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]doi: 10.1002/pon.3242
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.
A randomized, controlled, two-arm trial design was used.
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.
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.