Social Phobia, Hospital Phobia and Hospital Anxiety among Transgender Individuals at a Community Centre in Chennai, South India: A Mixed Method Study

1. Associate Professor, Department of Physiology, Dhanalakshmi Srinivasan Medical College and Hospital, Siruvachur, Perambalur, Tamil Nadu, India. 2. Assistant Professor, Department of Physiology, Dhanalakshmi Srinivasan Medical College and Hospital, Siruvachur, Perambalur, Tamil Nadu, India. 3. Associate Professor, Department of Physiology, ACS Medical College and Hospital, Chennai, Tamil Nadu, India.

Abstract

Introduction: Stigma and discrimination within the healthcare sector in general may impact transgender people’s desire and ability to access appropriate medical treatment. The transgender community have specific healthcare needs which may go untreated leading to increased disease burden in the community. In India there is a gap in understanding the factors affecting utilisation of health services by transgender community.

Aim: To determine the factors affecting presence of social, hospital phobia and anxiety among transgender individuals at a Transgender Community Centre in south India, and to understand the perspective of the community members on using healthcare services.

Materials and Methods: The present quantitative component embedded within a qualitative study was conducted in the Department of Physiology, Dhanalakshmi Srinivasan Medical College and Hospital (DSMCH) (Community Centre), Siruvachur, Perambalur, Tamil Nadu, India for two days, during the month of August 2022 among 24 transgender adults. Semi-structured in-depth interviews were conducted with the group for the qualitative part of the study during two consecutive days in August 2022, and quantitative part was analysed within the same group using three questionnaires for social phobia, hospital phobia and hospital anxiety. Age-wise and gender-wise distribution of scores in social phobia, hospital phobia and hospital anxiety were analysed using Mann-Whitney U tests as the data was not normally distributed.

Results: Out of the 24 participants, 20 (83.33%) were in the age-group of 18-35 years and 18 (75%) identified themselves as transfemales. Qualitative analysis of semi-structured interview found prevalence of gender-based discrimination and mistreatment at hospitals faced by transgender individuals leading to fear of hospitals. Out of 24, nine participants had hospital-related anxiety score more than four out of nine. Social phobia score out of 36 was given and the highest score was 27, with a mean score of 11.416±8.445. Hospital phobia score out of 32 was given and mean score was 13±6.041.

Conclusion: Transgender individuals feel hesitant to approach hospitals due to the discrimination they have faced and continue to face at hospitals. There is a need to make the hospitals a more inclusive space for them.

Discrimination, Healthcare access, Hospital stigma, Medical treatment, Transfemale

Lesbian, Gay, Bisexual, Transgender, Queer,+ is the short form for LGBTQ+ community (1). Transgender people are a group for whom, their gender identity differs from their sex assigned at birth. The transgender population is diverse and consists of transgender women (assigned male at birth who identify as female), and transgender men (assigned female at birth who identify as male). Available data suggest that transgender people are at significantly higher risk for several negative health corollaries in comparison with cisgender people (2). Even with recent advancements in this field, the issue of discrimination towards gender and sexual minorities remains high globally (3).

The situation in India is not much different either (4). Due to societal and family struggles from lack of acceptance individuals of LGBTQ+community are facing a large amount of stress and anxiety in their day-to-day life. Studies conducted globally have shown that the prevalence of mental health issues, such as anxiety, depression, suicidal tendencies and substance use, are very high among the LGBTQ+community (5),(6),(7). The discrimination faced by the LGBTQ+community can be responsible for mental health issues faced by them. Health-related inequalities are found in high frequency among transgender community. The various accounts of transgender community signifies to their experience of stigma and discrimination within the healthcare apparatus (8).

Transgender patients report that the lack of providers with expertise in transgender medicine represents the single largest component inhibiting access (9). Studies show that compared to the cisgender population, the transgender people combat health inequality in Human Immunodeficiency Virus (HIV), mental health issues, and substance use treatments (10),(11),(12). A national study conducted in New Zealand on the health and well-being in the transgender population found that more than one third of the study participants from the transgender community avoided visiting a clinician/healthcare provider due to disrespect or mistreatment apprehensions (13). In the transgender community, hospital phobia is linked to their victimisation. The same prejudices and discrimination from the society is also shown by hospital staff toward transgender patients, making them scared of going to hospitals even in serious health issues (14).

