Dataset Information

"If I have a cancer, it is not my fault I am a refugee": A qualitative study with expert stakeholders on cancer care management for Syrian refugees in Jordan.

ABSTRACT: BACKGROUND:Noncommunicable diseases including cancer are widespread amongst the 5.6 million Syrian refugees currently hosted in the Middle East. Given its prevalence as the third leading cause of death in Syria, cancer is likely to be an important health burden among Syrian refugees. Against this background, our aim was to describe the clinical, ethical and policy decision-making experiences of health actors working within the current refugee cancer care system; the impact of refugee cancer care health policies on health care providers and policy makers in this context; and provide suggestions for the way delivery of care should be optimised in a sustained emergency situation. METHODS:From April-July 2016, we conducted in-depth interviews with 12 purposively sampled health officials and health care workers from the Jordanian Ministry of Health, multilateral donors and international non-governmental organisations. Data were analysed using a framework analysis approach to identify systemic, practical and ethical challenges to optimising care for refugees, through author agreement on issues emerging from the data and those linked more directly to areas of questioning. RESULTS:As has been previously reported, central challenges for policy makers and health providers were the lack of quality cancer prevalence data to inform programming and care delivery for this refugee population, and insufficient health resource allocation to support services. In addition, limited access to international funding for the host country, the absence of long-term funding schemes, and barriers to coordination between institutions and frontline clinicians were seen as key barriers. In this context where economic priorities inevitably drive decision-making on public health policy and individual care provision, frontline healthcare workers and policy makers experienced significant moral distress where duties of care and humanitarian values were often impossible to uphold. CONCLUSIONS:Our findings confirm and expand understanding of the challenges involved in resource allocation decisions for cancer care in refugee populations, and highlight these for the particular situation of long term Syrian refugees in Jordan. The insights offered by frontline clinicians and policy makers in this context reveal the unintended personal and moral impact of resource allocation decisions. With many countries facing similar challenges in the provision of cancer care for refugees, the lessons learned from Jordan suggest key areas for policy revision and international investment in developing cancer care policies for refugees internationally.

SUBMITTER: Marzouk M

PROVIDER: S-EPMC6764666 | biostudies-other | 2019

REPOSITORIES: biostudies-other

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"If I have a cancer, it is not my fault I am a refugee": A qualitative study with expert stakeholders on cancer care management for Syrian refugees in Jordan.

Marzouk Manar M Kelley Maureen M Fadhil Ibtihal I Slama Slim S Longuere Kajsa-Stina KS Ariana Proochista P Carson Gail G Marsh Vicki V

PloS one 20190927 9

<h4>Background</h4>Noncommunicable diseases including cancer are widespread amongst the 5.6 million Syrian refugees currently hosted in the Middle East. Given its prevalence as the third leading cause of death in Syria, cancer is likely to be an important health burden among Syrian refugees. Against this background, our aim was to describe the clinical, ethical and policy decision-making experiences of health actors working within the current refugee cancer care system; the impact of refugee can ...[more]

PMID: 31560701

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Project description:BackgroundMounting evidence is revealing disparities in cognitive function and heightened dementia risk among refugees, yet research in this area remains scant. Despite bearing most of the world's refugee burden, limited-resource countries like Jordan are facing challenges when dealing with refugee health. There is a lack of research on the attitudes toward dementia and the cognitive healthcare gaps among refugees in Jordan.Methods32 older (≥ 55 years) Syrian refugees resettled in Jordan were recruited through a local community-based organization and interviewed in four focus groups (2 female and 2 male groups). Interviews were transcribed and translated, then coded using inductive thematic analysis.ResultsMean age of the sample was 60.1 years and 53.1% were female. Only 34.4% rated their memory as good or excellent. Themes were organized using the socioecological model: 1) At the individual level, participants believed high levels of stress, including low socioeconomic status, poor health, and traumatic history from their refugee experience increased their dementia risk. 2) Interpersonally, there is a fear of dementia due to the possible impact and burden on loved ones, particularly with the stigma surrounding dementia. 3) At the community level, participants noted that resettlement in Jordan - with a shared language, religion, and culture - offered protective effects due to facilitated access to social connection, information, and mental health self-care. 4) At the institution and policy level, participants believed older refugees faced restrictive policies for economic aid, healthcare, and employment, presenting a significant barrier to healthy aging.ConclusionsFindings from this study are the first to examine the attitudes of Syrian refugees in Jordan toward dementia and cognitive aging. These results could provide essential data inclusive of refugees as Jordan develops its National Dementia Plan. Investing in dementia awareness interventions and age-friendly neighborhoods may benefit aging refugees in limited-resources settings.

