Abstract
Background/aims: The integration of palliative care into standard oncologic care has shown clinical effects on alleviating symptom burden and improving quality of life. However, palliative care is not routinely available across Jordan, and has been excluded in humanitarian emergency and crisis response until recently. This study aimed to identify what matters to patients with advanced cancer and families particularly refugees in Jordan, and explore their unique needs and experiences of receiving cancer and palliative care.
Methods: Face-to-face, semi-structured in-depth interviews were conducted. Adult patients with advanced cancer and caregivers including refugees were purposively sampled to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. All interviews were digitally audio recorded, anonymised, and transcribed verbatim for thematic analysis.
Results: 50 patients (22 refugees) and 20 caregivers (7 refugees) participated, and four themes were identified: (1) Information, communication, and decision-making. Honesty was valued, and participants expressed concerns that information was not shared. (2) Priorities and concerns for care and support. Participants’ top priority remained cure and recovery, followed by returning to their “normal” life and “own” country, and contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God. For refugees whose social network was fractured, prayer and Quran reading became particularly important. (4) Unmet support needs of family caregivers. Family caregivers were affected physically and emotionally by worrying about and caring for the patients.
Conclusions: Providing person-centred and culturally appropriate care is essential. Further research is required to explore the specific models and approaches to holistic cancer and palliative care in Jordan, the role and influence of spirituality among Muslim patients and their families, and the support of family caregivers, particularly following bereavement.
Methods: Face-to-face, semi-structured in-depth interviews were conducted. Adult patients with advanced cancer and caregivers including refugees were purposively sampled to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. All interviews were digitally audio recorded, anonymised, and transcribed verbatim for thematic analysis.
Results: 50 patients (22 refugees) and 20 caregivers (7 refugees) participated, and four themes were identified: (1) Information, communication, and decision-making. Honesty was valued, and participants expressed concerns that information was not shared. (2) Priorities and concerns for care and support. Participants’ top priority remained cure and recovery, followed by returning to their “normal” life and “own” country, and contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God. For refugees whose social network was fractured, prayer and Quran reading became particularly important. (4) Unmet support needs of family caregivers. Family caregivers were affected physically and emotionally by worrying about and caring for the patients.
Conclusions: Providing person-centred and culturally appropriate care is essential. Further research is required to explore the specific models and approaches to holistic cancer and palliative care in Jordan, the role and influence of spirituality among Muslim patients and their families, and the support of family caregivers, particularly following bereavement.
| Original language | English |
|---|---|
| Pages (from-to) | 279-279 |
| Number of pages | 1 |
| Journal | Palliative Medicine |
| Volume | 37 |
| Issue number | 1S |
| DOIs | |
| Publication status | Published - 7 Jun 2023 |
| Event | 18th EAPC World Congress - Rotterdam, Netherlands Duration: 15 Jun 2023 → 17 Jun 2023 |
