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1.
Arch Sex Behav ; 52(3): 901-920, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36689129

RESUMEN

There is a pressing need for greater understanding and focus on cancer survivorship and informal cancer caring of trans people (binary and non-binary), across tumor types, to inform culturally safe trans inclusive cancer information and care. This qualitative study, part of the mixed methods Out with Cancer project, examined experiences of trans embodiment and identity after cancer diagnosis and treatment. We drew on open-ended survey responses from 63 trans cancer survivors and 23 trans cancer carers, as well as interviews and a photo-elicitation activity with a subset of 22 participants (15 cancer survivors, 7 cancer carers). Reflexive thematic analysis identified three themes: Cancer enhances trans embodiment, through experiences of gender euphoria following cancer treatment, and acceleration of decisions about gender affirmation; cancer erases or inhibits gender affirmation; trans embodiment is invisible or pathologized in cancer care. These findings demonstrate that trans embodiment and identity, as well as the process of gender affirmation, may be disrupted by cancer or informal cancer caring. Conversely, cancer and cancer treatment can positively impact the embodied identity and lives of trans people, despite the anxiety and strain of negotiating medical procedures. However, if healthcare professionals operate within a cis-heteronormative framework and do not understand the meaning of embodied change following cancer treatment for trans individuals, these positive benefits may not be realized.


Asunto(s)
Neoplasias , Personas Transgénero , Transexualidad , Humanos , Identidad de Género , Neoplasias/terapia , Investigación Cualitativa , Masculino , Femenino
2.
Fam Pract ; 2023 Oct 05.
Artículo en Inglés | MEDLINE | ID: mdl-37797167

RESUMEN

BACKGROUND: In a therapeutic partnership, physicians rely on patients to describe their health conditions, join in shared decision-making, and engage with supported self-management activities. In shared care, the patient, primary care, and specialist services partner together using agreed processes and outputs for the patient to be placed at the centre of their care. However, few empirical studies have explored physicians' trust in patients and its implications for shared care models. AIM: To explore trust in patients amongst general practitioners (GPs), and the impacts of trust on GPs' willingness to engage in new models of care, such as colorectal cancer shared care. METHODS: GP participants were recruited through professional networks for semi-structured interviews. Transcripts were integrity checked, coded inductively, and themes developed iteratively. RESULTS: Twenty-five interviews were analysed. Some GPs view trust as a responsibility of the physician and have a high propensity for trusting patients. For other GPs, trust in patients is developed over successive consultations based on patient characteristics such as honesty, reliability, and proactivity in self-care. GPs were more willing to engage in colorectal cancer shared care with patients with whom they have a developed, trusting relationship. CONCLUSIONS: Trust plays a significant role in the patient's access to shared care. The implementation of shared care should consider the relational dynamics between the patient and health care providers.


In a therapeutic partnership, physicians rely on patients to describe their health conditions, join in shared decision-making and engage with supported self-management activities. In shared care, the patient, primary care, and specialist services partner together using agreed processes and outputs for the patient to be placed at the centre of their care. Trust is key to this partnership. However, few studies have explored the physicians' trust in patients and its implications for shared care models. This study aims to explore trust in patients amongst general practitioners (GPs), and the impacts of trust on GPs' willingness to engage in new models of care, such as colorectal cancer shared care. After analysing 25 interview transcripts with GPs, we found some GPs view trust as a responsibility of the physicians, while in others, trust in patients developed over successive consultations based on patient characteristics such as honesty, reliability, and proactivity in self-care. GPs were more willing to engage in colorectal cancer shared care with patients whom they have a developed, trusting relationship. Trust plays a significant role in the patient's access to shared care. The rollout of shared care should consider the relational dynamics between the patient and health care providers.

