Parent Perspectives of School/Daycare Experiences in Young Children Newly Diagnosed With Diabetes.

OBJECTIVE: A central part of family adjustment to a new diagnosis of type 1 diabetes (T1D) is integrating T1D management into the child's school/daycare. This may be particularly challenging for young children who rely on adults for their diabetes management. This study aimed to describe parent experiences with school/daycare during the first 1.5 years following a young child's T1D diagnosis. METHODS: As part of a randomized controlled trial of a behavioral intervention, 157 parents of young children with new-onset (<2 months) T1D reported on their child's school/daycare experience at baseline and at 9- and 15-month post-randomization. We used a mixed-methods design to describe and contextualize parents' experiences with school/daycare. Qualitative data were collected via open-ended responses, and quantitative data were collected from a demographic/medical from. RESULTS: While most children were enrolled in school/daycare at all time points, over 50% of parents endorsed that T1D affected their child's enrollment, rejection, or removal from school/daycare at 9 or 15 months. We generated five themes related to parents' school/daycare experiences: Child factors, Parent factors, School/Daycare factors, Cooperation between Parents and Staff, and Socio-historical factors. Parents of younger children and those with lower subjective socioeconomic status were significantly more likely to endorse challenges with school/daycare enrollment. CONCLUSIONS: School/daycare settings present challenges for parents of young children with T1D. Changes may need to occur across contexts to support early childhood education, including advocacy resources for parents to navigate school policies, increased training for school staff, and healthcare team outreach initiatives to parents and schools.

Longitudinal Trajectories of Clean Intermittent Catheterization Responsibility in Youths with Spina Bifida.

PURPOSE: Clean intermittent catheterization (CIC) responsibility among youths with spina bifida is not well studied. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregiver-CIC to self-CIC. MATERIALS AND METHODS: We performed a secondary analysis of a prospective cohort study of youths with spina bifida. Participants aged 8-15 years originally recruited from 4 hospitals and a statewide spina bifida association were followed every 2 years. Participants who required CIC were included. Group-based trajectory modeling was used to isolate distinct trajectories of CIC responsibility, which was the primary outcome and was graded from caregiver-CIC to shared-CIC to self-CIC. Predictors of trajectory group membership were entered into multivariate logistic regression models and included various demographic, clinical and psychosocial characteristics such as CIC adherence and CIC mastery. RESULTS: Of 140 youths in the original cohort study, 89 met eligibility criteria for this study. Mean age was 11 years at enrollment and 93% of patients had myelomeningocele. Two distinct trajectory groups emerged: 17% of patients had a low-flat trajectory and 83% had a high-increasing trajectory of CIC responsibility, with shared-CIC by age 8-9 years and increasing self-CIC responsibility thereafter. Significant predictors of group membership in the high-increasing trajectory group included less severe spinal lesion levels, higher CIC mastery and lower CIC adherence. CONCLUSIONS: Nearly 1 in 5 youths with spina bifida in our cohort persistently required caregiver-CIC over time, while the remainder achieved shared-CIC responsibility by age 8-9 years, with increasing self-CIC responsibility thereafter.

Medical responsibility growth in youth with spina bifida: Neuropsychological and parenting predictors.

OBJECTIVE: For youth with spina bifida (SB) there is a growing need to understand how responsibilities for health care are transferred from family- to self-management over time. The current study examined trajectories of responsibility for medical tasks in youth with SB across adolescence, as well as executive functioning/attention and parenting behaviors as predictors of growth. METHOD: As part of a larger, longitudinal study, 140 youth with SB (ages 8-15 at time 1; Mage = 11.43) reported on their responsibility for relevant medical tasks across five time points. Attention and executive functioning were assessed via performance-based and parent/teacher-report methods. Parenting behaviors consisted of acceptance, behavioral control, and psychological control and were assessed via observational and parent-report. RESULTS: Growth curve analyses revealed significant increases in youth medical responsibility across all SB tasks over time. Attention, executive functioning, maternal behavioral control, and paternal psychological control emerged as predictors of growth parameters in responsibility for communicating about SB and managing health care appointments. CONCLUSION: Results indicated that youth with SB obtain increasing responsibility for their health care over time. The transfer of responsibility for SB management may differ based on individual (i.e., the child's neuropsychological abilities) and family level (i.e., parenting behaviors) factors. Further research is needed to understand how growth in medical responsibility relates to changes in other aspects of SB self-management across development, such as medical adherence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