These factors usually lead to transgender individuals being reluctant to take medical help, as required. There is a need to understand the level of hospital phobia and social phobia in life of transgender individuals in India, in order to address the issue and find tangible solutions (15),(16),(17). Hence, the present study was conducted to understand the factors affecting social and hospital phobia among the transgender individuals attending a community centre in South India and also to understand the perspective of the community members on using healthcare services available to them using in-depth interviews along with quantitative scoring done with help of questionnaires to understand the degree of the problem.

Material and Methods

The present quantitative component embedded within a qualitative study was conducted in the Department of Physiology, Dhanalakshmi Srinivasan Medical College and Hospital (Community Centre), Siruvachur, Perambalur, Tamil Nadu, India, for two days, during the month of August 2022 at the community centre in Chennai, Tamil Nadu, India. The study was commenced after obtaining ethical clearance from Institutional Ethics Committee, DSMCH, Perambalur (IECHS/IRCHS/no.163) and was conducted according to the guidelines of Helsinki Declaration after obtaining informed consent from all participants. Volunteers were recruited based on convenient sampling from the community centre. After explaining the study 24 individuals consented to participate in the study.

Inclusion criteria: Participants aged between 18 years and 80 years, who self-identificated as member of transgender community were included in the study.

Exclusion criteria: Participants, aged <18 years and unwilling to give consent to participate were excluded from the study.

Study Procedure

The qualitative part of the study was done using in-depth interviews based on semi-structured questionnaire framed by the investigators by reviewing the literature, and by taking input from Non Governmental Organisations (NGOs) and community members [16,17]. Semi-structured interview included open-ended questions to which the participant response was recorded and key phrases were analysed. The responses were recorded in audio format as well as simultaneous note taken by the investigators. Investigator notes were used to assess data saturation from the interview themes. Reliability testing was not done as the question were open-ended and results could not be scored. Themes and questions used in semi-structured interview is provided in (Table/Fig 1).

The quantitative part of the study consisted of questionnaire, framed based on previous studies on hospital phobia and was used to conduct structured interviews with the participants (18),(19),(20),(21). The questionnaire consisted of three areas: social phobia, hospital phobia and hospital anxiety. It consisted of nine questions in social phobia scores, eight questions in hospital phobia scores and eight questions in hospital anxiety scores. Social and hospital phobia was assessed on a Likert scale of 5 (0-not at all to 4- extremely) and hospital anxiety was assessed in Yes/No (No-0 and Yes-1) format. Questionnaire reliability could not be checked using statistical analysis due to low sample size. However, the questions were validated by experts peer review and review by NGOs and community members. The answers were recorded in Microsoft excel sheet in the computers used by investigators. The interviews were recorded after obtaining informed consent from all participants and the responses were used to analyse keywords for the purposes of the study. The structured interview used statements to which the participant could respond using Likert scale and the total scores were analysed. Less than 25% of the total scores were considered as minimally present, 25-50% scores were considered as moderately present and more than 50% were considered as severe for all three questionnaires, based on the data obtained.

Statistical Analysis

Data were statistically analysed using Microsoft excel and GraphPad Prism 7 software. Age-wise and gender-wise distribution of scores in social phobia, hospital phobia and hospital anxiety were analysed using Mann-Whitney U tests as the data was not normally distributed. Analysis of keywords in the semi-structured interview was done by analysing the interviews for keywords by all the investigators separately and then finalising the keywords and phrases in a consensus meeting. The appearance of keywords was used to analyse patterns and frame results.

Results

Total 24 transgender individuals participated in the study, of which 18 (75%) were transfemale, three were transmale and three were trans-non binary. The majority (n=12, 50%) of participants were in 18-25 years of age, followed by 8 (33.3%) aged between 26-35 years (Table/Fig 2).

In the present study, the mean scores were spread over a wide range with relatively lower scores for social phobia compared to hospital phobia and hospital anxiety (Table/Fig 3).

