Sangeeta Chattoo

Clinical encounters and culturally competent practice: The challenges of providing cancer and infertility care

This qualitative paper deals with the challenges of translating culturally competent care into practice. It looks at how those working in oncology and reproductive medicine engage with adults from South Asian and white ethnic backgrounds, whose fertility might be affected by cancer. Our findings suggest practitioners, despite a commitment to sensitive care, struggle to engage with cultural diversity and reconciling individual behaviour with what they think they know about South Asian cultures. This creates misunderstandings, leading to poor practice. Our conclusion explores the extent to which practitioners can adopt more sensitive practice by understanding that cultural beliefs are negotiable.

Translation of the Social Difficulties Inventory (SDI-21) into three south Asian languages and preliminary evaluation of SDI-21(Urdu)

PurposeIn the United Kingdom, cross-cultural adaptation of questionnaires would allow for inclusivity in assessment in cancer clinics for non-English speakers. The aim was to translate the Social Difficulties Inventory (SDI-21) into Urdu, Punjabi and Hindi and undertake preliminary evaluation of translated versions.MethodsThe study comprised three stages: (1) translation/back translation and evaluation of cultural equivalence of the SDI-21, (2) south Asian (SA) patient evaluation of SDI-21 translations and (3) evaluation using Rasch analysis comparing English and Urdu SDI-21 from data pooled from this and three other studies.ResultsForward/backward translation resulted in minor amendments particularly in forward translation of SDI-21(Hindi). The majority of the 55 patients interviewed found the SDI-21 acceptable and clear, resulting in no amendments (all versions). Rasch analysis demonstrated good fit. Differential item functioning (DIF) was found for one item, in the comparison of white English (WE)- and SA Urdu-speaking groups. Detailed DIF analysis comparing self-completion and read-aloud administration by language group demonstrated this DIF only held for the comparison between SA English speakers (self-completion) and SA Urdu (read out).ConclusionsTranslated versions are culturally and linguistically acceptable. The SDI-21 (Urdu) performs similarly to the English version when self-completed.

Inherited blood disorders, genetic risk and global public health: framing ‘birth defects’ as preventable in India

ABSTRACT This paper engages critically with the global assemblage framing sickle cell and thalassaemia disorders as a ‘global health crisis’; and the promise of genomics, largely DNA-based carrier/pre-conceptual screening, prenatal diagnosis with a view to terminations, deployed in framing a solution to these historically racialised spectrum of diseases as essentially preventable. Sickle cell and thalassaemia are recessively inherited, potentially life-threatening haemoglobin disorders with significant variation of severity, often needing life-long treatment. I argue that the re-classification of inherited blood disorders (IBDs) under ‘prevention and management of birth defects’ by the WHO in 2010 can be read as an ethical moment within the ‘globalising turn’ of IBDs and the use of genomics in addressing structural inequalities underpinning health in low- and middle-income countries. Using an Indian case study, the paper aims at first examining the language of risk through which genes and IBDs are mapped onto pre-existing populations (e.g. caste and tribe) as discrete, categories. Second, it discusses the likely social and ethical ramifications of classifying these recessive gene disorders as essentially preventable, despite cheaply available diagnostic tests and treatment options available in most countries in the South.