Perceptions on support, challenges and needs among parents and caregivers of children with developmental disabilities in Croatia, North Macedonia and Serbia: a cross-sectional study.

BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.

Psychological Alienation and Feeling of Self-Efficiency in Young Male and Female Adults.

In psychology, alienation is a condition of being separated or marginalized from other individuals or some larger segment of society. Self-efficacy is an individual's belief in their capacity to act in ways necessary to reach specific goals. This study was conducted to investigate the possible connectivity between psychological alienation and feelings of self-efficiency among young male and female adults. The study was conducted in April 2023, among 167 young people, aged 18-25 (M=22.28 ± 1.7SD). For this purpose, we used the Scale for psychological alienation and General self-efficacy. Results showed that there is a significant negative correlation between alienation and self-efficacy, meaning that the higher psychological alienation is, the lower self-efficacy is (t=-0.627; <0.001). There is a statistically significant difference between young male and female adults regarding alienation (t=-5.592; <0.001) e. g. males are reporting to be more alienated than females. Also, there is a statistically significant difference between young male and female adults regarding feeling of self-efficacy (t=4.692; <0.001) e.g. males feel less effective than females and in the scale for measuring meaninglessness (t=-2.966; 0.003) e. g. males feel more meaninglessness than females. In conclusion, psychological alienation and self-efficacy are correlated and there are gender differences regarding the two measured variables, in favor of the females.

Perceived Birth Trauma in Macedonian Women.

Although the childbearing is perceived as a normal and happy event, new research shows that psychological birth trauma is, however, a universal and not so rare phenomenon. Traumatic birth experiences can cause postnatal mental health disturbances, fear of childbirth in subsequent pregnancies and disruption to mother-infant bonding, leading to possible impaired child development. The purpose of this research was to evaluate collected data from several obstetric clinics, as well as from primary paediatric settings related to 'Birth Trauma' in order to review women with symptoms of post-traumatic stress disorder (PTSD) following childbirth. The study is prospective, starting from January 2021 and ending in December 2022. The psychological instrument used in this research is the Intersect Questionnaire, composed of 59 questions grouped in 8 parts. The obtained results from our study confirmed that birth trauma is not a rare phenomenon in our country. Symptoms correlated with PTSD were present as follows: unpleasant memories (2.7%), anxiety (38.54%), panic (6.47%), trying not to remember the delivery (4.04%), self-accusation (2.16%), negative emotions (1.89%), alienation (4.31%), irritation/aggression (1.89%), self-destruction (1.89%), impulsiveness (4.31%), problems with concentration (3.23%), and sleeping problems (21.88%). These results are alarming. It is imperative to better understand this vulnerable period in a woman's life. As a general conclusion, we must highlight the importance of perceived birth trauma in women, phenomena which has been confirmed worldwide and which must be overcome as quickly and as successfully as possible.

Extending Robot Therapy for Children with Autism Using Mobile and Web Application.

Robot treatments for children with autism have proven to be successful and effective. However, the resources needed for the treatments do not always meet the needs of the children. We overcame the lack of equipment and staff by extending the concept of robot therapy using a web and mobile application. This application enables greater availability and personification of the therapy itself. Its use in the majority of respondents contributes to improving their condition. This approach increases the flexibility of the therapy itself and makes it more accessible, enabling the patients to progress more rapidly. Although the robotic treatment presented in this paper is specific to children with autism, this approach can be generalized and applied to other areas where there are similar types of therapies.

Young People and Covid-19 Pandemic in Our Country.

The current COVID-19 pandemic has raised significant mental health consequences across the world. Even though healthcare workers provide psychological services, the mental health of the overall population often is cause for concern. Psychosocial stressors of the population play a critical role in impacting both the spread of the disease and the occurrence of emotional distress and psychological disorder, during and after an infectious disease outbreak. The inability to plan, to anticipate future events, and to exert control, at least partially, over external variables inevitably generate stress and tension. Subsequently, this condition can generate more or less discomfort depending on the subjective evaluation of the individual, an evaluation which is influenced by the individual's stable personality traits. In fact, subjective experiences are never unique: stimuli endowed with the same stressful power do not necessarily cause these reactions in different individuals, while stressful conditions of varying degrees can induce the same response in different people. The aim of this research was to evaluate some aspects of mental health using answers related to this pandemic of a group young people, selected by chance. Results showed important changes in quality of life, insecurity, changes in mood and behaviour as well as not optimistic view for the future life. Discussion confirmed similar finding about young people opinions from other counties. Additionally, some mediating measures are proposed.

Automatic Emotion Recognition in Children with Autism: A Systematic Literature Review.

