Objectives: Hospice patients and caregivers who are members of sexual and gender minority groups (i.e., LGBTQ+) have reported experiencing unmet needs at end of life (EOL). Negative experiences often stem from challenging interactions with healthcare providers due to ineffective or poor communication and providers' heteronormative assumptions and biases. Few studies, however, examine hospice care team (HCT) providers' knowledge, experience, and opinions related to EOL care for LGBTQ+ patients and caregivers despite this being identified as a gap in competency and education. We sought to examine HCT providers' perceptions regarding (1) awareness of LGBTQ+ patients and caregivers; (2) knowledge of specific or unique needs; and (3) opinions on best care and communication practices.
Methods: Six focus groups conducted with HCT providers ( = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded ( = 0.77), aggregated by topical categories, and descriptively summarized.
Results: Participants were mostly white and non-Hispanic ( = 43, 89.6%), cisgender female ( = 42, 87.5%), heterosexual ( = 35, 72.9%), and religious ( = 33, 68.8%); they averaged 49 years of age (range 26-72, SD = 11.66). Awareness of LGBTQ+ patients and caregivers depended on patient or caregiver self-disclosure and contextual cues; orientation and gender identity data were not routinely collected. Many viewed being LGBTQ+ as private, irrelevant to care, and not a basis for people having specific or unique EOL needs because they saw EOL processes as universal, and believed that they treat everyone equally. Providers were more comfortable with patients of lesbian or gay orientation and reported less comfort and limited experience caring for transgender and gender-diverse patients or caregivers.
Significance Of Results: Many HCT members were unaware of specific issues impacting the EOL experiences of LGBTQ+ patients and caregivers, or how these experiences may inform important care and communication needs at EOL.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1017/S1478951522000657 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Has Family Engagement Finally Gained Foothold in Forensic Mental Healthcare?
Int J Ment Health Nurs
February 2025
Department of Head and Skin, Faculty of Medicine and Health Sciences, Ghent University & Ghent University Hospital, Ghent, Belgium.
Despite advancements in promoting family engagement in mental health settings, limited involvement of family members persists in forensic mental healthcare. Forensic mental healthcare professionals face various barriers in engaging families, including a patient-centered approach and resource constraints. However, limited understanding exists of professionals' experiences with family engagement, which is crucial for improving care practices in this setting.
View Article and Find Full Text PDFImpact of genetic testing in developmental and epileptic encephalopathy- parents' perspective.
Epilepsy Behav
December 2024
Department of Neurology, Drammen Hospital, Vestre Viken Hospital Trust, Dronninggata 28, 3004 Drammen, Norway. Electronic address:
Background: Developmental and epileptic encephalopathies (DEEs) are a group of severe and heterogeneous epilepsies. Most of the affected patients have treatment refractory seizures, intellectual disability (ID), and multiple comorbidities. The condition has a negative impact on quality of life, both for the patients and their families.
View Article and Find Full Text PDFIn response to recent proposals to utilize artificial intelligence (AI) to automate ethics consultations in healthcare, we raise two main problems for the prospect of having healthcare professionals rely on AI-driven programs to provide ethical guidance in clinical matters. The first cause for concern is that, because these programs would effectively function like black boxes, this approach seems to preclude the kind of transparency that would allow clinical staff to explain and justify treatment decisions to patients, fellow caregivers, and those tasked with providing oversight. The other main problem is that the kind of authority that would need to be given to the guidance issuing from these programs in order to do the work set out for them would mean that clinical staff would not be empowered to provide meaningful safeguards against it in those cases when its recommendations are morally problematic.
View Article and Find Full Text PDFLetter to the editor "Quality of life of caregivers of patients on home enteral nutrition".
Clin Nutr
December 2024
Postgraduate Program in Movement Sciences, Center for Biological and Health Sciences, Federal University of Sergipe, São Cristovão 49107-230, Sergipe, Brazil. Electronic address:
Ambivalent and heavy burdened wanderers on a road less travelled: a meta-ethnography on end-of-life care experiences among family caregivers in rural areas.
BMC Health Serv Res
December 2024
Department of Health and Care Sciences, Faculty of Health Sciences, UiT, The Arctic University of Norway, Tromsø, Norway.
Background: As the population ages, more people will be diagnosed with cancer, and they will live longer due to receiving better treatment and optimized palliative care. Family members will be expected to take on more responsibilities related to providing palliative care at home. Several countries have expressed their vision of making home death an option, but such a vision can be more challenging in rural areas.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!