Search results for: child neglect

Authors: Lucille Lok-Sun Ngan

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There are significant gaps in both the migration and family literatures regarding the gendered parenting of Chinese migrants. Evidence from the literature informs us that the child-focused parenting style of the West has altered, with positive consequences, parent–child relationships in migrant families. In particular, second-generation migrants have developed hybrid identities distinct from those of their overseas-born parents and the locals. On returning to their place of origin, they may undergo yet another process of change in values, and in behaviour, in order to adapt to the local culture. As migration changes values, personality and practice at personal, interpersonal and familial levels, the cross-cultural experiences of returnees inevitably affect their own fatherhood journeys in their country of origin. This paper reviews current literature on fatherhood and migration and identifies the gaps and limitations that pertain to understanding the paternal experiences of Chinese return migrants.

Keywords: Chinese returnees, cross-cultural experiences, fatherhood, hybridity, migration

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Authors: Adi Sharabi, Dafna Marom-Golan

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Parents’ involvement in the care of their children with Autism Spectrum Disorder (ASD) and its beneficial effect on the children’s developmental and educational outcomes is well documented. At the same time, parents of children with ASD tend to experience greater psychological distress than parents of children with other developmental disabilities or with typical development. Positive social support is an important resource used by parents to reduce their psychological distress. The goal of the current research was to examine the contribution of formal and informal social support in explaining mothers’ and fathers’ involvement with their young children with ASD. The sample consisted of 107 parents who live in Israel (61 mothers and 46 fathers) of children aged between 2 and 7, all diagnosed with ASD and attending special kindergartens or special day care for children with ASD. Parental involvement and social support perception were assessed. Initial analysis focused on the relations between involvement, support, and demographic variables. In addition, analysis of variance (ANOVA) was conducted to test differences between mothers and fathers. Two hierarchical multiple regression analyses were performed to examine the predicted factors in the involvement model while controlling for group (mothers/fathers). Results indicate that mothers reported significantly higher levels of parenting involvement than fathers. Mothers reported higher levels of general involvement and all sub-types of involvement. For example, mothers reported that they were more interested in and have higher levels of attendance in their child’s educational program. They were also more collaborative in their child’s educational therapeutic program, and socialized with other parents of children from their child’s kindergarten than fathers. Mothers’ involvement was found to be related to their informal support (non-formal relatives). Findings also reveal significant differences between mothers and fathers on the formal support subscale measure of specializes services. Fathers, more than mothers, reported more specializes services support such as social workers or professional therapists. Separate hierarchical multiple regression analyses revealed a unique gender difference in the factors that explained parental involvement. Specifically, informal support only had a unique positive contribution in explaining mothers’, but not fathers’ involvement. This study highlights the central role of mothers in maintaining constant contact with the educational system and the professionals who help care for their child with ASD. At the same time, this research emphasizes the crucial role of both mothers and fathers in their child's development and well-being at every development stage, particularly in early development. Further, different kinds of social support seem to relate to the different kinds of parental involvement. It is in the best interest of educators and family therapists who work with families with children with ASD to support the cohesiveness of the family and the collaboration of the parents by understanding and respecting the way each member addresses the responsibilities of parenting a child with ASD, and her or his need for different types of social support.

Keywords: parental differences, parental involvement, social support, specialized support services

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Authors: Hassan Alhaji Hassan, Inuwa Abdu Ibrahim

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The research looks at the decaying socioeconomic values in northern Nigeria, which is directly affecting the administration of service at different levels. The aim is to establish the consequence of a valueless society on individual and public life at different levels. The result of governments’ continued neglect of education, societal values, which have negatively affected societal development and indeed development in general. Therefore, focus is on governments’ poor performance in Nigeria, using secondary sources of data. In conclusion, the research asserts the need for the application of the values of some traditional values as personal principles and good governance as the way out of the present deteriorating conditions.

Keywords: socioeconomic, values, education, Northern Nigeria, good governance

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Authors: Hawa Khan

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Autism is a complex disorder related to abnormalities in the development of brain structure and neurological function and a new phenomenon which is epidemically on the increase. The Muslim community, with its profound commitment to the all-encompassing Islamic precedence, views all phenomena in the light of religious imperatives. How autism is understood and treated in these communities is key to successful inclusive services. Moreover, parents mentioned their Islamic faith as a coping mechanism for the challenges they faced while caring for their child. This study utilises interpretative phenomenology analysis as a methodology that seeks to interpret the meaning the participants make of their experiences, which extends descriptive analysis. Semi-structured interviews were conducted with 5 family units that included fathers, mothers, grandparents, and siblings. In the preliminary stage, this study found families give high importance of accessible Islamic education for their child and questioning the accountability of the child who might not be able to follow the Islamic way of life entirely or understand the concept of Allah. Moreover, the families expressed their beliefs in traditional and religious treatment as an effective way to treat and cure autism. This poses a major barrier between families seeking support and professionals providing services. Consequentially, it can also result in a low uptake of mainstream services from the Muslim community. Exploring the lived experiences of parents from the Muslim community and how ASD is conceptualised in this community could have implications for improved and effective home, community, and service collaboration.

