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The purpose of this study was to assess family-related predictors of self-management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family-related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self-management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio-demographic, condition-related, and neuropsychological variables that had been found to be significant predictors of self-management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18-27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self-management scales at age 18 (all p < 0.05). Growth in self-management was associated with parent-reported number of family stress events. For growth in total self-management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age-by-number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self-management trajectories, even after controlling for socio-demographic, condition-related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family-focused interventions for self-management.

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AIM: To examine socioeconomic, condition-related, and neuropsychological predictors of self-management trajectories in adolescents and young adults with spina bifida. METHOD: In this longitudinal study, participants completed the Adolescent/Young Adult Self-Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self-management was estimated using linear mixed-effects models. RESULTS: Participants (n = 99) were aged 18 to 27 years. Approximately half (52.5%) were female and White; 15.2% were Black; and 32.3% Hispanic or Latino. Although none of the predictors were associated with growth in self-management from ages 18 to 27 years (p > 0.05), several factors were associated with the intercept at age 18 years for total self-management. Higher SES at baseline predicted a higher total self-management score at age 18 years (b = 0.03, standard error [SE] = 0.01; p < 0.001). On average, participants at age 18 years with a shunt scored lower than those without a shunt (b = -0.90, SE = 0.32; p = 0.01); those with a thoracic lesion scored lower than those with lower lesion levels (lumbar: b = -1.22, SE = 0.34; sacral: b = -1.20, SE = 0.36; p = 0.001 for both). Better parent-reported and teacher-reported executive functions predicted higher total self-management (metacognitive: b = -0.03, SE = 0.01; behavioral regulation: b = -0.04, SE = 0.01; p < 0.05 for both). INTERPRETATION: On average, all participants improved in self-management over time. Additionally, baseline superiority in self-management for adolescents and young adults without a shunt, less severe lesions, better executive functions, and higher SES persisted over time.

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PURPOSE: This study examined preliminary psychometrics of the Adolescent/Young Adult Self-Management and Independence Self-Report Scale (AMIS II SR). METHODS: Adolescents and adults (N = 159; 13-38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one-third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. RESULTS: Item-to-total correlations support the AMIS II SR total scale (r = .38-.79) and its two subscales: condition (r = .49-.67) and independent living (r = .49-.85). Internal consistency reliability was high (α = .91-.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self-management as first-order factors and a second-order overall self-management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. CONCLUSIONS: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self-management and independence.

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AIM: The purpose of this study was to examine the trajectories of condition and independent living self-management in youth with spina bifida (SB). METHODS: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self-management and its subscales (condition and independent living) were estimated using linear mixed-effect models as a function of respondents' demographics. RESULTS: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty-seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self-management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self-management depended on sex; only males demonstrated increasing growth ( ß Ì‚ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self-management when compared with White ( ß Ì‚ diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino ( ß Ì‚ diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. CONCLUSION: This study provides evidence of differences in growth of self-management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self-management behaviours over time in young adults with SB can identify subgroups in need of further study.

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OBJECTIVE: This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. METHODS: AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. RESULTS: Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. CONCLUSIONS: The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

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PURPOSE: The purpose of this longitudinal study was to evaluate the internal consistency reliability and construct validity of the Adolescent/Young Adult Self-Management and Independence Scale-II (AMIS-II), an interview-based measure of self-management for youth with chronic health conditions. METHODS: A diverse sample of adolescents and young adults (AYA) with spina bifida (SB) (n = 64 AYA; mean 20.88; age range 18-25 years) completed an AMIS-II interview. Six years earlier, parents from 55 families completed questionnaires that assessed children's responsibility for SB-related care (Sharing of Spina Bifida Management Responsibilities) and their ability to perform skills across condition-related tasks (The Spina Bifida Independence Survey). Parents also reported on child's communication skills, adaptive behaviors, and independent management of finances (Adaptive Behavior Assessment System-Second Edition; Scales of Independent Behavior-Revised). Descriptive and correlational analyses were conducted to assess the construct validity and the internal consistency reliability of the AMIS-II. RESULTS: The AMIS-II demonstrated excellent internal consistency reliability (AMIS-II total scale α= 0.95; subscales α= 0.90 -0.91). Evidence in support of construct validity was found in associations between the AMIS-II and measures of child responsibility for SB-related care, ability to perform condition-related skills, and adaptive behaviors (r's = 0.378 -0.777; p's < 0.05). CONCLUSION: This study provides further evidence of strong reliability and validity for the AMIS-II. Additional research with this measure will facilitate a better understanding of factors related to self-management behaviors in adolescents and young adults with spina bifida.