3.
Sex Health ; 20(1): 20-34, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36261118

RESUMEN

Australia's National Men's Health Strategy 2020-2030 identifies refugee and migrant men from culturally and lingustically diverse backgrounds as priority groups for sexual and reproductive health (SRH) interventions. The paucity of SRH research focusing on refugee and migrant men is a significant gap to advance men's health and policy. Hence, this review aimed to synthesise the available evidence on refugee and migrant men's SRH needs, understandingsand experiences of accessing services after resettlement in Australia. A systematic search of peer reviewed literature in PubMed, Scopus, and PsyInfo was made. A World Health Organization framework for operationalising sexual health and its relationship with reproductive health was used to map the identified studies. The socio-ecological framework was applied to thematically synthesise data extracted from individual studies and identify factors that influence the SRH of refugee and migrant men. We included 38 papers in the review. The majority of sexual health studies (16) were about sexually transmitted infections (STIs), mainly HIV (12), followed by sexual health education and information (5) and sexual functioning (3). Reproductive health studies focused on contraceptive counselling and provision (3), antenatal, intrapartum and postnatal care (1) and safe abortion care (1). Several factors influenced refugee and migrant men's SRH, including a lack of access to SRH information, language barriers and stigma. We found that SRH literature on refugee and migrant men focuses on STIs, meaning other areas of SRH are poorly understood. We identified key gaps in research on experiences of, and access to, comprehensive SRH care.


Asunto(s)
Refugiados , Salud Sexual , Enfermedades de Transmisión Sexual , Migrantes , Masculino , Femenino , Humanos , Embarazo , Salud Reproductiva , Conocimientos, Actitudes y Práctica en Salud , Conducta Sexual , Australia
4.
Medicina (Kaunas) ; 59(9)2023 Sep 13.
Artículo en Inglés | MEDLINE | ID: mdl-37763774

RESUMEN

Background and Objectives: Endometriosis causes significant personal and societal burden. Despite this, research funding lags behind other chronic conditions. Determining where to prioritise these limited funds is therefore vital. Research priorities may also differ between individuals with endometriosis and clinicians/researchers. The aim of this research project is to explore research priorities and factors shaping participation in endometriosis research from the perspective of people with endometriosis in Australia. Materials and Methods: Four focus groups involving 30 people with endometriosis were conducted and analysed using qualitative inductive content analysis. Results: Two categories were developed from the data: unmet research needs and motivators and barriers to participation in endometriosis research. Participants expressed interest in developing non-invasive diagnostic tools and a more multidisciplinary or holistic approach to treatment. Participants urgently desired research on treatment options for symptom management, with many prioritising non-hormonal treatments, including medicinal cannabis and complementary medicine. Others prioritised research on the causes of endometriosis over research on treatments to assist with prevention and eventual cure of the disease. The main drivers for participating in endometriosis research were hope for symptom improvement and a reduction in time to diagnosis. Research design features that were important in supporting participation included ease of access to testing centres (e.g., for blood tests) and sharing test results and automated data collection reminders, with simple stra-tegies to record data measurements. Research incentives for younger people with endometriosis and a broad dissemination of information about research projects was considered likely to increase participant numbers. Barriers included time commitments, a lack of flexibility around research appointments for data collection, travel or work commitments, concerns about the safety of some products, and trying to conceive a child. Conclusions: People with endometriosis were open to participating in research they felt aligned with their needs, with a significant focus on diagnostic tools and symptom relief. However, researchers must co-design approaches to ensure convenience and flexibility for research participation.


Asunto(s)
Endometriosis , Niño , Femenino , Humanos , Australia , Investigación Cualitativa
5.
Ethn Health ; 27(8): 1787-1805, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-34569377

RESUMEN

OBJECTIVE: Migrant and refugee women experience inequities in sexual and reproductive health (SRH) care, reflected in the low uptake of SRH services. It is essential for healthcare providers and educators to be aware of women's preferences for SRH information and service delivery, to provide culturally responsive care. Identifying migrant and refugee women's preferences for SRH information and service delivery is the objective of this study. DESIGN: This study investigated this issue, in communities of migrant and refugee women living in Australia and Canada. Eighty-four individual interviews and 16 focus groups comprising 85 participants were conducted (total n = 169), with migrant and refugee women aged 18 years and over from Afghanistan, India (Punjab), Iraq, Somalia, South Sudan, Sri-Lanka (Tamil), Sudan and various South American (Latina) backgrounds. Nine individual interviews were also undertaken with community interviewers, who were migrant or refugee women themselves. RESULTS: Thematic analyses identified that migrant and refugee women are enthusiastic to learn about SRH across the lifespan, using a variety of modalities including group education delivered by community leaders; online and written material; and information provided by general practitioners. Participants emphasised the need for empathetic SRH care, which encompassed longer times for consultations, being seen as experts of their own bodies, privacy and healthcare provided by women practitioners. Greater engagement with migrant and refugee men was positioned as an additional solution to addressing SRH concerns of women. CONCLUSION: Insights from this study can help facilitate the co-design and evaluation of acceptable and sustainable programs to address inequities in SRH experienced by migrant and refugee women.