Keywords: autism spectrum disorder, Islamic education, religious beliefs, mainstream services

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Authors: Léa Chawki, Émilie Cappe

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Context: Nowadays, supporting parents of children with autism spectrum disorder (ASD) and helping them adjust to their child’s condition represents a core clinical and scientific necessity and is encouraged by the French National Strategy for Autism (2018). In France, ASD remains a challenging condition, causing distress, segregation and social stigma to concerned family members concerned by this handicap. The literature highlights that neurodevelopmental disorders in children, such as ASD, influence parental well-being. This impact could be different according to parents’ culture and the child’s particular disorder manifestation, such as developmental coordination disorder (DCC), for instance. Objectives: This present study aims to explore parental stress, anxiety and depressive symptoms, as well as the quality of life in parents of children with ASD or DCD, as well as the explicit individual, psychosocial and cultural factors of parental well-being. Methods: Participants will be recruited through diagnostic centers, child and specialized adolescent units, and organizations representing families with ASD and DCD. Our sample will include five groups of 150 parents: four groups of parents having children with ASD – one living in France, one in the US, one in Canada and the other in Lebanon – and one group of French parents of children with DCD. Self-evaluation measures will be filled directly by parents in order to measure parental stress, anxiety and depressive symptoms, quality of life, coping and emotional regulation strategies, internalized stigma, perceived social support, the child’s problem behaviors severity, as well as motor coordination deficits in children with ASD and DCD. A sociodemographic questionnaire will help collect additional useful data regarding participants and their children. Individual and semi-structured research interviews will be conducted to complete quantitative data by further exploring participants’ distinct experiences related to parenting a child with a neurodevelopmental disorder. An interview grid, specially designed for the needs of this study, will strengthen the comparison between the experiences of parents of children with ASD with those of parents of children with DCD. It will also help investigate cultural differences regarding parent support policies in the context of raising a child with ASD. Moreover, interviews will help clarify the link between certain research variables (behavioral differences between ASD and DCD, family leisure activities, family and children’s extracurricular life, etc.) and parental well-being. Research perspectives: Results of this study will provide a more holistic understanding of the roles of individual, psychosocial and cultural variables related to parental well-being. Thus, this study will help direct the implementation of support services offered to families of children with neurodevelopmental disorders (ASD and DCD). Also, the implications of this study are essential in order to guide families through changes related to public policies assisting neurodevelopmental disorders and other disabilities. The between-group comparison (ASD and DCD) is also expected to help clarify the origins of all the different challenges encountered by those families. Hence, it will be interesting to investigate whether complications perceived by parents are more likely to arise from child-symptom severity, or from the lack of support obtained from health and educational systems.

Keywords: Autism spectrum disorder, cross-cultural, cross-disorder, developmental coordination delay, well-being

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Authors: Josee Charette

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The academic and educational success of migrant students is a current issue in education, especially in western societies such in the province of Quebec, in Canada. For people who immigrate with school-age children, the success of the family’s migratory project is often measured by the benefits drawn by children from the educational institutions of their host society. In order to support the academic achievement of their children, migrant parents try to develop practices that derive from their representations of school and related challenges inspired by the socio-cultural context of their country of origin. These findings lead us to the following question: How does strategies implemented by migrant parents to manage the representational distance between school of their country of origin and school of their host society support or not the academic and educational success of their child? In the context of a qualitative exploratory approach, we have made interviews in the French , English and Spanish languages with 32 newly immigrated parents and 10 of their children. Parents were invited to complete a network of free associations about «School in Quebec» as a premise for the interview. The objective of this paper is to present strategies implemented by migrant parents to manage the distance between their representations of schools in their country of origin and in the host society, and to explore the influence of this management on their child’s academic and educational trajectories. Data analysis led us to develop various types of strategies, such as continuity, adaptation, resources mobilization, compensation and "return to basics" strategies. These strategies seem to be part of a continuum from oppositional-conflict scenario, in which parental strategies act as a risk factor, to conciliator-integrator scenario, in which parental strategies act as a protective factor for migrant students’ academic and educational success. In conclusion, we believe that our research helps in highlighting strategies implemented by migrant parents to support their child’s academic and educational success in the host society and also helps in providing a more efficient support to migrant parents and contributes to develop a wider portrait of migrant students’ academic achievement.

Keywords: academic and educational achievement of immigrant students, family’s migratory project, immigrants parental strategies, representational distance between school of origin and school of host society

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Authors: Rebecca Heron, Julie Karsten, Lena Schweikert

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Adverse consequences of stigma towards pedophilia can, among other things, increase dynamic risk factors for sexual offending. Decreasing stigma, therefore, is a plausible approach in the attempt to prevent child sexual abuse. Stigma research suggests that providing direct contact to a stigmatized individual is the most efficient way of reducing stigma. The present study involved an educational intervention, followed by direct contact to a pedophile, to maximize effectiveness. It aimed at finding out whether a dichotomous anti-stigma intervention can change psychology students' attitudes towards pedophiles regarding perceived dangerousness, intentionality, deviance, and punitive attitudes. In a one sample pre-post design, 162 students of the University of Groningen attended a lecture about pedophilia, which was held by a psychology master’s student. Participants learned about child sex offending and pedophilia in addition to the importance of distinguishing between pedophiles and child sex offenders (CSOs). The guest lecturer Gabriel, shared his experiences about growing up, coping, and living with pedophilia. Results of the Wilcoxon signed-rank test revealed significantly diminished negative attitudes towards pedophiles after the intervention. Students perceived pedophiles as less dangerous, having less intent, and being less psychologically deviant. Additionally, students' punitive attitudes towards pedophiles diminished significantly. Also, a thematic analysis revealed that students were highly interested in the topic of pedophilia and greatly appreciative of Gabriel sharing his story. This study was the first to provide direct contact with a pedophile within an anti-stigma intervention.

