"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one.

Cultural Protection from Polysubstance Use Among Native American Adolescents and Young Adults.

Reservation-based Native American youth are at disproportionate risk for high-risk substance use. The culture-as-treatment hypothesis suggests aspects of tribal culture can support prevention and healing in this context; however, the protective role of communal mastery and tribal identity have yet to be fully explored. The objectives of this study were to investigate (1) the relationship between cultural factors and high-risk substance use, which includes polysubstance use, early initiation of alcohol and illicit drugs, and binge drinking, and (2) substance use frequency and prevalence of various substances via cross-sectional design. Multiple logistic regression modeling was used to analyze data from 288 tribal members (15-24 years of age) residing on/near the Fort Peck Reservation in the Northern Plains. When controlling for childhood trauma and school attendance, having at least a high school education (OR = 0.434, p = 0.028), increased communal mastery (OR = 0.931, p = 0.007), and higher levels of tribal identity (OR = 0.579, p = 0.009) were significantly associated with lower odds of polysubstance use. Overall prevalence of polysubstance use was 50%, and binge drinking had the highest single substance prevalence (66%). Prevalence of early initiation of substances (≤ 14 years) was inhalants (70%), alcohol (61%), marijuana (74%), methamphetamine (23%), and prescription drug misuse (23%). Hydrocodone, an opioid, was the most frequently misused prescription drug. Findings indicate programs focused on promoting education engagement, communal mastery, and tribal identity may mitigate substance use for Native American adolescents living in high-risk, reservation-based settings.

Predictors of Depressive Symptoms in Caregivers of Children With Poorly Controlled Asthma: Is the Neighborhood Context Important?

Children residing in low-income neighborhoods are disproportionately affected by asthma morbidity and mortality. Neighborhood violence has been explored in relationship to child morbidity and health and developmental outcomes, but less is known about the relationship of violence to caregiver mental health. The purpose of this study was to examine the relationship of neighborhood violent crime victimization (objective and subjective measures), perceptions of community well-being and support, and depressive symptoms among a sample of primarily single female caregivers of children with uncontrolled asthma. This is a secondary analysis of baseline data obtained from a randomized controlled trial of a home-based environmental control intervention for children aged 3 to 12 years, who were primarily African American, and diagnosed with persistent, uncontrolled asthma. Results showed that both objective and subjective measures of crime, particularly in those with relatively low life stress (P < .001), limited education of the caregiver (P < .001), and fewer children (P < .01) in the household had direct associations with depressive symptoms in caregivers of children with uncontrolled asthma. Neighborhood perceptions of satisfaction and a sense of community, as well as perceptions of social support, were not associated with depressive symptoms. Our findings emphasize the need to screen for depressive symptoms, life stress, as well as both objective and subjective perceptions of neighborhood violence among caregivers of children with poorly controlled asthma. Furthermore, when providing holistic care to these caregivers, stress reduction and the provision of mental health resources are paramount.

Using Critical Service-Learning Pedagogy to Prepare Graduate Nurses to Promote Health Equity.

BACKGROUND: Despite calls from professional organizations to prepare a nursing workforce with the requisite skills to address social determinants of health (SDOH), there is little guidance for nurse educators about how to actively promote student learning of these complex issues. METHOD: We applied a critical service-learning (CSL) pedagogy to enhance graduate public health nursing curriculum and support learner skill building in approaches to combat health disparities by addressing the underlying social conditions. RESULTS: Course content and critical reflection activities were built incrementally across four courses and semesters to introduce and apply antioppressive frameworks, encourage students to examine their personal identities of privilege and oppression, and examine historical context and systems of power in public health settings. CONCLUSION: CSL supports student development of structural competence and their understanding of approaches that can dismantle inequitable systems by addressing SDOH that contribute to health disparities. [J Nurs Educ. 2021;60(1):38-43.].

A conceptual model for establishing collaborative partnerships between universities and Native American communities.

BACKGROUND: Collaborative partnerships are increasingly recognised as valuable and essential tools for improving community health. AIM: To present the process used to establish a collaboration between a university and a community, including a description of the conceptual model that provided guidance for one such project. DISCUSSION: While numerous studies explore the potential benefits of such efforts, few have addressed how to initiate partnerships. The initiation phase and formative work required are arguably the most crucial step, as they become the foundation on which all future efforts are built and through which sustainability is achieved. CONCLUSION: These formative steps are essential when working with Native American communities, which experience severe health disparities, but for which limited initiatives are available for community health interventions. IMPLICATIONS FOR PRACTICE: The approach used in this project can guide the establishment of a university-community collaboration, from initiation to evaluation.

Children with poorly controlled asthma: Randomized controlled trial of a home-based environmental control intervention.

