Modes of responsibility in disclosing cancer genetic test results to relatives: An analysis of Swiss and Korean narrative data.

OBJECTIVE: We examined how responsibility (the "duty to inform relatives about genetic testing results") is understood and enacted among Swiss and Korean women carrying BRCA1 or BRCA2 pathogenic variants. METHODS: In-depth interviews and/or focus groups with 46 Swiss and 22 Korean carriers were conducted, using an identical interview guide. Data were analyzed inductively and translated into English for cross-country comparisons. RESULTS: We identified five modes of responsibility in both samples: Persuader, Enabler, Relayer, Delayer, and Decliner. The Enabler and Relayer modes were the most common in both countries. They followed the rational imperative of health and norms of competence and self-determination, respectively. The Relayer mode transmitted information without trying to influence relatives' decisions. The Delayer and Decliner modes withheld information, deeming it the best way to safeguard the family during that specific moment of its trajectory. Responsibility to disclose testing results was influenced by culturally diverging conceptions of the family unit and socio-contextual norms. CONCLUSION: Responsibility primarily reflects the imperative of health prevention; findings demonstrate various interpretations, including the sense of family caring achieved through controlled disclosure of genetic information. PRACTICE IMPLICATIONS: Findings offer healthcare providers socio-anthropological insights to assist probands navigate the disclosure of genetic information within their families. TRIAL REGISTRATION NUMBER: NCT04214210 (registered Nov 2, 2020), KCT 0005643 (registered Nov 23, 2020).

Challenges of palliative care identified by stakeholders in resource-limited settings: A multi-regional study in Kazakhstan.

INTRODUCTION: In Kazakhstan, a country of 19 million residents, more than 100,000 patients need palliative care. Since at least one family member is usually involved in the care of a terminal patient, more than 200,000 people would benefit from high-quality palliative care services in the country. However, with only 45 physicians and 101 nurses attending to 1925 palliative beds, Kazakhstan seeks to develop palliative services that meet the national needs in resource-limited settings and international standards. The objectives of this study are to explore the challenges faced by stakeholders involved in palliative care in Kazakhstan and to subsequently provide recommendations that can guide policymakers towards further developing palliative care services in the country. METHODS: This cross-sectional descriptive study collected narrative data with in-depth interviews from n= 29 palliative stakeholders (family caregivers n= 12, healthcare professionals =12, administrators n= 5) across five regions of Kazakhstan. Verbatim transcripts of interviews were analyzed using content analysis to identify needs and challenges of stakeholders involved in palliative care. RESULTS: Our analysis identified seven main challenges of palliative care stakeholders: high out-of-pocket expenditures; lack of mobile palliative care services for home-based care; severe shortages of opioids to prevent pain suffering; poor formal palliative care education; absence of practical skills training for family caregivers; lack of awareness about palliative care in the society, and lack of state support. CONCLUSION: Implementation of national palliative care strategies and policies require a large-scale coordinated involvement of all stakeholders. Our recommendations are based on the idea that coordinated, targeted, and tailored stakeholder engagement is preferred to a one-size-fits-all strategy.