The Hidden Patients of Oncology: Unmet Supportive Care Needs and Caregiving Burden Among Family Caregivers of Adults Receiving Chemotherapy

Background: Informal caregivers of adults receiving chemotherapy manage complex outpatient care responsibilities and experience unmet supportive care needs, caregiving burden, and psychological distress. As oncology care increasingly shifts toward ambulatory settings, understanding the multidimensional needs of this "hidden patient" population is essential for developing targeted nursing interventions.

Aim: This study aimed to identify unmet supportive care needs, caregiving burden, anxiety, and depression among informal caregivers and examine associations among these domains.

Methods: This descriptive, cross-sectional study included 120 family caregivers of adults receiving outpatient chemotherapy at a state university hospital in Türkiye between October 2018 and May 2019. Data were collected using researcher-developed caregiver and patient identification forms and three validated instruments: the Caregiver Supportive Care Needs Survey (CSCNS), Zarit Caregiving Burden Scale (ZCBS), and Hospital Anxiety and Depression Scale (HADS). Data were analyzed using descriptive statistics, independent-samples t-tests, analysis of variance (ANOVA), Mann–Whitney U tests, Kruskal–Wallis tests, and Pearson’s or Spearman’s correlations analyses.

Results: Caregivers (mean age: 48.4 years; 73.3% female; 47.5% spouses of patients) reported the highest levels of unmet supportive care needs in the Work/Social (mean=2.9) and Psychological/Emotional (mean=2.6) domains. The mean ZCBS score was 36.5, indicating mild-to-moderate caregiving burden, while mean HADS anxiety and depression scores fell within the borderline range. Caregiving burden was significantly higher among female caregivers and those who had provided care for 7–11 months. Unmet supportive care needs were positively correlated with caregiving burden (r=0.487), anxiety (r=0.508), and depression (r=0.465).

Conclusion: Informal caregivers of adults receiving outpatient chemotherapy experience unmet supportive care needs, mild-to-moderate caregiving burden, and elevated anxiety and depression symptoms. Nurse-led education on chemotherapy-related toxicities, structured communication, care navigation support, and brief psychoeducation interventions may help reduce caregiving burden and improve caregiver well-being in routine oncology practice.

Keywords: Anxiety, caregiver burden, caregivers, neoplasms, nursing, unmet needs