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Needs and concerns of transgender individuals regarding interdisciplinary transgender healthcare: A non-clinical online survey.

ABSTRACT: This study investigates the needs and concerns transgender (short: trans) individuals have concerning trans healthcare (THC) in interdisciplinary THC centres. Trans individuals' gender does not (fully/constantly) match their sex assigned at birth. To be able to live in their gender role and to prevent or minimise gender dysphoria, they might require a multidisciplinary set of transition related healthcare services. The current shift from the traditionally highly regulated, hierarchical and pathologising approach to THC towards a more patient-centred approach has highlighted the importance of trans patients' satisfaction with treatment processes and results. As the still influential regulations have a negative effect on patient satisfaction, and might also keep trans individuals from seeking transition related treatment, it is crucial to investigate what trans individuals, whether patients or not, need and fear regarding transition related healthcare. Against the backdrop of mixed reactions received from the local trans community regarding the foundation of the Interdisciplinary Transgender Healthcare Centre Hamburg (ITHCCH), Germany, this study seeks to determine what trans individuals need with respect to THC in order to guarantee for high quality service provision at the ITHCCH. To this end, an online questionnaire was developed. The researchers employed a participatory approach to questionnaire development by involving a working group consisting of local trans support group representatives and (THC) specialists (N = 4). The sample consisted of N = 415 trans-identified individuals aged between 16 and 76. Most of them were based in Germany. 85.2% (n = 382) reported experience with transition related healthcare and 72.5% (n = 301) had (additional) treatments planned. Analysis revealed a need for communication and feedback opportunities. Furthermore, during the treatment process, addressing individual needs was considered crucial by participants. They agreed moderately with concerns towards THC centres. 96.5% of participants would like high decision-making power concerning treatment-associated decisions. The results demonstrate the importance of patient-centred THC that takes patients' individual needs and realities into consideration and involves patients in decision-making processes.

SUBMITTER: Eyssel J

PROVIDER: S-EPMC5573291 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Needs and concerns of transgender individuals regarding interdisciplinary transgender healthcare: A non-clinical online survey.

Eyssel Jana J Koehler Andreas A Dekker Arne A Sehner Susanne S Nieder Timo O TO

PloS one 20170828 8

This study investigates the needs and concerns transgender (short: trans) individuals have concerning trans healthcare (THC) in interdisciplinary THC centres. Trans individuals' gender does not (fully/constantly) match their sex assigned at birth. To be able to live in their gender role and to prevent or minimise gender dysphoria, they might require a multidisciplinary set of transition related healthcare services. The current shift from the traditionally highly regulated, hierarchical and patho ...[more]

PMID: 28846715

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Project description:BackgroundOnline resources constitute a new and effective way to obtain support or information during bereavement processes. However, little is known about the needs, use and expectations of people bereaved by suicide regarding online resources.MethodThe objective of our national cross-sectional online survey was to collect the use, needs and expectations of people bereaved by suicide regarding online resources. The data were collected from July to October 2021 through a 26-item online questionnaire hosted on the website LimeSurvey.ResultsA total of 401 respondents fully completed the questionnaire. Their mean age was 45.7. The majority of participants were women bereaved by the suicide of their child or partner. Half of the participants were bereaved for less than 3 years and benefited from counselling during their bereavement process. Three-quarters of the participants used the Internet for their bereavement process, mainly to obtain information on suicide bereavement and suicide prevention and to access testimonies of other people bereaved by suicide. Three-quarters of the participants found that available online resources for people bereaved by suicide are insufficient and expected a dedicated web platform to be developed. Finding information on suicide bereavement and on suicide prevention, discussing with a mental health professional and accessing testimonies of other people bereaved by suicide were expected by a majority of the participants regarding the future platform. Receiving counselling and being bereaved by the death of a child were the most important factors in explaining patterns of use and expectations regarding online resources.DiscussionOur results offer precise insights into the needs, use and expectations of people bereaved by suicide regarding online resources. The development of web platforms offering access to reliable information on suicide bereavement and on suicide prevention to peers bereaved by suicide and help to seek counselling are urgently needed.

