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Introduction The purpose of this study was to identify risk factors for primary medication nonadherence among low-income minority children with persistent asthma. Method Data were from an environmental control and educational intervention for children with uncontrolled asthma who were treated in the emergency department for an asthma exacerbation. Presence or absence of pharmacy records for child asthma medications was the outcome of interest. A range of sociodemographic, health, and psychosocial measures were included in the binary logistic regression. Results Of the 222 youths (mean age = 6.3 years; 93.7% Black), 25 (11.3%) lacked pharmacy records of asthma medications. For every 1-point increase in caregiver depressive symptoms, the odds of the child having a pharmacy record declined by 5% (odds ratio = 0.95; p = .012). Discussion Providers should systematically assess and monitor caregiver depressive symptoms as a potential contributing factor for primary medication nonadherence in low-income minority children with persistent, uncontrolled asthma.

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.

The purpose of this study was to examine relationships among caregiver social support, caregiver depressive symptoms, medication adherence, and asthma control in a sample of low-income, urban, Black children aged 3–12 years with uncontrolled asthma and their caregivers. Using longitudinal data from a randomized controlled trial (RCT) assessing the efficacy of an environmental control educational intervention, we used generalized estimating equations and ordered logistic regression models to evaluate the relationship between caregiver social support (Medical Outcomes Study Social Support Survey), depressive symptoms (Center for Epidemiologic Studies Depression scale), and two child asthma outcomes: (a) medication adherence (Asthma Medication Ratio) and (b) asthma control. At baseline, 45.7% of the 208 children had very poorly controlled asthma. Nearly a third of caregivers (97% female) had clinically significant depressive symptoms at each data collection point. Social support was not associated with either asthma outcome nor did it moderate the relationship between depressive symptoms and child asthma outcomes. Higher caregiver depressive symptoms predicted decreased medication adherence (b=−0.003, SE 0.002). Moderate asthma at baseline (OR: 0.305, SE: 0.251), severe asthma at baseline (OR: 0.142, SE: 0.299), household income < $20,000 per year (OR: 0.505, SE: 0.333), and fall season (OR: 0.643, SE: 0.215) were associated with poorer asthma control. Attending to the social context of low-income, urban, Black children with asthma is critical to reduce asthma morbidity. Maternal depressive symptoms are modifiable and should be targeted in interventions to improve child asthma outcomes in this vulnerable population. The RCT was registered with ClinicalTrials.gov (NCT01981564) in October 2013.

OBJECTIVE: Accurately assessing asthma medication usage among low-income, urban, African American children is essential to reduce asthma health disparities. The purpose of this study was to examine the factor structure of the five-item Medication Adherence Report Scale (MARS), in a sample of caregivers of low-income, urban, African American youth with poorly controlled asthma. METHOD: Using baseline data from a randomized clinical trial evaluating the efficacy of an environmental control educational intervention, confirmatory factor analysis (CFA) was conducted to ascertain the MARS factor structure. Construct validity was assessed using a regression model inclusive of caregiver-reported medication adherence, Asthma Medication Ratio (AMR), asthma control, and caregiver perception of asthma control as predictors of the MARS. RESULTS: Caregivers were female (97%) and 27.4% had an annual income under $10,000. The mean MARS score was 21.88 ± 3.33 out of a possible range of 5–25, representing high adherence. Confirmatory factor analysis indicated that a five-item one-factor model marginally fit the data based on the fit indices: χ(2) (5) = 31.71, p < 0.001; RMSEA ≤ .161; CFI = 0.986; TLI = 0.971; and WRMR = 0.979. The MARS was associated with another caregiver-reported measure of medication adherence but not associated with AMR, asthma control, or caregiver perception of asthma control. CONCLUSIONS: The MARS demonstrated marginal fit in CFA and may not be clinically indicated in light of the lack of associations with objective measures of asthma medication adherence and asthma control.

