%0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e65619 %T An e-Learning Intervention for Professionals to Promote Family-Centered Cancer Care When a Significant Caregiver for Children Is at End of Life: Mixed Methods Evaluation Study %A Semple,Cherith Jane %A O'Neill,Carla %A Sheehan,Sarah %A McCance,Tanya %A Drury,Amanda %A Hanna,Jeffrey R %+ South Eastern Health & Social Care Trust, Ulster University, York Street, Belfast, BT15 1ED, United Kingdom, 44 2870123456, c.semple@ulster.ac.uk %K e-learning %K intervention evaluation %K mixed methods %K end-of-life care %K educational intervention %K professionals %K self-efficacy %K cancer %K family-centered care %K cancer care %K person-based approach %K qualitative %K evidence-based %K parent %K adverse outcome %K eHealth %D 2024 %7 10.12.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: Families are often unsure how best to prepare dependent children for the death of a significant caregiver with a poor cancer prognosis and seek guidance and support from health care teams. Health and social care professionals (hereafter referred to as professionals) often lack educational opportunities to gain the desired knowledge, skills, and confidence to provide family-centered supportive cancer care. e-Learning has positively impacted access and reach, improving educational opportunities in health care. Objective: We aimed to evaluate the acceptability, usability, and effectiveness of an evidence-based, theory-driven e-learning intervention to equip and promote professionals’ self-efficacy to deliver family-centered supportive cancer care when a significant caregiving member for dependent children is at the end of life. Methods: Guided by the “person-based approach,” a mixed methods outcome evaluation was used. To determine the effect on self-efficacy, participants completed a validated pretest and posttest 12-item self-efficacy survey. The use of one-on-one, remote semistructured interviews and single-item questions determined the usability by professionals of the e-learning intervention and the acceptability of perceived learning in clinical practice. To generate enhanced insights, quantitative and qualitative data were integrated through a 4-stage, modified pillar integration process. Results: Overall, 158 participants completed the pretest survey for the e-learning resource, with 99 (62.7%) completing the posttest survey. Semistructured interviews were conducted with 12 professionals at least 1 month after the intervention. Findings highlighted a statistically significant improvement in posttest self-efficacy (99/158, 62.7%; P<.001). Usability of the e-learning intervention was positive, with participants reporting that it was clear and organized (mean 4.84, SD 0.373), the layout was appealing (mean 4.71, SD 0.539), the language was easy to understand (mean 4.71, SD 0.407), and graphics and media were purposeful (mean 4.76, SD 0.495) and engaging (mean 4.67, SD 0.703). Determining acceptability, participants considered that the intervention would positively impact practice (mean 4.60, SD 0.589) and increase knowledge (mean 4.56, SD 0.677), with appropriate practical examples to support learning (mean 4.58, SD 0.610). Following engagement with the e-learning intervention, professionals reported preparedness to deliver supportive adult-professional end-of-life cancer care, when an adult with significant caregiving responsibilities is dying. Findings demonstrated transferable learning to additional contexts, such as other close adult-child relational bonds (grandparents) and to life-limiting conditions. Conclusions: The systematic and iterative person-based approach optimized the acceptability of a novel e-learning intervention, having the potential to promote family-centered supportive end-of-life cancer care. This accessible e-learning intervention makes an important contribution to the recognized global gap of educational interventions in this field. Equipping professionals with family-centered supportive end-of-life care improves self-efficacy and preparedness to engage in challenging conversations, with the potential to promote better outcomes for affected adults and children and mediate adverse outcomes for adults and children before and after bereavement. %M 39657171 %R 10.2196/65619 %U https://www.jmir.org/2024/1/e65619 %U https://doi.org/10.2196/65619 %U http://www.ncbi.nlm.nih.gov/pubmed/39657171 %0 Journal Article %@ 2369-1999 %I JMIR Publications %V 10 %N %P e52128 %T An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study %A Mueller,Emily L %A Cochrane,Anneli R %A Campbell,Madison E %A Nikkhah,Sarah %A Holden,Richard J %A Miller,Andrew D %+ Section of Pediatric Hematology Oncology, Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, ROC 4340, Indianapolis, IN, 46202, United States, 1 3123990245, elmuelle@iu.edu %K oncology %K supportive care %K mHealth %K children %K caregivers %K mobile phones %D 2024 %7 17.10.2024 %9 Original Paper %J JMIR Cancer %G English %X Background: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers’ perceptions and areas for improvement, and validate the app’s design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child’s medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements. %M 39419493 %R 10.2196/52128 %U https://cancer.jmir.org/2024/1/e52128 %U https://doi.org/10.2196/52128 %U http://www.ncbi.nlm.nih.gov/pubmed/39419493 %0 Journal Article %@ 1438-8871 %I JMIR Publications %V 26 %N %P e50139 %T Twitter Analysis of Health Care Workers’ Sentiment and Discourse Regarding Post–COVID-19 Condition in Children and Young People: Mixed Methods Study %A Chepo,Macarena %A Martin,Sam %A Déom,Noémie %A Khalid,Ahmad Firas %A Vindrola-Padros,Cecilia %+ Department of Targeted Intervention, University