Asunto(s)
Refugiados , Migrantes , Masculino , Femenino , Humanos , Adolescente , Adulto , India , Investigación Cualitativa , Salud Reproductiva , Conocimientos, Actitudes y Práctica en Salud
6.
Psychooncology ; 30(9): 1442-1448, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33860553

RESUMEN

OBJECTIVE: This study evaluated the acceptability and impact of a written oncofertility educational resource (ER), as a self-help intervention (SH), and as an adjunct to a one-hour health-care professional discussion (HP). METHODS: Within a randomized control trial (RCT), 194 adults with cancer (175 womens; 19 mens) were allocated to the SH or HP intervention. 127 completed 6-weeks post-intervention measures, a retention rate of 65.85%. RESULTS: Across interventions, the ER was rated as highly acceptable and useful, in terms of ease of understanding, and information. Heath literacy significantly increased post-intervention, including functional literacy, communicative literacy, and critical health literacy. There were no significant changes in ratings of fertility distress or general distress pre-post intervention. Quality of life was significantly reduced post intervention. Those in the HP condition reported higher quality of life and greater likelihood of communication with others about fertility, most notably with intimate partners, post-intervention. Qualitative identification of increased knowledge, confidence with communication and normalization of fertility concerns, reflects increased health literacy, and provides explanation for significant reductions in feeling nervous and fearful about fertility treatments post-intervention. CONCLUSIONS: Our findings confirm the importance of information provision about the impact of cancer on fertility. Written ERs are a useful adjunct to a patient-clinician discussion, increasing health literacy, which facilitates knowledge, self-efficacy and management of fertility concerns and changes.


Asunto(s)
Alfabetización en Salud , Neoplasias , Adulto , Femenino , Fertilidad , Humanos , Masculino , Hombres , Neoplasias/terapia , Parejas Sexuales
7.
Arch Sex Behav ; 50(7): 3201-3222, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-34697692

RESUMEN

Despite experiencing high rates of sexual violence, there is limited research that explores coping and support needs among trans women of color and those from migrant backgrounds. This article examines the impact of sexual violence, as well as responses and support needs in relation to sexual violence, among 31 trans women of color, aged between 18-54 years, living in Australia. Women were recruited using purposive and snowball sampling, local LGBTQI + networks, and social media. Study advertisements invited participation from people 18 years and older, who identified as a "trans woman of color" or "trans woman from a non-English speaking background," to take part in a study about their lives as trans women of color and experiences of sexual violence. In-depth interviews and photovoice took place between September 2018 and September 2019. Findings were analyzed through thematic analysis, drawing on intersectionality theory. Sexual violence was reported to be associated with fear, anxiety, and depression, and, for a minority of women, self-blame. While women reported hypervigilance and avoiding going out in public as measures to anticipate and protect themselves from sexual violence, they also demonstrated agency and resilience. This included putting time and effort into appearing as a cisgender woman, naming violence, seeking support, rejecting self-blame, and engaging in self-care practices to facilitate healing. Trans women highlighted the need for multi-faceted sexual violence prevention activities to encourage education, empowerment and cultural change across the general population and support services, in order to promote respect for gender, sexuality and cultural diversity.


Asunto(s)
Delitos Sexuales , Migrantes , Transexualidad , Adolescente , Adulto , Femenino , Identidad de Género , Humanos , Persona de Mediana Edad , Conducta Sexual , Adulto Joven
8.
BMC Public Health ; 21(1): 161, 2021 01 19.
Artículo en Inglés | MEDLINE | ID: mdl-33468106