Asthma morbidity and mortality are disproportionately higher among African American children. Medication adherence is essential for reducing adverse asthma outcomes in this population. Depressive symptoms, prevalent among mothers of children with asthma, have been linked to medication nonadherence. This longitudinal, multilevel analysis used data from a randomized clinical trial evaluating the efficacy of an environmental control educational intervention to evaluate the relationship between caregiver depressive symptoms (Center for Epidemiologic Studies Depression Scale) and caregiver-reported medication adherence (Medication Adherence Report Scale) in urban African American children with uncontrolled asthma (N = 208) at baseline, in six months, and in 12 months. Nearly a third (31.7%) of caregivers (97% female) had clinically significant depressive symptoms at baseline. A random intercept model showed that the within-caregiver effect of depression predicted lower medication adherence (β = –.079, p = .002) as did time (β = –.413, p < .001); the between-caregiver effect of depression did not (β = –.007, p = .77). Changes in a caregiver’s baseline level of depressive symptoms appear to have a stronger influence on medication adherence than mean level of depressive symptoms. Policy, practice, and further research should address maternal mental health as a key element in the life course of African American children with asthma.

The Child Attitude Toward Illness Scale (CATIS) is an established measure of how CSHCN perceive the impact of chronic conditions on their lives. We tested the psychometric properties of the CATIS a...

Low-income mothers of children with uncontrolled asthma are an underserved population at risk for psychological distress. We examined the impact of violence exposure and child asthma morbidity on depressive symptoms in mothers of youths with uncontrolled asthma. Asthma symptoms and health care utilization, socio-demographics, and standardized measures of depressive symptoms and violence exposure were ascertained by self-report. Latent Growth Curve Modeling tested the associations of violence and asthma morbidity with depressive symptoms. Participating mothers (N=276) reported high baseline violence exposure (59.5%) and depressive symptoms (34.4%); nearly a quarter had clinically significant depressive symptoms at 12 months. Violence exposure was consistently associated with maternal depressive symptoms. Individual indicators of asthma morbidity were nonsignificant, but the cumulative effect of asthma morbidity was predictive of higher depressive symptoms. Findings suggest holistic risk assessment and interventions may be needed to ameliorate the chronic distress observed in mothers of youths with uncontrolled asthma.

Introduction The process of self-management knowledge, behavior, and skill development in children with asthma from families with low income is understudied. Method Fifteen mothers of children with uncontrolled asthma participated in semistructured interviews exploring the transfer of asthma self-management responsibilities from parent to child. Team members performed thematic analysis of written transcripts. Results All participants were all the biological mothers and were impoverished, with most (73%) reporting an annual family income of less than $30,000. Their children ranged from 5 to 15 years old, were African American (100%), and had uncontrolled asthma based on national guidelines. Themes showed that child asthma self-management is difficult to achieve, that the transfer of asthma responsibility from mother to child is variable, and that mothers overestimate their child's developmental capacities for independent asthma self-management and have poor understanding of what well-controlled asthma means. Discussion Ongoing assessment and tailored guidance from health care providers are critical to support the pivotal role of mothers in their child's self-management development process.

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.

Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.

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.

OBJECTIVE: The purpose of this study was to examine the factor structure of the Medical Outcomes Study Social Support Survey (MOS-SSS) in a sample of low-income, urban caregivers of African American children with poorly controlled asthma. Although the MOS-SSS is a commonly used measure of social support, its psychometric properties have not been studied in this population. METHODS: Confirmatory factor analysis was conducted to determine the most appropriate factor structure for the MOS-SSS in caregivers of African American children with frequent Emergency Department visits for uncontrolled asthma. The following models were tested and compared using established fit statistics: an 18-item second-order four factor model, an 18-item four factor model, a bifactor model, and an 18-item one factor model with nested models. RESULTS: Participating caregivers were single (75.6%) and female (97%). An 18-item one factor version of the scale had the best fit statistics compared to the other models tested: χ(2)(142) = 308.319, p > 0.001; Root Mean Square Error of Approximation (RMSEA) = 0.077; CFI (Comparative Fit Index) = 0.990; and Tucker-Lewis Index (TLI) = 0.988. Construct validity was supported by a statistically significant negative relationship between our final MOS-SSS model and caregiver depressive symptoms (β = −0.374, p < 0.001). CONCLUSIONS: The 18-item one factor MOS-SSS may be appropriate for use in research and clinical practice with caregivers of African American children with poorly controlled asthma. It appears promising as a mechanism to advance understanding of relationships between social support and asthma outcomes in this vulnerable population.

