfaction rating and an ePlatform performance questionnaire. College Connect and ePlatform function was modified based on reviewers’ feedback. Following modification, the program was piloted with three high school seniors and one freshman at a two-year college with ASD. Results pointed toward strengths and limitations of the program protocol and future directions.

Web-Based Peer Support Interventions for Adults Living With Chronic Conditions: Scoping Review.

BackgroundGlobally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common.ObjectiveThe purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions. MethodsThis scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results. ResultsAfter duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ≥70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual’s chronic condition, access to information, and empowerment.ConclusionsThere is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support—emotional, informational, and appraisal support—were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs.

Effectiveness of a Web-Based SUpport PRogram (SUPR) for Hearing Aid Users Aged 50+: Two-Arm, Cluster Randomized Controlled Trial.

BackgroundHearing aid (HA) use is known to improve health outcomes for people with hearing loss. Despite that, HA use is suboptimal, and communication issues and hearing-related activity limitations and participation restrictions often remain. Web-based self-management communication programs may support people with hearing loss to effectively self-manage the impact of hearing loss in their daily lives.ObjectiveThe goal of the research is to examine the short- and long-term effects of a web-based self-management SUpport PRogram (SUPR) on communication strategy use (primary outcome) and a range of secondary outcomes for HA users aged 50 years and older.MethodsClients of 36 HA dispensing practices were randomized to SUPR (SUPR recipients; n=180 HA users) and 34 to care as usual (controls; n=163 HA users). SUPR recipients received a practical support booklet and online materials delivered via email over the course of their 6-month HA rehabilitation trajectory. They were encouraged to appoint a communication partner and were offered optional email contact with the HA dispensing practice. The online materials included 3 instruction videos on HA handling, 5 videos on communication strategies, and 3 testimonial videos. Care as usual included a HA fitting rehabilitation trajectory only. Measurements were carried out at baseline, immediately postintervention, 6 months postintervention, and 12 months postintervention. The primary outcome measure was self-reported use of communication strategies (3 subscales of the Communication Profile for the Hearing Impaired [CPHI]). Secondary outcome measures included self-reported personal adjustment to hearing loss (CPHI); use, satisfaction and benefit of HAs and SUPR (use questionnaire; International Outcome Inventory for Hearing Aids [IOI-HA], Alternative Interventions [IOI-AI]); recommendation of HA dispensing services; self-efficacy for HA handling (Measure of Audiologic Rehabilitation Self-Efficacy for Hearing Aids [MARS-HA]); readiness to act on hearing loss (University of Rhode Island Change Assessment adapted for hearing loss [URICA-HL]); and hearing disability (Amsterdam Inventory for Auditory Disability and Handicap [AIADH]).ResultsLinear mixed model analyses (intention to treat) showed no significant differences between the SUPR and control group in the course of communication strategy use (CPHI). Immediately postintervention, SUPR recipients showed significantly higher self-efficacy for advanced HA handling than the controls, which was sustained at 12 months (MARS-HA; mean difference immediately postintervention: 5.3, 95% CI 0.3 to 10.4; P=.04). Also, SUPR recipients showed significantly greater HA satisfaction than controls immediately postintervention (IOI-HA; 0.3, 95% CI 0.09 to 0.5; P=.006), which was sustained at 12 months, and significantly greater HA use than the controls immediately postintervention (IOI-HA; 0.3, 95% CI 0.02 to 0.5; P=.03), which was not sustained at 12 months.ConclusionsThis study provides ground to recommend adding SUPR to standard HA dispensing care, as long-term, modest improvements in HA outcomes were observed. Further research is needed to evaluate what adjustments to SUPR are needed to establish long-term effectiveness on outcomes in the psychosocial domain.Trial RegistrationISRCTN77340339; http://www.isrctn.com/ISRCTN77340339International Registered Report Identifier (IRRID)RR2-10.1136/bmjopen-2016-015012

Remote Care for Caregivers of People With Psychosis: Mixed Methods Pilot Study.

