9 research outputs found
Stress, resilience, and moral distress among health care providers in oncology during the COVID-19 pandemic
BackgroundThe coronavirus pandemic has potential implications for stress levels and resilience among oncology healthcare professionals (HCPs). This study aims to assess perceived stress, resilience, and moral distress levels among oncology HCPs in Jordan during the pandemic and identify associated risk factors.MethodsAn online cross-sectional survey was conducted among oncology HCPs in Jordan using three validated tools: Perceived Stress Scale (PSS), Connor-Davidson Resilience Scale (CD-RSIC), and Moral Distress Thermometer (MDT). Seven items were used to assess sources of stress.ResultsA total of 965 participants enrolled with a 74% response rate. The participantsâ ages ranged from 20 to 74 (meanâ=â32.74, SDâ=â5.197), with 79.1% males, 45.1% were physicians, 32.6% were public hospital workers, 57.1% were married, and 56.6% had children below 18âyears. Findings indicated moderate perceived stress (Meanâ=â15.87, SDâ=â5.861), low resilience (Meanâ=â29.18, SDâ=â5.197), and high moral distress (Meanâ=â4.72, SDâ=â2.564). Females, unmarried individuals, and younger age groups exhibited higher PSS (p =â0.009, p <â0.001, and P<0.001) and lower resilience (p =â0.024, p =â0.034, and p =â0.001). Not having children below 18âyears correlated with higher perceived stress (P < 0.001). In linear regression analysis, age and gender emerged as significant predictors of both perceived stress and resilience. Female participants reported stress related to the risk of contracting COVID-19 (p =â0.001), transmitting it to others (p =â0.017), social isolation (P < 0.001), and having children at home due to school closures (p =â0.000). A cohort of 239 participants repeated the survey within a two-month interval, revealed a statistically significant decrease in the CD-RISC scores (p <â0.001).ConclusionOncology HCPs in Jordan experienced moderate stress, high moral distress, and poor resilience during the COVID-19 pandemic. These factors may negatively affect the quality of oncology care. Urgent measures are necessary to support HCPs in coping with unforeseen circumstances in the future
Providing person-centered palliative care in conflict-affected populations in the Middle East: What matters to patients with advanced cancer and families including refugees?
IntroductionUniversal health coverage highlights palliative care as an essential component of health services. However, it is unclear what constitutes person-centered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to patients with advanced cancer and family caregivers in Jordan including refugees, to inform appropriate person-centered assessment and palliative care in conflict-affected populations.MethodsCross-sectional face-to-face, semi-structured interviews were conducted at two sites in Amman. Adult patients with advanced cancer and family caregivers were purposively sampled to maximize diversity and representation. Interviews were digitally audio recorded, anonymized, and transcribed verbatim for thematic analysis.FindingsFour themes were generated from 50 patients (22 refugees; 28 Jordanians) and 20 caregivers (7 refugees; 13 Jordanians) (1). Information, communication, and decision-making. Truth-telling and full disclosure from clinicians was valued, and participants expressed concerns that information was not shared in case patients would disengage with treatment. (2) Priorities and concerns for care and support. Participantsâ top priority remained cure and recovery (which was viewed as possible). Other priorities included returning to their ânormalâ life and their âownâ country, and to continue contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God and felt that having faith could comfort them. For refugees whose social network was fractured due to being away from home country, 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. They needed support and training, but often could not access this.DiscussionTruth-telling is highly valued and essential to achieving person-centered care and informed decision-making. This study also reveals specific concerns in conflict-affected populations, reflecting the experience of prior losses and fracturing of existing social networks and support. The role of religion is crucial in supporting refugee communities, and consideration should be paid to the needs of patients and caregivers when caring for a patient at home without access to their communities of origin and the support they accessed
Decision-Making Preferences among Advanced Cancer Patients in a Palliative Setting in Jordan
Understanding patientsâ decision-making preferences is crucial for enhancing patientsâ outcomes. The current study aims to identify Jordanian advanced cancer patientsâ preferred decision-making and to explore the associated variables of the passive decision-making preference. We used a cross-sectional survey design. Patients with advanced cancer referred to the palliative care clinic at a tertiary cancer center were recruited. We measured patientsâ decision-making preferences using the Control Preference Scale. Patientsâ satisfaction with decision-making was assessed with the Satisfaction with Decision Scale. Cohenâs kappa statistic was used to assess the agreement between decision-control preferences and actual decision-making, and the bivariate analysis with 95% CI and the univariate and multivariate logistic regression were used to examine the association and predictors of the demographical and clinical characteristics of the participants and the participantsâ decision-control preferences, respectively. A total of 200 patients completed the survey. The patientsâ median age was 49.8 years, and 115 (57.5%) were female. Of them, 81 (40.5%) preferred passive decision control, and 70 (35%) and 49 (24.5%) preferred shared and active decision control, respectively. Less educated participants, females, and Muslim patients were found to have a statistically significant association with passive decision-control preferences. Univariate logistic regression analysis showed that, being a male (p = 0.003), highly educated (p = 0.018), and a Christian (p = 0.006) were statistically significant correlates of active decision-control preferences. Meanwhile, the multivariate logistic regression analysis showed that being a male or a Christian were the only statistically significant predictors of active participantsâ decision-control preferences. Around 168 (84%) of participants were satisfied with the way decisions were made, 164 (82%) of patients were satisfied with the actual decisions made, and 143 (71.5%) were satisfied with the shared information. The agreement level between decision-making preferences and actual decision practices was significant (â±Ș coefficient = 0.69; 95% CI = 0.59 to 0.79). The studyâs results demonstrate that a passive decision-control preference was prominent among patients with advanced cancer in Jordan. Further studies are needed to evaluate decision-control preference for additional variables, such as patientsâ psychosocial and spiritual factors, communication, and information sharing preferences, throughout the cancer trajectory so as to inform policies and improve practice