RESUMEN

BACKGROUND: Cancer related infertility can have an impact on couple relationships, with evidence that couple communication facilitates coping. However, little is known about the ways in which couples communicate about cancer-related fertility concerns. The aim of this article is to examine couple communication about fertility concerns in the context of cancer, and the perceived quality of such communication from the perspective of cancer survivors and their partners. METHODS: Eight-hundred and seventy-eight cancer survivors (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey which examined cancer related fertility concerns. Seventy-eight survivors (61 women and 17 men), and 26 partners (13 women and 13 men), participated in semi-structured interviews, in order to examine the subjective experience of fertility concerns in-depth. Thematic analysis was used to analyse the interviews and open ended survey questions. Valid percentages for single items from the relationships subscale of the Fertility Preservation Inventory (FPI) related to qualitative themes, identified frequency of responses. RESULTS: The major theme was 'talking but not always understanding". 89.6% of cancer survivors and partners (95.1%) reported working well together handling fertility questions (FPI), but agreed that communication could be improved (65.9% survivors; 65% partners). Open and honest couple communication was associated with feelings of support, understanding and relationship growth, including perception of partner comfort (79.2% survivors, 81.6% partners). However, 32% survivors and 31.1% partners concealed fertility concerns to avoid upsetting their partner, or reported that their partner doesn't understand their fertility concerns (survivors 25.5%, partners 14.6%), with 14.1% of cancer survivors and 19.4% partners reporting fear of relationship breakdown because of fertility issues. Fear of rejection when forming new relationships, and concerns about how to talk to future partners, was reported by non-partnered individuals. CONCLUSION: Health-care professionals should include partners of cancer survivors in fertility discussions. Couple interventions developed in general psycho-oncology should be extended to the domain of fertility, in order to facilitate effective couple communication. Communication in future relationships needs to be addressed for single people and adolescents and young adults (AYAs) who have fertility concerns.


Asunto(s)
Preservación de la Fertilidad , Infertilidad , Neoplasias , Adolescente , Comunicación , Femenino , Humanos , Infertilidad/etiología , Masculino , Sobrevivientes , Adulto Joven
9.
Eur J Cancer Care (Engl) ; 30(1): e13348, 2021 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-33084134

RESUMEN

OBJECTIVE: The purpose of this study was to examine how cancer-related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. METHODS: A qualitative research design was used, drawing data from open-ended responses to a survey and in-depth individual interviews. Eight hundred and seventy-eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi-structured interviews. RESULTS: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer-related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. CONCLUSION: Cancer-related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un-partnered people with cancer.


Asunto(s)
Infertilidad , Neoplasias , Femenino , Fertilidad , Humanos , Masculino , Conducta Sexual , Parejas Sexuales
10.
Cult Health Sex ; 21(7): 741-756, 2019 07.
Artículo en Inglés | MEDLINE | ID: mdl-30280959

RESUMEN

There has been a call for research on migrant and refugee women's negotiation of diverse discourses and cultural constraints associated with sexual embodiment, including menopause, in order to facilitate sexual and reproductive health and understand gendered subjectivity. This study examined the construction and experience of menopause among migrant and refugee women who had settled in Australia or Canada in the last 10 years. Eighty-four individual interviews and 16 focus groups comprising 85 participants were conducted (total n = 169), with women aged 18 years and over from Afghanistan, India (Punjab), Iraq, Somalia, South Sudan, Sri-Lanka (Tamil), Sudan and various South American (Latina) backgrounds. Thematic decomposition identified three discursive themes: Menopause as the Age of Despair; a Discourse of Silence and Secrecy; and Menopause as a Life Stage - or when Life Starts. Negative constructions of menopause, associated with silence and secrecy, were evident across different cultural groups, with implications for women's positioning and experience of menopausal change and embodiment. However, resistance to negative discourse was also evident. This was primarily associated with having received menopause education and more open communication about menopausal change, suggesting that education and health information can facilitate affirming aspects of menopause.


Asunto(s)
Cultura , Menopausia/psicología , Refugiados/psicología , Migrantes/psicología , Adulto , Australia , Canadá , Femenino , Grupos Focales , Humanos , Entrevistas como Asunto , Salud Reproductiva/etnología , Salud Sexual/etnología
11.
Health Care Women Int ; 40(7-9): 870-897, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30985270

RESUMEN

In this study, adult migrant and refugee women's negotiation of sexual agency in the context of marriage is explored. In Sydney, Australia and Vancouver, Canada, 78 semistructured individual interviews, and 15 focus groups, comprised of 82 participants, were conducted with women who had recently migrated from Afghanistan, Iraq, Somalia, South Sudan, Sudan, Sri Lanka, and South America. Women's negotiation of sexual agency was evident with respect to husband choice, disclosure of sexual desire, pleasure, pain, and sexual consent. While some participants took up subjugated sexual subject positions reflecting dominant cultural or religious discourses, many women also resisted these discourses to enact sexual agency.