Project description:Background The conflict in Syria has required humanitarian agencies to implement primary-level services for non-communicable diseases (NCDs) in Jordan, given the high NCD burden amongst Syrian refugees; and to integrate mental health and psychosocial support into NCD services given their comorbidity and treatment interactions. However, no studies have explored the mental health needs of Syrian NCD patients. This paper aims to examine the interaction between physical and mental health of patients with NCDs at a Médecins Sans Frontières (MSF) clinic in Irbid, Jordan, in the context of social suffering. Methods This qualitative study involved sixteen semi-structured interviews with Syrian refugee and Jordanian patients and two focus groups with Syrian refugees attending MSF’s NCD services in Irbid, and eighteen semi-structured interviews with MSF clinical, managerial and administrative staff. These were conducted by research staff in August 2017 in Irbid, Amman and via Skype. Thematic analysis was used. Results Respondents describe immense suffering and clearly perceived the interconnectedness of their physical wellbeing, mental health and social circumstances, in keeping with Kleinman’s theory of social suffering. There was a ‘disconnect’ between staff and patients’ perceptions of the potential role of the NCD and mental health service in alleviating this suffering. Possible explanations identified included respondent’s low expectations of the ability of the service to impact on the root causes of their suffering, normalisation of distress, the prevailing biomedical view of mental ill-health among national clinicians and patients, and humanitarian actors’ own cultural standpoints. Conclusion Syrian and Jordanian NCD patients recognise the psychological dimensions of their illness but may not utilize clinic-based humanitarian mental health and psychosocial support services. Humanitarian agencies must engage with NCD patients to elicit their needs and design culturally relevant services.

Project description:ImportanceThe management of noncommunicable diseases in humanitarian crises has been slow to progress from episodic care. Understanding disease burden and access to care among crisis-affected populations can inform more comprehensive management.ObjectiveTo estimate the prevalence of hypertension and diabetes with biological measures and to evaluate access to care among Syrian refugees in northern Jordan.Design, setting, and participantsThis cross-sectional study was undertaken from March 25 to April 26, 2019, in the districts of Ramtha and Mafraq, Jordan. Seventy clusters of 15 households were randomly sampled, and chain referral was used to sample Syrian households, representative of 59 617 Syrian refugees. Adults were screened and interviewed about their access to care. Data analysis was performed from May to September 2019.ExposuresPrimary care delivered through a humanitarian organization since 2012.Main outcomes and measuresThe main outcomes were self-reported prevalence of hypertension and diabetes among adults aged 18 years or older and biologically based prevalence among adults aged 30 years or older. The secondary outcome was access to care during the past month among adults aged 18 years or older with a diagnosis of hypertension or diabetes.ResultsIn 1022 randomly sampled households, 2798 adults aged 18 years or older, including 275 with self-reported diagnoses (mean [SD] age, 56.5 [13.2] years; 174 women [63.3%]), and 915 adults aged 30 years or older (608 women [66.5%]; mean [SD] age, 46.0 [12.8] years) were screened for diabetes and hypertension. Among adults aged 18 years or older, the self-reported prevalence was 17.2% (95% CI, 15.9%-18.6%) for hypertension, 9.8% (95% CI, 8.6%-11.1%) for diabetes, and 7.3% (95% CI, 6.3%-8.5%) for both conditions. Among adults aged 30 years or older, the biologically based prevalence was 39.5% (95% CI, 36.4%-42.6%) for hypertension, 19.3% (95% CI, 16.7%-22.1%) for diabetes, and 13.5% (95% CI, 11.4%-15.9%) for both conditions. Adjusted for age and sex, prevalence for all conditions increased with age, and women had a higher prevalence of diabetes than men (adjusted prevalence ratio, 1.3%; 95% CI, 1.0%-1.7%), although the difference was not significant. Complications (57.4%; 95% CI, 51.5%-63.1%) and obese or overweight status (82.8%; 95% CI, 79.7%-85.5%) were highly prevalent. Among adults aged 30 years or older with known diagnoses, 94.1% (95% CI, 90.9%-96.2%) currently took medication. Among adults aged 18 years or older with known diagnoses, 26.8% (95% CI, 21.3%-33.1%) missed a medication dose in the past week, and 49.1% (95% CI, 43.3%-54.9%) sought care in the last month.Conclusions and relevanceDuring this protracted crisis, obtaining care for noncommunicable diseases was feasible, as demonstrated by biologically based prevalence that was only moderately higher than self-reported prevalence. The high prevalence of complications and obese or overweight status, however, suggest inadequate management. Programs should focus on reinforcing adherence and secondary prevention to minimize severe morbidity.