BACKGROUND: Few trials have tested targeted environmental control (EC) interventions based on biomarkers of second hand smoke (SHS) exposure and allergen sensitization in reducing asthma emergency department (ED) visits in children with poorly controlled asthma. METHODS: Overall, 222 children with poorly controlled asthma were randomized into a home-based EC intervention (INT) or control (CON) group and followed for ED visits over 12 months. All children received allergen-specific IgE serologic testing and SHS exposure biomarker testing to inform the EC intervention. Pharmacy data was examined for asthma medication fills. Cox proportional hazards and multivariate regression models were performed to examine factors associated with repeat ED visits. RESULTS: There was no difference in increased risk of >1 ED visit at 12 months between INT and CON groups. Most children (75%) had moderate/severe persistent asthma. Over half (56%) had SHS exposure and 83% tested positive for >1 allergen sensitization. Among children without SHS exposure, the median time to first recurrent ED visit differed by group (CON: 195; INT: >365 days) after adjusting for child age, allergic sensitization, medication fills prior to baseline, controller medication use, and the interaction between group status and SHS exposure. Children who had positive allergic sensitizations, younger, had increased controller medication use and randomized to the CON group and had no SHS exposure had increased risk for a repeat ED visit over 12 months. CONCLUSIONS: In this study, a home-based EC intervention was not successful in reducing asthma ED revisits in children with poorly controlled asthma with SHS exposure. Allergic sensitization, young age, and increased controller medication use were important predictors of asthma ED visits.

Association between second hand smoke (SHS) exposure and caregiver stress in children with poorly controlled asthma.

Objective: Urban children with asthma experience high rates of second hand smoke (SHS) exposure. The objective was to examine whether SHS exposure is associated with symptom frequency in children with poorly controlled asthma. Methods: Children were enrolled in a RCT to test the efficacy of an environmental control behavioral intervention versus an attention control group and followed over 12 months. SHS exposure assessed using salivary cotinine measurement. Frequency of child asthma symptoms, healthcare utilization, household smoking and caregiver daily life stress were obtained via caregiver report. Time of enrollment was recorded to assess seasonal factors. Symptom days and nights were the primary outcomes. Multivariable models and odds ratios examined factors that best predicted increased frequency of daytime/nighttime symptoms. Results: Children (n = 222) with a mean age of 6.3 (SD 2.7) years, were primarily male (65%), African American (94%), Medicaid insured (94%), and had poorly controlled asthma (54%). The final multivariable model indicated symptoms in the fall (OR 2.78; 95% CI 1.16, 6.52) and increased caregiver daily life stress (OR 1.13, 95% CI 1.02, 1.25) were significantly associated with increased symptom days when controlling for cotinine level, intervention status, child age and home and car smoking restrictions. Conclusions: There was no impact of SHS exposure on increased symptom frequency. High caregiver daily life stress and symptoms in fall season may place children with asthma at risk for increased day/nighttime symptoms. Close monitoring of symptoms and medication use during the fall season and intervening on caregiver life stress may decrease asthma morbidity in children with poorly controlled asthma.

Improving Care of Inner-City Children with Poorly Controlled Asthma: What Mothers Want You to Know.

INTRODUCTION: Low-income caregiver perspectives on asthma management are understudied but may illuminate strategies to improve care delivery and child outcomes. METHOD: Purposive sampling methods were used to recruit 15 caregivers of children with frequent asthma emergency department visits. Interviews explored how poverty and stress affect asthma management. Grounded theory coding techniques were used to analyze the data. RESULTS: Participants were the biological mother (100%) and were poor (75% had mean annual income ≤ $30,000). Their children (mean age = 6.9 years) were African American (100%), enrolled in Medicaid (100%), and averaged 1.5 emergency department visits over the prior 3 months. Four themes emerged: (a) Deplorable Housing Conditions, (b) Allies and Adversaries in School-Based Asthma Management, (c) Satisfaction With Asthma Health Care Delivery, and (d) Prevalent Psychological Distress. DISCUSSION: Impoverished caregivers of children with frequent asthma emergency department visits describe stress that is multifaceted, overwhelming, and difficult to eradicate. Their experiences underscore the need for improved school-based asthma management and family-centered approaches to health care delivery.

The Chronicity of Depressive Symptoms in Mothers of Children With Asthma.

Depression can disproportionately affect low-income women. The purpose of this study was to explore the chronicity of depressive symptoms in a sample of 276 low-income inner-city mothers of children with high-risk asthma. The aims were to identify factors (asthma health status, stress, social support) associated with change in depressive symptomatology over 12 months as well as to ascertain what factors are most consistently associated with depressive symptoms. Using latent growth curve analysis, demographic variables, asthma severity, stress, and social support failed to explain changes in depressive symptomatology. The growth curve models, however, were predictive of Center for Epidemiologic Studies-Depression Scale (CES-D) scores at distinct time points indicating that higher daily stress and lower social support were associated with increased depressive symptoms. Our data highlight the chronic nature of depressive symptoms in low-income mothers of children with poorly controlled asthma. Integrating questions about caregiver psychological state across all clinical encounters with the family may be indicated.

