Purpose/objectives: To describe burden, skills preparedness, and quality of life (QOL) for caregivers of patients with non-small cell lung cancer (NSCLC), and describe how the findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.
Design: Descriptive, longitudinal.
Setting: A National Cancer Institute-designated comprehensive cancer center in southern California.
Sample: 163 family members or friends aged 18 years or older and identified by patients as being a caregiver.
Methods: All eligible caregivers were approached by advanced practice nurses during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated-measures analysis of variance was used to test for change over time for all predictor and outcome variables.
Main research variables: Caregiver burden, skills preparedness, psychological distress, and QOL.
Findings: Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline but decreased over time. Psychological distress was moderate but increased in the study period. Overall QOL was moderate at baseline and decreased significantly over time. Psychological well-being had the worst QOL score.
Conclusions: Caregivers experienced high levels of caregiver burden and reported deteriorations in psychological well-being and overall QOL.
Implications for nursing: Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.
Knowledge translation: Although family caregivers are profoundly impacted by a loved one's lung cancer diagnosis, the literature about caregiver burden, skills preparedness, and QOL is limited. Current evidence suggests that family caregivers can be negatively impacted by a loved one's cancer diagnosis. Caregiver-specific support interventions are needed to eliminate the burden of caregiving in lung cancer.