Asunto(s)
Matrimonio/psicología , Refugiados/psicología , Conducta Sexual/etnología , Migrantes/psicología , Adolescente , Adulto , Anciano , Australia/etnología , Canadá/etnología , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Persona de Mediana Edad , Negociación , Investigación Cualitativa , Esposos/psicología , Adulto Joven
12.
Arch Sex Behav ; 46(7): 1901-1921, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28083724

RESUMEN

In Australia and Canada, the sexual health needs of migrant and refugee women have been of increasing concern, because of their underutilization of sexual health services and higher rate of sexual health problems. Previous research on migrant women's sexual health has focused on their higher risk of difficulties, or barriers to service use, rather than their construction or understanding of sexuality and sexual health, which may influence service use and outcomes. Further, few studies of migrant and refugee women pay attention to the overlapping role of culture, gender, class, and ethnicity in women's understanding of sexual health. This qualitative study used an intersectional framework to explore experiences and constructions of sexual embodiment among 169 migrant and refugee women recently resettled in Sydney, Australia and Vancouver, Canada, from Afghanistan, Iraq, Somalia, South Sudan, Sudan, Sri Lanka, India, and South America, utilizing a combination of individual interviews and focus groups. Across all of the cultural groups, participants described a discourse of shame, associated with silence and secrecy, as the dominant cultural and religious construction of women's sexual embodiment. This was evident in constructions of menarche and menstruation, the embodied experience that signifies the transformation of a girl into a sexual woman; constructions of sexuality, including sexual knowledge and communication, premarital virginity, sexual pain, desire, and consent; and absence of agency in fertility control and sexual health. Women were not passive in relation to a discourse of sexual shame; a number demonstrated active resistance and negotiation in order to achieve a degree of sexual agency, yet also maintain cultural and religious identity. Identifying migrant and refugee women's experiences and constructions of sexual embodiment are essential for understanding sexual subjectivity, and provision of culturally safe sexual health information in order to improve well-being and facilitate sexual agency.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Matrimonio/etnología , Menstruación/etnología , Conducta Sexual/etnología , Sexualidad/etnología , Adolescente , Adulto , África Oriental/etnología , Anciano , Asia Occidental/etnología , Colombia Británica , Comunicación , Confidencialidad , Conducta Anticonceptiva/etnología , Conducta Anticonceptiva/psicología , Femenino , Grupos Focales , Identidad de Género , Humanos , India , Matrimonio/psicología , Menarquia/etnología , Menarquia/psicología , Menstruación/psicología , Persona de Mediana Edad , Negociación , Nueva Gales del Sur , Embarazo , Investigación Cualitativa , Refugiados/psicología , Conducta Sexual/psicología , Salud Sexual/etnología , Sexualidad/psicología , Vergüenza , Migrantes/psicología , Salud de la Mujer , Adulto Joven
13.
Int J Behav Med ; 24(6): 836-845, 2017 12.
Artículo en Inglés | MEDLINE | ID: mdl-28620774

RESUMEN

PURPOSE: Migrant and refugee women are at risk of negative sexual and reproductive health (SRH) outcomes due to low utilisation of SRH services. SRH is shaped by socio-cultural factors which can act as barriers to knowledge and influence access to healthcare. Research is needed to examine constructions and experiences of SRH in non-English-speaking migrant and refugee women, across a range of cultural groups. METHOD: This qualitative study examined the constructions and experiences of SRH among recent migrant and refugee women living in Sydney, Australia, and Vancouver, Canada. A total of 169 women from Afghanistan, Iraq, Somalia, South Sudan, Sudan, India, Sri Lanka and South America participated in the study, through 84 individual interviews, and 16 focus groups comprised of 85 participants. Thematic analysis was used to analyse the data. RESULTS: Three themes were identified: "women's assessments of inadequate knowledge of sexual and reproductive health and preventative screening practices", "barriers to sexual and reproductive health" and "negative sexual and reproductive health outcomes". Across all cultural groups, many women had inadequate knowledge of SRH, due to taboos associated with constructions and experiences of menstruation and sexuality. This has implications for migrant and refugee women's ability to access SRH education and information, including contraception, and sexual health screening, making them vulnerable to SRH difficulties, such as sexually transmissible infections and unplanned pregnancies. CONCLUSION: It is essential for researchers and health service providers to understand socio-cultural constraints which may impede SRH knowledge and behaviour of recent migrant and refugee women, in order to provide culturally safe SRH education and services that are accessible to all women at resettlement irrespective of ethnicity or migration category.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Salud Reproductiva , Salud Sexual , Migrantes , Adolescente , Adulto , Anciano , Australia , Canadá , Anticoncepción , Femenino , Grupos Focales , Humanos , Persona de Mediana Edad , Refugiados/psicología , Conducta Sexual , Adulto Joven
14.
Qual Health Res ; 27(10): 1473-1490, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-27742765

