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Feraco, Angela

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Feraco, Angela

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    Let’s Talk Again, Now That We Have Our “Sea Legs”: A Qualitative Needs Assessment for a Novel Structured Conversation Targeting the Early Cancer Treatment Period
    (2016-06-07) Feraco, Angela; Sullivan, Amy; Block, Susan D.; Wolfe, Joanne
    Background: The initial months of childhood cancer treatment may occasion changed illness understanding and altered communication needs among families compared with those at diagnosis, but currently, there is no framework to guide communication in this early cancer treatment period (ECTP). Objectives: To elicit (1) lived illness experiences during ECTP, (2) conceptual acceptability of a novel in-depth conversation between families and their pediatric oncologists, the “Day 100 Talk,” (D100) during this period, (3) preferred topics and goals for D100, and (4) potential barriers to D100. Design/Method: We conducted semi-structured interviews with children aged ≥13 years and parents of all-aged children with non-relapsed cancer undergoing treatment for 4 weeks to <6 months, as well as in-depth interviews and focus group with pediatric oncologists. Sampling, interviews, and constant comparative qualitative analysis were informed by grounded theory. Results: Five of 10 (50%) adolescents, 6/11 (55%) parents participated in interviews, and 11/34 (32%) oncology providers participated in interviews or a focus group. Emergent themes of the family experience of ECTP included being shell-shocked, seeking illness information, anticipating loss, settling in, and dividing/changing roles, as parents and children sought to meet the challenges of cancer and its treatment. Providers attempted to facilitate families’ adaptation by tailoring the approach to each family, which largely consisted of repeating illness information, anticipating/deciding family needs, and presence during ECTP. Parent and adolescent participants suggested the D100 concept could facilitate regrouping, including reconvening the multidisciplinary cancer care team and reflecting on progress. D100 could also engage unanswered questions, such as revisiting treatment decisions and anticipating future challenges. Providers echoed the utility of the D100 concept, but expressed a commitment to maintaining professional autonomy to protect clinical time and tailor their approach to each family. Conclusion: The D100 concept appears conceptually acceptable to this small cohort of children with cancer, parents, and providers. Limited clinical time and providers’ commitment to tailoring communication to each family may represent barriers to D100 implementation, despite perceptions that D100 could be a unique opportunity for families to set the conversational agenda. Future work should focus on piloting D100 and determining feasibility and acceptability to key stakeholders.