Very Poorly Controlled Asthma in Urban Minority Children: Lessons Learned.

BACKGROUND: Very poorly controlled (VPC) asthma in children is associated with ongoing acute exacerbations but factors associated with VPC are understudied. OBJECTIVE: To examine the risk factors associated with VPC asthma in urban minority children. METHODS: This descriptive study examined asthma control levels (well-controlled [WC], not well-controlled [NWC], and VPC) at baseline and 6 months in children participating in an ongoing randomized controlled trial of an emergency department/home environmental control intervention. Data collection occurred during the index emergency department visit and included allergen-specific IgE and salivary cotinine testing and caregiver interview of sociodemographic and child health characteristics. Follow-up data were collected at 6 months. Unadjusted analyses examined the association of sociodemographic and health characteristics by level of asthma control. Multivariate analysis tested significant factors associated with VPC asthma at 6 months. RESULTS: At baseline most children were categorized with VPC asthma (WC, 0%; NWC, 47%; VPC, 53%) and rates of VPC minimally improved at 6 months (WC, 13%; NWC, 41%; VPC, 46%). Risk for VPC asthma was twice as likely in children with allergic rhinitis (odds ratio [OR], 2.42), having 2 or more primary care provider asthma visits within the past 3 months (OR, 2.77), or caregiver worry about medication side effects (OR, 2.13) and 3 to 4 times more likely when asthma control was assessed during the fall or spring season (OR: fall, 3.32; spring, 4.14). CONCLUSIONS: Improving asthma control in low-income, high-risk children with VPC asthma requires treatment of comorbidities, attention to caregiver medication beliefs, and adept use of stepwise therapy.

The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making.

CONTEXT: Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. OBJECTIVES: To test the effectiveness of an intervention to help surrogate decision makers. METHODS: One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL); 163 completed baseline interviews and underwent the intervention. RESULTS: Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04; adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). CONCLUSION: TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

Characterization of Stress in Low-Income, Inner-City Mothers of Children with Poorly Controlled Asthma.

The goal of this longitudinal analysis was to characterize factors associated with the experience of life stress in low-income, inner-city mothers of minority children with high-risk asthma.Participants (n = 276) reported on family demographics, child asthma control and healthcare utilization, social support, contemporary life difficulties (housing, finances, violence exposure) measured by the validated Crisis in Family Systems scale, and daily stress. Latent growth curve modeling examined predictors of life stress across 12 months as a function of home and community difficulties, asthma-specific factors, and social support. Mothers were primarily single (73%), unemployed (55%), and living in extreme poverty with most (73%) reporting an annual family income <$20,000 (73%). The children were young (mean age = 5.59, SD = 2.17), African-American (96%), and had poorly controlled asthma (94%) at study enrollment. Higher daily stress was associated with financial difficulties, safety concerns in the home and community, and housing problems. Access to social support was consistently related to reduced stress. The only asthma-specific factor associated with life stress was healthcare utilization, with more emergency services for asthma related to higher daily stress. Findings underscore the clinical significance of assessing diverse home and community stressors and social support in low-income, inner-city caregivers of children with poorly controlled asthma.

Factors associated with poor controller medication use in children with high asthma emergency department use.

BACKGROUND: Understanding health and social factors associated with controller medication use in children with high-risk asthma may inform disease management in the home and community. OBJECTIVE: To examine health and social factors associated with the Asthma Medication Ratio (AMR), a measure of guideline-based care and controller medication use, in children with persistent asthma and frequent emergency department (ED) use. METHODS: Study questionnaires, serum allergen sensitization, salivary cotinine, and pharmacy record data were collected for 222 children enrolled from August 2013 to February 2016 in a randomized clinical trial that tested the efficacy of an ED- and home-based intervention. Logistic regression was used to examine factors associated with an AMR greater than 0.50, reflecting appropriate controller medication use. RESULTS: Most children were male (64%), African American (93%), Medicaid insured (93%), and classified as having uncontrolled asthma (44%). Almost half (48%) received non-guideline-based care or low controller medication use based on an AMR less than 0.50. The final regression model predicting an AMR greater than 0.50 indicated that children receiving specialty care (odds ratio [OR], 4.87; 95% confidence interval [CI], 2.06-11.50), caregivers reporting minimal worry about medication adverse effects (OR, 0.50; 95% CI, 0.25-1.00), positive sensitization to ragweed allergen (OR, 3.82; 95% CI, 1.63-8.96), and negative specific IgE for dust mite (OR, 0.33; 95% CI, 0.15-0.76) were significantly associated with achieving an AMR greater than 0.50. CONCLUSION: Clinical decision making for high-risk children with asthma may be enhanced by identification of sensitization to environmental allergens, ascertaining caregiver's concerns about controller medication adverse effects and increased referral to specialty care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01981564.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

OBJECTIVE: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. METHOD: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. RESULTS: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. SIGNIFICANCE OF RESULTS: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.