Advance Care Planning in the Context of Dementia: Defining Concordance.

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.

Establishing a Spanish-Focused Advance Care Planning Educational Session for Latina Breast Cancer Survivors.

Minoritized groups including Latinos are less engaged in awareness and discussion of advance care planning (ACP) due to the United States English-dominated healthcare system that contributes to systemic inequities related to language and cultural barriers. Explicit interventions, such as a sole Spanish-speaking educational session, may begin discussions of ACP among Latina breast cancer survivors. However, what constitutes a culturally sensitive Spanish-language ACP educational session is currently unknown. To address this need, this current project (1) presented a nurse-led ACP educational session and (2) held a focus group to assess the acceptability of the Spanish-focused ACP educational session to a Spanish-speaking group of Latina breast cancer survivors. Thematic analysis revealed four themes: (1) familial involvement, (2) need for advance care planning education, (3) addressing language and cultural barriers, and (4) culturally sensitive and informative resources. Features of a culturally sensitive Spanish-focused ACP educational session were identified and found to reduce current barriers that hinder ACP conversations in Latina breast cancer survivors.

Exploring the intersections of college student poverty, grief, and racial/ethnic identity: a scoping review protocol.

BACKGROUND: College students who experience the negative impact of poverty, such as food, financial, and housing insecurity, are at higher risk for poor academic performance. One recent study examined grief in a college student sample and found students with a diverse racial or ethnic background were more likely to experience prolonged grief disorder, however, did not examine poverty in their sample. To date, no known reviews have examined poverty by racial and ethnic identity and the experience of grief due to the death of a family member or friend, and no reviews have examined how these three factors relate to interventions designed to support student academic performance and degree completion. METHODS: Our aim is to map the primary literature reporting on college students of any age who identify or are identified as non-white racial or ethnic groups who experience poverty and grief due to the death of a family member or friend. The mapping strategy includes extracting the various types of interventional support of academic performance and degree completion delivered from campus or community services in any geographic setting worldwide. We will conduct our scoping review with guidance from the latest version of the JBI Manual for Evidence Synthesis. Utilizing the framework as outlined by Arksey and O'Malley, we will conduct our scoping review with Arksey's five stages: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing, and reporting the results. For transparency and reproducibility, we will adhere to the PRISMA reporting guidelines. DISCUSSION: The purpose of this scoping review is to map the primary literature reporting college students, regardless of their age, who belong to non-white racial or ethnic groups and face poverty and grief resulting from the loss of a family member or friend. This analysis includes mapping the various types of intervention and support available both on and off campus, in any global setting, with the aim of enhancing academic performance and facilitating degree completion. The results of this review may inform the further research needed in this area to help prevent poor academic performance and dropout for many vulnerable college students. The results may be of value, particularly to college administrators developing prevention and interventional programs to support college student success. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework ( https://osf.io/enuwt ).

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.

Due to the insidious progression of Alzheimer's disease and related dementias (ADRD), surrogate decision-makers typically make medical and long-term-care decisions for a care recipient, most often a family care partner. Unfortunately, many care recipient/care partner dyads have failed to engage in advance care planning or have lost the opportunity to do so due to the cognitive decline of the care recipient. To address this need, our team created a validated dementia-focused advance care planning tool known as the LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias). With funding from the National Alzheimer's Association and in consultation with our community advisory board, we developed a preliminary web-based intervention. This intervention integrates the LEAD Guide with self-paced educational modules that lead dyads through conversations and dementia-focused advance care planning processes. In this concept paper, we describe the aims of our funded R01 clinical trial (National Institute on Aging), where we aim to refine our preliminary web-based platform for use in a 5-month mixed-method NIH Stage-1 behavioral intervention. Using a sample of diverse community-based ADRD dyads (n = 60), we aim to: 1) describe the acceptability, usability, and feasibility of the intervention, 2) assess the initial efficacy of the intervention on the primary outcome (decision-making self-efficacy), and secondary outcomes (relationship quality, subjective well-being, anxiety) as perceived by both the care recipient and the care partner, and 3) examine advance care planning congruence as a mechanism of action. The LEAD clinical trial addresses public health challenges by guiding and supporting families through challenging advance care planning conversations, facilitating the transfer of knowledge regarding care preferences and values from the care recipient to the care partner, with the ultimate goal of improving the quality of life for both individuals with ADRD and their care partners.

Experiences of Homeless Recipients of Social Model Hospice Care: A Photovoice Exploration.

