Long-term Adaptive Functioning Research Articles

Youth Ambassadors for Disaster Preparedness: Using Psychological First Aid in Times of Crisis

Introduction. COVID-19 has been declared as a pandemic by the World Health Organization. This global disaster has impacted people in various ways, such as the practice of physical distancing and the large-scale social restriction program implemented by the government. This situation of crisis also leads to mental health problems for those who are facing it. Method. We initiated a program with the goal of creating youth ambassadors for disaster preparedness, focusing on the mental health aspect of facing disasters. Nineteen undergraduate students with a psychology background were selected and given proper training on psychological first aid (PFA), which aims to help those affected by this disaster by fostering short and long-term adaptive functioning. Result. The youth ambassador team carried out multiple programs, such as psycho-education webinars held online multiple times. They also gave help to Indonesian students currently studying abroad in Italy in the form of interactive sessions. Discussion. The program gives promising results, with the training enabling the students to function as youth ambassadors and spokesperson on mental health during this disaster, gives them the tools they need to help others in the form of PFA. The training module could be implemented further to create more ambassadors working for this cause.

Neurocognitive predictors of adaptive functioning trajectories among youth with spina bifida

ABSTRACT 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.

The Neurological Predictor Scale Predicts Adaptive Functioning via Executive Dysfunction in Young Adult Survivors of Childhood Brain Tumor.

Survivors of childhood brain tumors experience neurological sequelae that disrupt everyday adaptive functioning (AF) skills. The Neurological Predictor Scale (NPS), a cumulative measure of tumor treatments and sequelae, predicts cognitive outcomes, but findings on its relation to informant-reported executive dysfunction (ED) and AF are mixed. Given known effects of frontal-subcortical system disruptions on AF, this study assessed the NPS' relationship with AF as mediated by frontal systems dysfunction, measured by the Frontal Systems Behavior Scale (FrSBe). 75 participants (Mage = 23.5, SDage = 4.5) were young adult survivors of childhood brain tumors at least 5 years past diagnosis. FrSBe and Scales of Independent Behavior-Revised (SIB-R), a measure of AF, were administered to informants. Parallel multiple mediator models included Apathy and ED as mediators, and age at diagnosis and time between diagnosis and assessment as covariates. More complex treatment and sequelae were correlated with poorer functioning. Mediation models were significant for all subscales: Motor Skills (MS), p=.0001; Social Communication (SC), p=.002; Personal Living (PL), p=.004; Community Living (CL), p=.007. The indirect effect of ED on SC and CL was significant; the indirect effect of Apathy was not significant for any subscales. More complex tumor treatment and sequelae were associated with poorer long-term AF via increased ED. Cognitive rehabilitation programs may focus on the role of executive function and initiation that contribute to AF, particularly SC and CL skills, to help survivors achieve comparable levels of independence in everyday function as their peers.

Psychological First Aid: A Model for Disaster Psychosocial Support for the Perinatal Population.

The psychosocial needs of childbearing families drastically change after a disaster. Perinatal nurses providing postdisaster maternal-newborn care at community shelters, field hospitals, or acute care facilities must be prepared as "first responders" to address the immediate psychological distress and social needs of women and families in the first few chaotic days or weeks. The purpose of this article is to demonstrate ways nurses can integrate psychosocial and interpersonal interventions in perinatal disaster care using the framework of Psychological First Aid (PFA) developed by a team of mental health experts, along with The National Child Traumatic Stress Network and the United States (US) National Center for posttraumatic stress disorder (PTSD). The PFA framework offers evidence-informed stepwise approaches nurses can employ within their scope of practice aimed at reducing disaster survivors' initial distress and to promote short- and long-term adaptive functioning. Purposive interactions are suggested to provide emotional support, empathy, and guidance to reduce stress, restore coping skills, and help families use their strengths to begin the recovery process. Nurse leaders engaged in hospital disaster planning need to ensure that essential resources and community networks are available to provide mental health and psychosocial support for childbearing women and families in a postdisaster environment.

