Hudson, P., Trauer, T., Kelly, B., O'Connor, M., Thomas, K., Zordan, R., & Summers, M. (2014). Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial. Psycho-Oncology, 24, 19–24. 

To evaluate changes in family caregiver distress between the referral of a patient with advanced cancer to palliative care and eight weeks after patient death based on caregiver involvement in a theoretically- and home-based one-on-one psychoeducational intervention

Family caregivers of patients with advanced cancer enrolled in home-based palliative care services in Australia were randomized to usual care (control) or one of two experimental groups that received usual care and one of two versions of a psychoeducational intervention. One intervention included one home visit and three phone calls, and the other included two home visits and two phone calls to meet rural access issues with some caregivers. Caregivers received written information in a piloted tested guidebook to prepare for the caregiver role, and trained family caregiver support nurses (FCSNs) used intervention manuals to provide consistency in developing and implementing plans to meet family role and caregiver psychological well-being and educational needs. Caregiver distress was measured within a two-week period of patient referral to palliative care (baseline, time 1), one week after the four-week intervention (time 2), and eight-weeks after patient death (time 3).

• N = 298  
• MEAN AGE = Females; 59 years, males; 61.7 years (range = 22–88 years)
• MALES: 30%, FEMALES: 70%
• KEY DISEASE CHARACTERISTICS: English-speaking adult primary family caregivers of patients with advanced cancer enrolled in home-based palliative care
• OTHER KEY SAMPLE CHARACTERISTICS: Exclusion criteria included caregivers of patients with nonmalignant diagnoses or a defined poor functional status

• SITE: Multi-site    
• SETTING TYPE: Home    
• LOCATION: Three states in Australia

• PHASE OF CARE: End-of-life care
• APPLICATIONS: Palliative care 

Randomized, controlled trial with two arms (two versions of intervention)

• General Health Questionnaire (GHQ): 12 items with a history of established reliability and validity

The study sample included 86% urban caregivers. Diverse patient and caregiver factors caused a 42% caregiver attrition rate between time 1 and time 3 that affected the measurement of caregiver psychological well-being at eight-weeks after patient death. Almost 80% of caregivers provided care to a spouse or parent and lived with the patient an average of six years. There was a significant effect for age (p < 0.001) and gender (p < 0.04), and a close significance of time (p < 0.06), but no significant interaction of time with intervention. Younger and female caregivers had worse (higher) GHQ scores, and an overall analysis indicated that the intervention ameliorated a usual rise in caregiver distress after patient death but did not fully prevent an insult to caregivers' psychological well-being.

Psychological distress decreased by eight weeks after patient death among the caregivers of patients with advanced cancer enrolled in palliative care services if caregivers received a psychoeducational intervention involving one home visit and three phone calls.

• Unintended interventions or applicable interventions not described that would influence results: Authors acknowledged the inconsistency of caregiver support services as part of palliative care services, which would have affected FCSN effect with identified intervention
• Subject withdrawals ≥ 10%

Trained FCSNs exert a powerful role in assisting the caregivers of patients with advanced cancer during the dying process, preventing the complications of prolonged grief. The implementation and evaluation of theoretically-based interventions, tailored to caregiver needs and sociocultural context, can support the efficient multidisciplinary team delivery of care to promote caregiver well-being.