Project description:AimsChildren's responses to war and displacement are varied; many struggle, while others appear resilient. However, research into these outcomes disproportionately focuses on cross-sectional data in high-income countries. We aimed to (1) investigate change in resilience across two timepoints in a highly vulnerable sample of Syrian refugee children in Lebanon, and (2) explore predictors of their mental health problems across time.MethodsIn total, 982 Syrian child-caregiver dyads living in refugee settlements in Lebanon completed questionnaires via interview at baseline and follow-up one year later. We categorised children into groups based on their risk for mental health problems across both timepoints (stable high risk/SHR, deteriorating, improving, stable low risk) according to locally validated cut-offs on measures of post-traumatic stress disorder (PTSD), depression and behavioural problems. Analyses of covariance identified how the groups differed on a range of individual and socio-environmental predictors, followed up by cross-lagged panel models (CLPMs) to investigate the directionality of the relationships between significantly related predictors and symptoms.ResultsThe sample showed a meaningful amount of change in mental health symptoms from baseline to follow-up. Over half (56.3%) of children met SHR criteria and 10.3% deteriorated over time, but almost one-quarter (24.2%) showed meaningful improvement, and 9.2% were consistently at low risk for mental health problems at both timepoints. Several predictors differentiated the groups, particularly social measures. According to CLPMs, maternal acceptance (β = -0.07) predicted child mental health symptoms over time. Self-esteem (β = -0.08), maternal psychological control (β = 0.10), child maltreatment (β = 0.09) and caregiver depression (β = 0.08) predicted child symptoms and vice versa (βse = -0.11, βb = 0.07, βmpc = 0.08, βcm = 0.1, βcd = 0.11). Finally, child symptoms predicted loneliness (β = 0.12), bullying (β = 0.07), perceived social support (β = -0.12), parent-child conflict (β = 0.13), caregiver PTSD (β = 0.07), caregiver anxiety (β = 0.08) and the perceived refugee environment (β = -0.09).ConclusionsOur results show risk and resilience are dynamic, and the family environment plays a key role in children's response to war and displacement. Conversely, children also have a significant impact on the family environment and caregiver's own mental health. Interventions to promote resilience in refugee children should therefore consider family-wide mechanisms.

