The Intersection of Age and HIV Status for Black Sexual Minority Men (BSMM): A Social Network Analysis.

Advancements in treatment have resulted in increased life expectancy for individuals living with HIV. However, there is a dearth of literature focused on the intersection of age and HIV status, particularly for older Black sexual minority men (SMM) who are disproportionately impacted by HIV. This study aimed to examine the intersecting effect of age and HIV status on Black SMM social networks in a sample from the Social Network and Prevention Study. Participants were 18 years of age or older, identified as cis-gender Black or African American, self-identified as SMM, reported unprotected sex within the past six months, and resided in Baltimore city or a surrounding county. The sample was divided into four categories by age (e.g., young, mature) and HIV status (e.g., positive, negative). Of the sample, 167 men were (a) Young & HIV negative, 116 men were (b) Young & HIV positive, 44 men were (c) Mature & HIV negative, and 42 men were (d) Mature & HIV positive. Among the four groups, mature men who were HIV positive had the fewest average number of alters who knew they were SMM. There was also overlap in the range of age of sexual partners across the four groups, ranging from 17 to 53.5 (Group 1), 20-60 (Group 2), 29.5-60 (Group 3), and 23-63 (Group 4) years of age. Although a cross-sectional analysis, our findings suggest value in life course-informed research and practice for providing HIV and sexual health programming. Focus on services provided by community organizations may help mitigate existing disparities.

Social support network factors associated with verbal fluency among vulnerable persons living with HIV.

Vulnerable persons living with HIV (PLWH) are at high risk of cognitive impairment and challenges accessing quality social support in later life. Impaired verbal fluency (VF), a cognitive domain linked to HIV, could impede social support associated with health and well-being for already vulnerable PLWH. We examined the structure of social support, using latent class analysis, and the associations among quantity, specific forms and quality of social support and VF among PLWH. Participants enrolled in the BEACON study (n = 383) completed the Controlled Oral Word Association test (COWAT) and a social support network inventory. Latent class analysis with count variables was used to determine the number of classes of PLWH based on their social network characteristics. The majority of PLWH were male (61.4%) and African American (85.9%). Two distinct latent classes, with a major distinction in the number of network members who were female, knew participants' HIV status and HIV medication usage. Fewer support network members (ß = -.13, p < 0.01), greater negative interactions (ß = -.16, p < 0.01), and less positive interactions with network members (ß = .15, p < 0.05) were significantly associated with lower COWAT scores. Comprehensive screening of high-risk PLWH and early intervention with those with cognitive impairment are important for addressing social support needs.

Acceptability and Feasibility of a Pain and Depressive Symptoms Management Intervention in Middle-Aged and Older African American Women.

Background and Objectives: The intersection of race, gender, and age puts older African American women at high risk of experiencing comorbid pain and depressive symptoms. The purpose of this study was to assess the feasibility and acceptability of a 12-week behavioral activation intervention to target self-selected goals related to pain and depressive symptoms in middle-aged and older African American women. Research Design and Methods: This randomized waitlist control study included 34 self-identified African American women, 50 years of age or older, with moderate-to-severe chronic pain and depressive symptoms. The intervention consisted of 8 in-person or virtual 1-hour visits with a nurse. Follow-up acceptability assessments were conducted with 10 participants. Results: The average age of the participants was 64.8 (standard deviation [SD] 10.5). They reported an average pain intensity score of 7.0 (SD 1.9) out of 10 and an average Patient Health Questionnaire-9 depressive symptoms score of 11.9 (SD 4.0) at baseline. Of the 34 participants who consented, 28 (82.4%) women started the intervention and 23 (82.1%) completed the intervention. Participants described the study as useful and beneficial. Participants recommended including a group component in future iterations. Effect sizes at 12 weeks were -0.95 for depressive symptoms indicating a substantial decrease in experienced depressive symptoms, but pain intensity was virtually unchanged (+0.09). Discussion and Implications: The findings of this study demonstrate that the intervention is acceptable among middle-aged and older African American women and their personal goals were met. Including a group component and identifying effective ways to decrease attrition rates will be key in the next steps of development for this intervention. It is crucial to provide tailored, nonpharmacological approaches to pain, and depression symptom management in older adult populations who experience inequities in pain and mental health outcomes. This study emphasizes the importance of participant-driven goal-setting interventions.

A protocol for a wait list control trial of an intervention to improve pain and depressive symptoms among middle-aged and older African American women.

BACKGROUND: Pain and depression frequently co-occur among older adults with comorbidities and can exacerbate one another. The intersection of race, gender and age puts older African American women at high risk of experiencing comorbid pain and depression. The purpose of this study is to test the feasibility and acceptability of a 12-week behavioral activation intervention called DAPPER (Depression and Pain Perseverance through Empowerment and Recovery) that uses non-pharmacological, tailored strategies to target pain and mood symptoms. We will measure pain intensity and depressive symptoms as outcomes, although we are not powered to test differences. METHODS: We describe the protocol for this study that uses a randomized waitlist control design to examine acceptability and feasibility of an intervention. The study population is comprised of self-identified African American women, 50 years of age or older with chronic pain and who self-report of depressive symptoms. Participants must also be pre-frail or frail and have an ADL or IADL limitation. The intervention consists of eight 1-2-h visits with a nurse interventionist via in-person or virtual telecommunication methods and two visits for non-invasive specimen collection. The primary outcomes include goal attainment, pain and depressive symptoms. Secondary outcomes include stress, frailty, and communication with providers. Follow-up qualitative interviews are conducted with participants to assess intervention acceptability. DISCUSSION: Findings from this pilot study will provide further evidence supporting the use of non-pharmacological techniques to intervene in the cycle of pain and depression among an at-risk sub-population.