Home Environment and Self-Efficacy Beliefs among Native American, African American, and Latino Adolescents.

Context helps determine what individuals experience in the settings they inhabit. Context also helps determine the likelihood that those experiences will promote adaptive development. Theory suggests likely interplay between various aspects of home context and development of ideas about self that influence patterns of development for children. This study addressed relations between two aspects of home life (companionship and investment, modeling and encouragement) and three types of self-efficacy beliefs (enlisting social resources, independent learning, self-regulatory behavior) considered important for long-term adaptive functioning. The study focused on three groups of minority adolescents (Native American, African American, Latino). Relations were examined using regression models that also included four aspects of household risk that often hinder the development of self-efficacy. Although findings varied somewhat across the three groups, significant relations emerged between the two domains of home life examined and self-efficacy beliefs in all three groups, even controlling for overall household risk. Companionship and investment appeared particularly relevant for African American adolescents, while modeling and encouragement appeared particularly relevant for Native American adolescents. Both were relevant for Latino adolescents.

Does Apolipoprotein e4 Status Moderate the Association of Family Environment with Long-Term Child Functioning following Early Moderate to Severe Traumatic Brain Injury? A Preliminary Study.

To examine whether apolipoprotein e4 (APOE) status moderates the association of family environment with child functioning following early traumatic brain injury (TBI). Sixty-five children with moderate to severe TBI and 70 children with orthopedic injury (OI) completed assessments 6, 12, 18 months, and 3.5 and 6.8 years post injury. DNA was extracted from saliva samples and genotyped for APOE e4 status. Linear mixed models examined moderating effects of APOE e4 status on associations between two family environment factors (parenting style, home environment) and three child outcomes (executive functioning, behavioral adjustment, adaptive functioning). Children with TBI who were carriers of the e4 allele showed poorer adaptive functioning relative to non-carriers with TBI and children with OI in the context of low authoritarianism. At high levels of authoritarianism, non-carriers with TBI showed the poorest adaptive functioning among groups. There were no main effects or interactions involving APOE and executive functioning or behavioral adjustment. The APOE e4 allele was detrimental for long-term adaptive functioning in the context of positive parenting, whereas in less optimal parenting contexts, being a non-carrier was detrimental. We provide preliminary evidence for an interaction of APOE e4 status and parenting style in predicting long-term outcomes following early TBI. (JINS, 2016, 22, 859-864).

Long-Term Neuropsychological Profiles and Their Role as Mediators of Adaptive Functioning after Traumatic Brain Injury in Early Childhood.

The objectives of the study were to characterize long-term neuropsychological outcomes following traumatic brain injury (TBI) sustained during early childhood, and determine whether identified neuropsychological impairments mediated the effect of TBI on long-term adaptive functioning. Participants included 16 children with severe TBI, 42 children with moderate TBI, and 72 children with orthopedic injuries (OI) sustained between ages 3 and 7 years. Children completed neuropsychological tests and caregivers completed a structured interview of child adaptive functioning at 6.9 (±1.10) years post-injury. Profile analysis and multiple mediator modeling were employed. Children with severe TBI demonstrated poorer fluid reasoning and inhibitory control than both children with moderate TBI and OI, as well as slower processing speed than the OI group. Both fluid reasoning and processing speed were significant independent mediators of the effect of severe TBI on adaptive functioning. No neuropsychological measure significantly mediated the effect of moderate TBI on adaptive functioning. Children sustaining early severe TBI demonstrate persisting neuropsychological impairments into adolescence and young adulthood. The impact of severe TBI on children's long-term adaptive functioning is mediated in part by its effects on fluid reasoning and processing speed.

Long-Term Adaptive Functioning of Patients with Hurler Syndrome and Adrenoleukodystrophy Following Allogeneic Hematopoietic Cell Transplantation

Long-Term Adaptive Functioning of Patients with Hurler Syndrome and Adrenoleukodystrophy Following Allogeneic Hematopoietic Cell Transplantation

Long-term outcomes after allogeneic hematopoietic stem cell transplantation for metachromatic leukodystrophy: the largest single-institution cohort report.