Homelessness and caregiver insecurity are barriers to accessing hospice for end-of-life care. Some communities have implemented a community-based social model of hospice care, and reports of its characteristics and outcomes are growing in hospice and homeless literature. This case report explored the experiences of social model hospice recipients using photovoice, a community-based participatory method to photograph meaningful aspects of care. Participants (n = 3) took photos (n = 93), journaled, and participated in semistructured interviews as co-analyzers. Through deductive codes from the literature and inductive analysis of data, 6 themes were identified: having a physical location to receive care, involving the community, having spiritual needs attended to, acknowledging family/family of choice, connecting with animals, and feeling cared for. Participants offered few suggestions to improve care. Social model hospice provided a location for care, funding, and social support to address housing and caregiver insecurity. Results corroborated the social model hospice concept (antecedents, attributes, consequences). Findings add to the growing literature with implications for communities and leaders looking to start or improve care. Results suggest that photovoice may be a feasible method for eliciting firsthand experiences of residents. Findings may guide discussions about patient-reported aspects of care for a more accurate understanding of meaningful social model hospice care.

Bots and nots: Safeguarding online survey research with underrepresented and diverse populations.

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.

Posttraumatic growth and life course stress predict dyadic wellbeing among sexual and gender minority (SGM) and non-SGM couples facing cancer.

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.

Aging Services Workers in the Pandemic: Voiced Experience of Senior Center Staff and Case Workers.

We conducted a qualitative descriptive study, using focus groups to understand the experience and perspective of the older adult service staff during both the first and second wave of the COVID-19 pandemic. Participants expressed the need for more education and training and ongoing psychosocial support, yet demonstrated sustained resiliency coping, work self-efficacy, and a deepened dedication to community residing older adult clients.

Communication Disparities between Nursing Home Team Members.

Optimal care in nursing home (NH) settings requires effective team communication. Certified nursing assistants (CNAs) interact with nursing home residents frequently, but the extent to which CNAs feel their input is valued by other team members is not known. We conducted a cross-sectional study in which we administered a communication survey within 20 Utah nursing home facilities to 650 team members, including 124 nurses and 264 CNAs. Respondents used a 4-point scale to indicate the extent to which their input is valued by other team members when reporting their concerns about nursing home residents. We used a one-way ANOVA with a Bonferroni correction. When compared to nurses, CNAs felt less valued (CNA mean = 2.14, nurse mean = 3.24; p < 0.001) when reporting to physicians, and less valued (CNA mean = 1.66, nurse mean = 2.71; p < 0.001) when reporting to pharmacists. CNAs did not feel less valued than nurses (CNA mean = 3.43, nurse mean = 3.37; p = 0.25) when reporting to other nurses. Our findings demonstrate that CNAs feel their input is not valued outside of nursing, which could impact resident care. Additional research is needed to understand the reasons for this perception and to design educational interventions to improve the culture of communication in nursing home settings.

Working Dynamics of Licensed Nurses and Nurse Aides in Nursing Homes: A Scoping Review.

Collaboration between licensed nurses (LNs) and nurse aides (NAs) is critical in the provision of quality care for residents living in nursing homes (NHs). The current scoping review explores how working dynamics between LNs and NAs in the NH setting are researched and described in the literature. Thirty-five articles were identified and reviewed that address the LN/NA relationship in the context of (a) the LN role as a supervisor and leader; (b) variation in structure; (c) expanding, understanding, and supporting staff roles; and (d) communication. We found that the LN/NA relationship has been primarily explored through the LN lens and often studied in the context of role expansion and revision associated with new models of care. Our contribution to the literature includes the following main points: efforts to improve LN/NA collaboration may be hindered without substantial structural change; collaboration may be limited within the hierarchal LN/NA relationship; LNs and NAs in NHs need greater support, recognition, and empowerment; and NAs require a representative voice. [Journal of Gerontological Nursing, 48(5), 27-34.].

Utility and Acceptability of a Peer Assessment Rubric to Improve Interprofessional Learning.

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.].

The Development and Validation of a Communication Survey Instrument for Long-term Care Staff.

Information transfers in long-term care (LTC) settings between and among providers, staff, residents, and family caregivers are often fragmented. In order to identify training needs to improve communication, a survey instrument was developed and refined to assess the self-efficacy of LTC staff in communicating with staff, providers, residents, and caregivers. This 11-item survey instrument, based on a literature review, covered four key concepts (mutual respect, recognizing and responding to sensory deficits, limited health literacy, and changes in condition) relevant to communicating health information in LTC settings. Ten content experts evaluated each survey item using a 4-point scale. The content validity of the survey was established by using the content validity index to assess results at the item and scale levels. All items scored 0.90 or greater and were retained. Future work should entail broad-scale validation and testing of this survey across the United States. By assessing the self-efficacy of LTC staff in communicating with the interprofessional team, leadership teams can design personalized interprofessional continuing education activities aimed at improving communication skills. [J Contin Educ Nurs. 2022;53(3):123-130.].

Collaboration Between Licensed Nurses and Certified Nurse Aides in the Nursing Home: A Mixed Methods Study.

