PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.
Young children receiving outpatient cancer care are vulnerable to undermanaged pain. App‐based solutions that provide pain treatment advice to parents in real‐time and in all environments may improve access to quality pain care. We used a parent co‐design approach involving iterative rounds of user testing and software modification to develop a usable Pain Caregiver Resource (PainCaRe) real‐time pediatric cancer pain management app. Parents of children (2–11 years) with cancer completed three standardized modules using a PainCaRe prototype. App usability and acceptability were evaluated using the validated System Usability Scale and a thematic analysis of app testing sessions and interviews. Iterative testing sessions were conducted until data saturation. Interview themes were synthesized into action items that guided revisions to PainCaRe and additional testing rounds were conducted as necessary. Twenty‐two parents participated in three testing cycles. Overall, parents described PainCaRe as an acceptable and potentially clinically useful pain management tool. Mean system usability scores were in the acceptable scale range during each testing cycle. Usability issues identified and resolved included those related to software malfunction, complicated app navigation logic, lack of clarity on pain assessment questions, and the need for pain management advice specifically tailored to child developmental stage. Using co‐design methods, the PainCaRe cancer pain management app was successfully refined for its acceptability and utility to parents. Next steps will include a PainCaRe pilot study before evaluating the impact of the app on younger children's pain outcomes in a randomized controlled trial.
Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home, and digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children’s parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured co-design interviews. We conducted interviews until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child’s pain. The value of the app related to its capacity to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care.Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges associated with digital pain management related to potential burden of use for parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.
Background: Adolescents with cancer routinely report feelings of isolation and exclusion, including from medical decision-making. To address this problem and support adolescents, we designed and implemented into clinical practice the novel, virtual, weekly Teens4Teens peer support group and patient education program. Objective: We examined the views of participating adolescents, program guest speakers, and program moderators as they pertained to the need for the program and its feasibility, acceptability, and perceived impact. Methods: We recruited all available adolescents, moderators, and guest speakers who participated in Teens4Teens to take part in audio-recorded, semi-structured interviews. Interviews were transcribed, coded, and analyzed using thematic analysis. Results: We conducted 21 interviews across participant groups. We identified four broad themes: pathways into the Teen4Teens program, Teens4Teens implementation capacity, perspectives of the positive impact of Teens4Teens and suggestions to improve Teens4Teens. These themes described a perceived need for adolescent-centered psychosocial programing in pediatric cancer care, provided lessons on how best to build and apply such a program in practice, and highlighted the value of the program for both adolescents and clinicians’ acceptability, feasibility, and perceived utility. Conclusion: Adolescents, guest speakers, and moderators valued Teens4Teens and made suggestions to retain or improve capacity to routinely implement the program. Adolescent-tailored psychosocial programming such as Teens4Teens is positioned to be integrated into clinical care with relative ease and may serve to improve the cancer care experience of adolescents and their families.
Purpose Adolescents with cancer routinely report feelings of isolation and exclusion, including from medical decision-making. To address this problem and support adolescents, we designed and implemented the novel, virtual, weekly Teens4Teens peer support group and patient education program. We examined the views of participating adolescents, program guest speakers, and program moderators as they pertained to the need for the program, its feasibility, acceptability, and perceived impact. Methods We recruited all available adolescents, moderators, and guest speakers who participated in Teens4Teens to take part in audio-recorded, semi-structured interviews. Interviews were transcribed, coded, and analyzed using thematic analysis. Results We conducted 21 interviews across participant groups. We identified four broad themes: pathways into the Teen4Teens program, Teens4Teens implementation capacity, perspectives of the positive impact of Teens4Teens and suggestions to improve Teens4Teens. These themes described a perceived need for adolescent-centered psychosocial programing in pediatric cancer care, provided lessons on how best to build and apply such a program, and highlighted the value of the program for both adolescents and clinicians' acceptability, feasibility, and perceived utility. Conclusion Adolescents, guest speakers, and moderators valued Teens4Teens and made suggestions to improve capacity to routinely implement the program. Adolescent-tailored psychosocial programming such as Teens4Teens is positioned to be integrated into clinical care with relative ease and may serve to improve the cancer care experience of adolescents and their families. This study has potential to provide researchers and clinicians with valuable information about the content, design, and delivery of virtual peer support programming for adolescents with cancer.
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