The Adolescent/Young Adult Self-Management and Independence Scale (AMIS-II): Expanding evidence for validity and reliability.

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.

The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions.

PURPOSE: This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions. METHODS: The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self-management and the transition to adult health care; and (c) U.S.-based and international interventions focused on the transition to adult health care in young adults with SB. FINDINGS: Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self-management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition-related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. CONCLUSIONS: SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. CLINICAL RELEVANCE: The success of the process by which a child with SB transitions from pediatric to adult health care can have life-sustaining implications for the patient.

[Formula: see text]Neurocognitive predictors of adaptive functioning trajectories among youth with spina bifida.

Little is known about how youth with spina bifida (SB) acquire adaptive functioning skills across development. Therefore, the current study examined: (1) trajectories of adaptive functioning in youth with SB as they transitioned from childhood into adolescence, and (2) neuropsychological functioning as a potential risk factor for long-term adaptive functioning difficulties. Participants (n = 131 youth with SB) were recruited as part of a larger ongoing longitudinal study. Growth curves were used to examine changes over time across six adaptive functioning skills: communication, self-direction, functional academics, social, self-care, and home living skills. Additionally, youth's attention and executive functioning (i.e., working memory, planning/organizational skills, cognitive flexibility, inhibition) were assessed via questionnaires and performance-based assessments, and entered as predictors in the models. Youth's communication, self-direction, functional academics, self-care, and home living skills increased over time across age, whereas youth's social skills did not. Scaled scores for youth's social, communication, self-direction, and functional academics skills were generally within normal limits, whereas those for self-care and home living skills fell in the borderline range. Better attention and executive functioning predicted a higher intercept for many adaptive functioning abilities at 11.5 years old, above and beyond the influence of IQ. However, these variables did not predict growth in adaptive functioning. Results indicate that youth with SB acquire skills across development to better meet the demands of daily life. However, youth with poorer neurocognitive functioning may demonstrate adaptive functioning deficits in early childhood and benefit from timely intervention.

Predictors of Distinct Trajectories of Medical Responsibility in Youth with Spina Bifida.

OBJECTIVE: To determine if there are distinct developmental trajectories of medical responsibility in youth with spina bifida (SB) across ages 8-17 years and to identify condition-related, parental, and family systems predictors of membership in these trajectory groups. METHODS: Participants were 140 youth with SB and their parents who participated in four waves of a longitudinal study across 6 years (ages 8-15 years at Time 1). Multi-method (questionnaires and observed family interactions) and multi-respondent assessments were conducted during home visits. RESULTS: Findings revealed that there were two distinct developmental trajectories that characterized this sample, with one being labeled "high increasing" (two thirds of the sample) and one labeled "low increasing" (one third of the sample). Most predictor variables were significantly associated with trajectory group membership, with the exception of ethnicity, SES, and measures of conflict. When all significant univariate predictors were included in the same model, only intelligence quotient (IQ), family stress, and gender were retained as significant. CONCLUSIONS: Most youth exhibited relatively rapid increases in responsibility over the course of late childhood and adolescence, but there was a smaller portion of the sample that did not exhibit this type of developmental trajectory. The magnitude of the IQ effect on group differentiation appeared to attenuate the effects of most other predictors. It will be important for clinicians working with youth with SB to recognize that the transfer of medical responsibility from parent to child cannot be expected to unfold in the same manner for all families of youth with SB.

