Melissa H. Bellin

Correlates of Depressive and Anxiety Symptoms in Young Adults with Spina Bifida

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.

Family-centered care: a resource for social work in end-of-life and palliative care.

Abstract Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.

Quality of life in individuals with spina bifida: a research update.

Quality of life (QOL) is an important concept for individuals with chronic health conditions. Measuring and supporting QOL in children, adolescents, and adults with spina bifida (SB) may be especially unique given the broad range of complex health and rehabilitative challenges they encounter. This article provides a research update on (a) conceptual and methodological considerations in measuring QOL and a related construct, health-related quality of life (HRQOL); (b) the state of the science in QOL and HRQOL for individuals with SB; and (c) gaps in the evidence and implications for future research. A synthesis of the literature was limited by the use of 17 different QOL and HRQOL instruments to measure these constructs and notable weaknesses in the most frequently used condition-specific HRQOL instrument. However, a tentative pattern of lower scores on the physical domain of HRQOL measures in individuals with SB in comparison to peers emerged, while discrepancies in emotional, social, and school domains varied by study. Recommendations for future research include using a lifespan approach to expand QOL studies to older adults with SB and focusing on intervention research to prevent or treat decreased HRQOL.

Results of the Doctoral Faculty Publication Project: Journal Article Productivity and Its Correlates in the 1990s.

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.

Factors Associated with Second-Hand Smoke Exposure in Young Inner-City Children with Asthma

Objectives. To examine the association of social and environmental factors with levels of second-hand smoke (SHS) exposure, as measured by salivary cotinine, in young inner-city children with asthma. Methods. We used data drawn from a home-based behavioral intervention for young high-risk children with persistent asthma post-emergency department (ED) treatment (N = 198). SHS exposure was measured by salivary cotinine and caregiver reports. Caregiver demographic and psychological functioning, household smoking behavior, and asthma morbidity were compared with child cotinine concentrations. Chi-square and ANOVA tests and multivariate regression models were used to determine the association of cotinine concentrations with household smoking behavior and asthma morbidity. Results. Over half (53%) of the children had cotinine levels compatible with SHS exposure and mean cotinine concentrations were high at 2.42 ng/ml (SD 3.2). The caregiver was the predominant smoker in the home (57%) and 63% reported a total home smoking ban. Preschool aged children and those with caregivers reporting depressive symptoms and high stress had higher cotinine concentrations than their counterparts. Among children living in a home with a total home smoking ban, younger children had significantly higher mean cotinine concentrations than older children (cotinine: 3–5 year olds, 2.24 ng/ml (SD 3.5); 6–10 year olds, 0.63 ng/ml (SD 1.0); p < .05). In multivariate models, the factors most strongly associated with high child cotinine concentrations were increased number of household smokers (β = 0.24) and younger child age (3–5 years) (β = 0.23; p < .001, R2 = 0.35). Conclusion. Over half of the young inner-city children with asthma were exposed to SHS, and caregivers are the predominant household smokers. Younger children and children with depressed and stressed caregivers are at significant risk of smoke exposures, even when a household smoking ban is reported. Further advocacy for these high-risk children is needed to help caregivers quit and to mitigate smoke exposure.

The Experience of Self-Management in Adolescent Women with Spina Bifida

&NA; 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.

Stress and quality of life in caregivers of inner-city minority children with poorly controlled asthma.

INTRODUCTION Caregiver quality of life (QOL) is known to influence asthma management behaviors. Risk factors for low caregiver QOL in families of inner-city children with asthma remain unclear. This study evaluated the interrelationships of asthma control, stress, and caregiver QOL. METHOD Data were analyzed from a home-based behavioral intervention for children with persistent asthma after treatment for asthma in the emergency department. Caregivers reported on baseline demographics, asthma control, asthma management stress, life stress, and QOL. Hierarchical regression analysis examined the contributions of sociodemographic factors, asthma control, asthma management stress, and life stress in explaining caregiver QOL. RESULTS Children (N = 300) were primarily African American (96%) and young (mean age, 5.5 years). Caregivers were predominantly the biological mother (92%), single (70%), and unemployed (54%). Poor QOL was associated with higher caregiver education and number of children in the home, low asthma control, and increased asthma management stress and life stress. The model accounted for 28% of variance in caregiver QOL. DISCUSSION Findings underscore the need for multifaceted interventions to provide tools to caregivers of children with asthma to help them cope with asthma management demands and contemporary life stressors.

Self-management,preventable conditions and assessment of care among young adults with myelomeningocele

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 166,000 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 R(2) = 0.774, P = 0.002). Higher number of ulcers was associated with higher motor level and higher educational level (adjusted R(2) = 0.378, P = 0.017). Higher number of hospitalizations was associated with higher number of wounds and lower AMIS scores (adjusted R(2) = 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.

Factors associated with the psychological and behavioral adjustment of siblings of youths with spina bifida.

The intensive health management activities associated with spina bifida (SB) often command a pervasive presence in the lives of families and may place some members at risk for psychosocial difficulties. However, research on the risk and protective factors associated with sibling adjustment is limited. Anchored upon a social-ecological theoretical framework, the purpose of this cross-sectional study was to explore the relationships between select individual, family, and peer factors and sibling adjustment. A convenience sample of 224 adolescent siblings and parents of youths with SB responded to anonymous mailed surveys. Siblings completed measures of attitude toward spina bifida, family satisfaction, warmth and conflict in the sibling relationship, peer support, and three dimensions of adjustment-self-concept, prosocial behavior, and behavior problems. Parents provided SB clinical data and family demographics. The individual, family, and peer factors explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties, with R(2) ranging from .27 to .57. Differing patterns of the relationships between the ecological factors and sibling adjustment emerged. Findings highlight multi-level opportunities to intervene and support siblings. Minimizing threats and bolstering protective influences on sibling adjustment is an essential component of family-centered services in SB.

Interrelationships of sex, level of lesion, and transition outcomes among young adults with myelomeningocele

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.