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Development and mixed-methods evaluation of an online animation for young people about genome sequencing.

ABSTRACT: Children and young people with rare and inherited diseases will be significant beneficiaries of genome sequencing. However, most educational resources are developed for adults. To address this gap in informational resources, we have co-designed, developed and evaluated an educational resource about genome sequencing for young people. The first animation explains what a genome is, genomic variation and genome sequencing ("My Genome Sequence": http://bit.ly/mygenomesequence), the second focuses on the limitations and uncertainties of genome sequencing ("My Genome Sequence part 2": http://bit.ly/mygenomesequence2). In total, 554 school pupils (11-15 years) took part in the quantitative evaluation. Mean objective knowledge increased from before to after watching one or both animations (4.24 vs 7.60 respectively; t = 32.16, p < 0.001). Self-rated awareness and understanding of the words 'genome' and 'genome sequencing' increased significantly after watching the animation. Most pupils felt they understood the benefits of sequencing after watching one (75.4%) or both animations (76.6%). Only 17.3% felt they understood the limitations and uncertainties after watching the first, however this was higher among those watching both (58.5%, p < 0.001). Twelve young people, 14 parents and 3 health professionals consenting in the 100,000 Genomes Project reported that the animation was clear and engaging, eased concerns about the process and empowered young people to take an active role in decision-making. To increase accessibility, subtitles in other languages could be added, and the script could be made available in a leaflet format for those that do not have internet access. Future research could focus on formally evaluating the animations in a clinical setting.

SUBMITTER: Lewis C

PROVIDER: S-EPMC7316978 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Population-based studies show that the risk of mental ill health is highest among young people aged 10 to 24 years, who are also the least likely to seek professional treatment because of a number of barriers. Electronic mental (e-mental) health services have been advocated as a method for decreasing these barriers for young people, among which text-based online counseling (TBOC) is a primary intervention used at many youth-oriented services. Although TBOC has shown promising results, its outcome variance is greater in comparison with other electronic interventions and adult user groups. OBJECTIVE:This pilot study aimed to explore and confirm e-mental health professional's perspectives about various domains and themes related to young service users' (YSUs) motivations for accessing TBOC services and factors related to higher and lower effectiveness on these modalities. METHODS:Participants were 9 e-mental health professionals who were interviewed individually and in focus groups using a semistructured interview. Thematic analysis of qualitative themes from interview transcripts was examined across the areas of YSU motivations for access and factors that increase and decrease TBOC effectiveness. RESULTS:A total of 4 domains and various subthemes were confirmed and identified to be related to YSUs' characteristics, motivations for accessing TBOC, and moderators of service effectiveness: user characteristics (ie, prior negative help-seeking experience, mental health syndrome, limited social support, and perceived social difficulties), selection factors (ie, safety, avoidance motivation, accessibility, and expectation), and factors perceived to increase effectiveness (ie, general therapeutic benefits, positive service-modality factors, and persisting with counseling despite substantial benefit) and decrease effectiveness (ie, negative service-modality factors). CONCLUSIONS:Participants perceived YSUs to have polarized expectations of TBOC effectiveness and be motivated by service accessibility and safety, in response to several help-seeking concerns. Factors increasing TBOC effectiveness were using text-based communication, the online counselor's interpersonal skills and use of self-management and crisis-support strategies, and working with less complex presenting problems or facilitating access to more intensive support. Factors decreasing TBOC effectiveness were working with more complex problems owing to challenges with assessment, the slow pace of text communication, lack of nonverbal conversational cues, and environmental and connectivity issues. Other factors were using ineffective techniques (eg, poor goal setting, focusing, and postcounseling direction) that produced only short-term outcomes, poor timeliness in responding to service requests, rupture in rapport from managing service boundaries, and low YSU readiness and motivation.

Project description:ObjectiveDeveloping and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care.DesignControlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes.SettingTwo outpatient IBD clinics in the Netherlands.ParticipantsData collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group).OutcomesData were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD.ResultsAt the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen's d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen's d=-0.43) after transfer.ConclusionA TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

