Compounded trauma: a qualitative study of the challenges for refugees living with advanced cancer

Ping Guo, Sawsan Alajarmeh, Ghadeer Alarja, Waleed Alrjoub, Ayman Al-Essa, Lana Abusalem, Asem Mansour, Richard Sullivan, Omar Shamieh, Richard Harding

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Abstract

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (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. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

Original languageEnglish
Pages (from-to)916-926
Number of pages11
JournalPalliative Medicine
Volume35
Issue number5
Early online date26 Mar 2021
DOIs
Publication statusPublished - May 2021

Bibliographical note

Funding Information:
The authors are grateful to all the patients and caregivers who participated in this study. We would like to thank Khalil Al-Khawaldeh, Fadi Rasras, Shayma?a Shamoun from Al Bashir Hospital and Shayma?a Turki from the Center for Palliative & Cancer Care in Conflict (CPCCC), King Hussein Cancer Center for their valuable support during the delivery of the study. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded through the UK Research and Innovation Global Challenges Research Fund (GCRF): Research for Health in Conflict in the Middle East and North Africa (R4HC-MENA) project; developing capability, partnerships and research in the Middle East and North Africa (project number ES/P010962/1).

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded through the UK Research and Innovation Global Challenges Research Fund (GCRF): Research for Health in Conflict in the Middle East and North Africa (R4HC-MENA) project; developing capability, partnerships and research in the Middle East and North Africa (project number ES/P010962/1).

Publisher Copyright:
© The Author(s) 2021.

Keywords

  • Advanced cancer
  • experiences
  • needs
  • palliative care
  • qualitative study
  • refugees

ASJC Scopus subject areas

  • Anesthesiology and Pain Medicine

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