Thesis (Ph. D.)--Open University. BLDSC no. DXN075761.

The AIMS of this study are to: (1) To explore how South Asian women (those who have ethnic origins in India, Pakistan or Bangladesh) make sense of the beta-thalassaemia trait in the context of their everyday experiences and, in turn, how these experiences impact their identities. (2) To ascertain the extent of the assimilation and management of genetic information by women of South Asian origin. (3) To contribute towards the debate on the provision of culturally sensitive screening policies and the dissemination of genetic information and to analyse ways in which such policies can be improved. STUDY DESIGN: A qualitative modified grounded theory study comprising of semi-structured interviews conducted in English, Urdu, Punjabi, Sylheti and Hindi. Five geographical sites were selected for the study: three in London, one in the West Midlands and a further site in Northern England based on their high density of South Asian populations as indicated by the 1991 UK Census data. Purposive sampling ensured diversity in participant backgrounds (e.g. socio-economic, religion, marital, child’s health and age). Interviews were translated and transcribed by the researcher and the computer software NVivo was used to analyse the data. SAMPLE: Forty-one South Asian women who had been diagnosed with the beta-thalassaemia trait and two haemoglobinopathy nurse specialists who undertook the role of counselling. FINDINGS: The empirical findings revealed the importance of identity, faith, culture and diversity in how women managed the knowledge of the beta thalassaemia trait. Common perceptions held by health service staff of South Asian women being homogenous in attitudes to prenatal diagnosis and termination; as subjugated to their husbands in decision-making; and as fatalistic because of their religious convictions were shown by this study to be misconceived. South Asian women actively managed their trait within the context of their everyday socio-cultural and religious experiences. For example, liberal notions of ‘informed choice’ were found not to take account of the institutional importance of motherhood for South Asian women living in the UK. Their experience of beta-thalassaemia trait was also mediated through relations of power, both within kinship networks and between family and health professionals. In making sense of the genetic identities accorded to them by health professionals, they also re-interpreted, negotiated and contested the ethos of the screening and prenatal testing processes. The participants used power and positionality to relocate their sense of genetic responsibility away from the self onto others, employing geographical and cultural explanations to justify their apparent inaction in the face of biomedical expectations and assumptions. CONCLUSION: Women acted according to their perceptions of how others would perceive them if their trait were to be disclosed and as a result they presented and constructed the trait in order to preserve the ‘self’ within the context of their everyday life experiences which has implications for the delivery of appropriately targeted screening and health services.

Thesis (M.A.)--University of Western Australia, 2005.

Yes

This study is an investigation of embodiment. It is informed by the experiences and understandings of health, healing, violence and oppression among 15 young South Asian women living in Toronto, Canada. Their articulation of the importance of, and difficulties associated with, health and healing in contexts of social inequity contribute to understandings of embodiment as co-constituted by sentient and social experience. In my reading of their contributions, embodied learning – that is, an ongoing attunement to sentient-social embodiment – is a counter hegemonic healing strategy that they use. Their experiences and insights support the increasingly accepted claim that social inequity is a primary determinant of health that disproportionately disadvantages subordinated people. Furthermore, participants affirm that recovery and resistance to violence and oppression and its consequences must address sentient-social components of embodiment simultaneously. In this study, Yoga teachings provide a framework and practice to investigate embodiment and embodied learning. Following 12 Yoga workshops addressing health, healing, violence and oppression, I conducted individual interviews with 15 workshop participants, 3 Yoga teachers and 2 counsellor / social workers. Participants discuss Yoga as a resource for addressing mental, physical, emotional and spiritual consequences of violence and oppression. They resist New Age interpretations of Yoga in terms of individualism and cultural appropriation; they also challenge both New Age and Western biomedicine for a lack of attention to the consequences of social inequity for health and healing. This study considers embodied learning as an important healing resource and form of resistance to violence and oppression. Scholarship addressing embodiment in sociology, health research, anti-racism, feminism, anti-colonialism, decolonization and Indigenous knowledges are drawn upon to contextualize the interviews. This study offers insights relevant to health promotion and adult education discourse and policy through a careful consideration of the embodied strategies used by the participants in their nuanced negotiations of social inequity and pursuits of health and healing.