RESUMEN

Experiences and constructions of menarche and menstruation are shaped by the sociocultural environment in which women are embedded. We explored experiences and constructions of menarche and menstruation among migrant and refugee women resettled in Sydney, Australia, and Vancouver, Canada. Seventy-eight semistructured individual interviews and 15 focus groups comprised of 82 participants were undertaken with women from Afghanistan, Iraq, Somalia, South Sudan, Sudan, Sri Lanka, and varying South American countries. We analyzed the data using thematic decomposition, identifying the overall theme "cycles of shame" and two core themes. In "becoming a woman," participants constructed menarche as a marker of womanhood, closely linked to marriage and childbearing. In "the unspeakable," women conveyed negative constructions of menstruation, positioning it as shameful, something to be concealed, and polluting. Identifying migrant and refugee women's experiences and constructions of menarche and menstruation is essential for culturally safe medical practice, health promotion, and health education.


Asunto(s)
Menarquia/psicología , Menstruación/psicología , Refugiados/psicología , Vergüenza , Estigma Social , Migrantes/psicología , Adolescente , Adulto , Afganistán , Australia , Canadá , Femenino , Grupos Focales , Humanos , Irak , Investigación Cualitativa , Somalia , América del Sur , Sudán del Sur , Sri Lanka , Sudán , Adulto Joven
15.
Telemed J E Health ; 21(2): 97-104, 2015 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-25469795

RESUMEN

INTRODUCTION: There are large numbers of health-related applications (apps) available in various app stores for many smartphone devices. Consequently, increasing numbers of articles are attempting to evaluate the content and the quality of health-related smartphone apps for specific health conditions. The aim of this article is to describe and summarize the methodologies used to determine the quality of health-related apps targeting health consumers and to propose a set of criteria for evaluating the quality of smartphone health-related apps. MATERIALS AND METHODS: In 2013, literature searches were performed using Medline and CINAHL, and we included all articles that had the aim of assessing the quality of health-related smartphone apps. The assessment method used in these studies was summarized and scored using a set of quality criteria developed for this study. RESULTS: From 606 articles generated by the search, only 10 met the inclusion criteria. Based on our quality criteria, the mean score was 5.05 out of 8 (range, 2-7). Eighty percent of the studies did not identify the app store country in which the apps were found. Forty percent of the studies did not clearly mention whether they only had assessed the app description or had downloaded the app content for evaluation. Sixty percent of the studies did not provide a list of the apps they had evaluated. Overall, we identified six evaluation methodologies used to assess the quality of health-related apps described in RESULTS. CONCLUSIONS: This article provides a summary of currently used methods for assessing the quality of smartphone health-related apps and proposes a set of criteria to enable future studies to consistently review health-related app quality in a standardized manner.


Asunto(s)
Aplicaciones Móviles/normas , Garantía de la Calidad de Atención de Salud/normas , Teléfono Inteligente/normas , Telemedicina/normas , Humanos , Aplicaciones Móviles/tendencias , Garantía de la Calidad de Atención de Salud/métodos , Garantía de la Calidad de Atención de Salud/tendencias , Teléfono Inteligente/tendencias , Telemedicina/instrumentación , Telemedicina/tendencias
16.
Int J Qual Stud Health Well-being ; 19(1): 2356924, 2024 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38796859

