Reducing the psychological distress of family caregivers of home‐based palliative care patients: short‐term effects from a randomised controlled trial

Psychological distress affects a significant proportion of caregivers of patients living longer with HGG. The presence of caregiver strain and low patient functional well-being are the most important predictors of psychological distress among this cohort of caregivers.

BackgroundA key component of palliative care is support for family caregivers. Although some family caregivers identify positive aspects, the impact is typically burdensome; they are prone to physical and psychological morbidity, financial disadvantage and social isolation. Outcomes of systematic reviews have highlighted the importance of investment in family caregiver intervention research.PurposeTo provide an overview of the development, evaluation and outcomes arising from of a programme of research (The Melbourne Family Support Program (FSP)), which focused on reducing the psychosocial burden of family caregivers.MethodsDevelopmental work involved a systematic literature review; focus groups with family caregivers and health professionals; and identification of a conceptual framework. Following a pilot randomised controlled trial (RCT), a programme of psychoeducational intervention studies was developed and tested; one via RCT, the others via prepost test.ResultsFour psychoeducational interventions, incorporating one-to-one and group format delivery, conducted in both the home and inpatient hospital/hospice were evaluated. Statistically significant outcomes included improvements in family caregivers’ preparedness, competence, positive emotions, more favourable levels of psychological wellbeing and a reduction in unmet needs. Internationally endorsed guidelines for the psychosocial support of family caregivers were produced and several resources were constructed. Fifteen publications in international peer-reviewed journals have arisen from this programme.ConclusionsThe interventions and resources from the Melbourne FSP provide several evidenced-based and clinically relevant approaches that focus on reducing the psychosocial burden of the caregiving role. In several instances, however, more rigorous methodological testing is advocated.

Objective: To compare the provision of specialized home palliative care (SHPC) by the adult and pediatric SHPC teams at the Munich University Hospital. Methods: All patients treated by one of the SHPC teams and their primary caregivers were eligible for the prospective nonrandomized survey. We analyzed the demographics, the underlying diseases, duration and impact of SHPC on symptom control and quality of life (QOL) as well as the caregivers' burden and QOL. Results: Between April 2011 and June 2012, 100 adult and 43 pediatric patients were treated consecutively; 60 adults (median age, 67.5 years; 55% male) and 40 children (median age, 6 years, 57% male) were included in the study. Oncologic diseases were dominant only in the adult cohort (87 versus 25%, p < 0.001). The median period of care was higher in the pediatric sample (11.8 versus 4.3 weeks; NS). Ninety-five percent of adult and 45% of pediatric patients died by the end of the study ( p < 0.001), 75% and 90% of them at home, respectively. The numbers of significant others directly affected by the patient's disease was higher in children (mean 3.4 versus 1.2; p < 0.001). The QOL of adult patients and children ( p < 0.05 for both), as well as of their primary caregivers ( p < 0.001 for both) improved during SHPC, while the caregivers' burden was lowered ( p < 0.001 for both). Conclusions: Our results show important differences in several clinically relevant parameters between adults and children receiving SHPC. This should assist in the development of age-group specific SHPC concepts that effectively address the specific needs of each patient population.