Background: Due to complex healthcare needs throughout the lifespan, access to quality health insurance is essential for childhood cancer survivors. Childhood survivors are vulnerable to underinsurance and insurance-related financial distress. A psychoeducational health insurance navigation intervention for childhood cancer survivors is being developed to improve survivors’ health insurance literacy and reduce financial distress. To guide intervention development, qualitative interviews are being conducted with content experts (oncologists, nurses, social workers, health policy researchers, etc) to solicit feedback on the 4-session telehealth-delivered navigation program.
Objectives: To qualitatively assess experts’ evaluation of the content and structure (number of sessions, delivery, etc) of a health insurance navigation program and to utilize feedback to further refine the program for a pilot randomized intervention with childhood cancer survivors.
Methods: A semistructured interview guide was developed to assess experts’ feedback across the following domains: (1) barriers to accessing and using quality health insurance, (2) resources to support health insurance access and use, (3) navigation program content, and (4) intervention structure and delivery. The navigation program content included: (1) an overview of the ACA and health insurance policies, (2) learning about insurance coverage, (3) navigating one’s coverage plan, and (4) managing care costs. Experts took part in 30- to 60-minute interviews, which were recorded. Notes were taken on all interviews immediately following their conclusion, and feedback was organized into domains to detect similarities across experts. Rapid data analyses are underway.
Results: To date, we have conducted 7 individual, dyadic, and focus group interviews with social workers, advocates, physicians, researchers, and navigators. Salient barriers to access and use of quality insurance included (1) lack of health insurance literacy due to insurance transitions (parental insurance during cancer treatment versus own insurance as an adult), (2) lack of knowledge about treatment history and corresponding insurance needs, and (3) considerable time gaps between treatment and healthcare system use later in life. Experts identified organizational resources, such as financial navigation and advocacy resources for patients undergoing cancer treatment, but there were no identified health insurance guides to use as a standard care equivalent. Regarding program content, experts suggested that sessions 1 (ACA Overview) and 2 (Learning about Insurance) be swapped, as knowledge of insurance terms and models may be foundational to discussions about national insurance policies. Experts proposed that content geared toward improving communication with providers (found in session 2) be eliminated in favor of teaching survivors the importance of health insurance advocacy on their own behalf. Feedback was received that insurance-related content be delivered in a manner that is didactic, personalized, and interactive. Experts agreed that weekly sessions are preferable to reinforce acquired knowledge. There was agreement that a professional trained in financial counseling, perhaps a clinical social worker, deliver the program.
Conclusion: Feedback suggests that a navigation program, with recommended adjustments in content and delivery, may be effective in improving health insurance literacy and reducing financial distress for childhood cancer survivors. Given an unpredictable insurance landscape and the growing needs of an aging survivorship population, empowering survivors to better navigate health insurance is warranted.
- Park ER, Li FP, Liu Y, et al. Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study. J Clin Oncol. 2005;23:9187-9197.