Saviour siblings in India: A reminder of our existing challenges and biases.

Saviour babies or saviour siblings are conceived specifically to be sources of biological materials - ranging from cord blood, stem cells or even organs - to save another child, usually an older sibling, who is suffering from a disease like thalassemia that can be cured with this biological material. In 2020, the media reported about the birth of India's first saviour baby, in the state of Gujarat [1]. In January 2023, there was a report of the birth of another saviour baby, in the state of Maharashtra [2]. Ethical concerns relating to saviour siblings find a place in the western bioethics discourse. However, it is little discussed in the Indian context.

Power, policy, and transgender identities: A case study of gatekeeping by mental health professionals in accessing gender affirming surgeries in India.

BACKGROUND: Transgender individuals seeking gender-affirming surgeries (GAS) are often denied or delayed by mental health professionals (MHPs). Studies on the gatekeeping of GAS have been mainly conducted in the Global North and primarily focus on the perspectives of health professionals. This case study from India incorporates health professional, community, advocate, and activist perspectives to contribute new evidence about MHP gatekeeping in GAS. The study aims to examine the role of power and gender in MHP gatekeeping of GAS in India. METHODS: A qualitative multi-method case study including thematic analyses of key informant interviews (n = 9) and policy analysis using the policy triangle framework. RESULTS: Health professionals and transgender persons participate in the construction, performance, and reproduction of gender indicating the persistence of gender normativity in India which enables gatekeeping by MHPs. However, evidence suggests some signs of a change from binormativity to a culturally intelligible and historically familiar "trinormativity". CONCLUSION: To understand MHP gatekeeping, there is a need to contextualise this example of biopower within the larger social construction of gender within which MHPs operate. A transition from binormativity to "trinormativity" enables MHP gatekeeping of transgender persons seeking GAS. This risks creating new forms of gender-related oppression, such as new hierarchies and class differences between the gender binary and the "third gender".

COVID-19 Vaccine decision-making: trust among the transgender and disability communities in India.

BACKGROUND: Historical marginalisation and ongoing trust deficits in health and government systems shape present-day vaccine perceptions among marginalised communities. This paper sought to understand the role of trust in decision-making about COVID-19 vaccine uptake in the transgender and disability communities in India. METHODS: Using a participatory approach we interviewed 24 community representatives, identifying themselves as transgender individuals or as persons with disability, and 21 key informants such as vaccine programme managers, vaccine providers, and community advocates. We undertook an inductive thematic analysis of the data using a socio-ecological model. RESULTS: Fear of side effects in relation to specific needs of the two communities and mistrust of systems involved in vaccination shaped four different pathways for vaccine decision-making. Mistrust of systems was influenced by past negative experiences with the health system, creating contexts in which information and misinformation are shared and interpreted. Participants negotiated their doubts about safety and mistrust of systems by interacting with different sources of influence showing patterns of decision-making that are dynamic, context-dependent, and intersectional. CONCLUSION: These findings will help in determining the content, strategies and approaches to equitable vaccine communication for these two communities. The two communities ought to be included in vaccine trials. Vaccine information must respond to the specific needs of these two communities which could be enabled by collaboration and engagement with community members and influencers. Finally, long-term investment towards the needs of marginalised communities is vital to dismantle cycles of marginalisation and distrust and in turn improve vaccine acceptance and uptake.

Experiences of transgender persons in accessing routine healthcare services in India: Findings from a participatory qualitative study.

Despite having a higher burden of health problems, transgender persons face challenges in accessing healthcare in India. Most studies on healthcare access of transgender persons in India focus only on HIV related care, mental healthcare, gender affirmative services or on the ethno-cultural communities or transgender women. This study fills this gap by focusing on diverse gender identities within the transgender community with a specific focus on experiences in accessing general or routine healthcare services. A qualitative descriptive approach was used in this study. 23 in-depth interviews and 6 focus group discussions were conducted virtually and in-person with a total of 63 transgender persons in different regions of India between May and September 2021. The study used a community-based participatory research approach and was informed by the intersectionality approach. Thematic analysis was conducted to analyze the data. Four key themes emerged: (i) intersectional challenges in accessing healthcare start outside of the health system, continue through cisgender-binary-normative health systems that exclude transgender persons; and at the interface with individuals such as health professionals, support staff and bystanders; (ii) the experiences negatively impact transgender persons at an individual level; (iii) in response, transgender persons navigate these challenges across each of the levels: individual, health system level and from outside of the health system. This is a first of its kind qualitative participatory study focusing on routine healthcare services of transgender persons in India. The findings indicate the need to move conversations on trans-inclusion in healthcare from HIV and gender affirmative services to routine comprehensive healthcare services considering the higher burden of health problems in the community and the impact of poor access on their lives and well-being.

Impact of the COVID-19 pandemic on the mental health of transgender persons in India: Findings from an exploratory qualitative study.

