Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: ( a) Sacred Trust to Care for the Child and Family, ( b) An Elephant in the Room, ( c) Struggling with Emotional Unknowns, ( d) Kaleidoscope of Death: Patterns and Complexity, ( e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and ( f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses.
224 Background: The survivorship needs of Adolescents and Young Adults (AYA) with cancer are complex and differ from other age groups. Evidence suggests that AYA cancer survivors are unaware of and underutilize supportive care services both during and after treatment. Recently, the Needs Assessment & Service Bridge (NA-SB) tool was developed to screen AYAs’ survivorship needs and facilitate delivery of appropriate services. We engaged a stakeholder group of YA cancer survivors from the Midwest United States to provide feedback regarding NA-SB content and administration. Methods: We used a descriptive focus group design. We recruited 10 YA cancer survivors, aged 20-38, of diverse sex, race, rural/urban residence, and on/off active therapy. We held five 90-minute virtual stakeholder group meetings. Before the first meeting, stakeholders reviewed the 57 NA-SB items. The PI and a trained facilitator co-led the meetings, asking participants about the utility of the NA-SB, item content, response options, and administration. Meetings were recorded and transcripts were analyzed deductively, organizing comments by the 9 NA-SB domains. Results: Stakeholders endorsed all original NA-SB items, modified 4 items, and identified 18 new items (Table). Stakeholders recommended that YA patients initially complete the NA-SB in-person shortly after treatment begins, and again electronically at clinical milestones. They suggested using a screening question for each domain, allowing patients to skip items not relevant for them. Conclusions: The stakeholder-engaged process resulted in a modified NA-SB and recommendations for administration that reflect the needs of our Midwestern YA cancer survivor population. Prior to implementation, we will integrate recommendations from clinician experts and align available resources with NA-SB domains.[Table: see text]
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