People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications: their experiences and the role of smartphone applications

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Title: People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications: their experiences and the role of smartphone applications
Authors: Winter, Natalie, Ugalde, Anna, Coyne, Elisabeth, Dieperink, Karin B, Jongebloed, Hannah, Livingston, Patricia
Source: BMC Public Health
BMC Public Health, Vol 24, Iss 1, Pp 1-12 (2024)
Publisher Information: Springer Science and Business Media LLC, 2024.
Publication Year: 2024
Subject Terms: Neoplasms/psychology, Male, Adult, Psycho-oncology, Gender diverse, Interviews as Topic, Sexual and Gender Minorities, Caregivers/psychology, 5. Gender equality, Neoplasms, Humans, 10. No inequality, Qualitative Research, Aged, Patient, Research, Australia, Middle Aged, Caregiver, 16. Peace & justice, Mobile Applications, 3. Good health, Sexual and Gender Minorities/psychology, LGBTQIA+, Caregivers, Neoplasm, Sexually diverse, Female, Smartphone, Public aspects of medicine, RA1-1270, Digital health, Supportive care
Description: Background People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. Methods This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. Results 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. Conclusion Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants’ experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.
Document Type: Article
Other literature type
Language: English
ISSN: 1471-2458
DOI: 10.1186/s12889-024-19144-y
Access URL: https://pubmed.ncbi.nlm.nih.gov/38902694
https://doaj.org/article/f0ad966447ca4f60bd058d8e186cbc9d
Rights: CC BY
URL: http://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (http://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (http://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Accession Number: edsair.doi.dedup.....aa0bc3b1ede6ad035efaa0ff3954602e
Database: OpenAIRE
Description
Abstract:Background People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. Methods This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. Results 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. Conclusion Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants’ experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.
ISSN:14712458
DOI:10.1186/s12889-024-19144-y