Objective: Investigators should return study results to patients and families facing cancer to honor their research contributions. We created a found poem from transcripts of sexual and gender minority (SGM) couples facing cancer and returned it to study participants. Methods: Participants were randomized to receive the found poem in text, text and audio, audio, or video format, completed dissemination preferences and emotion questionnaires, and open-ended questions about their experience receiving the poem. Results: Participants preferred the format they received (n = 15, 75.0%), with text-only and combined text and audio formats evoking the greatest number of emotions (n = 13 each). The following categories and subcategories were identified: dyadic experiences (support, strength, depth, durability); dissemination preferences (timing, method); emotion (positive, negative); utility of the found poem (affirming; fostering reflection; not useful or inaccurate, and sense of community). SGM participants utilized positive emotion, affirming, and a sense of community with greater frequency than non-SGM participants. Conclusion: Innovative approaches to dissemination are acceptable; providing choices in how and when participants receive results may increase engagement; and SGM versus non-SGM groups may describe dyadic experiences differently. Innovation: Returning study results via found poetry is an innovative way to honor research participants facing cancer.
BACKGROUND AND OBJECTIVES: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance. RESEARCH DESIGN AND METHODS: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP. RESULTS: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust. DISCUSSION AND IMPLICATIONS: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.
Advance Care Planning , Dementia , Aged , Humans , Caregivers/psychology , Decision Making , Dementia/psychology , Pilot Projects , Qualitative Research , Terminal Care/psychology
Introduction: Although health systems increasingly integrate social needs screening and referrals into routine care, the effectiveness of these interventions and for whom they work remains unclear. Methods: Patients (N=4,608) seen in the emergency department were screened for social needs (e.g., transportation, housing, food) and offered an opportunity to receive outreach from community service specialists. Results: Among 453 patients with 1 or more social needs who requested assistance, outreach specialists connected with 95 (21.0%). Patients preferred to be contacted through their telephone (n=21, 60.2%), email (n=126, 28.0%), someone else's telephone (n=30, 6.7%), or first by telephone followed by email (n=23, 5.1%). Preferred contact method varied by patient age; endorsement of unmet transportation, housing, and utility needs; receipt of service outreach; and differences in emergency department utilization from the 6 months before the index visit to the 6 months after. Conclusions: Because limited access to a stable telephone or internet connection may prevent patients from connecting with resource referrals, social needs interventions may not benefit the most underserved populations who are at the highest risk of negative health outcomes. Future research should investigate whether communication preferences are an important indicator of needs and how to adapt social needs screening and referral processes so that they are more accessible to populations who may experience more frequent disruptions in methods utilized for digital communication.
BACKGROUND: Compared with older cancer caregivers, young adult cancer caregivers (YACC) experience greater stress and depression during the first 6 months of caregiving. Social support can buffer the negative psychological effects associated with cancer caregiving. However, the misalignment of social support is associated with increased distress and worse emotional well-being. As YACC are more likely to utilize social media (SM) to seek social support compared with older cancer caregivers, they may be at greater risk of experiencing the misalignment of social support and related negative outcomes. OBJECTIVE: The purpose of this study was to identify ways that SM posts containing support for YACC's were potentially misaligned with the social support desired by YACC. METHODS: In this secondary analysis, cancer-related SM posts (N = 760) from 34 YACC's SM accounts were extracted for 6 months following the day of cancer diagnosis and imported into NVivo qualitative analysis software. Open coding of posts from four YACC identified a pattern of SM posts containing responses that may misalign with social support requests, and could be perceived as dismissive of YACC's emotions. Similar posts were grouped together, forming categories which were used to create a codebook and applied in coding all posts from the remaining 30 YACC. RESULTS: Content analysis identified three categories of social support misalignment originating from YACC's SM posts: supplications (n = 251, 33%), prevailing (n = 7, 10.1%), and consolations (n = 16, 2.1%). Supplications involved prayer or trust in god, prevailing posts compared dealing with cancer to a fight and suggested that the person would overcome cancer, and consolations used quotes, song lyrics, and or general reassurances in SM posts. CONCLUSIONS: Findings suggest that when YACC use SM during cancer experiences, they may interpret SM posts as social support or as misalignment of social support requests, which in turn can lead to either improved quality of life or additional distress (respectively). This study adds to the body of knowledge regarding how YACC use social media for social support and may inform future interventions designed to match YACC's desired support with support offered.