The mean scores were compared among different age groups and was found statistically non significant. Social phobia was found to be higher in the younger age group, hospital phobia and hospital anxiety scores were found to be higher in the older age groups. No significant difference was found in gender-wise distribution of social phobia, hospital phobia and hospital anxiety scores as the number of participants were limited in transmale and trans-non binary categories (Table/Fig 4). Qualitative study was done using open-ended questions framed by the investigators and the participant responses were recorded. Based on the responses the frequency of repeating keywords and themes were found as represented in (Table/Fig 5).

The open-ended interview questions have revealed a few recurring patterns to the experience of transgender individuals in a hospital. The authors found that 11 out of 24 participants resort to self-medication sometimes. Of the 24 participants, five feel unsafe in all types of hospitals, while seven feel comfortable in all types of hospitals. Majority of participants recounted experiences of emotional or physical harm at a hospital. A total of 14 of 24 participants have faced verbal assault in the form of use of unsavoury language and calling derogatory names to transgender individuals. of the 24 participants, five have faced physical abuse from hospital staff and six participants have faced sexual assaults in a hospital setting.

Ten of the 24 participants recollected having been discriminated against by doctors themselves at a healthcare setting because of their gender. Nine participants have faced discriminatory behaviour from nursing staff and four have recollected stories of harassment by fellow patients in wards. In the present study, seven participants have faced depression and 9 of 24 participants reported thoughts of self-harm as a direct consequence of their experiences in a healthcare setting. Seven participants felt they could not reveal the history of mental health issues or sexual assault to their healthcare providers for fear of discrimination. Fifteen participants felt they would reveal sensitive personal history such as substance use, mental health issue or sexual assault as they considered it best to inform their providers of all the facts irrespective of their fear of discrimination.

A participant (transfemale of age group 36-45 years) stated that “It is important for doctors to know exactly what happened. Otherwise how can they give correct treatment. I would tell them everything”. A participant (transfemale 26-35-year-old) said “If I don’t tell them (doctors) about smoking or drinking they might give some medicine that smokers or alcoholics are not meant to take. That would be risky”. A participant (transmale, 18-25-year-old) said “if the doctor says the sickness could be related to some substance use or some mental health issues then we have to tell them everything”. While, a participant (transfemale 18-25-year-old) said “If I tell them (hospital staff) that I drink sometimes or there was some sexual assault by a partner they think I am a bad person and they might scold me or send me out”.

Discussion

The present study found that transgender community faces a variety of discriminatory and abusive experiences at the hospitals in South India. The participants mostly constituted younger age group (18-35 years) transfemale population and because of that there was no significant differences found in age-wise or gender-wise analysis of the scores from questionnaires used in the quantitative part of the study. There is a trend of self-medication among the community members rising from the discomfort in visiting hospitals. Similar studies have also found an increasing number of transgender individuals being averse to approaching healthcare settings for care (3),(16).

The present study also found that majority of the participants have faced some form of discrimination at the hospital, which was mostly from the hospital staff and sometimes from the fellow patients, which is also similar to findings from other studies around the globe. The 2015 US survey of the transgender community found that 33% faced gender-based discrimination while attending a healthcare facility (22). In India, previous studies have found that similar barriers are faced by transmen trying to access healthcare settings (23). The present study also found high rate of abuse and harm faced by the transgender community members at hospitals ranging from verbal, physical to sexual abuse. A lot of the mistreatment faced by the transgender community is found to stem from the ignorance of healthcare professionals (24). Multiple studies have found that discrimination and harassment at hospitals have kept transgender individuals from receiving necessary healthcare services on time (25),(26),(27). It has been previously found that there is a general perception of uncertainty among healthcare providers, when it comes to the care of transgender individuals which in turn is mirrored in the attitude of transgender patients in approaching healthcare providers (28).

All of such findings point to the fact that there is a clear need for improved accessibility of healthcare services to transgender individuals in India. The need for healthcare access is even more pronounced in transgender individuals undergoing gender-affirming care. They are in need of continuous medical care and supervision throughout the transitioning process and require regular follow-ups, not to mention the need for ongoing psychological support (29). When they are faced with mistreatment in such conditions it discourages the transgender patients from continuing their transitioning process, or much worse end up in the hands of un-qualified individuals (30).