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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.

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INTRODUCTION: ED visits for gastrostomy tube-related complications are common, and many are related to tube displacement. Evidence-based practices can provide standardized care. METHODS: This study was an evidence-based project to develop and implement an algorithm for the care of patients with a displaced gastrostomy tube in the emergency department. Providers were educated on the algorithm, and clinical practice change was evaluated. Provider knowledge was assessed using pretest and posttest; analyses included paired t test. Descriptive statistics of electronic medical record data on confirmation method, documentation, and referral were reported. RESULTS: Provider knowledge was improved after the education (n = 22; t(21) = -3.80; P = 0.001). After the education, procedure notes were used and completed in 95% of the cases. Appropriate use of the confirmation method was present in 95% of the cases, and all cases were referred to the gastrostomy/specialty clinic. DISCUSSION: Educating providers regarding care for displaced gastrostomy tubes increased their knowledge. A standardized algorithm improved care by decreasing the use of contrast studies, improving documentation, and referring patients to the gastrostomy/specialty clinic. This evidence-based algorithm offered health care providers a protocol to ensure consistent care for children in the emergency department and support for families.

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OBJECTIVE: Achieving condition-related autonomy is an important developmental milestone for youth with spina bifida (SB). However, the transfer of condition-related responsibility to these youth can be delayed due to parent factors. This study aimed to investigate two potential pathways by which maternal factors may be associated with condition-related responsibility among youth with SB: (a) Maternal adjustment → perception of child vulnerability (PPCV) → youth condition-related responsibility; and (b) Maternal PPCV → overprotection → youth condition-related responsibility. METHODS: Participating youth with SB (N = 140; Mage=11.4 years, range = 8-15 years) were recruited as part of a longitudinal study; data from three time points (each spaced 2 years apart) from the larger study were used. Mothers reported on personal adjustment factors, PPCV, and overprotection. An observational measure of overprotection was also included. Mothers, fathers, and youth with SB reported on youths' degree of responsibility for condition-related tasks. Analyses included age, lesion level, IQ, and the dependent variables at the prior wave as covariates. RESULTS: Bootstrapped mediation analyses revealed that PPCV significantly mediated the relationship between maternal distress and youth responsibility for medical tasks such that higher levels of distress at Time 1 predicted higher levels of PPCV at Time 2 and lower youth medical responsibility at Time 3. Furthermore, self-reported maternal overprotection significantly mediated the relationship between maternal PPCV and youth responsibility for medical tasks. CONCLUSIONS: Maternal personal distress, PPCV, and self-reported overprotection are interrelated and affect youth's condition-related responsibility. Interventions for mothers of youth with SB that target these factors may improve both maternal and youth outcomes.

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PURPOSE: The measurement of Quality of life (QOL) in adolescents and especially in adolescents with disabilities is limited, often by an assessment of function rather than perception. This analysis explores QOL in adolescents and young adults (AYA) with and without Spina Bifida (SB) from the perspective of AYA and their parents. DESIGN AND METHODS: A descriptive study using content analysis was conducted as a component of a larger multi-site mixed-method study of secondary conditions and adaptation. Participants responded to a single open-ended question on the meaning of quality of life. RESULTS: Descriptive accounts from 209 families generated the following shared categories: an engaged family, a positive life, the goal of independence, being healthy, essential needs for living, having friends, relying on faith, and romantic relationships. A unique category emerged from parents, doing what AYA wants to do. CONCLUSIONS: Family was the most frequently nominated component of QOL. The centrality of family in QOL is an important finding generally not assessed in measures of QOL or even less in health-related QOL instruments. PRACTICE IMPLICATIONS: Findings illustrate the importance of evaluating overall QOL from the perspective of AYA and their parents.

