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Caregivers play an important role in caring for individuals receiving hospice care at home, but also face negative outcomes (e.g., burden, depression, anxiety) associated with caregiving at the end-of-life.
There are many different interventions aimed at supporting caregivers, but few studies have broadly examined outcomes of interventions that support caregivers caring for individuals receiving home-based hospice palliative care. The aim of this scoping review by Alshakhs and colleagues (2023) was to provide a roadmap of the limitations and strengths of current and past interventions. Specifically, the objectives of the study included:
- describing the characteristics of these interventions,
- discussing key study outcomes, limitations, and knowledge gaps,
- highlighting intervention strengths, and
- proposing future research directions to advance research in this caregiver population.
The review included 76 studies describing 55 unique interventions that took place in 14 countries. Included studies were reviewed, data was extracted and the interventions were categorized as: education, symptom management, psychological support, interventions aimed to improve caregiver communication with health care providers, spiritual/religious support, and other.
The most frequently reported intervention elements consisted of caregiver education, followed by strategies to manage symptoms, psychological support, enhancing caregiver communication with health care providers and spiritual/religious support.
Interventions were most often delivered by nurses, followed by an interdisciplinary team, an individual health care provider, research staff or social worker. Six interventions were self-administered. Interventions ranged from a one-time interaction (eg. a nurse visit or provision of education materials) through to multiple interactions on a daily, weekly or other schedule frequency.
Of the included studies, only 38 reported on outcomes. The most measured outcome was caregiver quality of life, followed by anxiety and burden. Twenty studies reported data on caregiver quality of life, while only 5 of these studies identified a statistically significant improvement. Eleven of 18 studies analyzing anxiety and 8 out of 15 studies analyzing burden identified a statistically significant improvement.
The authors noted that many of the interventions were in the early phases of development, highlighting the need for future studies efficacy, effectiveness, and the ability to implement interventions in real-world settings.
Source: Alshakhs, S., Park, T., McDarby, M., Reid, M. C., Czaja, S., Adelman, R., … & Phongtankuel, V. (2023). Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review. Journal of Palliative Medicine.