Technology usage and barriers to the use of behavioral intervention technologies in adolescents and young adults with spina bifida.

PURPOSE: The majority of behavioral intervention technologies (BITs) have been designed and targeted towards the general population (i.e., typically-developing individuals); thus, little is known about the use of BITs to aid those with special needs, such as youth with disabilities. The current study assessed adolescents and young adults with spina bifida (AYA-SB) for: 1) their technology usage, and 2) anticipated barriers to using technology to help manage their health. METHODS: AYA-SB completed a survey of their media and technology usage. A card sorting task that ranked and grouped anticipated barriers to using a mobile app to manage health was also completed. Ranked means, standard deviations, and the number of times a barrier was discarded were used to interpret sample rankings. RESULTS: AYA-SB reported less frequent technology and media use than the general population. However, differences emerged by age, with young adults endorsing higher usage than their younger counterparts. Top concerns focused on usability, accessibility, safety, personal barriers due to lack of engagement, technological functioning, privacy, and efficacy. CONCLUSIONS: AYA-SB appear to be selective users of technology. It is therefore critical that the design of BITs address their concerns, specifically aiming to have high usability, accessibility, and engagement.

Pathways by which Maternal Factors are Associated With Youth Spina Bifida-Related Responsibility.

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.

Longitudinal associations between neuropsychological functioning and medical responsibility in youth with spina bifida: The moderational role of parenting behaviors.

For youth with spina bifida (SB), the transfer of medical responsibilities from parent- to self-management is an important component of autonomy development. Youth with SB are at risk for neurocognitive impairments with inattention and executive dysfunction, which may impact their ability to take responsibility for medical tasks. However, adaptive parenting may buffer against the negative impact of executive/attentional dysfunction on levels of medical responsibility. Thus, this study examined the moderating roles of parenting behaviors and child age on the longitudinal associations between neuropsychological functioning and medical responsibility in youth with SB. Participants were recruited as part of a larger, longitudinal study. Youth with SB (N = 89, Mage = 11.10 years) completed a neuropsychological battery of executive functioning and attention measures at Time 1 (T1). Parents reported on youth's executive functioning/attention skills at T1, and child medical responsibility two years later at Time 2 (T2). Observational methods were used to assess parenting behaviors (warmth, behavioral and psychological control) at T1. Attention and cognitive shifting skills at T1 were positively related to child medical responsibility at T2. Two-way interactions between planning/organizing skills and paternal acceptance, and planning/organizing skills and paternal psychological control, were found. A three-way interaction between cognitive shifting skills, maternal acceptance, and child age was found. When conceptualizing risk factors for low medical responsibility in youth with SB, it is important to consider the family context beyond individual, cognitive factors. The results are discussed within the wider context of social-ecological models of medical responsibility.

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida.

OBJECTIVE: Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. METHOD: The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). RESULTS: In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. CONCLUSIONS: Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways.

Objective: Given the increased risk for cognitive deficits and development of depressive symptoms in youth with spina bifida (SB), this study aimed to examine two pathways through which depressive symptoms and neuropsychological dysfunction may be associated with medical autonomy in this population: (1) depressive symptoms as predictors of medical autonomy as mediated by attention/executive functioning (the cognitive scarring model), and (2) attention/executive functioning as predictors of medical autonomy as mediated by depressive symptoms (the cognitive vulnerability model). Methods: Participants were recruited as part of a larger, longitudinal study, and included 114 youth with SB (M age = 10.96 at Time 1), their parents, and teachers. Neuropsychological constructs included attention, working memory, and planning/organizing abilities, which were measured with questionnaire and performance-based data. Depressive symptoms and medical responsibility were assessed via questionnaires from multiple respondents. Results: Bootstrapped mediation analyses revealed that teacher-reported depressive symptoms significantly mediated the relations between neuropsychological functioning (i.e., attention and working memory) and medical responsibility (all p's < .05); neuropsychological dysfunction did not mediate the relationship between depressive symptoms and medical responsibility. Conclusions: One way in which neurocognitive dysfunction may hinder the development of medical autonomy in youth with SB is through an increased risk for depressive symptoms.