Keywords: pedophilia, anti-stigma intervention, punitive attitudes, attitude change

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Authors: M. Munirul Islam, Makhduma Khatun M., Janet M. Peerson, Tahmeed Ahmed, M. Abid Hossain Mollah, Kathryn G. Dewey, Kenneth H. Brown

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Information is required on the effects of dietary energy density (ED) and feeding frequency (FF) of complementary foods (CF) on food consumption during individual meals and time expended in child feeding. We evaluated the effects of varied ED and FF of CFs on food intake and time required for child feeding during individual meals. During 9 separate, randomly ordered dietary periods lasting 3-6 days each, we measured self-determined intakes of porridges by 18 healthy, breastfed children 8-11 mo old who were fed coded porridges with energy densities of 0.5, 1.0 or 1.5 kcal/g, during 3, 4, or 5 meals/d. CF intake was measured by weighing the feeding bowl before and after every meal. Children consumed greater amounts of CFs per meal when they received diets with lower ED (p = 0.044) and fewer meals per day (p < 0.001). Food intake was less during the first meal of the day than the other meals. Greater time was expended per meal when fewer meals were offered. Time expended per meal did not vary by ED, but the children ate the lower ED diets faster (p = 0.019). Food intake velocity was also greater when more meals were offered per day (p = 0.005). These results provide further evidence of young children’s ability to regulate their energy intakes, even during infancy; and they convey information on factors that affect the amount of time that caregivers must devote to child feeding.

Keywords: complementary foods, energy density, feeding frequency, young children

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Authors: Beng Zhen Yeow

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In most work that involves children, the voice of the children is often not heard. This is ironic since a lot of discussions might involve their welfare and safety. It might seem natural that the professionals should hear from them about what they wish for instead of deciding what is best for them. However, this, unfortunately, might be more the exception than the norm in most case and hence in many instances, children are merely 'subjects' in conversations about safety instead of active participants in the construction or creation of safety in the family. There might be many reasons why it does not happen in our work. Firstly, professionals have learnt how to 'socialise' into their professional roles and hence in the process become 'un-childlike'. Secondly, there is also a lack of professional training with regards to how to talk with children. Finally, there might be also a lack of concrete tools and techniques that are developed to facilitate the process. In this paper, the case study method is used to show how the idea of safety could be concretised and discussed with children and their family members, and hence making them active participants and co-creators of their own safety. Specific skills and techniques are highlighted through the case study. In this case, there was improvement in outcomes like no repeated offence or abuse. In addition, children were also able to advocate for their own safety after six months of intervention and how the family members were able to explicitly say what they can do to improve safety. The professionals in the safety network reported significant improvements. On top of that, the abused child who was removed due to child protection concerns, had verbalized observations of change in mother’s parenting abilities, and has requested for home leave to begin due to ownership of safety planning and having confidence to co-create safety for her siblings and herself together with the professionals in the safety network. Children becoming active participants in the co-creation of safety not only serve the purpose in allowing them to own a 'voice' but at the same time, give them greater confidence to protect themselves at home and in other contexts outside of home.

Keywords: partnering for safety, collaborative social work, family and systemic psychotherapy, child protection

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Authors: Muhammad Adamu Kwankwaso

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Early childhood is a critical period of rapid physical, cognitive and psycho-social development of a child. The quality of care and Education which a child receives at this crucial age will determine to a great extent the level of his/her physical and cognitive development in the future. In Nigeria, Early Childhood Care and Education (ECCE) is a fundamental aspect or form of Education for children between the age of 3-6. It was started after independence as pre-primary Education or early child development as contained in the 1977 National Policy on Education. The trends towards ECCE in Nigeria and the northwestern part of the country in particular keep up changing as in the case of other part of the world. The current trends are now towards expansions, inclusiveness, redefinition, early literacy, increased government participation and the unprecedented societal response and awareness towards the Education of the younger children. While all hands are on deck to ensure successful implementation of the ECCE programme, it is unfortunate that, ECCE is facing some challenges. This paper therefore, examines the trends in Early Childhood Care and Education and the major challenges in the north west of Nigeria. Some of the major challenges include, inadequate trained ECCE teachers, lack of unified curriculum, teacher pupil’s ratio, and the medium of instructions and inadequate infrastructural and teaching facilities respectively. To improve the situation the paper offered the following recommendations; establishment of more ECCE classes, enforcement for the use of mothers’ tongue or the languages of the immediate community as a medium of instructions, and adequate provision of infrastructural facilities and the unified curriculum across the northwestern States of Nigeria.