Violence and trauma exposure have been increasingly investigated as contributing to a range of negative outcomes in child physical, cognitive, emotional, social, and psychological functioning, particularly among youth who are racial/ethnic minorities. This study presents findings related to children's attributions of their violence and trauma exposure. Attributions are inferences made about the cause of an event, situation, or action, with internal, stable, and global attributions most likely to lead to negative psychological outcomes. Data were drawn from an on-going clinical intervention study with families at risk for child maltreatment and/or neglect residing in a large metropolitan city on the East Coast. Mediation models provide evidence for a mediated relationship between violence exposure and PTSD through child attribution. Children develop their definitions of violence, formulate reasons why the violence occurs, and react to violence based on interpreting and developing cognitive attributions and schema about their experiences with violence in order to adaptively cope.

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.

Objective Knowledge of asthma home management from the perspective of poor, minority children with asthma is limited. Method Convenience sampling methods were used to recruit families of low-income children who are frequently in the emergency department for uncontrolled asthma. Thirteen youths participated in focus groups designed to elicit reflections on asthma home management. Data were analyzed using grounded theory coding techniques. Results Participants (Mean age = 9.2 years) were African American (100%), enrolled in Medicaid (92.3%), averaged 1.4 (standard deviation = 0.7) emergency department visits over the prior 3 months, and resided in homes with at least 1 smoker (61.5%). Two themes reflecting multifaceted challenges to the development proper of self-management emerged in the analysis. Discussion Findings reinforce the need to provide a multipronged approach to improve asthma control in this high-risk population including ongoing child and family education and self-management support, environmental control and housing resources, linkages to smoking cessation programs, and psychosocial support.

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.

Nurses are integral members of interdisciplinary healthcare teams providing transition services to adolescents and young adults with long-term conditions and disabilities. Using valid and reliable measures of self-management and transition readiness behaviors can be an important component of effective practice. To identify potential instruments for use in practice, a search was conducted using multiple databases for instruments developed in the last 10 years that addressed these behaviors and had some psychometric evidence. This process yielded both generic (n = 11) and condition-specific (n = 27) instruments. The authors provide analyses of the instruments identified including psychometric properties, strengths, weaknesses, and implications for practice. The most frequent critique of select instruments is the lack of stability evidence (test–retest analysis) which limits healthcare providers’ ability to assess these behaviors over time. The instruments included in this analysis offer nurses and other healthcare providers a variety of choices as they tailor interventions to optimize self-management and transition readiness behaviors for adolescents and young adults with long-term conditions and disabilities.

Background Self-management is critical to optimizing the health of individuals with a chronic condition or disability and is, therefore, a central concept in individual and family-centered healthcare delivery. The purpose of this review is to report the state of the science of self-management for individuals with spina bifida (SB) from a lifespan perspective. Objective This review will summarize the (a) development and use of self-management skills and behaviors across the life span, (b) factors related to self-management behaviors, (c) development of generic or condition-specific measures of self-management used with a spina bifida population, and (d) development and/or outcomes of interventions to improve self-management in SB. Methods The search strategy was limited to primary research articles published between 2003 and 2019 and followed PRISMA guidelines. The databases searched included: PubMed, CINAHL, PsycINFO, Web of Science, Cochrane, and Google Scholar. Studies that addressed self-management concepts in individuals throughout the life span and published in English were included. Results The search yielded 108 citations and 56 articles met inclusion/exclusion criteria. A systematic narrative synthesis was reported. The level of evidence identified was primarily Level III articles of good quality. Multiple demographic, environmental, condition and process factors were related to self-management behaviors. SB self-management instruments and intervention development and testing studies were identified. Conclusions This review provides a synthesis of the state of the science of self-management including factors related to self-management behaviors, preliminary evidence of instruments for use in SB, factors important to consider in the development and testing of future interventions, and gaps in the literature.