BackgroundMetachromatic Leukodystrophy (MLD) is a rare, fatal demyelinating disorder with limited treatment options. Published outcomes after hematopoietic stem cell transplantation (HSCT) are scant and mixed. We report survival and function following HSCT for a large, single-center MLD cohort.MethodsTransplant-related data, survival and serial measures (brain MRI, nerve conduction velocity (NCV), neurologic and neuropsychology evaluations) were reviewed. When possible, parental interviews informed current neurologic status, quality-of-life, and adaptive functioning. Gross motor and expressive functions for late-infantile (LI-MLD) and juvenile (J-MLD) patients were described using previously reported, MLD-specific scales.ResultsForty patients with confirmed MLD have undergone HSCT at our center. Twenty-one (53 %) survive at a median 12 years post-HSCT. Most deaths (n = 17) were treatment-related; two died from disease progression. Survival did not depend upon MLD subtype or symptom status at transplant. LI-MLD patients survive beyond reported life expectancy in untreated disease.Abnormal brain MRI and peripheral nerve conduction velocities (NCV) were common before HSCT. Following transplant, fewer patients experienced MRI progression compared to NCV deterioration.Sixteen LI-MLD and J-MLD survivors were evaluable for long-term gross motor and/or expressive language functioning using existing MLD clinical scoring systems. While most J-MLD patients regressed, the aggregate cohort demonstrated superior retention of function compared to published natural history.Seventeen LI-MLD, J-MLD and adult subtype (A-MLD) survivors were evaluable for long-term adaptive functioning, activities of daily living, and/or cognition. Relative cognitive sparing was observed despite overall global decline.Five sibling pairs (one LI-MLD and four J-MLD), in which at least one underwent transplant in our cohort, were evaluable. Within each familial dyad, survival or function was superior for the treated sibling, or if both siblings were transplanted, for the pre-symptomatic sibling.ConclusionsHSCT is a viable treatment option for MLD, but has significant limitations. Later-onset phenotypes may benefit most from early, pre-symptomatic transplant. Until superior, novel treatment strategies are demonstrated, MLD patients should be carefully considered for HSCT.

Assessment of Early Impact of Cyclone Thane on Physical and Psychosocial Environment

To the Editor: Disasters have the greatest effect on the most vulnerable groups, especially children [1–3]. Cyclone Thane hit the coast of Tamil Nadu and Pondicherry on 29th and 30th of December 2011 and destroyed houses, boats, standing crops, livestock and livelihoods. A questionnaire based study was conducted at JIPMER, Pondicherry 2 weeks after the cyclone to study its early impact of on the physical and psychosocial environment of children. Data including demographic parameters, feeding, damage to school and house, problems of electricity, water, transport, telecommunication and relief measures related to the disaster were collected in a structured proforma from 100 parentchild dyads from Thane affected areas. Likert scale (0–3) was used to quantify stress among parents and children. There was significant damage to home and schools secondary to falling of trees. Mean duration of return to normalcy for water supply, electricity and transport were 6.5, 10.8 and 3.2 d respectively. Cost of candles, kerosene and milk was significantly increased. Infants and young children were breastfed as usual and fed with the routine food items available at home during the first week after Thane. Only 35 % had used boiled water for drinking. Cow’s milk was not available for young children for 3–5 d after the disaster. No breastmilk substitutes (BMS) or feeding bottles were distributed. 39 % adults and 6 % children had minor illness which included 49 % upper respiratory tract infection, 33 % lower respiratory tract infection and 18% diarrhea. Significant level of stress was noted among parents and children. Disruption of water supply for more than 2 d and damage to house and school were significantly associated with parental stress. This study showed that Cyclone Thane had significant early impact on the physical and psychosocial environment of children. However, the long term effects including post traumatic stress disorder need to be assessed. Psychological first aid in the immediate aftermath of disaster may reduce the initial distress and foster short and long-term adaptive functioning [4]. Careful tracking of important health and mental health problems that confound recovery may lead to appropriate interventions that can help reduce morbidity associated with the inevitable next catastrophe [5].