Keywords: early childhood care, education, trends, challenges

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Authors: Allison Tucker, Carolyn Clarke, Erin Keith

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Introduction: In education, the determination to uncover privileged practices requires critical reflection to be placed at the center of both pre-service and in-service teacher education. Confronting deficit thinking about children’s abilities and shifting to holding an image of the child as capable and competent is necessary for teachers to engage in responsive pedagogy that meets children where they are in their learning and builds on strengths. This paper explores the ways in which early elementary teachers' perceptions of the assets of children might shift through the pedagogical use of video clubs. Video club is a pedagogical practice whereby teachers record and view short videos with the intended purpose of deepening their practices. The use of video club as a learning tool has been an extensively documented practice. In this study, a video club is used to watch short recordings of playing children to identify the assets of their students. Methodology: The study on which this paper is based asks the question: What are the ways in which teachers’ image of the child and teaching practices evolve through the use of video club focused on the strengths of children demonstrated during play? Using critical reflection, it aims to identify and describe participants’ experiences of examining their personally held image of the child through the pedagogical tool video club, and how that image influences their practices, specifically in implementing play pedagogy. Teachers enrolled in a graduate-level play pedagogy course record and watch videos of their own students as a means to notice and reflect on the learning that happens during play. Using a co-constructed viewing protocol, teachers identify student strengths and consider their pedagogical responses. Video club provides a framework for teachers to critically reflect in action, return to the video to rewatch the children or themselves and discuss their noticings with colleagues. Critical reflection occurs when there is focused attention on identifying the ways in which actions perpetuate or challenge issues of inherent power in education. When the image of the child held by the teacher is from a deficit position and is influenced by hegemonic dimensions of practice, critical reflection is essential in naming and addressing power imbalances, biases, and practices that are harmful to children and become barriers to their thriving. The data is comprised of teacher reflections, analyzed using phenomenology. Phenomenology seeks to understand and appreciate how individuals make sense of their experiences. Teacher reflections are individually read, and researchers determine pools of meaning. Categories are identified by each researcher, after which commonalities are named through a recursive process of returning to the data until no more themes emerge or saturation is reached. Findings: The final analysis and interpretation of the data are forthcoming. However, emergent analysis of the data collected using teacher reflections reveals the ways in which the use of video club grew teachers’ awareness of their image of the child. It shows video club as a promising pedagogical tool when used with in-service teachers to prompt opportunities for play and to challenge deficit thinking about children and their abilities to thrive in learning.

Keywords: asset-based teaching, critical reflection, image of the child, video club

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Authors: Beste Ozcan, Valerio Sperati, Laura Romano, Tania Moretta, Simone Scaffaro, Noemi Faedda, Federica Giovannone, Carla Sogos, Vincenzo Guidetti, Gianluca Baldassarre

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+me is an experimental interactive toy with the appearance of a soft, pillow-like, panda. Shape and consistency are designed to arise emotional attachment in young children: a child can wear it around his/her neck and treat it as a companion (i.e. a transitional object). When caressed on paws or head, the panda emits appealing, interesting outputs like colored lights or amusing sounds, thanks to embedded electronics. Such sensory patterns can be modified through a wirelessly connected tablet: by this, an adult caregiver can adapt +me responses to a child's reactions or requests, for example, changing the light hue or the type of sound. The toy control is therefore shared, as it depends on both the child (who handles the panda) and the adult (who manages the tablet and mediates the sensory input-output contingencies). These features make +me a potential tool for therapy with children with Neurodevelopmental Disorders (ND), characterized by impairments in the social area, like Autism Spectrum Disorders (ASD) and Language Disorders (LD): as a proposal, the toy could be used together with a therapist, in rehabilitative play activities aimed at encouraging simple social interactions and reinforcing basic relational and communication skills. +me was tested in two pilot experiments, the first one involving 15 Typically Developed (TD) children aged in 8-34 months, the second one involving 7 children with ASD, and 7 with LD, aged in 30-48 months. In both studies a researcher/caregiver, during a one-to-one, ten-minute activity plays with the panda and encourages the child to do the same. The purpose of both studies was to ascertain the general acceptability of the device as an interesting toy that is an object able to capture the child's attention and to maintain a high motivation to interact with it and with the adult. Behavioral indexes for estimating the interplay between the child, +me and caregiver were rated from the video recording of the experimental sessions. Preliminary results show how -on average- participants from 3 groups exhibit a good engagement: they touch, caress, explore the panda and show enjoyment when they manage to trigger luminous and sound responses. During the experiments, children tend to imitate the caregiver's actions on +me, often looking (and smiling) at him/her. Interesting behavioral differences between TD, ASD, and LD groups are scored: for example, ASD participants produce a fewer number of smiles both to panda and to a caregiver with respect to TD group, while LD scores stand between ASD and TD subjects. These preliminary observations suggest that the interactive toy +me is able to raise and maintain the interest of toddlers and therefore it can be reasonably used as a supporting tool during therapy, to stimulate pivotal social skills as imitation, turn-taking, eye contact, and social smiles. Interestingly, the young age of participants, along with the behavioral differences between groups, seem to suggest a further potential use of the device: a tool for early differential diagnosis (the average age of a child