Background Disadvantaged minority children are disproportionately affected by asthma. This group is also known to frequently use the emergency department (ED) for asthma care. Understanding decisions for use of the ED is important to prevent high cost. Objective To examine caregiver factors associated with the decision to use the ED for asthma care in inner-city children with asthma. Methods One hundred fifty participants in a randomized clinical trial testing the effectiveness of a home-based asthma intervention were enrolled, and questionnaires were administered to caregivers during the child's ED asthma visit. Sociodemographics, health characteristic data, and caregiver interview data were examined to ascertain factors that affected caregiver decision making to use the ED for asthma care. A cluster analysis was performed to correlate caregiver reasons for the decision to use the ED for asthma care. Results Three clusters emerged for decision making: urgency, preference for the use of the ED, and access to care issues. The perception of urgency was the most common reason reported by caregivers (91%) followed by reporting a preference for the ED for care (37%) and reporting access to care issues (31%). Access to care was primarily attributable to the inability to get a same-day appointment with their primary care practitioner (24%). Conclusion The caregiver factors involved in the decision to use the ED can provide a basis for further intervention and investigation. Such factors include caregiver asthma home management, improvement in relationships with primary care practitioners, and access to care-related issues.

Suboptimal training for healthcare students is a recognized barrier to successful completion of advance care planning (ACP) with patients and families. Our study sought to enhance ACP knowledge and communication skills for interprofessional healthcare students. During academic year 2017–2018, 46 students (19-medicine, 16-nursing, and 11-social work), received three training modules delivered by interprofessional faculty. Students subsequently observed a clinical ACP encounter attended by a patient and their family, a clinical social worker, and an internal medicine resident. Three surveys (pre-training T1, post-training T2, and post-clinical encounter T3) evaluated change in student knowledge, communication self-efficacy, ACP self-efficacy, and interprofessional teamwork (using SPICE-R). A randomized waitlist approach was used to test the effects of the clinical ACP training. Student attendance and engagement were high. Relative to baseline, all outcomes differed at all data collection intervals (p < 0.05), except for the SPICE-R from T2 to T3 (p > 0.05). ACP self-efficacy scores declined at T2 before improving at T3. Communication self-efficacy was lower at T2 but improved at T3. Teamwork improved with a medium-large effect (ES = 0.75) at T2 and a large effect (ES = 1.00) at T3. Participant knowledge of ACP improved overall (p < 0.001) as well as for each discipline (p < 0.05). Preliminary findings indicate the interprofessional training experience enhanced student communication skills, ACP knowledge, and appreciation for team-based care. T2 findings demonstrate decrease in communication and ACP self-efficacy, perhaps suggesting students initially underestimated ACP complexity and overestimated their ability to communicate about ACP. T3 findings further suggest that students ultimately benefited from the training experience with meaningful improvements on all key outcomes.

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 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

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.

Objective This study uses the Life Course Model for Spina Bifida (SB) to advance knowledge of factors associated with change in quality-of-life (QOL) among emerging adults with SB. Design Forty-eight participants (mean [SD], 22.04 [2.16] yrs) completed self-report questionnaires at two time points, 15 mos apart. Four QOL domains (physical health, psychological, social relationships, and environment) were measured using the World Health Organization QOL-BREF version. SB clinical data were collected via chart reviews. Paired t tests and reliable change indices evaluated group- and individual-level QOL change, respectively. Multiple regression analyses tested the contributions of the Life Course variables in explaining change in QOL over time. Results No significant group-level differences in the QOL domains were found between time 1 and time 2, but there was substantial individual variation in QOL over time. SB severity was related to a decline only in psychological QOL (B = -0.68, P = 0.02). Increased pain was associated with reduced physical health (B = -0.29, P = 0.049) and psychological (B = -0.29, P = 0.03) QOL at time 2, whereas greater family satisfaction was related to improved QOL in several domains. Conclusions Clinicians should be aware of the negative impact of pain and the protective influence of family satisfaction on QOL in emerging adults with SB.

Although the scientific understanding of the pathophysiology of asthma and the quality of asthma therapies have significantly improved over the past 30 years, asthma morbidity remains high and preventive care low for inner-city children. This article focuses on 4 major challenges to providing preventive care (family and patient attitudes and beliefs, lack of access to quality medical care, psychosocial factors, environmental factors) based on prior evidence and the authors' observation of these challenges in research with inner-city children with asthma over the past decade. Cost issues related to preventive care are addressed, and recommendations provide for pediatric nurses.