The current mixed methods study explored how nursing team collaboration is perceived and experienced in four nursing homes (NHs) in the western United States. Licensed nurses (LNs) and certified nurse aides (CNAs) completed two survey tools to assess their perception of collaboration and team-work in their current work environment. LNs and CNAs were paired and interviewed individually and as a caregiving pair to explore the lived experience of collaboration in NH residents' care. Quantitative survey results were analyzed, and participants reported a collaborative working environment with equally strong ratings in the following categories: partnership, cooperation, and coordination; they agreed with statements reflective of teamwork, including team structure, leadership, situation monitoring, mutual support, and communication. No significant differences were found between LN and CNA responses or between team members in any of the four participating facilities. Qualitative survey data were analyzed using a thematic analysis approach. Findings revealed five primary themes, including essential elements in successful team collaboration-perspective, coworker connection, communication, mutual support, and "it makes a difference"-and ways teamwork and collaboration impact resident care. These findings provide rich insights into successful LN/CNA collaboration for academic and clinical LN and CNA educators. [Research in Gerontological Nursing, 15(1), 16-26.].

If we knew then what we know now: The preparedness experience of pre-loss and post-loss dementia caregivers.

We evaluated the relationship between grief preparedness and grief experience in 106 family caregivers anticipating or who had experienced the death of a family member with dementia. Using a phenomenological lens to discern a process of meaning-making in narratives, we found preparation that included positive construction of memories, death as the end of suffering, relationship resolution, and shared construction of meaning were associated with positive grief. Those caregivers who experienced the family member's decline as traumatic, caregiver role loss, unavailable support, and difficulties creating a new life reported inadequate death preparation, and difficulty making meaning of the illness and death.

Pre-loss group therapy for dementia family care partners at risk for complicated grief.

INTRODUCTION: Dementia family caregiving may span more than a decade and places many family care partners (CPs) at risk for poor bereavement outcomes; estimates of complicated grief in bereaved dementia family CPs range from 10% to 20%. We adapted our efficacious complicated grief group therapy intervention for bereaved dementia caregivers for soon-to-be bereaved dementia CPs at risk for complicated grief to facilitate healthy death preparedness and eventual bereavement-pre-loss group therapy (PLGT). METHODS: In this Stage IB pilot intervention study, we implemented and evaluated PLGT in three psychotherapy group cohorts with family CPs at-risk for complicated grief whose person living with dementia (PLWD) had a life expectancy of 6 months or less and resided in a nursing home. PLGT is a 10-session multi-modal psychotherapy administered by social workers. RESULTS: Participants in PLGT realized significant improvement in their pre-loss grief and in reported preparedness for the death of their family member, and participants evidenced lowered pre-loss grief severity and improvement, as measured by facilitators. Participants also realized significant improvement in meaning making, particularly as a sense of peace and a reduction of loneliness. DISCUSSION: The process and treatment elements of the PLGT intervention affirm the value of specialized care for those dementia family CPs at risk for complicated grief, as the PLGT groups demonstrated a steady progression toward improvement collectively and individually. PLGT participants realized statistical and clinical improvement across pre-loss grief measures suggesting that their risk for complicated grief risk was mitigated, and they were better prepared for the death of their PLWD.

Emotional expression in conversations about advance care planning among older adult home health patients and their caregivers.

OBJECTIVES: To examine patient and caregivers' differences in emotional expression and explore topics associated with emotional expression during advance care planning (ACP) discussions. METHODS: Older adult home health patient-caregiver dyads participated in video-recorded ACP conversations as part of a collaboration-focused intervention study. Recordings were coded in Noldus Observer XT, analyzed with descriptive statistics, Cochran-Mantel-Haenszel and Breslow-Day test, and integrated with qualitative content analysis. RESULTS: Eighteen patient-caregiver dyads were purposively recruited. Participants were mostly female (11 patients; 13 caregivers). Mean ages were 68.22 (SD = 9.64) for patients and 61.28 (SD = 13.60) for caregivers. Emotional expression (depth of emotion, positive and negative valence) was similar across patients and caregivers. Conversations centered on positive and negative decisional, relational, and existential topics. CONCLUSIONS: This study explored emotional expression and identified topics associated with emotion for patients and caregivers during collaborative ACP. Findings suggest that collaboration in ACP can have positive relational aspects for patient-caregiver dyads, while negative emotions can also be distressing. PRACTICE IMPLICATIONS: This study describes the range of emotions that are common during patient and caregiver ACP discussions. Clinical implications for the assessment of caregiver support and awareness of the interdependent nature of decision making is discussed.

Live hospice discharge: Experiences of families, and hospice staff.

OBJECTIVE: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. METHODS: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). RESULTS: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. CONCLUSION: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. PRACTICE IMPLICATIONS: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.

Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers.

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.