Keywords: autism spectrum disorders, interactive toy, social interaction, therapy, transitional wearable companion

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Authors: Sonia Boscenco, Zihan Wang, Euclides José de Mendoça Filho, João Paulo Hoppe, Irina Pokhvisneva, Geoffrey B.C. Hall, Michael J. Meaney, Patricia Pelufo Silveira

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Entropy can be described as a measure of the number of states of a system, and when used in the context of physiological time-based signals, it serves as a measure of complexity. In functional connectivity data, entropy can account for the moment-to-moment variability that is neglected in traditional functional magnetic resonance imaging (fMRI) analyses. While brain fMRI resting state entropy has been associated with some pathological conditions like schizophrenia, no investigations have explored the association between brain entropy measures and individual differences in child behavior in healthy children. We describe a novel exploratory approach to evaluate brain fMRI resting state data in two child cohorts, and MAVAN (N=54, 4.5 years, 48% males) and GUSTO (N = 206, 4.5 years, 48% males) and its associations to child behavior, that can be used in future research in the context of child exposures and long-term health. Following rs-fMRI data pre-processing and Shannon entropy calculation across 32 network regions of interest to acquire 496 unique functional connections, partial correlation coefficient analysis adjusted for sex was performed to identify associations between entropy data and Strengths and Difficulties questionnaire in MAVAN and Child Behavior Checklist domains in GUSTO. Significance was set at p < 0.01, and we found eight significant associations in GUSTO. Negative associations were found between two frontoparietal regions and cerebellar posterior and oppositional defiant problems, (r = -0.212, p = 0.006) and (r = -0.200, p = 0.009). Positive associations were identified between somatic complaints and four default mode connections: salience insula (r = 0.202, p < 0.01), dorsal attention intraparietal sulcus (r = 0.231, p = 0.003), language inferior frontal gyrus (r = 0.207, p = 0.008) and language posterior superior temporal gyrus (r = 0.210, p = 0.008). Positive associations were also found between insula and frontoparietal connection and attention deficit / hyperactivity problems (r = 0.200, p < 0.01), and insula – default mode connection and pervasive developmental problems (r = 0.210, p = 0.007). In MAVAN, ten significant associations were identified. Two positive associations were found = with prosocial scores: the salience prefrontal cortex and dorsal attention connection (r = 0.474, p = 0.005) and the salience supramarginal gyrus and dorsal attention intraparietal sulcus (r = 0.447, p = 0.008). The insula and prefrontal connection were negatively associated with peer problems (r = -0.437, p < 0.01). Conduct problems were negatively associated with six separate connections, the left salience insula and right salience insula (r = -0.449, p = 0.008), left salience insula and right salience supramarginal gyrus (r = -0.512, p = 0.002), the default mode and visual network (r = -0.444, p = 0.009), dorsal attention and language network (r = -0.490, p = 0.003), and default mode and posterior parietal cortex (r = -0.546, p = 0.001). Entropy measures of resting state functional connectivity can be used to identify individual differences in brain function that are correlated with variation in behavioral problems in healthy children. Further studies applying this marker into the context of environmental exposures are warranted.

Keywords: child behaviour, functional connectivity, imaging, Shannon entropy

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Authors: Siobhan Hegarty, Michael Bloomfield, Kim Entholt, Dorothy Williams, Helen Kennerley

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Complex Post-Traumatic Stress Disorder (CPTSD) confers greater risk of poor outcomes than does Post-Traumatic Stress Disorder (PTSD). Despite this, the current treatment guidelines for CPTSD aim to reduce only the ‘core’ symptoms of re-experiencing, hyper-vigilance and avoidance, while not addressing the Disturbances of Self Organisation (DSO) symptoms that distinguish this novel diagnosis from PTSD. The Recovering from Child Abuse Programme (RCAP) is a group protocol, based on the principles of cognitive behavioural therapy (CBT). Preliminary evidence suggests the program is effective at reducing DSO symptoms. This pilot study is the first to investigate the potential effectiveness of the RCAP for the specific treatment of CPTSD. This study was conducted as a service evaluation in a secondary care, traumatic stress service. Treatment was delivered once a week, in two-hour sessions, to ten existing female CPTSD patients of the service, who had experienced sexual abuse in childhood. The programme was administered by two therapists and two additional facilitators, following the RCAP protocol manual. Symptom severity was measured before the administration of therapy and was tracked across a range of measures (International Trauma Questionnaire; Patient Health Questionnaire; Community Assessment of Psychic Experience; Work and Social Adjustment Scale) at five time points, over the course of treatment. Qualitative appraisal of the programme was gathered via weekly feedback forms and from audio-taped recordings of verbal feedback given during group sessions. Preliminary results suggest the programme causes a slight reduction in CPTSD and depressive symptom severity and preliminary qualitative analysis suggests that the RCAP is both helpful and acceptable to group members. Final results and conclusions will follow completed thematic analysis of results.