Low-income caregivers of young children with high-risk asthma experience social stressors and illness-related demands that may impede effective home asthma management. Knowledge of the caregiving experience in the context of poverty is limited.Convenience sampling methods were used to recruit low-income caregivers of children aged 7-12 years, who are frequently in the Emergency Room (ED) for uncontrolled asthma. Thirteen caregivers participated in focus groups that were designed to elicit reflections on asthma home and community management from the caregiver perspective. A grounded theory approach was used in the open coding of transcript data from three focus groups, as well as to revise and reorganize emerging themes and sub-themes.Participants (Mean age = 33.9 years) were predominantly the biological mother (92.3%), single (84.6%), and impoverished (69.2% reported annual household income ≤ $30,000). Their children (Mean age = 7.8 years) were African-American (100%), enrolled in Medicaid (92.3%), averaged 1.38 (SD = 0.7) ED visits over the prior 3 months, resided in homes with at least one smoker (61.5%), and nearly all (84.6%) experienced activity limitations due to asthma. Five themes emerged in the analysis: intensive caregiving role, complex and shared asthma management responsibility, parental beliefs and structural barriers to guideline-based care, lack of control over environmental triggers, and parent advocacy to improve child asthma care and outcomes.Caregivers managing a child with high-risk asthma in the context of poverty indicate the need for ongoing asthma education, increased sensitivity to the complexity of home asthma management, and family-centered interventions that enhance communication and collaboration between caregivers and providers.

A family-centered approach to health care for children with special health care needs (CSHCN) is widely acknowledged as the ideal model of service delivery, but less is known about the actual practice of family-centered care (FCC), especially from the viewpoints of parents and health care professionals. This cross-sectional research compared parent and health care professional perspectives on the degree to which FCC is being provided at a large, urban hospital in the United States. The Measure of Process of Care (MPOC) was administered to a representative sample of 92 parents of CSHCN; a convenience sample of 43 health care professionals completed the service provider version of the MPOC. A mixed-model analysis of variance was conducted to test for group differences on matched domain scores of the MPOC. No significant differences emerged between the two stakeholder groups, but significant differences were detected among the four domain scores. The data suggest that health professionals are generally meeting families' needs for specific communication and are respectful of parents' expertise. However, parents and professionals alike indicated the need for continued professional growth in the area of providing holistic, comprehensive services to advance FCC.

Aim In this multicentre cross-sectional study we aimed to identify whether self-management ability and healthcare service delivery factors were related to preventable conditions [urinary tract infections (UTIs), pressure ulcers] and healthcare utilization [emergency room (ER) visits, hospitalizations] specifically in a sample of young adults with myelomeningocele. Background Spina bifida is one of the most common congenital birth defects, affecting over 166000 individuals living in the USA. Participants completed a questionnaire comprised of a self-report measure of healthcare services (Patient Assessment of Chronic Illness Care), recent healthcare utilization and preventable medical conditions. A structured clinical interview [Adolescent Self-Management and Independence Scale 2 (AMIS)] was administered to assess self-management. Multiple linear regression models were run to explore individual and combined effects of the AMIS, Patient Assessment of Chronic Illness Care, condition severity variables (shunted hydrocephalus, lesion level) and demographic factors in explaining variability in ER visits, hospitalizations, UTIs and pressure ulcers. Results Higher number of UTIs were associated with no history of shunting, lower educational levels, higher employment levels and lower AMIS scores (adjusted R2=0.774, P=0.002). Higher number of ulcers was associated with higher motor level and higher educational level (adjusted R2=0.378, P=0.017). Higher number of hospitalizations was associated with higher number of wounds and lower AMIS scores (adjusted R2=0.544, P=0.012). A significant model for ER visits was not identified. Conclusions Initiatives aimed at improving self-management skills or providing support for skin and bladder care may be warranted for those with high levels of motor impairment or lower educational levels. Better detection of wounds may be seen in those with higher employment levels. Spina bifida is a complex condition, but one whose most prevalent concomitant secondary conditions may be preventable through simple measures that improve self-management and through health educational initiatives targeted to specific patient groups. © 2011 Blackwell Publishing Ltd.

Background Adolescents and young adults with spina bifida are an at-risk population because of the complexity of their condition,developmental stage and social challenges.The purpose of this qualitative study was to examine the transition to adulthood in young adults with spina bifida and to explore condition-related needs and life skills required during the transition process. Methods This qualitative study using narrative inquiry was part of a larger multi-site study of adaptation in young adults with spina bifida.Interviews were completed with 10 participants ranging in age from 18 to 25 years.The guided interview questions focused on specific dimensions of the transition experience related to the ecological model:self-management,independence and inner strength. Results Three themes capturing different dimensions of the young adults’ transition experiences emerged in the analysis.The themes included:(1) Struggling for independence,(2) Limiting social interactions and experiences with stigma,and (3) Building inner strength. Conclusion The qualitative study contributes to a better understanding of the challenges of transition to achieve self-management and social development for young adults with spina bifida. Findings in the life stories highlighted issues that necessitate increased advocacy and interventions from professionals within the health and social system.

