Deatrick Janet A, Knafl Kathleen A, Knafl George J, Bressler Shannon N, Stevens Evelyn M, Ver Hoeve Elizabeth S, Zukin Heather, Rhodes Gates, Leri Damien, Hobbie Wendy, Barakat Lamia P
Author Affiliations: University of Pennsylvania (Drs Deatrick and Barakat, and Mr Rhodes), Philadelphia; University of North Carolina at Chapel Hill (Drs G. Knafl and K. Knafl); Children's Hospital of Philadelphia (Mss Bressler, Stevens, Zukin, Hobbie, and Dr Barakat), Pennsylvania; University of Arizona (Ms Ver Hoeve), Tucson; and Big Yellow Star (Mr Leri).
Cancer Nurs. 2022;45(4):E746-E757. doi: 10.1097/NCC.0000000000001041. Epub 2021 Dec 9.
Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM.
The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1).
Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study.
In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern.
Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families.
When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing.
儿童脑肿瘤成年幸存者的母亲照顾者在家庭管理（FM）方面面临的挑战已有充分记录，但尚无基于证据的照顾者干预措施来改善家庭管理。
本研究的目的是（1）生成开发照顾者干预措施所需的知识（0阶段），以及（2）通过让利益相关者参与来修改现有的有效干预措施（1阶段）。
本研究采用了美国国立卫生研究院行为干预发展阶段模型的0阶段和1阶段以及家庭管理风格框架。
在0阶段，以疾病为中心的家庭管理模式的家庭被确定为解决问题能力差的风险人群。选择家庭管理测量中的12项疾病管理能力量表作为筛选工具，以识别以疾病为中心的母亲照顾者。解决问题被确定为促进行为改变的潜在机制。在1阶段，通过整合家庭管理风格框架对“日常生活的明智想法”进行了修改，创建了针对儿童脑肿瘤成年幸存者照顾者的问题解决培训。母亲照顾者对可行性和可接受性的定性和定量评估结果极佳，并用于改进选定的关注领域。
利益相关者的反馈表明，问题解决培训是一种有前途的方法，可以改变家庭管理模式，改善照顾者、成年幸存者和家庭的功能。
在开发干预措施时，使用系统方法可以提供基于临床且科学上可接受的解决方案。那些基于问题解决和家庭管理的干预措施可能很有前景，但需要进一步测试。
