Informal caregivers of people with advanced cancer take on an extensive role in meeting the needs of the patient. The literature indicates that there are several negative consequences of providing care. While some caregivers do very poorly in caregiving roles, others maintain relatively good psychological functioning.
The aims of this study were to describe the tasks and time commitment of informal caregivers, and to examine the association between patient factors and caregiver outcomes. Caregiver measures assessed psychological functioning, self-efficacy, care tasks, burden and quality of life. Patient measures assessed psychological functioning, quality of life and symptoms.
Seventy caregiver and patient dyads were recruited across two metropolitan Melbourne sites. Patients had advanced lung (n=36; 51%) or gastrointestinal cancer (n=34; 49%). Patients had a mean age of 63 (range 40-85) and 52% were male. Caregivers had a mean age of 56 years (range 25-78 years) and 60% were female. Fifty dyads (71%) were spouses or partners.
Caregivers were heavily invested in care provision. Carers provided a mean of 7.85 hours each day, and fifty two (74%) reported they provide care seven days a week. The most common tasks completed by caregivers include accompanying the patient to appointments (86%), monitoring side effects (76%) and driving (76%). On average, caregivers had higher distress than patients (p=0.001). Caregiver and patient distress were related (r=0.41; p<0.01). Associations between patient symptoms and caregiver burden, distress, quality of life and self-efficacy were not significant. The association between time spent providing care and caregiver distress was also not significant.
This study demonstrated the extensive role of care provision. Interestingly, caregivers of more symptomatic patients did not report poorer functioning. Implications for clinical practice and research will be discussed.