With improvements in both early detection and treatments for breast cancer, the number of survivors has increased dramatically in recent decades. One of the most common lingering symptoms posttreatment for cancer survivors is chronic fatigue. Based on family stress theory and Rolland's typology of illness, this qualitative study extends our understanding of the impact of persistent posttreatment fatigue on families and how breast cancer survivors manage the family issues that arise because of this chronic stressor. Participants included 35 female survivors of breast cancer (mean age = 54 years) who experienced fatigue after the completion of active cancer treatment, with the exception of long-term hormonal therapy. Data were generated from (a) observations of group sessions from a randomized controlled fatigue intervention designed to reduce fatigue in breast cancer survivors, (b) individual in-depth interviews, and (c) family sessions. Qualitative analysis revealed two broad themes that illustrate how the survivors manage the impact of fatigue on their families: Interpreting the meaning of the fatigue and Dealing with the inability to perform family roles. Study findings describe the difficulties in family adaptation when the family is not able to assign a clear meaning to a chronic symptom posttreatment and build upon family stress theory by highlighting interrelationships among communication patterns and role shifts in the family system.

Aim To advance understanding of the interrelationships of sex, level of lesion (LOL), self-management, community integration (employment, independent living), and quality of life (QOL) in young adults with myelomeningocele. Method A multicenter convenience sample of 50 individuals with myelomeningocele, 18 to 25 years of age (mean age 21y 5mo, SD 2y), participated in a structured clinical interview on self-management (Adolescent Self-Management and Independence Scale II [AMIS II]) and completed a self-report questionnaire comprising standardized measures. QOL was assessed using the World Health Organization Quality of Life (WHOQOL)-BREF instrument. A chart review yielded clinical data. Results Most participants were Caucasian (78%), female (56%: 28 females, 22 males), unemployed (58%), and in supervised living environments (74%). Eighty per cent had a history of hydrocephalus requiring shunt placement. A lumbar LOL was most frequently reported (64%), followed by a sacral LOL (22%), and thoracic LOL (7%). Males were more likely to report employment (p=0.008), but females had greater success in transitioning into independent living settings (p=0.015). LOL was a significant predictor of specific dimensions of self-management, employment, and QOL (p

This article focuses on how the Life Course Model Web site can help family members build on the strengths of individuals with spina bifida and address areas of difficulty. A developmental perspective is adopted, which maintains that the Life Course Model Web site is useful at all stages of development, with the information provided for families at one stage of development building on the information provided for those at earlier stages of development. A brief overview is provided of relevant theories that supported the development of the Life Course Model. There is a review of the literature on the adjustment of families of individuals with spina bifida and the psychosocial adjustment of affected youth. How families may benefit from engagement with the 3 content areas covered by the Web site is discussed, namely child health and the transfer of medical management from parent to child (health/self-management), the development of social relationships (social relationships), and the achievement of milestones during emerging adulthood, including achievements in the areas of education and employment (education, employment, and income support).