BackgroundA reduced availability of resources has hampered the implementation of family work in psychosis. Web-based support programs have the potential to increase access to high-quality, standardized resources. This pilot study tested the Norwegian version of the Relatives Education and Coping Toolkit (REACT), a web-based United Kingdom National Health Service program in combination with phone-based support by trained family therapists.ObjectiveWe investigated how the program was perceived by its users and identified the facilitators and barriers to its clinical implementation.MethodsRelatives of people with psychosis were offered access to REACT and to weekly family therapist support (with 1 of 2 trained family therapists) for 26 weeks. Level of distress and level of expressed emotion data were collected at baseline and after 26 weeks using the Family Questionnaire and the Relatives Stress Scale. Both family therapists and a subset of the relatives were interviewed about their experiences after completing the program.ResultsDuring the program, relatives (n=19) had a median of 8 (range 4-11) consultations with the family therapists. Postintervention, there was a significant reduction in stress and in expressed emotions in the relatives of people with psychosis. Interviews with the relatives (n=7) and the family therapists (n=2) indicated the following themes as important—the intervention turned knowledge into action; the intervention strengthened the feeling of being involved and taken seriously by the health services; and management support and the ability for self-referral were important, while lack of reimbursement and clinician resistance to technology were barriers to implementation.ConclusionsThe service was found to offer a valued clinical benefit; however, strategies that aim to engage clinicians and increase organizational support toward new technology need to be developed.

Sustaining the implementation of alcohol management practices by community sports clubs: a randomised control trial

BackgroundRisky alcohol consumption is responsible for a variety of chronic and acute harms. Individuals involved in organised sport have been identified as one population group who consume risky amounts of alcohol both at the elite and the non-elite level. ‘Good Sports’, an alcohol management intervention focused on the community sports setting has been successful in addressing risky alcohol use and alcohol-related harm amongst players and sports fans. Sustaining such implementation effects is a common challenge across a variety of community settings. The primary aim of this trial was to assess the effectiveness of a web-based program in sustaining the implementation of best-practice alcohol management practices by community football clubs, relative to usual program care (i.e. control clubs).MethodsNon-elite, community football clubs in the Australian states of New South Wales and Victoria, that were participating in an alcohol management program (Good Sports) were recruited for the study. Consenting clubs were randomised into intervention (N = 92) or control (N = 96) groups. A web-based sustainability intervention was delivered to intervention clubs over three consecutive Australian winter sports seasons (April–September 2015–2017). The intervention was designed to support continued (sustained) implementation of alcohol management practices at clubs consistent with the program. Control group clubs received usual support from the national Good Sports Program. Primary outcome data was collected through observational audits of club venues and grounds.ResultsA total of 92 intervention clubs (574 members) and 96 control clubs (612 members) were included in the final analysis. At follow-up, sustained implementation of alcohol management practices was high in both groups and there was no significant difference between intervention or control clubs at follow-up for both the proportion of clubs implementing 10 or more practices (OR 0.53, 95%CI 0.04–7.2; p = 0.63) or for the mean number of practices being implemented (mean difference 0.10, 95%CI -0.23-0.42; p = 0.55). There were also no significant differences between groups on measures of alcohol consumption by club members.ConclusionsThe findings suggest that sustained implementation of alcohol management practices was high, and similar, between clubs receiving web-based implementation support or usual program support.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12614000746639. Prospectively registered 14/7/2014.

