P08.10.B Family-centred care in neuro-oncology: a longitudinal mixed-methods feasibility study

Abstract

Abstract Background A diagnosis of a malignant brain tumour represents a fearful event for patients, often followed by severe physical, cognitive, emotional, and psychosocial impairments. In turn, being a family member and an informal caregiver of a person with an oncological disease is also a burdensome experience. Family and network can influence patient outcomes, and family-centred intervention may help both patients and caregivers to face illness-related issues. However, studies aiming at implementing family-centered interventions in patients with high grade glioma (HGG) and their families are scarce. Therefore, this study aims to understand how patients with HGG and their families experienced the course of illness and investigate the impact of family and network consultations (FNCs) on both of them. Material and Methods We adopted a quasi-experimental feasibility study using a longitudinal mixed-methods design. The intervention consisted of three FNCs delivered over a 1-year period. Quantitative data on physical activity level, anxiety, depression, family functioning, perceived nursing support, symptom burden and interference on daily living, caregiver burden and quality of life were collected at four time points. Qualitative data on patients’ and families’ perspectives on the intervention were explored through telephone interviews. Results A total of 21 patients with HGG and 47 family members were included in the study. Patients mean age was 66 years and they were mainly male (86%), married and living with the patient (95%), and retired (54%). Caregivers mean age was 47 years, and they were mainly female (62%), children of the cared person (47%), and employed (55%). The integration of quantitative and qualitative data showed that many variables improved over time (e.g., symptom interference in patients, family functioning in caregivers, quality of life) or remained stable (e.g., anxiety and depression), apart from physical functioning and symptom burden that worsened. Families described FNCs as a valuable strategy to holistically address the needs and concerns of the entire family and to strengthen the family dialogue and union. Conclusion FNCs can be a valuable strategy to implement family-centred care practices. However, advanced nursing competencies are required to provide optimal family-centred care. Plus, the intervention should be personalized and based on the needs of each family.