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PURPOSE: Psychometric data are reported for a new Global Family Quality of Life Scale (G-FQOLS) (3-items) evaluating family members, parents and adolescent/young adults (AYA). METHODS: Families (N= 209) were interviewed in a study addressing secondary conditions and adaptation in families of AYA with and without spina bifida (SB). Principal component factor analysis with Varimax rotation, Cronbach alpha, and Intraclass correlation (ICC) for parent-AYA agreement of FQOL assessment were conducted. RESULTS: A single factor with an eigenvalue greater than 1 was identified. Factor loadings were 0.79-0.94. Internal reliabilities were strong (α= 0.86-0.90). ICC coefficients between parent and AYA ratings were 0.38-0.48. CONCLUSION: This study provides preliminary support for the G-FQOLS. This global appraisal of Family Quality of Life (FQOL) reflects a participant's personal weighting of domains important to him/her.

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Purpose To describe the impact of family functioning on the self-management of type 2 diabetes (T2DM) and depression in a subsample of women who completed a randomized clinical trial using vitamin D3 (5000 or 50,000 IUs weekly) for depression treatment. Background Women are at higher risk for increased severity of T2DM when experiencing depression. Methods Narrative inquiry was used. A semi-structured interview was conducted to understand helpful strategies and barriers in managing T2DM and depression. In addition, women were asked their meaning of family quality of life (FQOL). Results Twenty-one women participated after completion of the six-month final visit in the randomized clinical trial. The mean age was 55.2 years. Participants were 24% Hispanic, 48% African-American, and 52% Caucasian. The major themes generated related to family issues that impacted their self-management, yet participants did not want to "bring fault" to their families. Three themes emerged: (a) experience of family hardships-"it's been hard for me," (b) lack of disclosure to family about being depressed-"no point in talking to them," and (c) the need for connectedness with family and others-"the way it used to be… close as a family." Conclusion Family-centered approaches could address barriers to self-management. A "family lens" for practice and research may improve health outcomes.

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To review the literature on the prevalence of depressive symptoms in parents of children with spina bifida (SB) and factors related to these symptoms. A search was conducted using the major health databases (CINAHL, MEDLINE, and PsycINFO). Nineteen studies were identified that met inclusion and exclusion criteria. A context, process, and outcome framework was used to organize the findings. This review identified both: (a) a high prevalence of parental depressive symptoms (PDS); and (b) specific factors: demographics, condition, child, family functioning, and parent factors that explained 32-67% of parent depressive symptoms (PDS). Although contextual factors were important, they alone were not sufficient to explain PDS. Process factors accounted for more variance in PDS than context factors. Findings warrant implementation of depression screening in parents of children with spina bifida. This review identified factors related to PDS and highlighted gaps in the literature to guide future research.

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PURPOSE: The purpose of this study was to explore factors related to parental depressive symptoms (PDS) and family quality of life (FQOL) in parents of adolescents and young adults (AYA) with and without a specific chronic health condition (CHC), spina bifida. METHODS: Two hundred and nine parents of AYA (112 with SB; and 97 without) and their AYA (46% males and 54% females) took part in a multi-site cross-sectional descriptive correlational study. In telephone interviews parents reported on measures of family satisfaction, resources, cohesion, stress, demographic and clinical data. RESULTS: In the multivariate analyses, 38% of the variance of PDS was explained by family income, family resources and parent stress. Having a child with SB was not predictive of PDS. However, having a child with SB, along with family satisfaction, parent stress and PDS explained 49% of the variance of FQOL. PDS partially mediate the relationship of family resources and FQOL. CONCLUSION: PDS, family stress, and resources should be evaluated routinely, especially for those with low income. Parents of AYA with SB who have elevated PDS are at increased risk of having lower reported FQOL.

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