126 The Canadian Neonatal Brain Platform: A three-pillar approach

Brain injury and abnormal maturation in the neonatal period is associated with long-term changes underlying significant cognitive, motor, language and behavioural deficiencies. Our understanding of clear cerebral disruptors of brain development and the extent of their impact are still limited, mostly due to the lack of robust non-invasive biomarkers, difficulties in conducting studies in newborns and the use of small isolated cohorts. To address all these issues, we have created the Canadian Neonatal Brain Platform (CNBP). The aims of CNBP are threefold: 1) To create and manage a national neonatal MRI registry to support prospective multicenter trials; 2) To make accessible to the community standardized sets of tools and protocols for image acquisition and analysis specifically designed for neonatology; 3) To better identify the concerns of parents of preterm infants by building a robust partnership. Aim 1: We modelled our architecture with a semi-decentralized overall structure composed of a site-specific infrastructure for initial localized data aggregation and anonymization, and a central server for post-processing and ensuring long-term scaleability. Aim 2: We conducted experiments to simulate human rater image quality assessment with machine learning. In addition, we performed brain segmentation using various open source neonatal neuroimaging analysis software to qualitatively validate their results against human rater golden standard. Aim 3: We deployed Mieux Agir au Quotidien (http://developpementenfant.ca), a web-based educational and support program for parents of preterm infants that incorporates state-of-the-art teaching modules on developmentally supportive care. Aim 1: Our infrastructure (see Figure 1) was successfully deployed in Compute Canada. We used DICOMTransit to collect, aggregate, anonymize and centralize data from MRI scanners, Canadian Neonatal Network and Canadian Neonatal Follow-up Network. We implemented LORIS (https://dev.cnbp.ca) to build a clinical neonatal imaging registry. Aim 2: Our pipeline reached a 75% sensitivity and 85% positive predictive value to control for quality. Our assessment of the segmentation tools revealed that MANTIS provides the most robust segmentation results. Aim 3: Mieux Agir au Quotidien reached over 700K visits in 2017. We have established a special partnership with parents of preterm infants, which has enabled us to gather first-rate information on parents’ concern and knowledge about the disorders of preterm infants, now available in english. CNBP has successfully progressed towards achieving its aims by establishing an online data processing and integration portal integrated with numerous neonatal specific analysis software while providing social and knowledge transfer to the general public.

Development of a Web-Based Peer Support Program for Family Caregivers of Ventilator-Assisted Individuals Living in the Community: Protocol for a Pilot Randomized Controlled Trial.

BackgroundAcross Europe, Canada, Australia, and the United States, the prevalence of home mechanical ventilation (HMV) prevalence is 6.6-12.9 per 100,000. At-home ventilator-assisted individuals (VAIs) are often vulnerable and highly comorbid, requiring complex care. In Canada, most VAI care is provided by family, leading to poor health-related quality of life and increased caregiver burden. No supportive interventions or peer support programs are tailored to VAI caregivers. Owing to the financial, geographic, and time limitations, Web-based support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and Web-based peer support program for VAI caregivers including information-sharing, peer-to-peer communication, and peer mentorship.ObjectiveStudy Stage 1 aims to (1) evaluate the face and content validity of the peer mentor training program and (2) investigate participant satisfaction. Study Stage 2 aims to evaluate (1) the feasibility of participant recruitment and Web-based program delivery; (2) acceptability, usability, and satisfactoriness; (3) experiences of caregivers and peer mentors with the Web-based peer support program; and (4) effect of the Web-based peer support program on caregiver health outcomes.MethodsStudy Stage 1: We will train 7 caregivers to act as peer mentors for the Web-based peer support program trial; they will complete questionnaires rating the utility of individual training sessions and the training program overall. Study Stage 2: We will recruit 30 caregiver peers for a pilot randomized controlled trial of the 12-week Web-based peer support program using a waitlist control; the program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will be randomized to the intervention or waitlist control group using a 1:1 ratio using Randomize.net. Both groups will complete pre- and postintervention health outcome questionnaires (ie, caregiving impact, mastery, coping, personal gain, positive affect, and depression). Caregiver peers in the intervention arm will only complete a program evaluation and will be invited to participate in an interview to provide insight into their experience. Peer mentors will be invited to participate in a Web-based focus group to provide insight into their experience as mentors. We will judge the feasibility per the number of recruitment and program delivery goals met, use analysis of covariance to compare health outcomes between intervention and control groups, and analyze qualitative data thematically.ResultsPeer mentor training was completed with 5 caregivers in July 2018. To date, 2 caregivers have beta-tested the website, and the Web-based peer support program trial will commence in September 2018. Results are expected by early 2019.ConclusionsThis study will result in the production and initial evaluation of a rigorously developed, evidence- and stakeholder-informed Web-based peer training and peer support program for caregivers of VAIs residing at home.International Registered Report Identifier (IRRID)PRR1-10.2196/11827

Lifeworld in co-designing with informal carers

Purpose The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted. Design/methodology/approach This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study. Findings Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process. Originality/value Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial.

