Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.

Effects of prenatal alcohol exposure on neurobehavioural development and volume of rostral cingulate cortex subregions.

BACKGROUND: Maternal alcohol consumption during pregnancy can have widespread and long-lasting effects on children's cognition, behaviour, brain function and structure. The pregenual anterior cingulate cortex (ACC) and the anterior midcingulate cortex (MCC) mediate emotional and cognitive behaviours that are affected by prenatal alcohol exposure. However, the neurobehavioural development of the pregenual ACC and anterior MCC has not been examined in people with prenatal alcohol exposure. METHODS: We recruited 30 children and adolescents with prenatal alcohol exposure and 50 age- and gender-matched unexposed controls. We acquired structural MRI data sets on a 3 T scanner. We manually delineated 2 areas of the rostral cingulate cortex - the pregenual ACC and the anterior MCC - and compared them between groups. We measured behavioural and emotional problems using the Behaviour Assessment System for Children, 2nd Edition, Parent Rating Scale, and then explored their associations with rostral cingulate cortex volumes. RESULTS: Intracranial-normalized volumes of the right pregenual ACC and the right total rostral cingulate cortex were significantly smaller in individuals with prenatal alcohol exposure than in unexposed controls. The volume of the right anterior MCC had a significant positive association with scores on the Internalizing Problems scale in individuals with prenatal alcohol exposure. LIMITATIONS: This study was cross-sectional, and detailed information about the timing and amount of exposure was not always available. CONCLUSION: Prenatal alcohol exposure is associated with lower volumes in the right pregenual ACC. This finding may underlie some of the emotional and behavioural problems experienced by individuals with prenatal alcohol exposure.

Suicidality and Associated Factors Among Individuals Assessed for Fetal Alcohol Spectrum Disorder Across the Lifespan in Canada.

OBJECTIVE: Individuals with fetal alcohol spectrum disorder (FASD) experience a range of complex neurodevelopmental, psychological, and socioenvironmental vulnerabilities. There is growing evidence that suicidal ideation, attempts, and death by suicide are significant concerns within this population. In this study, we (1) determined the rate of suicidal ideation/attempts in a large group of individuals with prenatal alcohol exposure (PAE) who were assessed for FASD in Canada and (2) investigated the associations between suicidal ideation/attempts and select demographic and biopsychosocial factors in this group. METHOD: A secondary analysis of data from Canada's National FASD Database, a national repository of clinical information gathered through FASD assessment and diagnostic clinics across the country, was conducted. Descriptive analyses, chi-square/Fisher's exact tests, and binary logistic regression were used to examine demographic and biopsychosocial variables and their associations with suicidality. RESULTS: In our sample of 796 participants (Mage = 17.7 years, range = 6-59; 57.6% male) assessed for FASD, 25.9% were reported to experience suicidal ideation/attempts. Numerous demographic and biopsychosocial factors were found to be significantly associated with suicidal ideation/attempts. The strongest associations with suicidal ideation/attempts were substance use, history of trauma/abuse, and impaired affect regulation. CONCLUSIONS: With this study, we contribute to the emerging evidence of elevated risk of suicidality among individuals with PAE/FASD and improve our understanding of factors that may exacerbate this risk. Findings have relevance for improving screening, prevention, and proactive treatment approaches for individuals with PAE and FASD, their families, and wider support systems.

Cross-ministry data on service use and limitations faced by children in special education.

BACKGROUND: Children with disabilities often face limitations that cross support sectors. OBJECTIVE: Our aim was to measure cross-ministry service use, outcomes, and functional limitations faced by children who qualified for special education. METHODS: We used longitudinal British Columbia ministry data linked to children (0-18y) registered in K-12 education. Children were grouped by special education funding (most to least; Level 1, Level 2, Level 3, Unfunded, and no special education), and related to 1) service use patterns, 2) the age they first used disability services, and 3) functional limitations reported in health visits. We also reported how length of special education use related to disability service use. RESULTS: Of 111,274 children, 154(0.1%) were Level 1, 4427(4.0%) Level 2, 2897(2.6%) Level 3, 13472(12.1%) Unfunded, and 90324(81.2%) not in special education. Children with higher funding levels, compared to lower levels of funding, generally were more likely to experience poorer outcomes, have functional limitations, have service needs, and receive early support. One exception was children with serious behavioral/mental health special education coding, which had poorer outcomes for their level of funding. Children received child disability supports early (about half of users started by 4y), but use was mostly limited to those with many years (9+years) of funded special education (70.7% of the all users) and biased to certain special education codes (i.e., Level 1, severe intellectual disability, and autism). CONCLUSIONS: This study provides evidence of the long-term, diverse needs of children in special education and may be used to inform decisions surrounding their support.