Keywords: Child sexual abuse, Cognitive behavioural therapy, Complex post-traumatic stress disorder, Recovering from child abuse programme

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Authors: Katarzyna Kamińska

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When thinking about custodial arrangements after divorce or separation, there has been a shift from sole custody, particularly maternal preference, to joint physical custody. In many Western countries, an increasing of children with separated parents have joint physical custody, which is believed to be in the best interests of the child, as children can maintain personal relations and direct contact with both parents on a regular basis. The aim of the article is to examine joint physical custody, both from the perspective of the binding legal instruments that are relevant to joint physical custody, the Principles of European Family Law drafted by the CEFL, as well as the international research on this matter. The thesis underlying this paper is that joint physical custody is in itself neither good nor bad, and it depends on how the arrangements are managed by the parents. The paper includes a reflection on joint physical custody in the face of the COVID-19 crisis. The results indicate that in normal circumstances, joint physical custody demands broad communication, and now it times of crisis, we need over-communication about children and plans. Only a very tight and coordinated co-parenting plan make the whole family safer.

Keywords: joint physical custody, co-parenting, child welfare, COVID-19

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Authors: Terry Gomez

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This interpretive phenomenological qualitative study explored potential risks related to infant mental health with parental smartphone use while caring for infants. Data were collected through nine online interviews of first-time parents with infants under one-year-old. All parents reported using their smartphone during child-bonding activities such as playtime, feeding, and sleep-time. Results indicated that smartphone distractions appear to influence the synchrony of parent-child interactions. Infants displayed physical, verbal, or emotional reactions to parents’ smartphone distractions, indicating that smartphone use influences infants’ behaviors. Parents shared information on how smartphones helped them with their transition into parenthood. The findings of this study provide insights helpful to inform infant mental health professionals and parents about potential developmental consequences associated with parental technoference and absent presence.

Keywords: absent presence, infant mental health, parental distractions, smartphones, technoference

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Authors: Ewa Mojs, Katarzyna Wiechec, Maia Kubiak, Wlodzimierz Samborski

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Interactions between mother’s psychological condition and child’s health status are complex and derive from the nature of the mother-child relationship. The aim of the study was to analyze the issue of anxiety amongst mothers of short children in the aspect of growth hormone therapy. The study was based on a group of 101 mothers of originally short-statured children – 70 with growth hormone deficiency (GHD) treated with recombinant human growth hormone (rhGH) and 31 undergoing the diagnostic process, without any treatment. Collected medical data included child's gender, height and weight, chronological age, bone age delay, and rhGH therapy duration. For all children, the height SDS and BMI SDS were calculated. To evaluate anxiety in mothers, the Spielberger State-Trait Anxiety Inventory (STAI) was used. Obtained results revealed low trait anxiety levels, with no statistically significant differences between the groups. State anxiety levels were average when mothers of all children were analyzed together, but when divided into groups, statistical differences appeared. Mothers of children without diagnosis and treatment had significantly higher levels of state anxiety than mothers of children with GHD receiving appropriate therapy. These results show, that the occurrence of growth failure in children is not related to high maternal trait anxiety, but the lack of diagnosis and lack of appropriate treatment generates higher levels of maternal state anxiety than the process of rh GH therapy in the offspring. Commencement of growth hormone therapy induce a substantial reduction of the state anxiety in mothers, and the duration of treatment causes its further decrease.

Keywords: anxiety, development, growth hormone deficiency, motherhood

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Authors: C. Surmei

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Autism Spectrum Disorder (ASD) is a complex developmental disorder that can affect an individual’s (but is not limited to) cognitive development, emotional development, language acquisition and the capability to relate to others. Ecological Systems Theory is a sociocultural theory that focuses on environmental systems with which an individual interacts. The SCERTS Model is an educational approach and multidisciplinary framework that addresses the challenges confronted by individuals on the autism spectrum and other developmental disabilities. To aid the understanding of ASD and educational philosophies for families, educators, and the global community alike, a Comparative Analysis was undertaken to examine key variables (the child, society, education, nurture/care, relationships, communication). The results indicated that the Ecological Systems Theory and the SCERTS Model were comparable in focus, motivation, and application, attaining to a viable and notable relationship between both theories. This paper unpacks two child development philosophies and their relationship to each other.

Keywords: autism spectrum disorder, ecological systems theory, education, SCERTS model

