Caregiver experience of specialist hospice palliative care in rural communities: A qualitative study exploring rural culture, hospice nurse characteristics, roles, and carer strategic ideas.

Abstract

Background: Barriers, facilitators, and inequity of access to rural palliative care have been explored from caregiver and healthcare worker perspectives. However, caregiver insights into specialist (secondary) hospice palliative care are sparse. This study facilitates rural people who cared for patients at end-of-life a chance to reflect on experiences and suggest improvements to specialist support in rural communities.

Objectives: To explore how caregivers perceive a specialist hospice palliative care service, and how it could adapt to rural community needs.

Design: Semi-structured interviews over 6 months with bereaved carers of patients under specialist hospice care. A general inductive approach to data analysis.

Methods: Hospice Waikato; a regional specialist palliative care service. Carers were ineligible if bereaved <6 months and must have had service input within 2 years. Those with complex grief were excluded. Twenty-four participants were interviewed.

Results: Themes were: 1. Rural culture; end-of-life care challenges and adaptations. 2. Positive hospice nursing characteristics; empathy, holism, and emotional support. 3. Role of the hospice nurse; was identified. 4. Strategic ideas; embedded community practitioners, increased resources for emotional support and weekends, and timely access to equipment.

Conclusion: Adaptation is required by both carers and the specialist hospice team to overcome rural inequity. A healthcare navigator was desired with the suggestion that this could be the specialist hospice nurse. There is a need to explore the balance between tailoring care to different rural communities and providing consistent and equitable care. Future research could study this and/or compare stakeholder perceptions of different rural palliative care models.