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1.
Support Care Cancer ; 31(10): 610, 2023 Oct 04.
Article in English | MEDLINE | ID: mdl-37792141

ABSTRACT

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 programming 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.


Subject(s)
Neoplasms , Psychosocial Support Systems , Humans , Adolescent , Child , Qualitative Research , Self-Help Groups , Peer Group , Emotions , Neoplasms/therapy
2.
Curr Oncol ; 26(3): 173-182, 2019 06.
Article in English | MEDLINE | ID: mdl-31285662

ABSTRACT

Introduction: The pan-Canadian Oncology Symptom Triage and Remote Support (costars) team is studying how to improve the quality and consistency of cancer symptom management. Methods: A 1-day invitational meeting was held 24 October 2017 in Ottawa, Ontario, to review the current evidence from costars projects and to establish research priorities for a future largescale implementation study. The meeting included 36 participants who were clinicians from adult oncology, pediatric oncology, and homecare; policymakers from national, provincial, and regional organizations; researchers; and a patient. Half the day involved summarizing evidence from four costars studies and experiences with implementing the costars symptom practice guides. The second half of the day used a modified nominal group technique to generate research questions within small groups, presentation of research questions to all participants, and two rounds of voting to reach consensus on research priorities. Results: Participants proposed 4 research categories:■ User-centred augmentation to enhance usability (for example, designing a mobile costars solution)■ Outcome measurement (for example, determining key competencies for clinicians)■ Regular renewal of costars to keep pace with evolving evidence (for example, updates for novel therapies)■ Integration into clinical practice (for example, meaningful engagement of patients and caregivers in study design). Conclusions: Across categories, the top 3 priorities were effect on health services use, competency development, and a mobile costars solution. Future research will address identified priorities, reflecting the needs and perspectives of diverse stakeholders. Stakeholder collaboration will continue to guide our approach to operationalizing this priority research agenda.


Subject(s)
Biomedical Research/organization & administration , Medical Oncology , Canada , Humans , Neoplasms/therapy , Practice Guidelines as Topic , Symptom Assessment , Triage
3.
J Cancer Surviv ; 6(3): 278-86, 2012 Sep.
Article in English | MEDLINE | ID: mdl-22544451

ABSTRACT

PURPOSE: The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required. METHODS: A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes. RESULTS: Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer. CONCLUSIONS: In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC. IMPLICATIONS FOR CANCER SURVIVORS: Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.


Subject(s)
Continuity of Patient Care/organization & administration , Health Personnel , Needs Assessment , Neoplasms/therapy , Parenting , Primary Health Care , Self Care , Adolescent , Adult , Child , Female , Follow-Up Studies , Humans , Male , Patient Education as Topic , Physician-Patient Relations , Pilot Projects , Quality of Life , Survivors
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