The automatic emotion recognition domain brings new methods and technologies that might be used to enhance therapy of children with autism. The paper aims at the exploration of methods and tools used to recognize emotions in children. It presents a literature review study that was performed using a systematic approach and PRISMA methodology for reporting quantitative and qualitative results. Diverse observation channels and modalities are used in the analyzed studies, including facial expressions, prosody of speech, and physiological signals. Regarding representation models, the basic emotions are the most frequently recognized, especially happiness, fear, and sadness. Both single-channel and multichannel approaches are applied, with a preference for the first one. For multimodal recognition, early fusion was the most frequently applied. SVM and neural networks were the most popular for building classifiers. Qualitative analysis revealed important clues on participant group construction and the most common combinations of modalities and methods. All channels are reported to be prone to some disturbance, and as a result, information on a specific symptoms of emotions might be temporarily or permanently unavailable. The challenges of proper stimuli, labelling methods, and the creation of open datasets were also identified.

Enriching Human-Robot Interaction with Mobile App in Interventions of Children with Autism Spectrum Disorder.

Introduction: Autism spectrum disorder (ASD) is a group of complex lifelong neurodevelopmental disorders, characterized by difficulties in social communication and stereotyped behaviours. Due to the increasing number of children with ASD, it is important to continue developing interventions as well as invent new ones. Human-robot interaction can contribute to better outcomes for these children. There are several robots such as Nao, Kaspar, ZENO, Probo, ZECA, etc. which are used in autism interventions. Many mobile and web applications are in constant growth, too. They target skills such as collaboration, social skills, language skills, social competence, and communication. Aim: To explore the usability of the humanoid robot Kaspar and a complementary app in interventions of children with ASD. Sample: 20 children with ASD, aged between 23 and 76 months old. Method: As an added intervention for this group of children, we used the robot Kaspar and its complementary app. Kaspar is a child-sized humanoid robot that uses bodily expressions, facial expressions, gestures, and pre-recorded speech to interact with a human. Results: This intervention achieved certain positive shifts in eight of the eleven measured developmental domains, such as communication functions and means, turn taking, imitation, language skills, play, attention and daily life skills. The three categories that had inconsiderable improvement are vocalization and speech, cause and effect and coping skills. Conclusion: Based on the measurements before and after the use of Kaspar and its complementary app, there is improvement, primarily in the domains of language, imitation and communication skills and attention.

Measurement invariance of the Childhood Autism Rating Scale (CARS) across six countries.

The Childhood Autism Rating Scale (CARS) is a simple and inexpensive tool for Autism spectrum disorder (ASD) assessments, with evidenced psychometric data from different countries. However, it is still unclear whether ASD symptoms are measured the same way across different societies and world regions with this tool, since data on its cross-cultural validity are lacking. This study evaluated the cross-cultural measurement invariance of the CARS among children with ASD from six countries, for whom data were aggregated from previous studies in India (n = 101), Jamaica (n = 139), Mexico (n = 72), Spain (n = 99), Turkey (n = 150), and the United States of America (n = 186). We analyzed the approximate measurement invariance based on Bayesian structural equation modeling. The model did not fit the data and its measurement invariance did not hold, with all items found non-invariant across the countries. Items related to social communication and interaction (i.e., relating to people, imitation, emotional response, and verbal and nonverbal communication) displayed lower levels of cross-country non-invariance compared to items about stereotyped behaviors/sensory sensitivity (i.e., body and object use, adaptation to change, or taste, smell, and touch response). This study found that the CARS may not provide cross-culturally valid ASD assessments. Thus, cross-cultural comparisons with the CARS should consider first which items operate differently across samples of interest, since its cross-cultural measurement non-invariance could be a source of cross-cultural variability in ASD presentations. Additional studies are needed before drawing valid recommendations in relation to the cultural sensitivity of particular items.

Does the M-Chat-R Give Important Information for the Diagnosis of the Autism Spectrum Disorder?

Having in mind the rising rates of the incidence for autism worldwide, the early diagnosis of this neuro-developmental disorder is of the high priority. For that purpose, several checklists have been constructed and used. Nevertheless, there are no universal and uniform criteria for assessing and diagnosing autism, and even if there existed, not every country has the resources to manage such an assessment for diagnosis.A recently validated, revised version of the M-CHAT, the M-CHAT-Revised with Follow up (M-CHAT-R/F) has demonstrated strong psychometric properties.The aim of this article is to discuss our results obtained with M-CHAT-R applied in a sample of 131 children aged 31,9 ±9,4 months, recruited for diagnosis and treatment at the University Children's Hospital in Skopje.Our results confirmed that for screening the use of M-CHAT-R/F is currently the very exact instrument which allows the early suspicion, but also possible follow up the symptoms of this disorder. Additionally, we showed the significant negative correlation between age and scores obtained on the checklist.