Project description:BackgroundThe PMM Portfolio is comprised of the Paediatric Musculoskeletal Matters (PMM) website, the paediatric Gait, Arms, Legs and Spine (pGALS) app and e-learning modules (ELM). The target audiences are non-specialists in paediatric musculoskeletal medicine. Our study aimed to evaluate impact on learning and clinical practice.MethodsMixed methods (analytics, online survey, interviews) were used with PMM and ELM registered users and purposive sampling of users using international contacts within paediatrics and paediatric rheumatology. Data was analysed using descriptive statistics and qualitative techniques. A Paired T-Test compared self-rated confidence before and after use of the PMM Portfolio.ResultsThere has been wide reach for all the e-resources; PMM website (662,827 hits, 262,476 users, 214 countries, data 31st July 2020); pGALS app (12,670 downloads, 70 countries, data 31st July 2020); ELM (150 users, 30 countries, data 30th May 2019). There were 164 responses (students, trainees and health care professionals) to the survey from 25 countries. Most responders deemed the PMM Portfolio useful / very useful for their learning with significantly increased self-rated confidence in their clinical examination and reasoning skills following access to the PMM website, p = < 0.01, pGALS app, p = < 0.01 and ELM, p = < 0.01. The most popular PMM website pages related to clinical assessment techniques (especially pGALS). There was high uptake of the pGALS app and pGALS ELM especially from trainees and allied health professionals. Many clinicians reported the PMM Portfolio to be useful when used to teach others. User feedback reported that easy navigation, open access, clinical images and cases were the most valued features. User feedback highlighted need to increase awareness of the e-resources through training programmes.ConclusionsThe PMM Portfolio was developed to aid learning for clinicians who are not specialists in paediatric MSK medicine. Our evaluation demonstrates wide international reach and positive feedback on learning. The PMM Portfolio is a highly useful e-resource for paediatric rheumatologists in their teaching of others to raise awareness, facilitate early diagnosis and referral of children with suspected disease. The wide user engagement informed future PMM Portfolio development and the mixed method of evaluation is transferable to other e-resources.

Project description:BackgroundDespite the central role of mixed methods in health research, studies evaluating online methods training in the health sciences are nonexistent. The focused goal was to evaluate online training by comparing the self-rated skills of scholars who experienced an in-person retreat to scholars in an online retreat in specific domains of mixed methods research for the health sciences from 2015-2023.MethodsThe authors administered a scholar Mixed Methods Skills Self-Assessment instrument based on an educational competency scale that included domains on: "research questions," "design/approach," "sampling," "analysis," and "dissemination" to participants of the Mixed Methods Research Training Program for the Health Sciences (MMRTP). Self-ratings on confidence on domains were compared before and after retreat participation within cohorts who attended in person (n = 73) or online (n = 57) as well as comparing across in-person to online cohorts. Responses to open-ended questions about experiences with the retreat were analyzed.ResultsScholars in an interactive program to improve mixed methods skills reported significantly increased confidence in ability to define or explain concepts and in ability to apply the concepts to practical problems, whether the program was attended in-person or synchronously online. Scholars in the online retreat had self-rated skill improvements as good or better than scholars who participated in person. With the possible exception of networking, scholars found the online format was associated with advantages such as accessibility and reduced burden of travel and finding childcare. No differences in difficulty of learning concepts was described.ConclusionsKeeping in mind that the retreat is only one component of the MMRTP, this study provides evidence that mixed methods training online was associated with the same increases in self-rated skills as persons attending online and can be a key component to increasing the capacity for mixed methods research in the health sciences.

Project description:BackgroundThe Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as 'buddies') organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16-25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as 'participants').MethodsA mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks.ResultsSelf-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees' sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.ConclusionsCamp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.

Project description:BACKGROUND:Young people aged 10-24 years are at the highest risk for mental health problems and are the least likely to seek professional treatment. Owing to this population's high consumption of internet content, electronic mental (e-mental) health services have increased globally, with an aim to address barriers to treatment. Many of these services use text-based online counseling (TBOC), which shows promising results in supporting young people but also greater variance in outcomes compared with adult comparators. OBJECTIVE:This pilot study qualitatively explored the characteristics of users aged 15-25 years accessing TBOC services, their motivations for access, and their perceptions about factors believed to influence the effectiveness of these modalities. METHODS:E-surveys were administered naturalistically to 100 young service users aged 15-25 years who accessed webchat and email counseling services via an Australian e-mental health service. Thematic analysis of qualitative themes and quantitative descriptive and proportional data presented in electronic surveys were examined across the areas of user characteristics, motivations for selecting TBOC modalities, and their perceptions of TBOC effectiveness. RESULTS:Participants were predominately female high school students of Caucasian or European descent from middle socioeconomic status, living with their parents in major cities. Four domains and various themes and subthemes were related to participants' reasons for accessing TBOC and perceptions of its effectiveness: user characteristics (ie, physical and mental health syndrome and perceived social difficulties), selection factors (ie, safety, avoidance motivation, accessibility, and expectation), factors perceived to increase effectiveness (ie, general therapeutic benefits, positive modality and service factors, and persisting with counseling to increase benefit), and factors perceived to decrease effectiveness (ie, negative modality and service factors, and persisting with counseling despite benefit). CONCLUSIONS:Participants were motivated to use TBOC to increase their sense of safety in response to negative perceptions of their social skills and the response of the online counsellor to their presenting problem. By using TBOC services, they also sought to improve their access to mental health services that better met their expectations. Factors that increased effectiveness of TBOC were the counsellor's interpersonal skills, use of text-based communication, and persisting with beneficial counseling sessions. Factors that reduced TBOC effectiveness were poor timeliness in response to service requests, experiencing no change in their presenting problem, not knowing what postcounseling action to take, and persisting with ineffective counseling sessions.

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Development and mixed-methods evaluation of an online animation for young people about genome sequencing.

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