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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.
Six focus groups conducted with HCT providers (n = 48) currently delivering hospice care in three US states were audio-recorded and transcribed. Data were content coded (κ = 0.77), aggregated by topical categories, and descriptively summarized.
Participants were mostly white and non-Hispanic (n = 43, 89.6%), cisgender female (n = 42, 87.5%), heterosexual (n = 35, 72.9%), and religious (n = 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.
Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.
Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.
Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).
Significance of Results:
Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.
The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.
As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.
Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.
Significance of Results:
Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.
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