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Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

ABSTRACT: BACKGROUND:Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. OBJECTIVE:The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. METHODS:We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. RESULTS:The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master's prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. CONCLUSIONS:Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. TRIAL REGISTRATION:ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv).

SUBMITTER: Katapodi MC

PROVIDER: S-EPMC5924376 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

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Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

Katapodi Maria C MC Jung Miyeon M Schafenacker Ann M AM Milliron Kara J KJ Mendelsohn-Victor Kari E KE Merajver Sofia D SD Northouse Laurel L LL

JMIR cancer 20180413 1

<h4>Background</h4>Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer.<h4>Objective</h4>The ai ...[more]

PMID: 29653920

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Project description:BACKGROUND:Mental disorders are notably prevalent in children with chronic illnesses, whereas a lack of access to psychological support might lead to potential mental health problems or disruptions in treatment. Digitally delivered psychological interventions have shown promising results as a supportive treatment measure for improving health outcomes during chronic illness. OBJECTIVE:This study aimed to evaluate the usability, acceptability, and feasibility of providing psychological and treatment support in a clinical setting via a mobile game environment. In addition, the study aimed to evaluate the preliminary effectiveness of the mobile health game. METHODS:Patients aged 7 to 14 years with less than a year from their diagnosis were eligible to participate in the study. In total, 15 patients were invited to participate by their doctor. A total of 9 patients (age range: 7-12 years; mean age 9.1 years) completed the 60-day-long study in which the Triumf mobile health game was delivered as a digital intervention. In an engaging game environment, patients were offered psychological and treatment support, cognitive challenges, and disease-specific information. The fully digital intervention was followed by a qualitative interview conducted by a trained psychologist. The results of the interview were analyzed in conjunction with patient specific in-game qualitative data. Ethical approval was obtained to conduct the study. RESULTS:Patients positively perceived the game, resulting in high usability and acceptability evaluations. Participants unanimously described the game as easy to use and engaging in terms of gamified activities, while also providing beneficial and trustworthy information. Furthermore, the overall positive evaluation was emphasized by an observed tendency to carry on gaming post study culmination (67%, 10/15). Psychological support and mini games were the most often used components of the game, simultaneously the participants also highlighted the education module as one of the most preferred. On average, the patients sought and received psychological support or education on 66.6 occasions during the 60-day intervention. Participants spent the most time collecting items from the city environment (on average 15.6 days, SD 8.1), indicative of exploratory behavior, based on the quantitative in-game collected data. During the intervention period, we observed a statistically significant decrease in general health problems (P=.003) and saw a trend toward a decrease in depression and anxiety symptoms. CONCLUSIONS:This study demonstrated that a game environment could be a promising medium for delivering comprehensive supportive care to pediatric patients with cancer alongside standard treatment, with potential application across a variety of chronic conditions. Importantly, the results indicate that the study protocol was feasible with modifications to randomized controlled trials, and the game could be considered applicable in a clinical context. By giving an empirical evaluation of delivering psychological support via the game environment, our work stands to inform future mobile health interventions.

Project description:Preterm birth affects 8% to 11% of the population and conveys a significant risk of developmental delays. Intervention programs that support child development have been shown to have a positive impact on early motor and cognitive development and on parental well-being. However, these programs are often difficult to implement in a real-life setting due to lack of resources. Hence, our multidisciplinary team developed Mieux Agir au Quotidien (MAQ) to teach developmentally supportive care to parents of preterm infants with the goal of improving child development and parental outcomes. Our intervention included 3 in-person workshops that occurred prior to hospital discharge and a Web-based platform with written and videotaped materials that addressed 5 main themes: (1) infant behavioral cues, (2) flexion positioning; (3) oral feeding support, (4) parent-infant interactions, and (5) anticipation of developmental milestones.This study aimed to test the feasibility and acceptability of the intervention by parents of preterm infants and assess clinical benefits on child neurodevelopment and parental outcomes during the first year of life.A total of 107 infants born at <30 weeks and admitted to Sainte-Justine Hospital neonatal intensive care unit and their parents were enrolled in a nonrandomized controlled before-and-after interventional study (intervention n=55, comparison n=52). Acceptability of the program was assessed with a user satisfaction questionnaire. When the infants were at 4 months' corrected age, all parents completed questionnaires on infant temperament, parenting stress, sense of competence, and parenting satisfaction. At 12 months' corrected age, neurodevelopmental testing was performed on infants using the Alberta Infant Motor Scale and the Bayley Scales of Infant and Toddler Development, Third Edition. Comparisons between the 2 groups were done using independent t tests, Wilcoxon rank-sum tests, and Fisher exact tests.The majority of parents (43/45) were satisfied with the intervention program and all would recommend MAQ to others. MAQ met their need for evidence-based information that proved useful to support their child development. No difference in parental or child neurodevelopmental outcomes was detected in this pilot study for most outcomes except for higher median scores for parental coercive behaviors in the intervention group, although proportions scoring in the coercive range did not differ.Acceptability of the program was high among parents thus supporting the relevance of such intervention. A larger study using a randomized controlled trial design is needed to better document impact on parent and children and investigate how Web-based technologies can efficiently complement individualized intervention to alleviate the burden on health care resources.

Project description:BACKGROUND:The 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. OBJECTIVE:This 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. METHODS:A 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. RESULTS:Of 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. CONCLUSIONS:A 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.

Project description:BackgroundVariation in family therapeutic intervention fidelity has an impact on outcomes. The use of video conferencing technology can strengthen therapist fidelity to family therapeutic interventions.ObjectiveThis article explores indicators of feasibility and acceptability for a video-delivered family therapeutic intervention for perinatal women with depressive symptoms and family conflict. The objectives of this article are to describe indicators of feasibility, including therapist fidelity to the intervention and technological factors that relate to implementation of the intervention, as well as indicators of acceptability for participants of the intervention.MethodsThe data included in this article are from an ongoing randomized trial of the Resilience Enhancement Skills Training (REST) video-delivered family therapeutic intervention. Participant recruitment and data collection are still underway for this clinical trial. Of the 106 participants who are currently enrolled in this study, 54 (51%) have been randomized to receive REST from May 2021 through July 2022. Currently, 2 therapists are delivering the intervention, and the training procedures for therapists are summarized herein. Therapist fidelity to the family therapeutic intervention was assessed in 67 audio recorded sessions. The training procedures were summarized for use of video conferencing technology by therapists and the 54 study participants. Knowledge of the video conferencing technology features was assessed in therapists and study participants by the number of attempts required to use the features. Participant responsiveness to the intervention was assessed by the percentage of attended sessions and percentage of complete homework assignments.ResultsTo date, both therapists have demonstrated high fidelity to the family therapeutic intervention and used all video conferencing technology features on their first attempt. The current participants required 1 to 3 attempts to use 1 or more of the video conferencing technology features. About 59% (n=32) of the current participants immediately accessed the features on the first attempt. Our results show that perinatal women attended all sessions, and their family members attended 80% of the sessions. To date, participants have completed 80% of the homework assignments.ConclusionsThese early findings describe indicators of the feasibility and acceptability of the video-delivered family therapeutic intervention for use with this high priority population. Upon completion of recruitment and data collection, a subsequent article will include a mixed methods process evaluation of the feasibility and acceptability of the video-delivered family therapeutic intervention.Trial registrationClinicalTrials.gov NCT04741776; https://clinicaltrials.gov/ct2/show/NCT04741776.

Dataset Information

Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

Publications

Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

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