Neoplasms , Social Media , Humans , Young Adult , Caregivers , Quality of Life/psychology , Social Support , Neoplasms/therapy , Neoplasms/psychology
BACKGROUND: Food insecurity (FI) often co-exists with other social risk factors, which makes addressing it particularly challenging. The degree of association between FI and other social risk factors across different levels of income and before and during the COVID-19 pandemic is currently unknown, impeding the ability to design effective interventions for addressing these co-existing social risk factors. OBJECTIVE: To determine the association between FI and other social risk factors overall and across different levels of income-poverty ratios and before (2019) and during (2020-2021) the pandemic. DESIGN: We used nationally representative data from the 2019-2021 National Health Interview Survey for our cross-sectional analysis. Social risk factors available in NHIS included difficulties paying for medical bills, difficulties paying for medications, receiving income assistance, receiving rental assistance, and "not working last week". SUBJECTS: 93,047 adults (≥18 years old). KEY RESULTS: Individuals with other social risk factors (except receiving income assistance) were more likely to report FI, even after adjusting for income and education inequalities. While poverty leads to a higher prevalence of FI, associations between FI and other social risk factors were stronger among people with higher incomes, which may be related to their ineligibility for social safety net programs. Associations were similar before and during the pandemic, perhaps due to the extensive provision of social safety net programs during the pandemic. CONCLUSIONS: Future research should explore how access to a variety of social safety net programs may impact the association between social risk factors. With the expiration of most pandemic-related social supports, further research and monitoring are also needed to examine FI in the context of increasing food and housing costs. Our findings may also have implications for the expansion of income-based program eligibility criteria and screening for social risk factors across all patients and not only low-income people.
Food Supply , Pandemics , Adult , Humans , Adolescent , Cross-Sectional Studies , Food Insecurity , Risk Factors
PURPOSE: For sexual and gender minority (SGM) individuals who identify as lesbian, gay, bisexual, transgender, queer, or any other sexual orientation or gender identity (LGBTQ+), the quality of palliative care can depend upon how clinicians view and communicate with this historically minoritized group. Prior literature has demonstrated that SGM patients access care at lower rates, and palliative care clinicians have suggested that SGM patients are more likely to experience discrimination than heterosexual patients. This study examined palliative care clinicians' perspectives and experiences regarding patient communication, care settings, the built environment, and inclusive care for SGM older adults with serious illness. METHODS: The health disparities research framework informed a descriptive qualitative analysis of interview data with palliative care professionals (N = 20) across diverse healthcare settings within Colorado regarding their experiences and beliefs about communication and the care of SGM patients. RESULTS: Three main themes emerged: (1) Limited sexual orientation and gender identity (SOGI) data collection; (2) Organizational and environmental inclusivity, and the "neutral" space viewed as safe; (3) Missing training platforms regarding SGM patients and a lack of opportunity to identify and discuss SGM patient needs. CONCLUSION: Study findings illuminated the following barriers to providing SGM-inclusive care: perspectives around (1) limitations and preferences regarding collection of SOGI data, (2) organizational and environmental inclusivity, and (3) education and training regarding cultural humility and communication with SGM patients. Findings indicate the need for multidimensional research to better understand and address SGM health disparities and promote equitable care.
Background: Sexual minorities-individuals who identify as gay/lesbian, bisexual, or other non-heterosexual individuals-experience higher rates of food insecurity (FI) compared to heterosexual individuals. During the COVID-19 pandemic, discrimination and structural racism, which are known risk factors for food insecurity, were perpetuated against sexual and racial/ethnic minorities. However, to our knowledge, a nationally representative analysis of the impact of the pandemic on food insecurity by sexual minority status and based on race/ethnicity is missing. We aimed to determine the degree of association between FI and sexual minority adults overall, before (2019) and during (2020-2021) the pandemic, and stratified by race/ethnicity. Methods: We used nationally representative data from the 2019-2021 National Health Interview Survey (NHIS). We specified multivariable logistic regression models to determine the association between FI and identifying as a sexual minority adult (≥18 years old), including gay/lesbian, bisexual, and other non-heterosexual individuals. Results: Overall, we only observed FI disparities between bisexuals and heterosexuals (aOR 1.61 [95% CI 1.31-1.99]). Stratified by year, this association was significant only during the pandemic. Stratified by race/ethnicity, non-Hispanic white and non-Hispanic black individuals identifying as bisexual also experienced a significantly higher FI rate than their heterosexual counterparts. Conclusion: Our results may be a manifestation of the disproportionate impact of discrimination on bisexual individuals' FI experiences. With the growing number of legislative bills targeting the rights of sexual minorities, we expect to see a higher burden of FI among bisexuals, particularly, bisexual people of color. Future intersectional research regarding FI among bisexual and racial/ethnic minority individuals would further elucidate how membership in multiple minority groups may contribute to a higher risk of FI.
COVID-19 , Sexual and Gender Minorities , Female , Adult , Humans , Adolescent , Ethnicity , Pandemics , COVID-19/epidemiology , Minority Groups
OBJECTIVE: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. METHODS: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. RESULTS: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). CONCLUSION: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. INNOVATION: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.
