Aagesen Maria, Pilegaard Marc Sampedro, Janssens Astrid, Hauken May Aasebø, Cour Karen la
User Perspectives and Community-based Interventions, Department of Public Health, University of Southern Denmark, Odense, Denmark.
The Danish Knowledge Centre for Rehabilitation and Palliative Care, REHPA, Odense University Hospital, Nyborg, Denmark.
Res Involv Engagem. 2024 Dec 20;10(1):134. doi: 10.1186/s40900-024-00667-y.
Young adult cancer survivors, defined as individuals aged 18-39 who have completed primary curative treatment, face numerous age-specific biopsychosocial late effects that impact health-related quality of life negatively. Rehabilitation can enhance participation in life roles, work, leisure activities and health-related quality of life. However, there is a lack of age-specific cancer rehabilitation for this population, leaving many young adults with diminished self-efficacy in managing their challenges, resulting in unmet needs. This study aimed to co-produce and develop an age-specific, municipality-based cancer rehabilitation intervention programme to improve young adults' self-efficacy and health-related quality of life.
The development process was completed between September 2019 and June 2023 and followed Hawkins et al.'s three-staged framework for co-production: (1) A literature review and stakeholder consultations; (2) four workshops with 2-6 young adult cancer survivors, 3-4 professionals, and two researchers and one workshop with 20 young adult cancer survivors and two researchers to co-produce the name, component content, delivery methods and potential outcomes; and (3) Refinement of the programme and its programme theory. Key findings from each stage informed the subsequent stages.
The Young Adults Taking ACtion programme was developed. It applies a person-centred approach and is grounded in social cognitive theory and experiential learning theory. It comprises one mandatory component, a needs assessment and goal setting that tailor which of the following seven components the young adults will receive: (1) everyday life, (2) physical activity, (3) psychological issues, (4) education and work, (5) sexuality and relationships, (6) funds and grants, and (7) family and friends. The programme is primarily group-based and will be delivered by an interdisciplinary team over 16 weeks.
We co-produced a comprehensive, goal-oriented, and peer-based rehabilitation programme for young adult cancer survivors. The engagement of young adults and professionals ensured that the programme aligned with the population's needs and preferences and was context specific. Thus, it is likely that the programme will be more realistic and feasible to implement in clinical practice.
年轻成年癌症幸存者是指年龄在18至39岁之间且已完成初次根治性治疗的个体，他们面临着众多特定于该年龄段的生物心理社会晚期效应，这些效应会对健康相关生活质量产生负面影响。康复可以增强对生活角色、工作、休闲活动的参与度以及健康相关生活质量。然而，针对这一人群缺乏特定于年龄的癌症康复服务，导致许多年轻成年人在应对挑战时自我效能感降低，需求未得到满足。本研究旨在共同制定并开发一项特定于年龄的、基于市政当局的癌症康复干预计划，以提高年轻成年人的自我效能感和健康相关生活质量。
开发过程于2019年9月至2023年6月完成，遵循了霍金斯等人的共同生产三阶段框架：（1）文献综述和利益相关者咨询；（2）举办了4次研讨会，每次有2至6名年轻成年癌症幸存者、3至4名专业人员以及两名研究人员参与，还举办了1次有20名年轻成年癌症幸存者和两名研究人员参与的研讨会，共同确定项目名称、组成内容、实施方式和潜在成果；（3）完善该计划及其项目理论。每个阶段的主要发现为后续阶段提供了参考。
制定了“年轻成年人采取行动”计划。该计划采用以人为主的方法，以社会认知理论和体验式学习理论为基础。它包括一个强制性组成部分，即需求评估和目标设定，据此确定年轻成年人将接受以下七个组成部分中的哪些：（1）日常生活，（2）体育活动，（3）心理问题，（4）教育与工作（5）性与人际关系，（6）资金与补助，（7）家人与朋友。该计划主要以小组形式开展，将由一个跨学科团队在16周内实施。
我们为年轻成年癌症幸存者共同制定了一项全面、以目标为导向且基于同伴的康复计划。年轻成年人和专业人员的参与确保了该计划符合该人群的需求和偏好，且具有针对性。因此，该计划在临床实践中实施可能会更加现实和可行。