College London, Charles Bell House 43-45, Foley Street, London, W1W 7TY, United Kingdom, 44 (0)20 3108 3232, sam.martin@ucl.ac.uk %K COVID-19 %K postacute sequelae of SARS-CoV-2 %K PASC %K post–COVID-19 condition %K children %K vaccines %K social media %K social network analysis %K Twitter %D 2024 %7 17.4.2024 %9 Original Paper %J J Med Internet Res %G English %X Background: The COVID-19 pandemic has had a significant global impact, with millions of cases and deaths. Research highlights the persistence of symptoms over time (post–COVID-19 condition), a situation of particular concern in children and young people with symptoms. Social media such as Twitter (subsequently rebranded as X) could provide valuable information on the impact of the post–COVID-19 condition on this demographic. Objective: With a social media analysis of the discourse surrounding the prevalence of post–COVID-19 condition in children and young people, we aimed to explore the perceptions of health care workers (HCWs) concerning post–COVID-19 condition in children and young people in the United Kingdom between January 2021 and January 2022. This will allow us to contribute to the emerging knowledge on post–COVID-19 condition and identify critical areas and future directions for researchers and policy makers. Methods: From a pragmatic paradigm, we used a mixed methods approach. Through discourse, keyword, sentiment, and image analyses, using Pulsar and InfraNodus, we analyzed the discourse about the experience of post–COVID-19 condition in children and young people in the United Kingdom shared on Twitter between January 1, 2021, and January 31, 2022, from a sample of HCWs with Twitter accounts whose biography identifies them as HCWs. Results: We obtained 300,000 tweets, out of which (after filtering for relevant tweets) we performed an in-depth qualitative sample analysis of 2588 tweets. The HCWs were responsive to announcements issued by the authorities regarding the management of the COVID-19 pandemic in the United Kingdom. The most frequent sentiment expressed was negative. The main themes were uncertainty about the future, policies and regulations, managing and addressing the COVID-19 pandemic and post–COVID-19 condition in children and young people, vaccination, using Twitter to share scientific literature and management strategies, and clinical and personal experiences. Conclusions: The perceptions described on Twitter by HCWs concerning the presence of the post–COVID-19 condition in children and young people appear to be a relevant and timely issue and responsive to the declarations and guidelines issued by health authorities over time. We recommend further support and training strategies for health workers and school staff regarding the manifestations and treatment of children and young people with post–COVID-19 condition. %M 38630514 %R 10.2196/50139 %U https://www.jmir.org/2024/1/e50139 %U https://doi.org/10.2196/50139 %U http://www.ncbi.nlm.nih.gov/pubmed/38630514 %0 Journal Article %@ 2291-9279 %I JMIR Publications %V 9 %N 1 %P e16029 %T Electronic Games for Facilitating Social Interaction Between Parents With Cancer and Their Children During Hospitalization: Interdisciplinary Game Development %A Piil,Karin %A Gyldenvang,Helle Holm %A Møller,Jeppe Kilberg %A Kjoelsen,Tine %A Juul,Jesper %A Pappot,Helle %+ Department of Oncology, Copenhagen University Hospital (Rigshospitalet), Blegdamsvej 9, Copenhagen Ø, 2100, Denmark, 45 35450733, Karin.piil@regionh.dk %K cancer patients %K children %K adolescents %K social relation %K emotional well-being %K gamification %K relatives %K visual design %K serious games %D 2021 %7 21.1.2021 %9 Original Paper %J JMIR Serious Games %G English %X Background: Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various disciplines, who only work toward one specific solution. However, it is possible that bringing together different disciplines, such as design, art, and health care, would allow a broader perspective, resulting in improved solutions. Objective: This study aims to develop tools to enhance the social interaction between a parent with cancer and their child when the child visits the parent in the hospital. Methods: In total, 4 groups of design students within the Visual Design program were tasked with developing games addressing the objective of strengthening relations in situ during treatment. To support their work, the applied methods included professional lectures, user studies, and visual communication (phase I); interviews with the relevant clinicians at the hospital (phase II), co-creative workshops with feedback (phase III), and evaluation sessions with selected populations (phase IV). The activities in the 4 phases were predefined. This modified user design had the child (aged 4-18 years) of a parent with cancer as its primary user. Results: Overall, 4 different games were designed based on the same information. All games had the ability to make adults with cancer and their children interact on a common electronic platform with a joint goal. However, the interaction, theme, and graphical expression differed between the games, suggesting that this is a wide and fertile field to explore. Conclusions: Playing a game can be an efficient way to create social interaction between a parent with cancer and a child or an adolescent, potentially improving the difficult social and psychological relations between them. The study showed that the development of serious games can be highly dependent on the designers involved and the processes used. This must be considered when a hospital aims to develop multiple games for different purposes. %M 33475523 %R 10.2196/16029 %U http://games.jmir.org/2021/1/e16029/ %U https://doi.org/10.2196/16029 %U http://www.ncbi.nlm.nih.gov/pubmed/33475523