Nurse-identified needs, recommendations, and referrals during consultations with family carers of patients diagnosed with high-grade glioma

Background The aim of this manuscript was to describe the frequency and types of nurse-identified needs, recommendations, and referrals delivered to intervention-arm carers of patients with high-grade glioma (HGG) during monthly nurse-led telephone assessments in the Care-IS randomized controlled trial. Methods Primary carers of patients diagnosed with HGG (≤2 months prior) and undergoing active treatment were randomized to: a 12-month Care-IS intervention; or, a control group. Carers randomized to the intervention were included in this sub-analysis. Nurses recorded carers’ needs and made recommendations and referrals. Data analysis descriptively explored categories of needs, recommendations, or referrals. Results An initial Nurse Telephone Assessment (NTA) was conducted with carers (N = 92) with drop-out related to time constraints, patient deterioration or death, or study withdrawal (N = 10 at month 10). Nurses identified ≥1 need, recommendation, or referral during the majority (≥90%) of NTAs. Up to 6 months, the most common needs were: dealing with treatment and side effects (74%–85%), understanding physical symptoms and side effects (60%–76%), mental and behavioral changes (53%–67%), and caring for yourself (51%–68%). The top recommendations were: tailored resources from the Care-IS resource manual (81%–96%), community-based support (47%–65%), medical specialist and clinical care (39%–56%), and additional information provision (30%–38%). The top referrals were for medical specialists and clinical care (27%–48%). Palliative care was the main recommendation (29%) and referral (19%) at months 9–10. Conclusions NTAs identified a high frequency of carer unmet needs. Carer needs were highly variable, patient-focused, and changed over time. Nurses must accommodate a broad range of recommendations from providing additional information to making health/community referrals.