This research study seeks to better understand the experience of South Asian immigrant women in the Neonatal Intensive Care Unit (NICU). The information gathered cannot be generalized to all South Asian and other immigrant populations nor is it the intent of this study. Instead, by examining the individual NICU experiences and challenges faced during this experience, themes emerge that can prompt neonatal nurses to examine their own practice with immigrant families. The main, overall theme identified in all participant responses was, Fear of the Unknown. Three subthemes that emerged from discussions regarding how participants experience nursing care were Trust, Teaching and Advocating. In terms of what participants identified as their most critical concerns while their infant was in the NICU, the three subthemes that arose were Language Barriers, Lack of Knowledge about the NICU and A More Comfortable NICU. On a broader scale, it is hoped that this research study will inspire all nurses to examine their interactions with all immigrant families in order to provide care that is holistic and individualized to the needs of their immigrant patient. / Graduate

This study is an investigation of embodiment. It is informed by the experiences and understandings of health, healing, violence and oppression among 15 young South Asian women living in Toronto, Canada. Their articulation of the importance of, and difficulties associated with, health and healing in contexts of social inequity contribute to understandings of embodiment as co-constituted by sentient and social experience. In my reading of their contributions, embodied learning – that is, an ongoing attunement to sentient-social embodiment – is a counter hegemonic healing strategy that they use. Their experiences and insights support the increasingly accepted claim that social inequity is a primary determinant of health that disproportionately disadvantages subordinated people. Furthermore, participants affirm that recovery and resistance to violence and oppression and its consequences must address sentient-social components of embodiment simultaneously. In this study, Yoga teachings provide a framework and practice to investigate embodiment and embodied learning. Following 12 Yoga workshops addressing health, healing, violence and oppression, I conducted individual interviews with 15 workshop participants, 3 Yoga teachers and 2 counsellor / social workers. Participants discuss Yoga as a resource for addressing mental, physical, emotional and spiritual consequences of violence and oppression. They resist New Age interpretations of Yoga in terms of individualism and cultural appropriation; they also challenge both New Age and Western biomedicine for a lack of attention to the consequences of social inequity for health and healing. This study considers embodied learning as an important healing resource and form of resistance to violence and oppression. Scholarship addressing embodiment in sociology, health research, anti-racism, feminism, anti-colonialism, decolonization and Indigenous knowledges are drawn upon to contextualize the interviews. This study offers insights relevant to health promotion and adult education discourse and policy through a careful consideration of the embodied strategies used by the participants in their nuanced negotiations of social inequity and pursuits of health and healing.

Research has shown that a high number of South Asian people suffer with mental health problems and that South Asian women specifically, are at high risk of attempting self -harm or suicide. However, there seems to be a low uptake of the mainstream services offered by the South Asian community as a whole, compared to their white counterparts. Furthermore, the existing literature in this area is scarce and focuses on identifying barriers that South Asian women face in accessing help. This mixed methods study explored the mental health help seeking experiences of British born South Asian women. For the first part of the study, six (N=six) women who had successfully accessed therapy were interviewed and the qualitative data was analysed using Braun and Clarke’s (2006) framework for thematic analysis. The main superordinate themes identified included: therapy as a positive experience, perseverance and persistence, need to know basis, fears about being judged, the need for more publicising and awareness, recovery as an ongoing process, medical professionals needing to be more proactive, developing autonomy and putting your own needs first, developing understanding and the importance of the first step. Various subordinate themes were identified for some of these main superordinate themes. The second part of this study involved delivering a psycho educational workshop (which was partly based on the qualitative data generated in the first part of the study) to a group of South Asian women (N=25). Their attitude towards help seeking was measured before, immediately after and four weeks after the workshop using Fischer and Farina’s (1995) Attitudes toward Seeking Professional Psychological Help Scale. An ANOVA Test indicated a statistically significant difference in attitudes to help seeking before, immediately after and four weeks after the workshop. This study helped to get a better understanding of the experiences of a marginalised group and demonstrated how such information can be used to develop new and innovative interventions that can be used with a client group that appear to have low levels of engagement with and referral to mental health services.

This thesis builds on the findings of my previous study, which established that queer South Asian women (QSAW) feel invisibilized in Toronto’s LGBTQ+ community (see Patel, 2019). The present study critically investigates the operation and cultural reproduction of power in organizational practices that invisibilize QSAW within Pride Toronto™, as a means of diagnosing the problem in mainstream LGBTQ+ organizations more broadly. The following research question is explored: How do the cultural underpinnings of Pride Toronto™ contribute to the invisibilization of queer South Asian women in the broader LGBTQ+ community? This critical ethnography substantiates the invisibilization of QSAW in the LGBTQ+ community as an institutionalized form of identity-based violence. This study rejects the argument that invisibility is exclusively felt by QSAW. Instead, this thesis demonstrates that QSAW are invisibilized by the willful negligence of dominant actors in knowledge practices, as well as assimilationist politics that mandate outness, which invalidate and exclude QSAW. This study further finds that QSAW remain invisibilized in the broader LGBTQ+ community as a result of Pride organizations branding as diverse and inclusive, while simultaneously advancing colonial knowledge about queer identities and ideologies that re-write the narratives of QSAW in mainstream LGBTQ+ discourse.

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