Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings
Introduction: Carer roles in palliative care are complex and have many location-based issues, 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...
Saved in:
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
James Cook University
2025-07-01
|
| Series: | Rural and Remote Health |
| Subjects: | |
| Online Access: | https://www.rrh.org.au/journal/article/9343/ |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849428593682153472 |
|---|---|
| author | Bonnie Zhu Peter Lin Heidi Bevan Anne Croker Karin Fisher |
| author_facet | Bonnie Zhu Peter Lin Heidi Bevan Anne Croker Karin Fisher |
| author_sort | Bonnie Zhu |
| collection | DOAJ |
| description |
Introduction: Carer roles in palliative care are complex and have many location-based issues, 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.
Methods: 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 were portrayed through three dimensions (fusion of horizons).
Results: 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, engaging with constellations of relationships and responding to the inevitability of decline. Doing for and with highlights the multiple actions as carers hold their course and participate in palliative care, that is advocating, preparing and collaborating.
Conclusion: Complexities faced by caregivers can be framed in relation to individual reference points, personal capabilities, particular circumstances and locational factors, with complexities not all 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' sensemaking 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.
|
| format | Article |
| id | doaj-art-3a3f04dbf4e946808824eb28aa4f13bd |
| institution | Kabale University |
| issn | 1445-6354 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | James Cook University |
| record_format | Article |
| series | Rural and Remote Health |
| spelling | doaj-art-3a3f04dbf4e946808824eb28aa4f13bd2025-08-20T03:28:40ZengJames Cook UniversityRural and Remote Health1445-63542025-07-012510.22605/RRH9343Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settingsBonnie Zhu0Peter Lin1Heidi Bevan2Anne Croker3Karin Fisher4St George Hospital Orange Health ServiceGosford HospitalThe University of Newcastle University of Newcastle Introduction: Carer roles in palliative care are complex and have many location-based issues, 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. Methods: 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 were portrayed through three dimensions (fusion of horizons). Results: 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, engaging with constellations of relationships and responding to the inevitability of decline. Doing for and with highlights the multiple actions as carers hold their course and participate in palliative care, that is advocating, preparing and collaborating. Conclusion: Complexities faced by caregivers can be framed in relation to individual reference points, personal capabilities, particular circumstances and locational factors, with complexities not all 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' sensemaking 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. https://www.rrh.org.au/journal/article/9343/caregiversconceptual frameworkinterpretive paradigmnavigatepalliative carephilosophical hermeneutics |
| spellingShingle | Bonnie Zhu Peter Lin Heidi Bevan Anne Croker Karin Fisher Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings Rural and Remote Health caregivers conceptual framework interpretive paradigm navigate palliative care philosophical hermeneutics |
| title | Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings |
| title_full | Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings |
| title_fullStr | Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings |
| title_full_unstemmed | Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings |
| title_short | Staying afloat on a realm of shifting sands: carers navigating palliative care in their rural settings |
| title_sort | staying afloat on a realm of shifting sands carers navigating palliative care in their rural settings |
| topic | caregivers conceptual framework interpretive paradigm navigate palliative care philosophical hermeneutics |
| url | https://www.rrh.org.au/journal/article/9343/ |
| work_keys_str_mv | AT bonniezhu stayingafloatonarealmofshiftingsandscarersnavigatingpalliativecareintheirruralsettings AT peterlin stayingafloatonarealmofshiftingsandscarersnavigatingpalliativecareintheirruralsettings AT heidibevan stayingafloatonarealmofshiftingsandscarersnavigatingpalliativecareintheirruralsettings AT annecroker stayingafloatonarealmofshiftingsandscarersnavigatingpalliativecareintheirruralsettings AT karinfisher stayingafloatonarealmofshiftingsandscarersnavigatingpalliativecareintheirruralsettings |