Featured Article: Psychosocial and Family Functioning Among Latino Youth With Spina Bifida.

Objective: This study examined differences in psychosocial and family functioning between Latino and non-Latino Caucasian youth with spina bifida (SB), and examined family functioning as a predictor of youth psychosocial functioning as moderated by ethnicity. Methods: Participants were part of a larger, longitudinal study (Devine, Holbein, Psihogios, Amaro, & Holmbeck, 2012) and included 74 non-Latino Caucasian youth with SB and 39 Latino youth with SB (M age = 11.53, 52.2% female). Data were collected at Time 1 and 2 years later, and included questionnaire and observational data of psychosocial and family functioning. Results: Latino youth demonstrated fewer externalizing symptoms, less family conflict, but also less social competence. Family conflict was associated with psychosocial functioning in Latino youth, while family cohesion, conflict, and stress were associated with psychosocial functioning in non-Latino Caucasian youth. Conclusions: Psychosocial and family functioning, and their relationship over time, may be different in Latino versus Caucasian youth with SB.

Parental Perceptions of Child Vulnerability in Families of Youth With Spina Bifida: the Role of Parental Distress and Parenting Stress.

Objective: This longitudinal study aimed to investigate parental distress and parenting stress in relation to parental perception of child vulnerability (PPCV) in youth with spina bifida (SB). Methods: Parents of 140 youth with SB (ages 8-15 years at Time 1) were recruited as part of a longitudinal study; data were collected at two time points, spaced 2 years apart. Mothers and fathers completed questionnaires assessing levels of personal distress, parenting stress, and PPCV. Results: Mothers and fathers reported similar levels of personal distress, parenting stress, and PPCV, but reports of PPCV increased over time. For mothers, both personal distress and parenting stress were significantly associated with PPCV cross-sectionally, but not longitudinally. For fathers, there were significant cross-sectional and longitudinal associations between parenting stress and PPCV. The cross-sectional association between maternal parenting stress and PPCV was moderated by age, with a significant association only for older youth. Conclusions: For parents of youth with SB, personal distress, and parenting stress are related to parental perceptions of child vulnerability, and child age may moderate this relationship. Parental personal distress and parenting stress are important targets for future interventions.

Cultural Considerations for Autonomy and Medical Adherence in a Young Palestinian American Muslim Female With Spina Bifida: A Longitudinal Case Study in a Research Context.

This case study examines the unique presentation of a young Palestinian-American Muslim female, who is a part of an ongoing longitudinal study examining family and peer relationships, psychological adjustment, and neuropsychological functioning in youth with spina bifida. Throughout ten years of data collection, Palestinian-Arab culture and Islamic faith have consistently emerged as important factors that can be considered when interpreting this participant's general level of autonomy, medical autonomy, medical adherence, and psychological adjustment. This case study examines important aspects of adaptive and independent functioning for youth with spina bifida and how this family's culture interacts with these different domains of functioning. Moreover, it explores potential conflicts between an Arab collectivist family structure and Western biomedical ethics and suggests how clinicians might navigate these conflicts and bolster culturally-rooted strengths of families and patients from non-Western backgrounds.

A pilot test of the Self-Management and Research Technology project: A text message-based diabetes self-management program for adolescents.