The older individuals of the community centre seemed more optimistic about the situation rather than the younger generation of transgender individuals. This could be because of rules being framed for justice towards the LGBTQ+community and the general increase in awareness among the public due to social media and mass media over the years. They feel that some of the government and private initiatives to assist in gender affirmative therapy in the select few institutes across the country itself is a huge improvement over what existed a decade or two ago. They also were happy with one odd hospital which had transgender wards in the hospital for gender assignment treatments which helped them escape the harassment faced in general wards.

Older community members are hopeful of the changes that are already happening in the healthcare services with few hospitals offering gender affirming care. Recent legislations and policy changes have made a positive impact in delivering care to transgender community (31). The present study was limited to transgender population residing in an urban area with plenty of options for healthcare services. The results may vary in a rural area with limited availability of healthcare and less number of hospitals specialised in transgender healthcare. Rural areas typically have higher chances of discrimination and hence more hesitancy to access health services (32).

Even though it is common in India for the general public as well to resort to self-medication in mild illness about 45% of the interviewed transgender individuals feel that self-medication is easier than approaching a healthcare setting for any illness. There is a clear preference for private hospitals compared to government run hospitals, where the participants feel lack of privacy and rude behaviour of the staff. This has also been stated as a reason for the preference for private hospitals, where they can avail of private rooms than be accommodated in a ward with other patients where there is risk of mistreatment. Even though some of them may resort to self-medication occasionally overall the interviewed population seemed aware of the harms of not visiting a healthcare professional in time. They had all stated that inspite of their worst experiences at hospitals they would still look for a safe hospital to go to in case of a health necessity. This could also be specific to the group that was interviewed who were at the community centre in a major city, where a lot of social and healthcare workers were in contact with the transgender community, leading to better awareness than their counterparts in smaller towns or villages. Issues of self-medication and preference for hospitals with private wards concur with the experience of discrimination from hospital staff as well as fellow patients and needs to be addressed in a policy level. Similar findings are seen in study done by Arora L et al., and suggest that inclusive policies and training at a hospital level can tackle the problem (33).

There is a growing need to create safe spaces in government and private hospitals for transgender individuals in India. The few places already offering gender affirming care and transgender-friendly clinics are situated in big cities and population centres which may be inaccessible to many of the transgender individuals in villages or smaller towns. Making a queer-friendly primary healthcare system that can be accessed by transgender individuals at all towns and areas where transgender community members reside needs to be a long-term goal in order to improve the standard of life and healthcare access to them.

Limitation(s)

The present study was conducted as a qualitative interview-based study with a quantitative component embedded in it. A focused quantitative study could better predict the incidence and prevalence of hospital phobia among transgender community. Sample size for the study was 24, which is too low to predict significant statistical outcomes from the quantitative part of the study. The reliability and validity of the social phobia, hospital phobia and hospital anxiety scores could not be measured accurately due to the low sample size. The study participants were all recruited from the same community centre at a city in South India, which may not be representative of the transgender population from other smaller urban or rural settings.

Conclusion

The transgender community feels hesitant to approach hospitals owing to the variety of challenges they face at the hands of hospital staff and fellow patients. When appropriate measures are taken to create transgender-friendly spaces, there is increased interest in accessing healthcare. This clarifies the need for creating more safe spaces and gender-friendly clinics to make sure that the transgender community receives the medical services they deserve. A study should be conducted among the rural transgender population with large sample size, which may yield different results and could help in developing targeted policies. Continued experience of harassment and discrimination in public spheres and healthcare settings has a negative impact on the mental health of the transgender community, further exacerbating the need for safe spaces for positive coping. Healthcare providers need training and awareness to reduce the stigma faced by the transgender community in their care.

Acknowledgement

The authors acknowledge all the members of Thozhi Community Centre, Chennai, India who enthusiastically participated in the study.

DOI and Others

DOI: 10.7860/JCDR/2023/64686.18206

Date of Submission: Apr 13, 2023
Date of Peer Review: Apr 27, 2023
Date of Acceptance: Jun 17, 2023
Date of Publishing: Jul 01, 2023

AUTHOR DECLARATION:
• Financial or Other Competing Interests: None
• Was Ethics Committee Approval obtained for this study? Yes
• Was informed consent obtained from the subjects involved in the study? Yes
• For any images presented appropriate consent has been obtained from the subjects. NA

PLAGIARISM CHECKING METHODS:
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ETYMOLOGY: Author Origin

EMENDATIONS: 8