BackgroundParents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child’s illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation.ObjectiveThe objectives of our study were to (1) identify the outcome measures that are most likely to capture the potential benefit, (2) evaluate the potential effectiveness and effect size, and (3) evaluate recruitment, reach, the dose received, and context.MethodsWe conducted a feasibility study with a two-armed, wait-list randomized controlled trial (RCT). Prior to baseline, parents (n=146) were randomly allocated to group 1 or group 2. After completing the baseline questionnaire, parents in group 1 were given access to e-Powered Parents, while those in group 2 received usual care. At the 6-month follow-up (T1), all parents received a questionnaire and parents in group 2 were given access to e-Powered Parents as well. After 1.5 years, through an extra measurement (T2), we evaluated the effect of long-term exposure. Outcomes were the child’s quality of life (Child Vulnerability Scale), parental stress (Pediatric Inventory for Parents) and fatigue (Multidimensional Fatigue Inventory), self-efficacy in communication with health care professionals (Perceived Efficacy in Patient-Physician Interactions, PEPPI-5), and parental perceptions of family management (Family Management Measure). Floor and ceiling effects and percentage of parents showing no change in scores were calculated. We used linear mixed models to evaluate the potential effectiveness and effect sizes using the intention-to-treat and per-protocol analyses. In the process evaluation, we evaluated recruitment, reach, the dose received, and context using a questionnaire sent to the parents, log-in data, and a focus group interview with health care professionals.ResultsAt T1 (n=86) and T2 (n=51), no significant effects were found on any of the five outcomes. The PEPPI-5 showed ceiling effects and high percentages of parents showing no change between the measurement times. The information and interactive part of the intervention were used by 84% (57/68) of the parents in group 1 and 49% (32/65) of the parents in group 2. The information pages were visited most often. Overall, 64% (85/133) of the parents logged in to the training platform and 31% (26/85) actually used the training modules.ConclusionsWe did not observe any significant effect on any of the outcomes. This could possibly be explained by the minimal use of the intervention and by parents’ heterogeneity. For continued participation, we recommend a tailored intervention and further studies to find out whether and how online programs could be used to support parents in the management of their child’s CKD.Trial RegistrationNetherlands Trial Registry NTR4808; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4808 (Archived by WebCite at http://www.webcitation.org/719rCicvW)

Evaluating the CARE4Carer Blended Care Intervention for Partners of Patients With Acquired Brain Injury: Protocol for a Randomized Controlled Trial

BackgroundSupport programs for partners of patients with acquired brain injury are necessary since these partners experience several unfavorable consequences of caregiving, such as a high burden, emotional distress, and poor quality of life. Evidence-based support strategies that can be included in these support programs are psychoeducation, skill building, problem solving, and improving feelings of mastery. A promising approach would seem to be to combine web-based support with face-to-face consultations, creating a blended care intervention.ObjectiveThis paper outlines the protocol of a randomized controlled trial to evaluate the CARE4Carer blended care intervention for partners of patients with acquired brain injury.MethodsA multicenter two-arm randomized controlled trial will be conducted. A total of 120 partners of patients with acquired brain injury will be recruited from five rehabilitation centers in the Netherlands. The blended care intervention consists of a nine-session web-based support program and two face-to-face consultations with a social worker. Themes that will be addressed are: giving partners insight into their own situation, including possible pitfalls and strengths, learning how to cope with the situation, getting a grip on thoughts and feelings, finding a better balance in the care for the patient with acquired brain injury, thinking about other possible care options, taking care of oneself, and communication. The intervention lasts 20 weeks and the control group will receive usual care. The outcome measures will be assessed at baseline and at 24- and 40-week follow-up. The primary outcome is caregiver mastery. Secondary outcome measures are strain, burden, family functioning, emotional functioning, coping, quality of life, participation, and social network.ResultsThe effect of the intervention on the primary and secondary outcome measures will be determined. Additional a process evaluation will be conducted.ConclusionsThe findings of this study will be used to improve the care for partners of patients with acquired brain injury. Barriers and facilitators that emerge from the process evaluation will be used in the nationwide implementation of the intervention.Trial RegistrationDutch Trial Register NTR6197; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6197 (Archived by WebCite at http://www.webcitation.org/6xHBAxx0y)