Main Needs and Challenges of Parents of Children with Autism Spectrum Disorder.

Autism spectrum disorder (ASD) comprises a group of complex lifelong neurodevelopmental disorders, characterized with symptoms related to the difficulty of communication and interaction with other people, as well as restricted interests and repetitive behaviors. These symptoms affects the person's ability to function properly in school, work, and other areas of life. For better understanding the needs and challenges of families the survey developed by Autism Speaks in collaboration with the National Coordinators for Autism from nine Balkan countries was established. The aim of this research is to obtain an overview of some important data for children with some form of autistic disorder. The same questionnaire was used in two different periods of time (during 2015 and at the beginning of 2020) including samples of 60 and 140 parents respectively. The questionnaire comprises 57 questions in the following four domains: demographic characteristics, index child characteristics, service encounters and parent/caregiver perceptions. Results are compared and discussed. The survey results underscore that parents and families of children with ASD in our country carry a heavy burden. They face significant financial difficulties and need improved services from the health, educational and social sectors. It was concluded that there is a critical need to strengthen national capacity in caring for children, young people and adults with ASD and other neurodevelopmental disorders.

Pandemic with COVID-19 and Families with Children with Chronic Respiratory Diseases.

COVID-19 pandemic has provoked a huge change in daily functioning in millions of people worldwide. The epidemiological measures in prevention of possible infection have increased the possible risks on the mental and physical health. We have conducted a survey in order to investigate the needs and challenges of families with children with chronic respiratory diseases. In this order, we have created a questionnaire with general information about the family, general information about the child with chronic respiratory disease, overall physical and mental health before and during the pandemic, needs and mental health condition of the parents/caregivers. This survey showed that this group of families of children with respiratory disorders have suffered financially in significant way and has changed the way they perform professional and educational patterns due to the pandemic. Most of the children were stable in their physical health, but their mental health has deteriorated. This is probably due to the regular contact with the medical staff, but not with the mental health professionals. This group of children has a significant reduction in their physical activity and increase the hours in front of TV screens. The further effect on the physical and mental health is to be investigated.

Coping with Cystic Fibrosis in the Republic of Macedonia-Parent Perspective.

INTRODUCTION: Cystic fibrosis (CF) is a progressive, life-threatening, genetic disease which mainly damages the lungs and the digestive system. It's a complex medical condition, with several individual forms and variation in the symptoms severity. Few factors such as age of establishing the diagnosis, the number and the type of infections and their management, best treatment options, comorbid conditions etc. can influence the patient's overall health, disease progression and quality of life. Many CF patients will reach adulthood, so coping with the chronic disease is very important for the overall health and everyday living. AIM OF THE STUDY: To screen the quality of life in CF patients in the Republic of Macedonia, from the parent perspective. SUBJECTS AND METHODS: In the study we have included 55 parents of CF patients. We have created a questionnaire, specially designed for this survey, with questions related to their everyday coping with CF and quality of life. RESULTS: The majority of the parents refer to the overall typical social and emotional life of their children, addressing some difficulties concerning the financial aspect of the disease and still significantly having fear from the stigma in the society. CONCLUSION: CF patients and their families in the Republic of Macedonia must overcome many obstacles on daily basis. Despite that, they can still have full and meaningful lives.

ESSENCE-Q: Slavic language versions for developmental screening in young children.

PURPOSE: The Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations - Questionnaire (ESSENCE-Q) was developed as a brief screener to identify children with developmental concerns who might have neurodevelopmental disorders (NDDs). This study aimed to translate the ESSENCE-Q into south Slavic languages, namely, Bosnian, Bulgarian, Croatian, Macedonian, Montenegrin, Serbian, and Slovenian, and to evaluate its psychometric properties for screening purposes in clinical settings. PATIENTS AND METHODS: In the study, the ESSENCE-Q was completed for 251 "typically developing" children and 200 children with 1 or more diagnosed NDDs, all aged 1-6 years. Internal consistency and construct validity were tested first, followed by generating receiver operating characteristic curves and the area under the curve. Optimal cutoff values were then explored. RESULTS: The Cronbach's α coefficients were 0.91, 0.88, and 0.86 for ESSENCE-Q parent-completed form, and the telephone and direct interview forms administered by trained nurse or specialist, respectively. The 3 versions produced area under the curve values (95% confidence interval): 0.96 (0.93-0.99), 0.91 (0.86-0.95), and 0.91 (0.86-0.97), respectively. An optimal cutoff for ESSENCE-Q parent-completed form was found to be ≥3 points, while for the telephone and direct interviews, it was ≥5 points. CONCLUSION: We found adequate measurement properties of the south Slavic languages versions of the ESSENCE-Q as a screener for NDDs in clinical settings. This study provided additional data supporting sound psychometric properties of the ESSENCE-Q.