Background. Effective pediatric guideline-based asthma care requires the caregiver to accurately relay the child’s symptom frequency, pattern of rescue and controller medication use, and level of asthma control to the child’s primary care clinician. Objective. This study evaluated the longitudinal effects of a caregiver-clinician asthma communication education intervention (ACE) relative to an asthma education control group (CON) on symptom days and controller medication use in inner-city children with asthma. Participants and Methods. 231 inner-city children with asthma, recruited from urban pediatric emergency departments (EDs) and community practices, were followed for 12 months. Data included number of symptom days and nights, ED visits, hospitalizations, presence of limited activity, and controller medication use over 12 months. Pharmacy records were used to calculate controller to total asthma medication ratios as a proxy of appropriate controller medication use. Multivariate logistic regression models were use dt o identify factors associated with number of symptom days and nights over the past 30 days at the 12-month follow-up. Results. Most caregivers rated the communication with their child’s clinician as high. Unadjusted and adjusted rates of symptom days and nights did not differ by group at follow-up. ACE children trended towards a higher controller to total medication ratio at 12 months as compared to CON children (mean ratio: ACE: 0.54, SD 0.3; CON, 0.45, SD 0.4; p = .07). Activity limitation due to asthma and persistent asthma severity were the only factors significantly associated with reporting any symptom day within the past 30 days, adjusting for treatment group, number of oral corticosteroid courses and number of clinician visits in the last 6 months, seasonality, insurance type, and controller to total asthma medication ratio covariates. Conclusion. A home-based caregiver asthma communication educational intervention was not associated with decreased symptom days. However, a trend was noted in higher controller to total medication ratios in the intervention group. Inner-city caregivers of children with asthma may require a health systems approach to help convey the child’s asthma health information to their clinician.

This special issue of the Journal of Family Social Work focuses on family-centered health services, covering a range of perspectives, populations, and methodologies. The concept of family-centered ...

Family-centered care (FCC) is widely acknowledged as supporting positive outcomes in children with special health care needs (CSHCN) and their parents. The intent of this mixed-method research was to enhance understanding of family-centered behaviors in professionals who had received specialty training in the principles of FCC and to explore provider perceptions of challenges to FCC implementation. Eighty-nine professionals who had completed the Leadership Education in Neurodevelopmental Disabilities (LEND) training program at a large, urban university were mailed an anonymous survey containing a self-report measure of FCC, the Measure of Process of Care for Service Providers, and an open-ended question on barriers to FCC. Thirty-three participants returned the survey (37% response rate). Descriptive analyses of MPOC-SP subscales indicated that the interdisciplinary professionals were providing care consistent with the principles of FCC in the areas of treating people respectfully, communicating specific ...

Objective Based on social ecological theory, this study was designed to examine the unique relationships between multi-level ecological factors and psychological symptoms in young adults with spina bifida (SB). Method A sample of 61 individuals with SB, 18–25 years of age, completed standardized self-report measures of attitude toward SB, satisfaction with family functioning, Chronic Care Model (CCM) services, and depressive and anxiety symptoms. A chart review yielded SB clinical data. Results High rates of depressive and anxiety symptoms were found. Hierarchical regression analysis identified the proximal individual (attitude toward SB) and family (satisfaction with family functioning) factors as more strongly related to depressive symptoms than the distal healthcare system factor (CCM services). Self-reported pain was the only ecological factor associated with anxiety symptoms. Conclusions Study findings provide a potential foundation for multi-factor screening of young adults with SB at risk for psychological symptoms.

It is essential for youth with chronic health conditions like spina bifida (SB) to develop self-management skills to combat vulnerability, achieve self-sufficiency, and transition to adulthood. The purpose of this qualitative study was to describe the experience of self-management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self-management activities--knowledge, skills, and aspirations; (2) dance of individuation--parental impact on self-management; and (3) advocacy within self-management--confronting discrimination and stigma. The findings indicate that assessment and interventions to enhance self-management in adolescent women with SB are critical for supporting the range of condition-related and life skills needed for a transition to adulthood and independent living.

Based on a social-ecological theoretical framework, this study sought to identify key individual (attitude toward spina bifida), family (satisfaction with family functioning), and peer (peer support) factors associated with the quality of sibling relationships in families of youths with spina bifida. A cross-sectional sample of 224 siblings of youths with spina bifida, ages 11-18 years, and parents participated. Siblings completed self-report measures of attitude toward spina bifida, satisfaction with family functioning, peer support, and warmth and conflict in their relationships with brothers and sisters with spina bifida. The parent provided information on spina bifida severity and family demographics. Hierarchical regression analyses supported the overall model in explaining variance in sibling-reported relational warmth (Adjusted R(2) = .29) and conflict (Adjusted R(2) = .17). Satisfaction with family functioning was the only ecological factor consistently associated with warmth and conflict in the sibling relationship. Findings have clinical implications for pathways to support positive sibling interactions in families of youths with spina bifida.