Project description:BackgroundTackling the high non-communicable disease (NCD) burden among Syrian refugees poses a challenge to humanitarian actors and host countries. Current response priorities are the identification and integration of key interventions for NCD care into humanitarian programs as well as sustainable financing. To provide evidence for effective NCD intervention planning, we conducted a cross-sectional survey among non-camp Syrian refugees in northern Jordan to investigate the burden and determinants for high NCDs prevalence and NCD multi-morbidities and assess the access to NCD care.MethodsWe used a two-stage cluster design with 329 randomly selected clusters and eight households identified through snowball sampling. Consenting households were interviewed about self-reported NCDs, NCD service utilization, and barriers to care.We estimated the adult prevalence of hypertension, diabetes type I/II, cardiovascular- and chronic respiratory conditions, thyroid disease and cancer and analysed the pattern of NCD multi-morbidities. We used the Cox proportional hazard model to calculate the prevalence ratios (PR) to analyse determinants for NCD prevalence and logistic regression to determine risk factors for NCD multi-morbidities by calculating odds ratios (ORs).ResultsAmong 8041 adults, 21.8%, (95% CI: 20.9-22.8) suffered from at least one NCD; hypertension (14.0, 95% CI: 13.2-14.8) and diabetes (9.2, 95% CI: 8.5-9.9) were the most prevalent NCDs. NCD multi-morbidities were reported by 44.7% (95% CI: 42.4-47.0) of patients. Higher age was associated with higher NCD prevalence and the risk for NCD-multi-morbidities; education was inversely associated.Of those patients who needed NCD care, 23.0% (95% CI: 20.5-25.6) did not seek it; 61.5% (95% CI: 54.7-67.9) cited provider cost as the main barrier. An NCD medication interruption was reported by 23.1% (95% CI: 20-4-26.1) of patients with regular medication needs; predominant reason was unaffordability (63.4, 95% CI: 56.7-69.6).ConclusionThe burden of NCDs and multi-morbidities is high among Syrian refugees in northern Jordan. Elderly and those with a lower education are key target groups for NCD prevention and care, which informs NCD service planning and developing patient-centred approaches.Important unmet needs for NCD care exist; removing the main barriers to care could include cost-reduction for medications through humanitarian pricing models. Nevertheless, it is still essential that international donors agencies and countries fulfill their commitment to support the Syrian-crisis response.

Project description:BackgroundSince the beginning of the Syrian humanitarian crisis, Syrians sought refuge in many safer countries. Many aspects of Syrian refugees' lives have been affected, hence affecting the overall quality of their lives. However, only one study has investigated their quality of life (QOL). The aim of this study was to assess the QOL of Syrian refugees residing outside camps in Jordan and compare it to the QOL of Jordanians and to other refugees and populations around the globe.MethodsData were obtained from Syrian refugees residing outside camps in Jordan, and from two Jordanian groups; low socioeconomic status (LSES) Jordanians and average socioeconomic status (ASES) Jordanians in 2017. A total of 661 Syrians, 208 LSES Jordanians and 714 ASES Jordanians, aged between 18 and 75 years were included. The World Health Organization Quality of Life instrument (WHOQOL-BREF) questionnaire was used as the QOL assessment tool. Analysis of Variance "ANOVA" and post hoc Tukey-Honest tests were used to find the differences between the means of QOL questions in the three groups (Syrians, ASES, and LSES). Stepwise multivariate linear regression was performed for each domain to determine the most associated risk factors.ResultsNo significant difference was found between Syrian refugees and LSES Jordanians in the physical health domain. Syrian refugees scored significantly lower than LSES Jordanians in the psychological health and social relationship domain. Syrian refugees scored significantly higher than LSES Jordanians in the environmental domain. ASES Jordanians scored significantly higher than the other two groups in all domains, with all its scores above the average.DiscussionDespite the support Jordan provides to the Syrian refugees, they still seem to suffer from poor psychological health, social relationships and environmental domains, with scores below 50 on (0-100) scale. Nonetheless, no significant difference was found between Syrian refugees and LSES Jordanians in the physical health domain, furthermore they scored significantly higher than LSES Jordanians in the environmental domain despite both scoring below 50 on (0-100) scale in this domain. Physical, psychological, and social domains were mainly affected by having a job, having higher income, and being married and free from diseases.

Dataset Information

"If I have a cancer, it is not my fault I am a refugee": A qualitative study with expert stakeholders on cancer care management for Syrian refugees in Jordan.

Publications

"If I have a cancer, it is not my fault I am a refugee": A qualitative study with expert stakeholders on cancer care management for Syrian refugees in Jordan.

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