Hudson, P., Trauer, T., Kelly, B., O'Connor, M., Thomas, K., Summers, M., . . . White, V. (2013). Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology. [Epub ahead of print]

To examine the effects of a four-step, nurse-led, in-person and phone-based psychoeducational intervention on psychological distress, perceived unmet needs, preparedness, competence, and positive emotions among family caregivers of patients with advanced cancer

Family caregivers of patients with advanced cancer enrolled in home-based palliative care services in Australia were randomized to usual care (control) or to a four-step intervention. Caregivers received a written instruction manual on preparation for the caregiving role and a home visit from a family caregiver support nurse (FCSN), who later developed a personalized care plan for the family’s needs in conjunction with the local palliative care team and educated the caregiver on indicated topics. The FCSN followed up by phone to assess needs and to evaluate the continued appropriateness of the care plan, and reinforced relevant educational and psychosocial coping topics, including attempts to assist the caregiver to identify positive aspects of the caregiving experience. Discussion to prepare for the patient’s death and bereavement was conducted during a second home visit, and a written summary of key strategies and resources for caregiving and coping was provided at the intervention’s conclusion.

• The sample was comprised of 161 family caregivers (70% female, 30% male).
• Mean age of family caregivers was 59 years (range = 22–88 years).
• Family caregivers cared for patients with advanced cancer who were enrolled in a home-based palliative care service.
• Family caregivers were excluded if they were younger than age 18, unable to understand English, or if the patient for whom they cared had a nonmalignant diagnosis or poor functional status. (indicative of impending death).

• Multisite 
• Home setting
• Three palliative care services in Australia

• End-of-life care phase
• Palliative care

 A randomized, controlled, two-arm trial design was used.

• General Health Questionnaire (GHQ) (12 items) – to measure psychological distress
• Caregiver Competence Scale (4 items)
• Preparedness for Caregiving Scale (8 items)
• Family Inventory of Need–part/scale B (20 items)
• Rewards for Caregiving Scale (10 items)

No significant improvements were noted in the primary outcome, psychological distress, as measured by GHQ. Caregivers (especially older ones) who received both home visits scored higher for preparedness for caregiving (p = 0.035) compared to the control group, although the effect size was small (0.29 for the two-visit group). Caregiver competence scores were also significantly improved in the two-visit group compared to the controls (p = 0.04), but not for decrease in unmet needs or perceived positive aspects of caregiving postintervention.

The primary outcome of the study, decrease in psychological distress, was not met.

• The intervention may be expensive, impractical, or require training needs*.
• Subject withdrawals were 10% or greater.
• Though improvements in caregiver preparedness and competence were noted in the subjects in the intervention group that remained in the study long enough to receive both scheduled home visits, the attrition rate over the four-week period was high, limiting the potential recipients. Whether scores were significant in the two-visit recipients because of the intervention effect alone or due to characteristics of the patients/caregivers who were able to/chose to remain throughout is unknown.
• Other limitations/*explanation: The authors noted a suboptimal accrual rate (40% of those eligible) with many refusals, indicating a potential selection bias by the caregivers. Attrition was 42% between time 1 and time 2, without a clear etiology, although a trend for those caregivers related to a patient with declining functional status to withdraw was noted.

This intervention, although previously piloted, theoretical, and evidence-based, was relatively labor intensive, involving personalized care planning with several reassessments by a study nurse outside of the established palliative care service. The authors noted that, on occasion, recommendations made by the FCSN to address unmet needs were unable to be acted upon by local staff due to inadequate resources, and this may have impacted the lack of significant change in scores. Additionally, a high attrition rate was noted, especially among the subgroup possibly most in need of extra support: caregivers with rapidly declining patients. Future work to support this group is needed.