Abstract
Background/aims: Universal Health Coverage identifies palliative care as an essential health service for all. Many families face advanced cancer while displaced or seeking refugee status away from their homeland. Truly holistic person-centred care must anticipate and respond to their specific circumstances and needs. This programme of work has sought to identify the specific palliative care-related concerns of families facing advanced cancer including refugees, in Jordan and Turkey and to adapt outcome measurement to support assessment and care.
Methods: We conducted in-depth qualitative interviews in adult oncology services with 50 adult patients (of which 29 were refugees) and 20 caregivers (7 refugees). In paediatric services we interviewed n=50 children and young people with advanced cancer, n=30 of their family members and n=24 healthcare professionals. Following thematic analysis we conducted expert groups to concept map the data to an outcome measure and propose adaptation.
Results: Adults reported (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. Children described psychological changes of maturation and serious illness, spiritual distress and hope for the future, and high financial burden of illness on families. Adult POS has proposed expansion to measure social support, and children’s POS reflects the developmental and existential concerns of children.
Conclusions: Core measurement of symptoms and concerns must be adapted where necessary to reflect specific populations and settings. Refugee families articulate specific concerns and these novel items must be tested to determine their psychometric properties.
Methods: We conducted in-depth qualitative interviews in adult oncology services with 50 adult patients (of which 29 were refugees) and 20 caregivers (7 refugees). In paediatric services we interviewed n=50 children and young people with advanced cancer, n=30 of their family members and n=24 healthcare professionals. Following thematic analysis we conducted expert groups to concept map the data to an outcome measure and propose adaptation.
Results: Adults reported (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. Children described psychological changes of maturation and serious illness, spiritual distress and hope for the future, and high financial burden of illness on families. Adult POS has proposed expansion to measure social support, and children’s POS reflects the developmental and existential concerns of children.
Conclusions: Core measurement of symptoms and concerns must be adapted where necessary to reflect specific populations and settings. Refugee families articulate specific concerns and these novel items must be tested to determine their psychometric properties.
| Original language | English |
|---|---|
| Pages (from-to) | 15-15 |
| 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 |