Anorexia: Anormal Phobia of Normal Weight.

Anorexia nervosa is a disorder of feeding behavior associated with distortion of body image, mood disturbance and a wide variety of hormonal and metabolic abnormalities. It is supposed that the disease could be the consequence of a combination of cultural-social, psychological and biological factors. Our study confirmed that anorexia mentalis is a serious, life threatening disorder which in our country appears earlier than it was expected and that is strongly related to environmental factors (family, school, fashion, society). We showed that specific personality traits are characteristic for both, young patients and mothers. Sublimation of emotional stress by exceptional performances, accompanied by food restrictive consumption together with hypersensitivity, oppositional behavior and aggression are specific for this disorder. High levels of self-imposed standards increase the risk for psychological distress, especially for eating disorder symptomatology. Both genders could be involved as patients. Boys must be especially followed for possible psychiatric manifestation. We confirmed that the biofeedback as additional therapeutic modality is very useful.

Somatoform Disorders - A Pediatric Experience.

Somatization in children consists of the persistent experience and complaints of somatic distress that cannot be fully explained by a medical diagnosis. Working at the Psychophysiological Department at the University Clinic we are dealing with more than 100 children per year manifesting this kind of disorders. The aim of this article is to summarize some specific characteristics of the somatoform disorder in a group of 243 children, mean age 10.31 (± 2.75) years for both genders, selected randomly. The used psychometric instruments are: CBCL, EPQ for children, and MMPI-201 for mothers. The obtained results showed high scores for somatization, extroversion and accentuated anxiety for children; as well as a typical Hs-Hy personality profile for mothers. The treatment with cognitive-behavior therapy and biofeedback showed very positive outcome.

Prevalence of low bone mass and vitamin D deficiency in pediatric and adult patients with cystic fibrosis in Republic of Macedonia.

UNLABELLED: Bone disease in cystic fibrosis (CF) has become a topic of widespread interest and impact in the CF community. Recently, some biochemical markers have been proposed to provide information about the dynamics of bone turnover. Only limited information is available for young patients. Imbalance between bone formation and degradation in CF especially in puberty has become an important issue for developing osteopenia. Influence of vitamin D receptor alleles on BMD suggests that these polymorphisms have a greater influence on BMD in childhood. The aim of our study was to assess prevalence of vitamin D deficiency and osteopenia in pediatric and adult CF patients. METHODS: The study included 77 clinically stable CF patients (range 5-36 y), who regularly attended CF center at the Pediatric Clinic in Skopje, Macedonia. Serum osteocalcin (OC), ßcrosslaps, 25OHD and PTH were determined by electrohemiluminiscent method. BMD was measured via dual energy-ray absorptiometry (DXA) scans with spinal scores recorded. RESULTS: 50% of the CF patients with PI had serum vitamin D>20 ng (range 10-44 ng/ml) with no difference of age. Osteopenia was determined in 35% of patients. High plasma ßcrosslaps values reflect raised osteoclast activity in 50% of patients with osteopenia. We found one CF patient homozygote for Taq1 and Bsm1, one for Taq1 and one for Fok1. These patients have vitamin D deficiency and osteopenia. CONCLUSIONS: Bone remodeling in CF patients is impaired. Further investigations are needed to find underlying pathogenesis of low bone mass and vitamin D deficiency.

QEEG characteristics and spectrum weighted frequency for children diagnosed as autistic spectrum disorder.

BACKGROUND: Autistic spectrum disorders are a group of neurological and developmental disorders associated with social, communication, sensory, behavioral and cognitive impairments, as well as restricted, repetitive patterns of behavior, activities, or interests.The aim of this study was a) to analyze QEEG findings of autistic patients and to compare the results with data base; and b) to introduce the calculation of spectrum weighted frequency (brain rate) as an indicator of general mental arousal in these patients. RESULTS: Results for Q-EEG shows generally increased delta-theta activity in frontal region of the brain. Changes in QEEG pattern appeared to be in a non-linear correlation with maturational processes.Brain rate measured in CZ shows slow brain activity (5. 86) which is significantly lower than normal and corresponds to low general mental arousal.Recent research has shown that autistic disorders have as their basis disturbances of neural connectivity. Neurofeedback seems capable of remediating such disturbances when these data are considered as part of treatment planning. CONCLUSIONS: Prognosis of this pervasive disorder depends on the intellectual abilities: the better intellectual functioning, the possibilities for life adaptation are higherQEEG shows generally increased delta-theta activity in frontal region of the brain which is related to poor cognitive abilities.Brain rate measured in CZ shows slow brain activity related to under arousal.Pharmacotherapy combined with behavior therapy, social support and especially neurofeedback technique promise slight improvements.