Melissa H. Bellin

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.

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.

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 < 0.05). Mean scores on the AMIS II reflected deficits in condition management activities and tasks of everyday life. Limited QOL was also observed. Interpretation The overall low rates of employment and independent living suggest that individuals with myelomeningocele are experiencing great difficulty in achieving these milestones of emerging adulthood, regardless of sex. Limited success in developing self-management skills and restricted QOL also highlight vulnerability in this population.

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.

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.