RESUMEN

PURPOSE: This paper examines the subjective experience of medical interventions on intersex bodies to reduce cancer risk. METHODS: Twenty-five individuals with intersex variations took part in semi-structured interviews, analysed through thematic discourse analysis. RESULTS: Intersex bodies were positioned as inherently sick and in need of modification, with cancer risk legitimating surgical and hormonal intervention. This resulted in embodied shame, with negative impacts on fertility and sexual wellbeing. However, many participants resisted discourses of bio-pathologisation and embraced intersex status. Some medical interventions, such as HRT, were perceived to have increased the risk of cancer. Absence of informed consent, and lack of information about intersex status and the consequences of medical intervention, was positioned as a human rights violation. This was compounded by ongoing medical mismanagement, including health care professional lack of understanding of intersex variations, and the objectification or stigmatization of intersex people within healthcare. The consequence was non-disclosure of intersex status in health contexts and lack of trust in health care professionals. CONCLUSIONS: The legitimacy of poorly-evidenced cancer risk discourses to justify medical intervention on intersex bodies needs to be challenged. Healthcare practitioners need to be provided with education and training about cultural safety practices for working with intersex people.


Asunto(s)
Neoplasias , Humanos , Masculino , Femenino , Neoplasias/psicología , Neoplasias/prevención & control , Adulto , Persona de Mediana Edad , Trastornos del Desarrollo Sexual , Miedo , Investigación Cualitativa , Adulto Joven , Vergüenza
17.
Front Oncol ; 12: 832657, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35619900

RESUMEN

Background: Awareness of the specific needs of LGBTQI cancer patients has led to calls for inclusivity, cultural competence, cultural safety and cultural humility in cancer care. Examination of oncology healthcare professionals' (HCP) perspectives is central to identifying barriers and facilitators to inclusive LGBTQI cancer care. Study Aim: This study examined oncology HCPs perspectives in relation to LGBTQI cancer care, and the implications of HCP perspectives and practices for LGBTQI patients and their caregivers. Method: 357 oncology HCPs in nursing (40%), medical (24%), allied health (19%) and leadership (11%) positions took part in a survey; 48 HCPs completed an interview. 430 LGBTQI patients, representing a range of tumor types, sexual and gender identities, age and intersex status, and 132 carers completed a survey, and 104 LGBTQI patients and 31 carers undertook an interview. Data were analysed using thematic discourse analysis. Results: Three HCP subject positions - ways of thinking and behaving in relation to the self and LGBTQI patients - were identified:'Inclusive and reflective' practitioners characterized LGBTQI patients as potentially vulnerable and offered inclusive care, drawing on an affirmative construction of LGBTQI health. This resulted in LGBTQI patients and their carers feeling safe and respected, willing to disclose sexual orientation and gender identity (SOGI) status, and satisfied with cancer care. 'Egalitarian practitioners' drew on discourses of ethical responsibility, positioning themselves as treating all patients the same, not seeing the relevance of SOGI information. This was associated with absence of LGBTQI-specific information, patient and carer anxiety about disclosure of SOGI, feelings of invisibility, and dissatisfaction with healthcare. 'Anti-inclusive' practitioners' expressed open hostility and prejudice towards LGBTQI patients, reflecting a cultural discourse of homophobia and transphobia. This was associated with patient and carer distress, feelings of negative judgement, and exclusion of same-gender partners. Conclusion: Derogatory views and descriptions of LGBTQI patients, and cis-normative practices need to be challenged, to ensure that HCPs offer inclusive and affirmative care. Building HCP's communicative competence to work with LGBTQI patients needs to become an essential part of basic training and ongoing professional development. Visible indicators of LGBTQI inclusivity are essential, alongside targeted resources and information for LGBTQI people.