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 (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. RESULTS: 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.
Hospice Care , Hospices , Sexual and Gender Minorities , Humans , Male , Female , Caregivers , Gender Identity , Patient Care Team
PURPOSE: The way Hospice Care Team (HCT) members talk about patients and caregivers reflects personal attitudes and experiences, training, and broader social and cultural discourse. This secondary analysis examined the framing language professional hospice care providers used when discussing end-of-life care for LGBTQ+ patients and caregivers. METHODS: Discourse analysis and frame theory informed a secondary, qualitative analysis of focus group data collected with hospice providers (N = 48) in 3 U.S. states regarding their knowledge, experience, and opinions about end-of-life care for LGBTQ+ patients and caregivers. RESULTS: The following four (often overlapping) frames were identified (1) A normalizing frame which dismissed differences between LGBTQ+ patients/caregivers and non-LGBTQ+ individuals in general, and especially at end-of-life (2) A homogenizing frame which cast being LGBTQ+ as an intrinsic, universal characteristic and did not differentiate between different groups, specifically conflating orientation and gender identity (3) A pathologizing frame in which providers related being LGBTQ+ to disease conditions or illegal behaviors (4) An individualizing frame which focused on between-group differences, acknowledged variation, and emphasized the importance of historical context for personalized care. CONCLUSION: Examination of discursive frames used by providers enhances understanding of how social and cultural influences, along with training and experience, shape how HCT members approach working with LGBTQ+ patients and families, and illuminates areas where additional education and training are needed. Our findings support the need for ongoing efforts to improve HCT members' knowledge and skill regarding the needs of LGBTQ+ patients and families within the context of hospice and end-of-life care.
Hospice Care , Hospices , Sexual and Gender Minorities , Humans , Male , Female , Caregivers , Gender Identity , Language
The COVID-19 pandemic has intensified the use of online recruitment and data collection for reaching historically underrepresented minorities (URMs) and other diverse groups. Preventing and detecting responses from automated accounts "bots" and those who misrepresent themselves is one challenge in utilizing online approaches. Through internet-mediated methods, interested LGBTQ+ and non-LGBTQ+ couples facing advanced cancer completed an interest form via REDCap®. Eligible participants received a direct link to electronic consent and surveys in REDCap®. Once responses to the interest form (N = 619) were received, the study PI: 1) assessed participants' entries and non-response survey data (time of completion, rate of recruitment, etc.), 2) temporarily postponed recruitment, 3) sent eligibility questionnaires, consent documents, and validated surveys to N= 10 couples and scrutinized these data for suspicious patterns or indications of untrustworthy data, 4) responded to potential participants via email, and 5) implemented additional strategies for detecting and preventing untrustworthy survey responses. Investigators must consider multi-step eligibility screening processes to detect and prevent the collection of untrustworthy data. Investigators' reliance on internet-mediated approaches for conducting research with diverse, hard-to-reach populations increases the importance of addressing threats to data validity. Ultimately, safeguarding internet-mediated research supports research accessibility and inclusion for URMs while also protecting participant data integrity.
OBJECTIVE: This study examined: (1) Differences among sexual and gender minority (SGM) and non-SGM couples' life course stress, posttraumatic growth (PTG), individual, and dyadic wellbeing while facing cancer, (2) The predictive ability of PTG and life course stress on wellbeing for each dyad member, and (3) The predictive ability of dyad-level PTG and dyad-level life course stress on dyadic wellbeing. METHODS: Thirty SGM and 30 non-SGM dyads (N = 60) completed measures assessing demographics, life course stress, PTG, individual, and dyadic wellbeing. Regression and multilevel models tested predictive hypotheses. RESULTS: Participants were 56.3 years old on average (SD = 13.6) and were together for 24.2 (SD = 14.9) years. SGM participants reported greater life course stress and higher scores on the Depression, Anxiety, and Stress Scales (DASS-21) than non-SGM participants. A dyad members' higher PTG predicted their partners' higher DASS-21 score, dyad members' higher life course stress predicted their own higher DASS-21 score, and patients' higher life course stress predicted their partners' higher DASS-21 score. Greater dyadic PTG predicted greater dyadic wellbeing. CONCLUSIONS: SGM and non-SGM couples experience PTG equally despite SGM couples' greater life course stress and higher DASS-21 scores. Future research is needed to explore how PTG may affect individuals and couples differently.
