Caregivers of longterm survivors of primary malignant glioma (PMG) often have the unique and stressful challenge of caring for a person with cognitive impairment as well as cancer-related issues.
This study aimed to explore the needs and experiences of this caregiving cohort and identify factors that predict psychological distress.
This study used mixed methodology involving a cross-sectional quantitative questionnaire and semi-structured qualitative interviews. Sixty-nine caregivers (48%) of eligible patients with PMG surviving greater than two years were recruited from two Australian metropolitan tertiary hospitals. Caregivers completed measures of psychological distress (GHQ-12), strain and family wellbeing (FACQ-PC subscales) and patient functional wellbeing (FACT-Br subscales). Correlational analyses identified factors related to caregiver psychological distress. Those of significance (p≤.01) were explored using multiple regression models to determine their predictive value. A subset of 12 caregivers also participated in face-to-face interviews subjected to thematic analyses by three researchers.
Caregivers were mostly female (73%), spouses (67%) and caring for a median of 5.9 years. Whilst caregivers overall reported minimal psychological distress, over a quarter (28%) were at increased risk, warranting clinical attention. Controlling for caregiver age, gender and relationship to the patient, caregiver strain and patient functional wellbeing both significantly predicted caregiver psychological distress (adjusted R2=.35, F(4,60)=17.7, p <.001), accounting for 35% of variance. Thematic analyses revealed unique challenges, such as dealing with invisible deficits and liminality in the context of chronic uncertainty.
Caregiver strain and patient functional wellbeing were the most important predictors of psychological distress among this cohort of caregivers. Other typical factors such as duration of caregiving, performance status and symptom burden were not predictive. Caregivers participating in this study revealed insights into the deficits specific to longterm survivors which in turn impacted their own quality of life, and may inform screening techniques and clinical interventions.