Concerns and priority outcomes for children with advanced cancer and their families in the Middle East:A cross-national qualitative study
IntroductionPalliative care access is limited in the Middle-East, with few specialist centers and forcibly displaced migrants facing additional struggles to access care. Little is known about the specificities of providing palliative care to children and young people (CYP) with cancer. They are rarely asked directly their concerns and needs, which limits the provision of quality patient-centered care. Our study aims to identify the concerns and needs of CYP with advanced cancer and their families, in Jordan and Turkey.MethodA qualitative cross-national study in Jordan and Turkey with framework analysis was conducted two pediatric cancer centers in Jordan and Turkey. In each country, 25 CYP, 15 caregivers and 12 healthcare professionals participated (N=104). Most caregivers (70%) and healthcare professionals (75%) were women.ResultsWe identified five areas of concern: (1) Physical pain and other symptoms (e.g. mobility, fatigue); (2) Psychological concerns and needs (e.g. anger, psychological changes); (3) Spirituality, uncertainty over the future and use of âTawakkulâ (e.g. use of religion as a coping mechanism); (4) Negative impact on social life (e.g. social isolation, loss of support); (5) Burden on caregiver and their families (e.g. financial issues, siblings left behind). Psychological concerns were a priority for both CYPs and caregivers (particularly for refugee and displaced families) but often overlooked during routine care. CYP were able to share their own concerns and care priorities.ConclusionsAdvanced cancer care must ensure assessment and management of concerns across the concerns identified. Developing child- and family-centered outcomes would ensure monitoring the quality of care. Spirituality had a more important role compared to similar investigation in other regions.</p
Concerns and priority outcomes for children with advanced cancer and their families in the Middle East: A cross-national qualitative study
IntroductionPalliative care access is limited in the Middle-East, with few specialist centers and forcibly displaced migrants facing additional struggles to access care. Little is known about the specificities of providing palliative care to children and young people (CYP) with cancer. They are rarely asked directly their concerns and needs, which limits the provision of quality patient-centered care. Our study aims to identify the concerns and needs of CYP with advanced cancer and their families, in Jordan and Turkey.MethodA qualitative cross-national study in Jordan and Turkey with framework analysis was conducted two pediatric cancer centers in Jordan and Turkey. In each country, 25 CYP, 15 caregivers and 12 healthcare professionals participated (N=104). Most caregivers (70%) and healthcare professionals (75%) were women.ResultsWe identified five areas of concern: (1) Physical pain and other symptoms (e.g. mobility, fatigue); (2) Psychological concerns and needs (e.g. anger, psychological changes); (3) Spirituality, uncertainty over the future and use of âTawakkulâ (e.g. use of religion as a coping mechanism); (4) Negative impact on social life (e.g. social isolation, loss of support); (5) Burden on caregiver and their families (e.g. financial issues, siblings left behind). Psychological concerns were a priority for both CYPs and caregivers (particularly for refugee and displaced families) but often overlooked during routine care. CYP were able to share their own concerns and care priorities.ConclusionsAdvanced cancer care must ensure assessment and management of concerns across the concerns identified. Developing child- and family-centered outcomes would ensure monitoring the quality of care. Spirituality had a more important role compared to similar investigation in other regions
Developing a global practice-based framework of person-centred care from primary data:a cross-national qualitative study with patients, caregivers and healthcare professionals
INTRODUCTION: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. METHODS: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et alâs PCC model (2018) and Giusti et alâs systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. RESULTS: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. CONCLUSION: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce
International validation of two EORTC questionnaires for assessment of healthârelated quality of life for patients with highâgrade nonâHodgkin lymphoma (QLQâNHLâHG29) and lowâgrade nonâHodgkin lymphoma (QLQâNHLâLG20)
Background: Healthârelated quality of life (HRQOL) is a critical aspect to consider
when making treatment decisions for patients with nonâHodgkinâlymphoma (NHL).
This international study by the European Organisation for Research and Treatment
of Cancer (EORTC) tested the psychometric properties of two newly developed
measures for patients with highâgrade (HG)â and lowâgrade (LG)âNHL: the EORTC
QLQâNHLâHG29 and the EORTC QLQâNHLâLG20 to supplement the core questionnaire (EORTC QLQâC30).
Methods: Overall, 768 patients with HGâNHL (N = 423) and LGâNHL (N = 345) from
12 countries completed the QLQâC30, QLQâNHLâHG29/QLQâNHLâLG20 and a
debriefing questionnaire at baseline, and a subset at followâup for either retest
(N = 125/124) or responsiveness to change (RCA; N = 98/49).
Results: Confirmatory factor analysis showed an acceptable to good fit of the 29
items of the QLQâNHLâHG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/
functioning [WH]), and of the 20 items of the QLQâNHLâLG20 on its four scales (SB,
PF, EI, and WH). Completion took on average 10 minutes. Testâretest reliability,
convergent validity, knownâgroup comparisons, and RCA find satisfactory results of
both measures. A total of 31%â78% of patients with HGâNHL and 22%â73% of
patients with LGâNHL reported symptoms and/or worries (e.g., tingling in hands/
feet, lack of energy, and worries about recurrence). Patients reporting symptoms/
worries had substantially lower HRQOL compared to those without.
Discussion: The use of the EORTC QLQâNHLâHG29 and QLQâNHLâLG20 questionnaires in clinical research and practice will provide clinically relevant data to
better inform treatment decisionâmaking