Project description:BackgroundPolycystic Kidney Disease (PKD) is a hereditary disorder that has no cure and can result in end stage kidney failure. Searching for health information online and via social media is a common phenomenon in many medical conditions. However, no recent studies have documented the information needs, online behaviours, and concerns of people with PKD. The aim of this study was to explore the information needs of individuals with PKD and their carers by documenting (i) the information needs (ii) online information health seeking behaviours (iii) the perceived challenges of living with PKD and (iv) dietary concerns.MethodsA 17-item survey was constructed by undertaking a social listening analysis. This survey was then distributed via PKD related social media groups on Facebook. Seven groups distributed the survey with permission from the group owners. Open free text survey questions were analysed thematically using content analysis.ResultsA total of 536 respondents completed the online survey (70.9 % female, 77 % aged 35-70, 70.2 % diagnosed more than 10 years ago). The major information need expressed by participants with PKD was for dietary information. Information regarding medications, medical management and symptom control were also desired. The overarching themes arising from the free text responses to the major challenge of living with PKD included 'learning to navigate dietary ambiguities'; 'managing social, psychological and emotional needs'; and 'accepting an uncertain future'. In addition to a strong desire for practical and specific dietary information, participants expressed a need for more online information pertaining to management of fatigue, pain, complications and how to manage mental health. Online peer support was also highly regarded and desired.ConclusionsThis study provides contemporary insights into the type of information desired by people with PKD. The results indicated that there was a strong desire for unambiguous information and guidance from health professionals to facilitate self-management, alleviate concerns, and address the complexities of living with Polycystic Kidney Disease. While diet is an important and frequently expressed need, there also remains a large demand for information on how to support psychological needs, and on medical management in order to support treatment decision making. Future work is required to develop specific, actionable and evidence-based resources for patients that are available online and through health professionals. Increased access to renal dietitians, peer support and additional training for health professionals could also improve patient-centered care and support self-management.

Project description:BackgroundFamily caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice.MethodsBetween January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs.ResultsAround three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP's knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs' efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs.ConclusionsWe recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

Project description:Background: Electronic cigarettes (e-cigarettes) are battery-powered devices that deliver aerosolized nicotine. With easy access and over-the-counter availability, many patients consider using electronic cigarettes for smoking cessation. Few studies have looked at long-term safety/efficacy and physician knowledge/attitudes toward e-cigarettes. Physicians have insufficient guidelines for advising their patients about e-cigarettes. Objective: 1) To identify knowledge and attitude of health care practitioners toward electronic cigarettes. 2) To identify the effect of level of training, experience and speciality on knowledge and practice of electronic cigarettes. 3) To identify factors influencing electronic cigarettes advise/prescribing practice. Methods: An anonymous online questionnaire was sent to residents, fellows, and faculty in pre-selected specialties at Saint Louis University (SLU) Hospital. Results: We received 115 responses. Nine percent reported being 'very familiar' with e-cigarettes, while 25% reported no familiarity; 18% of physicians would advise e-cigarettes as nicotine-replacement therapy if asked by patients; 91% were aware of the nicotine content of e-cigarettes, but only 20% and 39%, respectively, were aware of the presence of carcinogens and polyethylene glycol. Only 63% of respondents knew what 'vape' meant. Lack of evidence regarding long-term safety (76%), e-cigarettes as starter products for nonsmokers (50%), absence of Food and Drug Administration (FDA) regulations (51%) and marketing to youth (42%) were major concerns. Stricter regulations (54%), warning labels similar to tobacco products (53%), restricting advertising (36%), banning sales to minors (34%), and banning use in public spaces (25%) were favored as regulatory measures. More than 50% of physicians see a role for e-cigarettes as part of 'harm-reduction strategy'. Conclusions: Further research is needed to assess whether e- cigarettes could be an effective smoking-cessation tool. There is an apparent knowledge deficit among physicians and an urgent need for evidence-based guidelines to aid with advising patients enquiring about e-cigarettes.