Introduction: Transgender persons in India, who are one of the most vulnerable groups, were particularly impacted by the COVID-19 pandemic. Increased risk of COVID-19, challenges with continuing livelihood, uncertainty, and anxiety around the pandemic over pre-existing social discrimination and exclusion pose risk of a mental health impact as well. To investigate this further, this component of a larger study on experiences in healthcare of transgender persons in India during COVID-19 and looks into the question "How did the COVID-19 pandemic impact the mental health of transgender persons in India". Methods: 22 In-depth interviews (IDI) and 6 focus group discussions (FGD) were conducted virtually and in-person with persons self-identifying as transgender or belonging to ethnocultural transgender communities from different parts of India. Community based participatory research approach was used by ensuring representation from the community in the research team and through a series of consultative workshops. Purposive sampling with snowballing was used. The IDIs and FGDs were recorded, transcribed verbatim and analyzed using an inductive thematic analysis. Results: Mental health of transgender persons were affected in the following ways. Firstly, COVID-19, its associated fear and suffering combined with pre-existing inaccessibility of healthcare and reduced access to mental health care affected their mental health. Secondly, unique social support needs of transgender persons were disrupted by pandemic linked restrictions. Thirdly, pre-existing vulnerabilities such as precarious employment and underlying stigma were exacerbated. Finally, gender dysphoria was a key mediating factor in the impact of COVID-19 on mental health with a negative and positive impact. Conclusions: The study reiterates the need to make systemic changes to make mental healthcare and general healthcare services trans-inclusive while also recognizing the essential nature of gender affirmative services and the need to continue them even during emergencies and disaster situations. While this brings out how public health emergencies can exacerbate vulnerabilities, it also shows how the lived mental health experience of transgender person is intricately linked to the way work, travel and housing is structured in our society and therefore points to the structural nature of the linkage between mental health and gender.

A qualitative exploration of perceived needs and barriers of individuals with schizophrenia, caregivers and clinicians in using mental health applications in Madhya Pradesh, India.

Introduction: About 3.5 million people are living with schizophrenia in India, with most failing to receive minimally adequate care. Digital mental health applications could potentially decrease this treatment gap; however, these applications should be tailored to meet the needs and overcoming barriers of its end-users to ensure their adoption and sustained usage. Few studies in India have explored the perspectives of target stakeholders to understand how digital tools could be viable for supporting care. Therefore, this study explores the perceived needs and barriers of patients with schizophrenia, caregivers and clinicians in using digital mental health applications. Methods: Focus group discussions (FGDs) were conducted with patients having schizophrenia attending outpatient clinics at a government tertiary hospital, and their caregivers, and mental health clinicians in Bhopal, Madhya Pradesh, India. FGDs were audio-recorded and coded. Framework analysis was employed to guide the analysis, involving deductive and inductive generation of themes, data triangulation and comparison of perspectives between participant groups. Results: Six FGDs were conducted with individuals with schizophrenia (n â€‹= â€‹11), their caregivers (n â€‹= â€‹14), and mental health clinicians (n â€‹= â€‹19). Four a priori themes were established: a) Prior experiences with health applications; b) Content of a mental health application; c) Involvement of caregivers in mental health application usage and d) Supporting doctors' work through mental health applications. Additionally, two themes were generated inductively: a) Qualities of a mental health application and b) Data privacy and confidentiality. Conclusion: Exploration of stakeholder perspectives on the content, features, and uses of mental health applications is crucial to yield initial insights about the use of these digital programs in India. This study generated a multitude of suggestions on app functionality and components, which can guide ongoing efforts to develop and deliver digital mental health applications for patients living with schizophrenia in low-resource settings, with limited access to mental health services.

Cross cultural and global uses of a digital mental health app: results of focus groups with clinicians, patients and family members in India and the United States.

BACKGROUND: Despite significant advancements in healthcare technology, digital health solutions - especially those for serious mental illnesses - continue to fall short of their potential across both clinical practice and efficacy. The utility and impact of medicine, including digital medicine, hinges on relationships, trust, and engagement, particularly in the field of mental health. This paper details results from Phase 1 of a two-part study that seeks to engage people with schizophrenia, their family members, and clinicians in co-designing a digital mental health platform for use across different cultures and contexts in the United States and India. METHODS: Each site interviewed a mix of clinicians, patients, and their family members in focus groups (n = 20) of two to six participants. Open-ended questions and discussions inquired about their own smartphone use and, after a demonstration of the mindLAMP platform, specific feedback on the app's utility, design, and functionality. RESULTS: Our results based on thematic analysis indicate three common themes: increased use and interest in technology during coronavirus disease 2019 (COVID-19), concerns over how data are used and shared, and a desire for concurrent human interaction to support app engagement. CONCLUSION: People with schizophrenia, their family members, and clinicians are open to integrating technology into treatment to better understand their condition and help inform treatment. However, app engagement is dependent on technology that is complementary - not substitutive - of therapeutic care from a clinician.