Analysis of action planning, achievement and life purpose statements in an intervention to support caregivers of persons with heart failure.

BACKGROUND: Caregivers of persons living with heart failure (HF) experience uncertainty related to heart failure trajectory and caregiving demands. Caregiver Support is a nurse-led intervention consisting of a well-being assessment, development of a life purpose statement, and action planning related to self-care and support for caregivers. OBJECTIVES: The goal of this study was to describe the caregivers' action plans, action plan achievement and life purpose statements. METHODS: We used inductive content analysis to code life purpose statements and action plans by 2 coders. Descriptive statistics were used to describe the average number of action plans set per caregiver, the average number of themes coded per action plan and life purpose statement, and the status of goal achievement (i.e., by thematic domain, subdomains). Goal achievement was defined categorically: Achieved, not achieved, and not assessed. The achievement rate was calculated as the proportion of achieved action plans out of the total number of assessed action plans. RESULTS: The sample (n = 22) was predominantly women, spousal caregivers, and an average age of 62±14.2 years. Thirty-six percent of caregivers were Black and 41% reported financial strain. Action plans comprised five categories: personal health and well-being, social support, home environment, instrumental support and other. The most common topics of life purpose statements were faith and self-care/actualization. Of 85 action plans, 69 were assessed and 66.7% were achieved. CONCLUSIONS: These findings highlight the diversity of values and needs of caregivers and provides insights for additional person-centered support.

"You think you got it down and then the moment comes": The certainty of uncertainty in end-of-life decision making.

OBJECTIVES: Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life. METHODS: The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process. RESULTS: We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician. SIGNIFICANCE OF RESULTS: Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.

Patient and provider perspectives on using goal attainment scaling in care planning for older adults with complex needs.

BACKGROUND: Assess the feasibility of using goal attainment scaling (GAS) in care planning for older adults with complex needs. GAS is an individualized approach to goal setting and follow up using a quantified scale. To date, little is known about the feasibility of GAS among this population. METHODS: We conducted a qualitative study with a sample of 28 older adults and 23 providers from diverse settings to evaluate the value and challenges of this approach. We conducted semi-structured interviews and iteratively coded and analyzed interview transcripts for themes related to value, challenges, and implementation. RESULTS: Most older adults and providers reported that the GAS approach added value to the care encounter. GAS supported collaboration and patient accountability for their goals, though it could be demotivating to some patients. Some older adults and providers noted that GAS could be confusing and that it was uncomfortable to talk about negative outcomes (i.e., the - 2 and - 1 boxes of the scale). Factors that facilitated implementation included using visual copies of the GAS forms, having an established patient-provider relationship, practicing the approach, and having previous goal-related clinical training. CONCLUSIONS: GAS was feasible to implement across diverse settings, and, despite challenges, both older adults and providers reported that it added value to care planning encounters with the potential to improve delivery of person-centered care. Further efforts to demonstrate the applicability and benefit of this method for older adults are warranted, particularly to address implementation of the approach.

Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.

CONTEXT: Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican. OBJECTIVES: We describe how older adult physicians as prospective patients (hereafter "physician-patients") and family caregivers of physician-patients view burden in care at the end of life. METHODS: Interviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts. RESULTS: Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care. CONCLUSION: Physician-Patients ' clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.

Refining a Taxonomy of Goals for Older Adults With Functional Limitations and Their Caregivers to Inform Care Planning.

Purpose: The purpose of the study is to capture goals expressed by older adults with functional limitations and their caregivers. Methods: Through focus groups and interviews, 76 older adults with ≥1 activity of daily living limitation and 28 family/friend caregivers were asked about what mattered most to them and their goals for care. Transcripts were coded using an existing taxonomy. Goals that did not fit the taxonomy were assigned new codes. Results: We identified more than 50 goals in eight domains. Domains included (a) Medical Care; (b) Quality of Life: Physical; (c) Quality of Life: Social and Emotional; (d) Access to Services and Supports; (e) Caregiver Needs and Concerns; (f) End of Life; (g) Independence; and (h) Acceptable Housing. Conclusion: While there is overlap between identified goals and the existing taxonomy, new goals emerged. The goal domains identified could serve as a framework to improve and measure the quality of goal-oriented care for older adults with complex needs.

Standardised approach to measuring goal-based outcomes among older disabled adults: results from a multisite pilot.

BACKGROUND: Older adults with complex care needs face trade-offs in determining the right course of treatment. The Centers for Medicare and Medicaid Services identified 'Care is personalized and aligned with patient's goals' as a key meaningful measures category, yet existing quality measures typically assess disease-specific care and may not effectively evaluate what is most important to older adults and family members. Measures based on individualised goals and goal-based outcomes have been proposed as an alternative but are not routinely assessed or implemented. OBJECTIVES: We tested two approaches to assessing goal-based outcomes that allow individuals to set goals based on their own priorities and measure progress-(1) goal attainment scaling and (2) existing, validated patient-reported outcome measures (PROM). METHODS: A prospective cohort study of feasibility in seven sites (33 clinicians) of the two approaches with 229 individuals. We calculated performance on a measure of achievement of individually identified goals. RESULTS: Both approaches were successfully implemented in a non-randomly selected population, and a goal-based outcome could be calculated for 189 (82%) of participants. Most individuals met their goal-based outcome (73%) with no statistical difference between the goal attainment scaling approach (74%) and the patient-reported outcomes approach (70%). Goals were heterogeneous ranging from participating in activities, health management, independence and physical health. Clinicians chose to use goal attainment scaling (n=184, 80%) more often than PROMs (n=49, 20%) and rated the goal attainment scaling approach as useful for providing patient care. CONCLUSION: Goal-based outcomes have the potential to both improve the way healthcare is provided and fill a critical gap in value-based payment.