Project description:BackgroundAlthough discriminatory experiences of transgender people seeking healthcare services have been well-documented in several studies, differentiating those experiences based on gender identity/expression and related factors has been limited. The aim of this study was to compare the characteristics, experiences, attitude, and expectation toward accessing healthcare service and healthcare providers of transgender women and transgender men in Thailand.MethodsA cross-sectional study was conducted from October 2017 to March 2018. The data were collected from transgender women and transgender men aged ≥ 18 years old who lived in Thailand using online platform via different websites and Facebook pages of local transgender group. Binary logistic regression was used to identify the factors related to the study outcomes.ResultsOf 186 transgender people who responded to the questionnaire and were eligible for the study, 73.7% (95% confidence interval [CI] = 66.7-79.8) were transgender women and 26.3% (95% CI = 20.2-33.3) were transgender men. Transgender women were more likely to seek general healthcare from non-traditional healthcare services (crude odds ratio [cOR] = 4.28; 95% CI = 1.55-11.81; P = 0.005), buy hormone treatment from non-traditional healthcare services (cOR = 3.89; 95% CI = 1.18-12.83; P = 0.026), and receive healthcare counseling from non-traditional healthcare providers (cOR = 5.16; 95% CI = 1.42-18.75; P = 0.013) than transgender men. According to the results of applying a multivariable model, transgender respondents who did not know that gender-affirming healthcare services existed in Thailand were more unwilling to receive counseling from gender-affirming healthcare providers than those who did (adjusted odds ratio = 3.70; 95% CI = 1.11-12.36; P = 0.033).ConclusionsThe findings from this cross-sectional study indicate that transgender women are more likely than transgender men to receive general healthcare and hormone treatment from non-traditional healthcare services and buy hormone treatment without a physician's supervision. We also found approximately 15% of transgender individuals who did not receive gender-affirming counseling services. Continuing to improve access to care for the transgender community, increasing public relations channels may encourage transgender people to access more healthcare services.

Project description:Aim Increasingly at GP practices, patients appear who are extremely worried as a result of health information researched online and consequently affected by doubts and concerns. The study highlights GP attitudes and experiences with regard to this patient group. Moreover, it identifies strategies adopted by GPs to respond appropriately to worried or scared patients. Subject and methods In the German federal states of Baden-Württemberg, Rhineland-Palatinate and Saarland, 2532 GPs were surveyed between June and August 2022. Owing to the explorative nature of the study, a descriptive analysis was conducted. Results Of the total respondents, 77% deemed the current problem of internet-related health concerns to be a major challenge in everyday practice. The implications affect patients’ mental stability and expectations towards the doctor (esp. demand for further instrumental diagnosis, 83%). One doctor in five (20%) has experienced the termination of patient contact because the relationship with the patient was no longer possible due to the patient’s uncontrolled online information behaviour. To respond to worried or scared patients, the respondents generally ask certain patient groups about online research (39%) and take this into account in the doctor–patient discussion (23%). Furthermore, the respondents use a detailed explanation of the diagnosis and/or treatment (65%) and recommend websites that they consider reputable (66%). Some of the doctors prefer a joint examination of the information researched by the patient (55%) as well as to explain the benefits and risks of online research (43%). Conclusion Many GPs demonstrate a high level of awareness and sensitivity with regard to extensive online research and potentially worried patients. It seems advisable to actively address the online search for information in the patient consultation to prevent possible negative effects on the doctor–patient relationship and to actively involve the patient. In this respect, it would also be worth considering expanding the medical history to include the dimension of online searching. Supplementary Information The online version contains supplementary material available at 10.1007/s10389-023-01909-1.