Implementation of a web-based national child health-care programme in a local context: A complex facilitator role.

The aim of this study was to investigate child health-care coordinators' experiences of being a facilitator for the implementation of a new national child health-care programme in the form of a web-based national guide. The study was based on eight remote, online focus groups, using Skype for Business. A qualitative content analysis was performed. The analysis generated three categories: adapt to a local context, transition challenges and led by strong incentives. There were eight subcategories. In the latent analysis, the theme 'Being a facilitator: a complex role' was formed to express the child health-care coordinators' experiences. Facilitating a national guideline or decision support in a local context is a complex task that requires an advocating and mediating role. For successful implementation, guidelines and decision support, such as a web-based guide and the new child health-care programme, must match professional consensus and needs and be seen as relevant by all. Participation in the development and a strong bottom-up approach was important, making the web-based guide and the programme relevant to whom it is intended to serve, and for successful implementation. The study contributes valuable knowledge when planning to implement a national web-based decision support and policy programme in a local health-care context.

The Feasibility and Acceptability of a Web-Based Alcohol Management Intervention in Community Sports Clubs: A Cross-Sectional Study.

BackgroundThe implementation of comprehensive alcohol management strategies can reduce excessive alcohol use and reduce the risk of alcohol-related harm at sporting venues. Supporting sports venues to implement alcohol management strategies via the Web may represent an effective and efficient means of reducing harm caused by alcohol in this setting. However, the feasibility and acceptability of such an approach is unknown.ObjectiveThis study aimed to identify (1) the current access to and use of the Web and electronic devices by sports clubs; (2) the perceived usefulness, ease of use, and intention to use a Web-based program to support implementation of alcohol management policies in sports clubs; (3) the factors associated with intention to use such a Web-based support program; and (4) the specific features of such a program that sports clubs would find useful.MethodsA cross-sectional survey was conducted with club administrators of community football clubs in the state of New South Wales, Australia. Perceived usefulness, ease of use and intention to use a hypothetical Web-based alcohol management support program was assessed using the validated Technology Acceptance Model (TAM) instrument. Associations between intention to use a Web-based program and club characteristics as well as perceived ease of use and usefulness was tested using Fisher’s exact test and represented using relative risk (RR) for high intention to use the program.ResultsOf the 73 football clubs that were approached to participate in the study, 63 consented to participate and 46 were eligible and completed the survey. All participants reported having access to the Web and 98% reported current use of electronic devices (eg, computers, iPads/tablets, smartphones, laptops, televisions, and smartboards). Mean scores (out of a possible 7) for the TAM constructs were high for intention to use (mean 6.25, SD 0.87), perceived ease of use (mean 6.00, SD 0.99), and perceived usefulness (mean 6.17, SD 0.85). Intention to use the Web-based alcohol management program was significantly associated with perceived ease of use (P=.02, RR 1.4, CI 1.0-2.9), perceived usefulness (P=.03, RR 1.5, CI 1.0-6.8) and club size (P=.02, RR 0.8, CI 0.5-0.9). The most useful features of such a program included the perceived ability to complete program requirements within users’ own time, complete program accreditation assessment and monitoring online, develop tailored action plans, and receive email reminders and prompts to complete action.ConclusionsA Web-based alcohol management approach to support sports clubs in the implementation of recommended alcohol management policies appears both feasible and acceptable. Future research should aim to determine if such intended use leads to actual use and club implementation of alcohol management policies.