Characteristics of caregiving: A prospective, observational study of lung cancer patients and their informal caregivers

18 Background: Cancer self-management involves active partnership between patients and their informal caregivers (ICs). There is a dearth of literature on ICs to lung cancer patients. Multi-modality treatment and profound challenges in symptom management and lifestyle adjustment are hallmarks of this population. This study aimed to describe the characteristics of, and resources utilized by ICs to lung cancer patients and examine the association between symptom severity and a) caregiver burden and b) perceived support. Methods: This study was conducted at a cancer centre north of Toronto, Canada. Dyads of lung cancer patients receiving outpatient treatment and their self-identified ICs (N = 39) were recruited. Upon consent, participants completed a one-time survey which assessed study variables employing previously validated instruments, including: patient’s functional status, caregiver burden, caregiver’s perceived social support and utilization of resources to enhance self-management. Descriptive analysis was used to describe our sample and frequency of resource utilization. Pearson’s correlation was used to examine the association between symptom severity and a) caregiver burden and b) perceived support. Results: The study sample consisted of middle-aged patients and caregivers (median 55-64 years). A majority of caregivers were female (76.2%), received education above college level (56.1%) and were immediate family members (80.9%). The most frequently utilized resources were the lung cancer patient handbook (48.8%), followed by personal support worker (29.3%). Caregiver support group was the least utilized (10%) resource. Patient’s symptom severity was negatively correlated with one aspect of caregiver burden, caregiver’s self-esteem (r = -0.36, p < 0.05). Conclusions: Findings indicated similarities in caregiver demographics to carers of other patient populations. Informational support and material aid appeared to be the most important resources. Patients’ well-being had the greatest impact on caregivers’ self-esteem, indicating implications on person-centred care and collaborative patient-provider relationships to support patient self-management.