Neoplasms , Posttraumatic Growth, Psychological , Sexual and Gender Minorities , Humans , Middle Aged , Life Change Events , Sexual Behavior , Gender Identity
Background: In the United States, the cost of cancer treatment can lead to severe financial burden for cancer survivors. The economic impacts of the COVID-19 pandemic compound cancer survivors' financial challenges. Financial burden may be particularly challenging for lesbian, gay, bisexual, transgender, queer, intersex, asexual and other sexual and gender minority (LGBTQIA+) survivors. LGBTQIA+ survivors who are adolescent and young adults (AYA) may face elevated financial burden due to multiple, intersecting identities. Methods: An explanatory sequential mixed methods design was applied, beginning with a survey of AYA cancer survivors in the Mountain West region of the United States. Survey measures included demographics, COVID-19 impacts, the COmprehensive Score for financial Toxicity (COST), Perceived Stress Scale-4 (PSS-4), and PROMIS anxiety and depression scales. Two-way t-tests were used to analyze differences in outcomes between LGBTQIA+ and non-LGBTQIA+ AYAs. All LGBTQIA+ survey participants were invited to complete an interview, and those who agreed participated in descriptive interviews about financial burden due to cancer, COVID-19, and LGBTQIA+ identity. Interviews were audio recorded, transcribed, and analyzed using Dedoose. Results: Survey participants (N=325) were LGBTQIA+ (n=29, 8.9%), primarily female (n= 197, 60.6%), non-Hispanic White (n= 267, 82.2%), and received treatment during COVID-19 (n= 174, 54.0%). LGBTQIA+ interview participants (n=9, 100%) identified as a sexual minority and (n=2, 22.2%) identified as a gender minority. Most were non-Hispanic White (n=6, 66.7%) and had received treatment during COVID-19 (n=7, 77.8%). Statistical analyses revealed that LGBTQIA+ AYAs reported significantly worse COST scores than non-LGBTQIA+ AYAs (p=0.002). LGBTQIA+ AYAs also reported significantly higher PSS-4 (p=0.001), PROMIS anxiety (p=0.002) and depression scores (p<0.001) than non-LGBTQIA+ AYAs, reflecting worse mental health outcomes. High costs of cancer treatment and employment disruptions due to COVID-19 contributed to substantial financial stress, which exacerbated existing mental health challenges and introduced new ones. Conclusions: LGBTQIA+ AYA survivors reported substantial financial burden and psychological distress exacerbated by cancer, the COVID-19 pandemic, and LGBTQIA+ stigma. Given their multiple intersecting identities and potential for marginalization, LGBTQIA+ AYA survivors deserve prioritization in research to reduce financial burden and poor mental health.
BACKGROUND: Peer assessment rubrics (PARs) facilitate equitable distribution of responsibility among group members and help educators assess learners' contributions. This study sought to (1) address health science students' attitudes toward group work and peer assessment, (2) apply evidence-based recommendations and student suggestions to the adaptation of a PAR, and (3) determine the rubric's effectiveness for educators and acceptability among students. METHOD: A PAR was identified, modified, and tested with graduate students (N = 502) in the health sciences. RESULTS: Compared with prior PARs, graduate students rated this rubric as easier to use and more helpful in assessing peers' contributions and explaining their ratings. Educators reported the PAR's utility with diverse health science students across both in-person and virtual platforms. CONCLUSION: Using a PAR that is acceptable to students and useful for faculty may contribute to more meaningful interprofessional experiences, ultimately preparing students for effective interprofessional collaboration. [J Nurs Educ. 2022;61(4):213-216.].
Learning , Peer Group , Humans , Interprofessional Relations
BACKGROUND AND OBJECTIVES: To address the unique characteristics of Alzheimer's disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment. RESEARCH DESIGN AND METHODS: A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice. RESULTS: Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (α = 0.66-0.89) and high test-rest reliability (r = .60-.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable. DISCUSSION AND IMPLICATIONS: The LEAD Guide (Life-Planning in Early Alzheimer's and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.
Vicarious posttraumatic growth is a term used to describe the positive benefits from working with trauma patients who themselves have experienced a highly stressful or traumatic event and resultant growth. Research on vicarious posttraumatic growth remains in its initial stages and findings are inconsistent, leading to the need for additional research. A literature review was performed to ascertain the methodologies guiding research on vicarious posttraumatic growth and identify gaps in knowledge. This study found that 71% of research studies examined used survey instruments to measure vicarious posttraumatic growth and 87% of these studies utilized the Posttraumatic Growth Inventory (α = 0.90). This instrument was not designed to measure secondary trauma. In order to support clinicians who are at high risk of adverse outcomes, the knowledge of vicarious posttraumatic growth must be broadened by conducting research with varying methodologies, among other populations, and by developing effective survey instruments to operationalize this concept.
Compassion Fatigue/epidemiology , Health Personnel/psychology , Posttraumatic Growth, Psychological , Research Design , Terminal Care/psychology , Adaptation, Psychological , Empathy , Female , Humans , Male