Project description:BackgroundTransgender individuals experience limited access to healthcare. This results not least from experiences of discrimination to which they are exposed in the health system. These contribute to transgender individuals having poorer health than cis individuals, i.e. individuals whose sex assigned at birth is in line with their gender identity. It is an ethical duty to take effective measures to minimize inequalities in medical care. At best, such measures should also be assessed as appropriate from the perspective of those affected in order to be accepted and thus effective. It is therefore important to know whether measures touch on the subjectively assumed reasons for experiences of discrimination. Hence, to be able to take appropriate measures, it is important to identify the reasons that transgender individuals see as causal for their experiences of discrimination in healthcare.MethodsWe conducted semi-structured interviews with 14 German transgender individuals and asked them about their own experiences of discrimination in healthcare and their assumptions on the reasons for discrimination. We analyzed the responses using the method of structured qualitative content analysis.Results13 transgender individuals reported experiences of discrimination in healthcare. These emanated from different professional groups and took place in trans-specific as well as general medical settings. We were able to identify a total of 12 reasons that transgender individuals see as causal for their experiences of discrimination: (1) internalized trans-hostility and "protection" of cis individuals, (2) lack of knowledge/uncertainties regarding transition, (3) "protection" of a binary worldview, (4) binary worldview in medicine, (5) structural deficits, (6) asymmetric interactions with specialists, (7) current political debate, (8) view of transgender individuals as a "burden for society", (9) objectification, (10) homophobia, (11) misogyny/androcentrism and (12) discrimination as reaction to discrimination.ConclusionsGerman transgender individuals have a very differentiated picture regarding their subjective reasons for experiencing discrimination in healthcare. Overall, disrespect regarding gender identity and a confrontation with foreignness seems to be seen as the decisive factor. Thus, it is not enough to focus only on measures that aim to remedy the information deficit on the part of medical providers. Measures must be taken that can create a granting and respectful attitude towards transgender individuals.

Project description:BackgroundVaccination programs are effective strategies in preventing infectious diseases and controlling epidemics. Vaccination against SARS-CoV-2 in children has not yet been approved globally, and it is unclear what attitude families will take when it is approved in children. We aimed to investigate the underlying causes of vaccine acceptance, hesitation, and refusal, as well as concerns about the acceptability of the COVID-19 vaccine by parents of children with rheumatic diseases.MethodsParents of children followed up with a diagnosis of rheumatic disease in the pediatric rheumatology outpatient clinic of a university hospital were included in the study. We applied a closed web-based online survey conducted cross-sectionally and sent to the participants via mobile smartphones.ResultsFor fathers, mothers, and their children, acceptance rates for a COVID-19 vaccine were 64.2%, 57.7%, and 41.8%, respectively. In the multivariate analysis, factors affecting parents' acceptance of vaccines for their children were as follows: "Receiving antirheumatic medications regularly (AOR 5.40, 95% CI 1.10-26.33, p = 0.03), the previous history of getting special recommended vaccines (AOR 4.12, 95% CI 1.12-27.85, p = 0.03), relying on vaccines for ending pandemic (AOR 8.84, 95% CI 2.80-27.85, p = 0.001), complying with the pandemic measures entirely (AOR 5.24, 95% CI 1.46-18.74, p = 0.01)". The two most common reasons for vaccine rejection were fear of the side effects of the vaccine and its possible interaction with rheumatic drugs used by children.ConclusionAccording to our survey, parents were more likely to accept a COVID-19 vaccine for themselves than their children. The success of COVID-19 vaccination programs sources highly on people's willingness to accept the vaccine. It is crucial to vaccinate children for achieving herd immunity and in terms of avoiding vaccine hesitancy. Larger data examining the causes of concerns in parents of both healthy children and children with chronic diseases should be delineated.

Dataset Information

Needs and concerns of transgender individuals regarding interdisciplinary transgender healthcare: A non-clinical online survey.

Publications

Needs and concerns of transgender individuals regarding interdisciplinary transgender healthcare: A non-clinical online survey.

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