The aims of this study are to: (1) examine the preliminary utility of the Self-Management and Research Technology (SMART) pilot project, (2) identify which adolescents were most likely to benefit from participation, and (3) examine interview feedback to inform future program iterations. Twenty-three adolescents ( Mage = 15.13 years) were enrolled in the six-week text message pilot program consisting of daily interactive blood glucose (BG) prompts and type 1 diabetes-related educational text messages. Medical charts were reviewed for hemoglobin A1c and to corroborate medical record and demographic data. Glucometer data were downloaded to calculate an average monthly BG level and daily BG monitoring frequency. No statistically significant improvements were observed pre-intervention to post-intervention in glycemic outcomes. Participants with a high text message response rate were more likely to demonstrate improvement in average monthly BG levels and daily BG monitoring frequency than those with a low text message response rate. Participants reported satisfaction with the text message program. The text message-based SMART pilot project demonstrated preliminary efficacy for a targeted subset of adolescents who were engaged with the program. Continued research with a larger sample and longer trial duration is warranted to evaluate the potential utility of text message-based interventions.

ADHD and Attention Problems in Children With and Without Spina Bifida.

Objectives: To identify differences in the diagnosis and treatment of attention deficit/hyperactivity disorder (ADHD) between typically developing children and children with spina bifida. Method: Sixty-eight children with spina bifida and 68 demographically matched, typically developing children participated in a larger, longitudinal study. Rates of maternal, paternal, and teacher reports of attention problems, as well as rates of maternal reports of ADHD diagnosis, diagnosing provider, pharmaceutical treatment, mental health treatment, and academic accommodations were obtained at 5 time points over a period of 8 years and were compared across groups. Results: Children with spina bifida were more likely to have an ADHD diagnosis and attention problems. Attention problems and ADHD diagnoses were first reported at earlier time points for children with spina bifida than typically developing children. Among children with ADHD or attention problems, children with spina bifida were more likely to be treated with medication, but they were just as likely to use mental health services and receive resource services at school. Conclusions: Children with spina bifida were diagnosed with ADHD and identified as having attention problems more frequently and at an earlier age. This finding could be due to earlier symptom development, greater parental awareness, or more contact with providers. Among those with ADHD or attention problems, stimulant medication was more likely to be prescribed to children with spina bifida, despite research that suggests it may not be as beneficial for them. Further research on the effectiveness of ADHD pharmacological treatment for children with spina bifida is recommended.

Protective Factors in Young Children With Type 1 Diabetes.

OBJECTIVE: To characterize protective factors in young children with type 1 diabetes, and evaluate associations among child protective factors and indicators of diabetes resilience, including better child and parent psychosocial functioning and glycemic control. METHODS: Parents of 78 young children with type 1 diabetes reported on child protective factors, child quality of life, parent depressive symptoms, and disease-specific parenting stress. A1c values were collected from medical records. RESULTS: Young children with type 1 diabetes were rated as having similar levels of protective factors as normative samples. Greater child protective factors were associated with indicators of diabetes resilience, including higher child quality of life and lower parent depressive symptoms and parenting stress. Regression analyses demonstrated that child protective factors were associated with 16% of the variance in parent-reported depressive symptoms. CONCLUSIONS: Attention to child protective factors can enhance understanding of adjustment to type 1 diabetes and may have implications for intervention.

Checking In: A Pilot of a Physician-Delivered Intervention to Increase Parent-Adolescent Communication About Blood Glucose Monitoring.

Low-cost, translatable interventions to promote adherence in adolescents with type 1 diabetes are needed. This study evaluated a brief physician-delivered intervention designed to increase parent-adolescent communication about blood glucose monitoring. Thirty adolescent-parent dyads completed baseline questionnaires and received the physician-delivered intervention. Participants completed follow-up questionnaires at 12 weeks; HbA1c and glucometer data were abstracted from medical charts. Parent-reported conflict surrounding diabetes management decreased from pre- to postintervention. Participants who reported adhering to the intervention plan (n = 15) demonstrated an increase in blood glucose monitoring frequency and trends in improved HbA1c and parental diabetes collaboration from pre- to postintervention. Participants and physicians reported overall satisfaction with the program. Results demonstrate initial feasibility as well as a trend toward improvement in diabetes-specific health indicators for parent-adolescent dyads who adhered to program components. Frequent joint review of glucometer data can be a useful strategy to improve type 1 diabetes-related health outcomes and parent-adolescent communication.