Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings

Early Abstract:

Introduction: Carer roles in palliative care are complex with many location-based issues identified, including for people in rural areas. Meaningful support for carers in rural areas needs to be informed by carers’ actual experiences rather than relying on routine data collection. To embrace the complexity of carer experiences, we framed caregiving in palliative care as a journey that involves actions and needs to be navigated. We deliberately chose to use the verb ‘navigate’ as an action-based metaphor. Thus, we positioned ourselves to view carers’ involvement in palliative care in rural areas as being non-linear, active and involving undetermined paths. Locating our research in the interpretive paradigm, we sought to develop a conceptual framework to inform reflections and discussions to provide meaningful support for carers involved in palliative care in rural areas.
Method: Our qualitative research, undertaken in the interpretive paradigm, was informed by philosophical hermeneutics. Participants were carers who had previously cared for patients requiring palliative care. Local clinicians approached potential participants known to them, inviting them to participate if interested. Our sample size of eight reflects the outcome of a deliberate balance between the sensitivity of the topic, scope for deep engagement through semi-structured interviews, recruitment requiring established carer-clinician relationships, our location with low population density and workforce shortages, and considerations for research informed by philosophical hermeneutics. Interpretations were iterative, involving cyclical phases of analysis, moving between individual and collective engagement with data, participant quotes and whole transcripts (hermeneutic circle). Through ongoing returns to the data, we moved to conceptually higher understandings (question and answer dialogue) that was portrayed through three dimensions (fusion of horizons). 
Findings: The experiences of carers as they navigated palliative care were interpreted as three interrelated dimensions: realm of shifting sands, staying afloat and doing for and with. Realm of shifting sands highlights the diversity and potential fragility of terrains carers are navigating: that is foundational sense of duty, constellations of relationships and inevitability of decline. Staying afloat highlights the dynamic responses required to navigate these terrains, that is revisiting foundational sense of duty, responding to the inevitability of decline and engaging with constellations of relationships. Doing for and with highlights the multiple actions as carers hold their course and participate in palliative care, that is advocating, preparing and collaborating. 
Discussion: Complexities faced by caregivers can be framed in relation to individual reference points, personal capabilities, particular circumstances as well as locational factors, with not all complexities relating to the rural setting. For carers, rural settings encompassed more than location-based properties, involving aspects of the community, values and personal connections relevant to caregivers’ changing situations. Thus, a rural location is one of a range of complexities that can both hinder and enhance carers’ sense-making and participation in palliative care. While undertaken in our rural region, we were not seeking for this research to be representative of diverse rural settings. Rather, we provide the information to facilitate transferability of our findings so readers can use their understanding of their own contexts to establish the relevance of our findings to their situations. 
Keywords: caregivers, conceptual framework, interpretive paradigm, navigate, palliative care, philosophical hermeneutics, qualitative research, rural.