Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study
Open accessAbstract
Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of transitions between care settings for those receiving specialist palliative care. Design: Qualitative study using thematic analysis. Setting/participants: Semi-structured interviews were conducted with adult patients ( n = 15) and family caregivers ( n = 11) receiving specialist palliative care, who had undergone at least two transitions. Results: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. Conclusions: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.
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Patients receiving palliative care frequently experience multiple transitions between hospital and home.
“Patients receiving palliative care frequently experience multiple transitions between hospital and home [15, 16].”
From Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study (2024) · cites this paper as [15]
The Background describes transitions among hospital, home and other palliative care settings. The Discussion reports repeated home–hospital trajectories, but only for an Italian subgroup of cancer decedents who had at least three transitions; it does not establish that patients receiving palliative care generally experience multiple hospital–home transitions frequently. Page numbers are not available in our copy. (LLM, conf=0.85)
Experimental — accuracy not yet measuredEnd-of-life patients and their family caregivers face multifaceted challenges during this transition period.
“End-of-life patients and their family caregivers face multifaceted challenges during this transition period [15].”
From Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study (2024) · cites this paper as [15]
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- Authors
- Guo, P., Pinto, C., Edwards, B., Pask, S., Firth, A., O’Brien, S., & Murtagh, F. E.
- Affiliations
- King's College London (GB)
- Corresponding author
- Guo, Ping
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2021-09-03
- Volume
- 36
- Issue
- 1
- Pages
- 124-134
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- PMC
- PMC8793309
- OpenAlex
- W3198833130
- Cited by
- 37
- References
- 48
- Citations by year
- 2026: 7 · 2025: 8 · 2024: 7 · 2023: 3 · 2022: 12
- FWCI
- 4.76
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Palliative Medicine (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Repository@Hull (Worktribe) (University of Hull) (submittedVersion, cc-by)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion, cc-by)
- Research Portal (King's College London) (submittedVersion, other-oa)
- Funders
- national institute for health research (RP-PG-1210-12015)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- specialist palliative care, advanced disease, family caregivers, uncertainty, biographical disruption, continuity of care, sense of normality, patient experience, hospital-to-home transition, hospice care
- MeSH terms
- Adult, Family, Hospices, Humans, Palliative Care, Caregivers, Hospice Care, Qualitative Research
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