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Authors: Xu Qian

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This abstract examines the concept of resilience in adolescents from both adolescent medicine and child psychology perspectives. It discusses the role of healthcare providers in fostering resilience among adolescents, encompassing physical, psychological, and social aspects. The paper highlights evidence-based interventions and practical strategies for promoting resilience in this population. Introduction: Resilience plays a crucial role in the healthy development of adolescents, enabling them to navigate through the challenges of this transitional period. This abstract explores the concept of resilience from the perspectives of adolescent medicine and child psychology, shedding light on the collective efforts of healthcare providers in fostering resilience. By integrating the principles and practices of these two disciplines, this abstract emphasizes the multidimensional nature of resilience and its significance in the overall well-being of adolescents. Methods: A comprehensive literature review was conducted, encompassing research articles, empirical studies, and expert opinions from both adolescent medicine and child psychology fields. The search included databases such as PubMed, PsycINFO, and Google Scholar, focusing on publications from the past decade. The review aimed to identify evidence-based interventions and practical strategies employed by healthcare providers to promote resilience among adolescents. Results: The review revealed several key findings regarding the promotion of resilience in adolescents. Firstly, resilience is a dynamic process influenced by individual characteristics, environmental factors, and the interaction between the two. Secondly, healthcare providers play a critical role in fostering resilience by addressing the physical, psychological, and social needs of adolescents. This entails comprehensive healthcare services that integrate medical care, mental health support, and social interventions. Thirdly, evidence-based interventions such as cognitive-behavioral therapy, social skills training, and positive youth development programs have shown promising outcomes in enhancing resilience. Discussion: The integration of adolescent medicine and child psychology perspectives provides a comprehensive framework for promoting resilience in adolescents. By acknowledging the interplay between physical health, psychological well-being, and social functioning, healthcare providers can tailor interventions to address the specific needs and challenges faced by adolescents. Collaborative efforts between medical professionals, psychologists, educators, and families are vital in creating a supportive environment that fosters resilience. Additionally, the findings highlight the importance of early identification and intervention, emphasizing the need for routine screening and assessment to identify adolescents at risk and provide timely support. Conclusion: Promoting resilience in adolescents requires a holistic approach that integrates adolescent medicine and child psychology perspectives. By recognizing the multifaceted nature of resilience, healthcare providers can implement evidence-based interventions and practical strategies to enhance the well-being of adolescents. The collaboration between healthcare professionals from different disciplines, alongside the involvement of families and communities, is crucial for creating a resilient support system. By investing in the promotion of resilience during adolescence, we can empower young individuals to overcome adversity and thrive in their journey toward adulthood.

Keywords: psychology, clinical psychology, child psychology, adolescent psychology, adolescent

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Authors: Minna K. Miller, Chantel. E. Canessa, Suzanna V. McRae, Susan Shumay, Alissa Collingridge

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Primary care provides the first point of contact and access to health care services. For the pediatric population, the goal is to help healthy children stay healthy and to help those that are sick get better. Primary care facilitates regular well baby/child visits; health promotion and disease prevention; investigation, diagnosis and management of acute and chronic illnesses; health education; both consultation and collaboration with, and referral to other health care professionals. There is a protective association between regular well-child visit care and preventable hospitalization. Further, low adherence to well-child care and poor continuity of care are independently associated with increased risk of hospitalization. With a declining number of family physicians caring for children, and only a portion of pediatricians providing primary care services, it is becoming increasingly difficult for children and their families to access primary care. Nurse practitioners are in a unique position to improve access to primary care and improve health outcomes for children. Limited literature is available on the nurse practitioner role in primary care pediatrics. The purpose of this paper is to describe the development, implementation and evaluation of a Nurse Practitioner-led pediatric primary care clinic in a tertiary care setting. Utilizing the participatory, evidence-based, patient-focused process for advanced practice nursing (PEPPA framework), this paper highlights the results of the initial needs assessment/gap analysis, the new service delivery model, populations served, and outcome measures.

Keywords: access, health outcomes, nurse practitioner, pediatric primary care, PEPPA framework

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Authors: Behnaz Farahani, Razieh Sotoudeh, Ali Vahdani, Hamed Abdi

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Individual differences in eating behavior can cause underweight or overweight and obesity. Thus influencing factors on children’s eating behavior such as mothers’ feeding practices are needed to be more investigated. The goals of this survey are to evaluate the association of (i) parental pressure and children’s food avoidant tendency, (ii) parental restriction and children’s food approach tendency, (iii) modeling of healthy eating in front of children and their children’s eating behavior. 760 mothers of children aged 7-10 from schools in Isfahan were asked to complete questionnaires including Child Feeding Questionnaire, Children’s Eating Behavior Questionnaire, Modeling Questionnaire, and self-administered demographic questionnaire in which mothers reported their children’s height and weight as well. Of those mothers, 745 completed the questionnaires for the children’s index (mean age: 8.513±1.112) during the 2011-2012 school year. The results of this quantitative, descriptive, cross-sectional analysis indicated that “parental restriction” was positively associated with child food responsiveness (P,0.000) and food enjoyment (P,0.000) and surprisingly, it was positively associated with Food Fussiness(0.000) .Parental pressure to eat was positively associated with child satiety responsiveness (P,0.000), slowness (P,0.000), and fussiness (P,0.00) and negatively associated with Food responsiveness(p,0.000)and Enjoyment of food (p,0.002), modeling of healthy eating were positively associated with Enjoyment of food / q (p,0.000) and negatively with food fussiness (P,0.000). The results of this survey will improve interventions and maternal guidance on their feeding practices and their association with children’s eating behavior and weight.

