Assessing the needs of family caregivers of patients attending an outpatient palliative care clinic: an explanatory sequential mixed methods pilot study.

PURPOSE

Family caregivers are the "invisible backbone" of cancer care; their needs are rarely addressed as part of routine clinical care. This study aimed to assess the needs of family caregivers of patients with advanced cancer attending an outpatient palliative care clinic at a tertiary cancer center.

METHODS

An explanatory sequential mixed methods design. The Carer's Alert Thermometer (CAT) and FAMCARE satisfaction with care scale were administered to consenting family caregivers prior to the patient's outpatient palliative care clinic visit. A subset of caregivers participated in one-on-one semi-structured interviews.

RESULTS

Of 76 caregivers approached, 31 consented and completed measures; 22 (71.0%) were female with a mean age of 59.7 years; and 25 (80.6%) were the patient's spouse. CAT items with highest needs were information about future care needs (64.5%); managing feelings or worries (54.8%); and involvement in decision-making (38.7%); 17 FCs (54.8%) needed support to know the patient's end-of-life care wishes. FAMCARE scores were lowest for the psychosocial (median 3.8/5, 41.9% satisfied) and physical patient care (median 3.8, 45.2% satisfied) subscales. Eleven caregivers completed a qualitative interview, identifying three main themes that aligned with the CAT: "I'm just surprised that its gone on as long as it has"; "I am absolutely no longer the wife. I'm the caregiver, and that's two different roles" and "I know you're supposed to take care of yourself."

CONCLUSIONS

Family caregivers of patients with advanced cancer have unmet needs across several distinct domains. Tailored interventions and responses based on routine needs assessment should be explored.