Distress and problem assessment among people living with cancer from Culturally and Linguistically Diverse backgrounds

Skaczkowski, Gemma; Pejoski, Natalie; Kaur, Jasmeen; White, Victoria; Livingston, Patricia M.; Wilson, Carlene

doi:10.1002/pon.5503

Cited by 6 publications

(6 citation statements)

References 28 publications

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“…Cancer survivors from rural areas experience high-levels of cancer-related distress (the multifactorial, unpleasant, emotional experience that interferes with their ability to cope with cancer, treatment, and symptoms effectively). As recently as 10 years ago, fewer than 10% of all individuals with cancer were being screened for cancer-related distress, but with wider adoption of screening tools such as the National Comprehensive Cancer Network Distress Thermometer and Problem List [ 1 ], as many as 70% of individuals with cancer are now being screened [ 2 - 4 ]. Unfortunately, despite this high rate of screening, difficulty connecting rural survivors with psychosocial support persists.…”

Section: Introductionmentioning

confidence: 99%

Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study

DeGuzman¹,

Vogel²,

Bernacchi³

et al. 2022

JMIR Form Res

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Background Even when technology allows rural cancer survivors to connect with supportive care providers from a distance, uptake of psychosocial referrals is low. Fewer than one-third of participants in a telemedicine intervention for identifying rural survivors with high distress and connecting them with care accepted psychosocial referral. Objective The purpose of this research was to examine the reasons for which rural cancer survivors did not accept a psychosocial referral. Methods We utilized a qualitative design to address the research purpose. We interviewed participants who had been offered psychosocial referral. Semistructured interviews were conducted 6 weeks later (n=14), and structured interviews were conducted 9 months later (n=6). Data were analyzed descriptively using an inductive approach. Results Ultimately, none of the rural cancer survivors (0/14, 0%) engaged with a psychosocial care provider, including those who had originally accepted referrals (0/4, 0%) for further psychosocial care. When explaining their decisions, survivors minimized their distress, emphasizing their self-reliance and the need to handle distress on their own. They expressed a preference for dealing with distress via informal support networks, which was often limited to close family members. No survivors endorsed public stigma as a barrier to accepting psychosocial help, but several suggested that self-stigma associated with not being able to handle their own distress was a reason for not seeking care. Conclusions Rural cancer survivors’ willingness to accept a psychosocial referral may be mediated by the rural cultural norm of self-reliance and by self-stigma. Interventions to address referral uptake may benefit from further illumination of these relationships as well as a strength-based approach that emphasizes positive aspects of the rural community and individual self-affirmation.

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Section: Introductionmentioning

confidence: 99%

Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study

DeGuzman¹,

Vogel²,

Bernacchi³

et al. 2022

JMIR Form Res

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“…Whilst certain cultural lifestyle factors may potentially enable better symptom management and therefore explain the reduced likelihood to experience fatigue, it is difficult to elucidate the true causation as literature regarding symptom distress in culturally and linguistically diverse (CALD) cancer patients is limited and conflicting. For example, one study found that migrants with cancer were more likely to report worse health-related QoL and higher emotional distress compared to Anglo-Saxon patients [ 31 ], whilst another found that CALD patients reported a similar level of symptom distress (measured through the Distress Thermometer and Problem Checklist) to non-CALD patients [ 32 ]. Similar to our findings, a recent study using PCOC data reported that cancer patients preferring non-English languages were less likely to report symptoms or problems, except for family/carer problems [ 33 ].…”

Section: Discussionmentioning

confidence: 99%

Characteristics of patients diagnosed with pancreatic cancer who access palliative care: An observational study

et al. 2023

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Purpose Despite the benefits of palliative care (PC) in pancreatic cancer, little is known about patients who access PC. This observational study examines the characteristics of patients with pancreatic cancer at their first episode of PC. Methods First-time, specialist PC episodes captured through the Palliative Care Outcomes Collaboration (PCOC), in Victoria, Australia between 2014 and 2020, for pancreatic cancer, were identified. Multivariable logistic regression analyses examined the impact of patient- and service-level characteristics on symptom burden (measured through patient-reported outcome measures and clinician-rated scores) at first PC episode. Results Of 2890 eligible episodes, 45% began when the patient was deteriorating and 32% ended in death. High fatigue and appetite-related distress were most common. Generally, increasing age, higher performance status and more recent year of diagnosis predicted lower symptom burden. No significant differences were noted between symptom burden of regional/remote versus major city dwellers; however, only 11% of episodes recorded the patient as a regional/remote resident. A greater proportion of first episodes for non-English-speaking patients began when the patient was unstable, deteriorating or terminal, ended in death and were more likely to be associated with high family/carer problems. Community PC setting predicted high symptom burden, with the exception of pain. Conclusion A large proportion of first-time specialist PC episodes in pancreatic cancer begin at a deteriorating phase and end in death, suggesting late access to PC. Timely referrals to community-based specialist PC, access in regional/remote areas, as well as development of culturally diverse support systems require further investigation.

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“…These difficulties are compounded in the CALD population by language and cultural barriers in addition to lower health literacy ( Leung et al, 2014 ; Ng & Omariba, 2010 ). There is a large body of evidence regarding the benefits of patient-reported outcome (PRO) screening, including facilitating discussions around patients’ supportive care needs and decreased symptom severity ( Howell et al, 2015 ; Jack et al, 2013 ; Kotronoulas et al, 2014 ; Skaczkowski et al, 2020 ). The screening of PRO, using standardized self-administered questionnaires, is undertaken in both CALD and non-CALD populations.…”

Section: Discussionmentioning

confidence: 99%

“…The screening of PRO, using standardized self-administered questionnaires, is undertaken in both CALD and non-CALD populations. However, evidence indicates that there are differences in how CALD patients complete these questionnaires (e.g., family members complete the questionnaire), which might limit the benefits of PRO screening ( Skaczkowski et al, 2020 ).…”

Section: Discussionmentioning

confidence: 99%

Chronic Illness Management in Culturally and Linguistically Diverse Patients: Exploring the Needs, Access, and Understanding of Information

Lambert

Loban

et al. 2021

Qual Health Res

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In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients’ information needs and provide strategies that go beyond translation.

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Distress and problem assessment among people living with cancer from Culturally and Linguistically Diverse backgrounds

Cited by 6 publications

References 28 publications

Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study

Self-reliance, Social Norms, and Self-stigma as Barriers to Psychosocial Help-Seeking Among Rural Cancer Survivors With Cancer-Related Distress: Qualitative Interview Study

Characteristics of patients diagnosed with pancreatic cancer who access palliative care: An observational study

Chronic Illness Management in Culturally and Linguistically Diverse Patients: Exploring the Needs, Access, and Understanding of Information

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