Adolescent women with spina bifida (SB) face unique and diverse challenges. The purpose of this qualitative component of a larger mixed-method study on adaptation was to heighten rehabilitation nurses' understanding of self-concept and family relationships during adolescence. Interviews were conducted with 31 adolescent women and analyzed for themes. The women described a range of experiences, including challenges of typical adolescence, specific concerns about living with SB, school-based stressors, and incidences of teasing and bullying. The overall self-concept was primarily positive, despite the diverse stressors encountered. A significant source of strength was the close relationships with parents, although an undercurrent of tension related to independence was also expressed. Results from this study support the need for rehabilitation nurses to address not only the functional status but also the well-being and psychosocial challenges of adolescent women with SB.

Breast cancer survivors commonly experience fatigue, but family-focused interventions as a means to reduce fatigue are understudied. This qualitative study explored the experience of adding a family component to a multimodal group intervention for fatigue. Data were collected from group observations, in-depth interviews, and debriefing sessions with the program social worker. Fourteen survivors completed the family intervention (mean age 57 years) with a family member or close friend. Four themes associated with the family intervention were identified: (a) importance of family inclusion, (b) education of family members about fatigue, (c) enhanced family communication, and (d) family partnership to combat fatigue.

This study examined the relationship between deployment status, psychological distress, perceived social support, age, rank, and gender with Army spouses' (N=1863) weight status. We posited that spouses of deployed Soldiers have a higher body mass index (BMI) than spouses of nondeployed Soldiers; spouses with higher psychological distress scores have a higher BMI than those with lower distress scores; and spouses with low social support scores have higher BMIs than those with higher social support scores.Secondary analysis of data from the 2008 Active Duty Spouse Survey was used to examine the relationship between weight status (health versus overweight or obese) and Army spouses' deployment status, demographic characteristics, psychological distress, and perceived social support.Deployment status and weight status were not related (P=.097). Male spouses were significantly more likely than female spouses to be overweight or obese. Psychological distress increased in direct correlation with increased age, and as perceived social support decreased, the incidents of being overweight or obese increased.Findings suggest several risk factors are associated with being overweight or obese: male spouse, noncommissioned officers in the ranks of E5 through E9, older age, higher psychological distress scores, and lower perceived social support scores. The risk factors support the use of the Army Surgeon General's Performance Triad of sleep, activity, and nutrition as a tool to assist Army personnel and Department of the Army civilians in teaching spouses awareness and methods of changing behaviors that may result in choosing healthy options.

Introduction The intent of this analysis was to examine the longitudinal effects of risk and protective factors on quality of life (QOL) in caregivers of minority children with asthma. Method Caregivers ( n = 300) reported on demographics, child asthma characteristics, daily asthma caregiving stress, general life stress, social support, and QOL. Latent growth curve modeling examined changes in QOL across 12 months as a function of stress, asthma control, and social support. Results Caregivers were primarily the biological mother (92%), single (71%), unemployed (55%), and living in poverty. Children were African American (96%), Medicaid eligible (92%), and had poorly controlled asthma (93%). Lower QOL was associated with higher life stress, greater asthma caregiving stress, and lower asthma control over time. Discussion Findings underscore the importance of assessing objective and subjective measures of asthma burden and daily life stress in clinical encounters with urban, low-income caregivers of children with poorly controlled asthma.

An accumulating body of literature points to the potential for successful outcomes among families who have a child with a chronic health condition. Resilience research has catalyzed a reconceptualization of the experience of such families from a deficit, pathological perspective to a growth-enhancing opportunity. However, scant data available about the specific risk and protective mechanisms influencing the psychosocial outcomes of well siblings in these families are lacking. This article draws on the literature addressing resilience in youths experiencing adversity to inform social workers about how to better promote positive outcomes among well siblings. Implications for future research and suggestions for social work practice to target the unique needs of well siblings are discussed.

Objectives: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct. Methods: Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance. Results: Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child’s special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance. Conclusions: These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child’s special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.

Results of this longitudinal study of the 1990s revealed that 12 of 61 doctoral faculties (20%) were responsible for 43% of journal articles published. Publication rates of these faculties appeared to accelerate in the 1990s and correlated positively with measures of program size and longevity. However, when all variables were controlled, the perceived academic quality of MSW programs was the sole correlate of faculty publication. Overwhelmingly, faculties of US News and World Report’s most highly rated MSW programs at the end of the decade were also the most frequently published. Implications of these findings are identified and discussed.