18.
Front Oncol ; 12: 918016, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35814403

RESUMEN

Background: Lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI) people with cancer and their carers report poorer psychological outcomes than the general non-LGBTQI cancer population. There is growing acknowledgement that these health inequities can be explained by minority stress, which can be buffered by social support. Study Aim: To examine subjective experiences of minority stress and social support for LGBTQI people with cancer and their carers, drawing on qualitative findings from the Out with Cancer study. Method: An online survey including open ended items was completed by 430 LGBTQI cancer patients and 132 partners and other carers, representing a range of tumor types, sexual and gender identities, age and intersex status. A sub-sample of 104 patients and 31 carers completed an interview, with a follow-up photovoice activity and second interview completed by 45 patients and 10 carers. Data was thematically analysed using an intersectional theoretical framework. Results: Historical and present-day experiences of discrimination, violence, family rejection and exclusion created a legacy of distress and fear. This impacted on trust of healthcare professionals and contributed to distress and unmet needs in cancer survivorship and care. Social support, often provided by partners and other chosen family, including intimate partners and other LGBTQI people, buffered the negative impacts of minority stress, helping LGBTQI patients deal with cancer. However, some participants lacked support due to not having a partner, rejection from family of origin and lack of support within LGBTQI communities, increasing vulnerability to poor psychological wellbeing. Despite the chronic, cumulative impacts of minority stress, LGBTQI patients and carers were not passive recipients of discriminatory and exclusion in cancer care, demonstrating agency and resistance through collective action and advocacy. Conclusion: LGBTQI people have unique socio-political histories and present-day psycho-social experiences that contribute to distress during cancer. Social support serves to buffer and ameliorate this distress. There is a need for cancer healthcare professionals and support services to be aware of and responsive to these potential vulnerabilities, including the intersectional differences in experiences of minority stress and social support. There is also a need for recognition and facilitation of social support among LGBTQI people with cancer and their carers.

19.
Int J Transgend Health ; 23(1-2): 79-96, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35403115

RESUMEN

Introduction: Transgender (trans) women of color navigate the intersected identity frames of gender, race, social class and sexuality, whilst facing multiple layers of stigma, discrimination and violence during and following gender affirmation. However, little is known about the ways in which trans women of color negotiate gender affirmation, in the context of the risk of social exclusion and violence. Aim: This article discusses the experience and construction of gender transitioning and gender affirmation for trans women of color living in Australia, associated with the risk of social exclusion or violence. Method: In-depth interviews and photovoice were conducted with 31 trans women of color, analyzed through theoretical thematic analysis informed by intersectionality theory. Results: The following themes were identifed: 1) 'Gender affirmation: A bittersweet experience', with three subthemes: 'Self-empowerment is tempered by family rejection', 'Migration facilitates gender affirmation' and 'Gender affirmation and social support'; 2) 'Being a trans woman of color', subthemes: 'Bodily agency and passing', 'Femininity as pleasure and cultural self-expression', and 'Resisting archetypal White hetero-femininity'; 3) 'Hormones, surgical intervention and navigating the health system'. Conclusion: Gender transitioning and gender affirmation involved the intersection of gender, cultural, social class and sexual identities, accomplished through personal agency and with the support of significant others. To ensure that policy and support services meet the needs of trans women of color, it is critical that the voices of such multiply-marginalized women are at the center of leadership, program and policy development.

20.
J Interpers Violence ; 37(5-6): NP3552-NP3584, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-32783523

RESUMEN

Transgender (trans) women are at higher risk of sexual violence than cisgender women, with trans women of color reported to be at highest risk. This study examined subjective experiences of sexual violence for 31 trans women of color living in Australia, average age 29 (range 18-54), through in-depth interviews. An additional photovoice activity and follow-up interviews were completed by 19 women. Data were analyzed through thematic analysis and feminist intersectionality theory, identifying the following themes. The first theme, "'A sexually tinged violation of boundaries': Defining sexual violence," examined women's definition of sexual violence, including staring and verbal abuse, nonconsensual touching and sexual assault, in both public and private contexts. The second theme, "'Crossing people's boundaries': Sexual harassment in the public domain," examined the frequent sexual harassment women experienced in their daily lives. This included the subtheme, "A hostile gaze: Public staring and 'weird looks'" and "Mockery and transphobic abuse: Verbal abuse is sexual violence." The third theme, "'Crossing bodily boundaries': Experiences of sexual assault," included the subthemes "'Unwanted sexual touch': Groping and forced sex by strangers," "Danger in relationships: Sexual assault and manipulation," "Sexual violence in the context of sex work," and "'We're turned into something we're not': Fetishization and the sexual other." The poor health outcomes experienced by many trans women are closely associated with their exposure to sexual violence and the social inequities and transphobia to which they are subjected. Trans women of color may experience additional prejudice and discrimination due to the intersection of gender, sexuality, race, and social class. Our research suggests that understanding these intersectionalities is integral in understanding the sexual violence experiences of trans women of color.


Asunto(s)
Delitos Sexuales , Acoso Sexual , Transexualidad , Adulto , Femenino , Identidad de Género , Humanos , Masculino , Pigmentación de la Piel
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