Long-term Adaptive Functioning Outcomes of Children With Inherited Metabolic and Genetic Diseases Treated With Hematopoietic Stem Cell Transplantation in a Single Large Pediatric Center

Over the past 2 decades, hematopoietic stem cell transplantation (HSCT) has been used as therapy for selected inherited metabolic and genetic diseases (IMGDs). The primary objective of HSCT for these disorders has been to promote long-term survival, optimize quality of life, and improve neurocognitive performance. We performed 45 HSCTs for 44 children with IMGDs (13 related and 32 unrelated); 24 HSCTs for 23 children with Hurler syndrome, 8 for malignant infantile osteopetrosis, 6 for X-linked adrenoleukodystrophy, 2 for metachromatic leukodystrophy, 2 for Gaucher disease, 1 for Ganglioside Monosialic Acid (GM) gangliosidosis, 1 for sialiosis (type 2), and 1 HSCT for Niemann-Pick type A. At a median follow-up of 7.2 years (range: 2.2 to 17.6 y) 18 of 23 patients with Hurler syndrome are alive, 15 attended regular school. Thirteen of 18 were ambulatory, 2 had mobility difficulties, and 1 uses wheelchair. For non-Hurler patients, 5 children suffered secondary graft failure and 4 of them died from progressive disease. The remaining children with osteopetrosis are alive and most children attended regular school. One out of the 4 survivors with adrenoleukodystrophy has been transferred to the adult follow-up clinic and he is in full-time employment. Parents' perspectives and expectations of HSCT in these IMGDs were positive and supportive to continue to offer HSCT for these disorders.

Psychological First Aid

Psychological First Aid (PFA) consists of a systematic set of helping actions aimed at reducing initial post-trauma distress and supporting short- and long-term adaptive functioning. Designed as an initial component of a comprehensive disaster/trauma response, PFA is constructed around eight core actions: contact and engagement, safety and comfort, stabilization, information gathering, practical assistance, connection with social supports, information on coping support, and linkage with collaborative services. PFA for children and adolescents focuses on these same core actions, with modifications to make them developmentally appropriate. Formal evaluation of the effectiveness of PFA is needed and it is hoped that development of a PFA Field Operations Guide will facilitate such evaluation.

Independent frontal-system deficits in schizophrenia: cognitive, clinical, and adaptive implications

This study examined whether frontal-system impairments in schizophrenia occur independently of one another and whether they have distinct implications for information processing, symptom severity, and adaptive functioning. We assessed 26 medication-free schizophrenic outpatients and 18 normal control subjects on eight frontally mediated tasks, semantic information processing, IQ, the BPRS, and long-term psychosocial adaptation. Schizophrenic subjects showed three types of deficits, which were uncorrelated with one another: (1) Executive dysfunction (inflexible problem solving) was related to decreased use of expectancy during controlled semantic priming, lower intelligence, more severe negative symptoms and stereotyped mannerisms. (2) Disinhibition of responses (to irrelevant stimuli) was associated with increased automatic priming, a trend for more severe hallucinations, and was unrelated to intelligence. (3) Motor dyscoordination (inaccurate, dysfluent motor sequencing) was not related to semantic processing, intelligence, or symptoms. Furthermore, all three impairments were unrelated to generalized slowness, age, sex, illness length, or pre-washout neuroleptic dose. Two deficits accounted for aspects of long-term psychosocial adaptation, even after statistical correction for IQ: Executive dysfunction was associated with younger illness onset, poor purposefulness and planning, impaired social relations, and lower global functioning. Motor dyscoordination was associated with poor treatment outcome and restricted educational advancement. Furthermore, executive and motor deficits interacted significantly; subjects who had both deficits showed the least favorable treatment outcome. These findings are neither consistent with generalized impairment nor with a unitary `frontal syndrome' in schizophrenia. They provide preliminary evidence for at least three frontal-system deficits (dorsolateral, orbital, and premotor), which are dissociable from one another, can occur without general intellectual impairment, and have distinct implications for long-term adaptive functioning.