Keywords: feeding practices, eating behavior, pressure to eat, restriction, modeling, satiety responsiveness, slowness in eating, food fussiness, food responsiveness, enjoyment of food

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Authors: Aikaterini Tavoulari

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This research aims to address the types of repetitive behaviours (RBs) observed by adults in children with vision impairment (VI) or autism spectrum disorder (ASD), the explanations the adults employ to interpret these behaviours, and the impact RBs have on the child, the caregiver, the professional and society. The underlying reason for this is an attempt to discover any potential differences between two different disabilities in a comparative fashion. The study is based on the interpretivism paradigm and follows a qualitative approach. A comparative case study design based on the ecological systems theory (EST) is adopted. Thirty-five caregivers and accredited professionals were recruited (17 for the VI group, out of whom 8 were caregivers and 9 were professionals, and 18 for the ASD group, out of whom 9 were caregivers and 9 were professionals). Following the completion of a pilot study, all participants were interviewed regarding one specific child – their own child/student – via semi-structured interviews. During the interviews, the researcher used a research diary as a methodological tool and video elicitation as a facilitation tool. A cross-case analysis was conducted, and data were analysed according to the method of thematic analysis. A link has been indicated between VI and ASD, which concerns perceptions about the socially constructed manner in which an RB is perceived. ASD is perceived by the participants as a disability with challenging characteristics, such as an RB. The ASD group perceived RB as linked to ableism, social stigmatisation, and taboo, in contrast to VI, where the existence of RB seems to be a consequence of sensory loss. Bi-directionality of EST seems to have been lost completely, and the macrosystem seems to drive the interactions between the ecological systems.

Keywords: ableism, social stigma, disability, repetitive behaviour, vision impairment, autism spectrum disorder, perceptions

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Authors: Geoff Skinner, Ilung Pranata

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The advancement of ICT innovations provides us with a comfortable and convenient modern lifestyle. However, this modern easy lifestyle is proving to have some serious health consequences. Such technological advancements that have dramatically increased ones time in front of screens have been a contributing factor to increasing rates of obesity. In particular the youth obesity issue has gained more and more attention from researchers and health institutions around the world. Although technology innovations may lead to a sedate modern life, they also have a potential to solve the obesity issue in children. This paper provides a review of the issues in child obesity and the potential of active video games to mitigate these issues. Additionally, the paper also discusses the key requirements to develop an active video game that hopes to help combat child obesity through motivating youth to exergame. A framework is introduced to meet the requirements, from which a prototype was implemented. Discussion of the simulation and testing that were performed to verify the attainment of objectives is also detailed.

Keywords: e-video games, exergaming, health informatics, human computer interaction

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Authors: Mohit Kumar, Beklashwar Salona, Shiv Murti, Mukesh Singh

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We report here a case of five-months old male baby, born as second child of non-consanguineous parents with no considerable history of genetic abnormality which was referred to our cytogenetic laboratory for chromosomal analysis. Physical dysmorphic facial features including mongoloid face, cleft palate, simian crease, and developmental delay were observed. We present this case with unique balanced autosomal translocation of t(3;10)(p21;p13). The risk of phenotypic abnormalities based on de novo balanced translocation was estimated to be 7%. The association of balanced chromosomal rearrangement with Down syndrome features such as multiple congenital anomalies, facial dysmorphism and congenital heart anomalies are very rare in a 5-months old male child. Trisomy-21 is not uncommon in chromosomal abnormality with the birth defect and balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion (RSA). Two ml heparinized peripheral blood cells cultured in RPMI-1640 for 72 hours supplemented with 20% fetal bovine serum, phytohemagglutinin (PHA), and antibiotics were used for chromosomal analysis. A total 30 metaphases images were captured using Olympus-BX51 microscope and analyzed using Bio-view karyotyping software through GTG-banding (G bands by trypsin and Giemsa) according to International System for Human Cytogenetic Nomenclature 2016. The results showed balanced translocation between short arm of chromosome # 3 and short arm of chromosome # 10. The karyotype of the child was found to be 46,XY,t(3;10)(p21; p13). Chromosomal abnormalities are one of the major causes of birth defect in new born babies. Also, balanced translocations are frequently observed in patients with secondary infertility or recurrent spontaneous abortion. The index case presented with dysmorphic facial features and had a balanced translocation 46,XY,t(3;10)(p21;p13). This translocation with break points at (p21; p13) has not been reported in the literature in a child with facial dysmorphism. To the best of our knowledge, this is the first report of novel balanced translocation t(3;10) with break points in a child with dysmorphic features. We found balanced chromosomal translocation instead of any trisomy or unbalanced aberrations along with some phenotypic abnormalities. Therefore, we suggest that such novel balanced translocation with abnormal phenotype should be reported in order to enable the pathologist, pediatrician, and gynecologist to have a better insight into the intricacies of chromosomal abnormalities and their associated phenotypic features. We hypothesized that dysmorphic features as seen in this case may be the result of change in the pattern of genes located at the breakpoint area in balanced translocations or may be due to deletion or mutation of genes located on the p-arm of chromosome # 3 and p-arm of chromosome # 10.

Keywords: balanced translocation, karyotyping, phenotypic abnormalities, facial dimorphisms

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Roshanak Farjad, Amirhossein Hosseini

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Fecal incontinence (FI) is a stressful condition for children and their parents that may affect the patient’s psychological well-being. Evaluating the patients’ psychological status may help physicians manage the disease effectively. This study aimed to assess the emotional and behavioral disturbances in children with FI who were referred to the pediatric gastroenterology clinic in Mofid Children’s Hospital from April 2021 to 2022. This cross-sectional study included children (over four years old) with chronic constipation and fecal incontinence. The diagnosis of chronic constipation and FI were made according to Rome-IV criteria. The Child Behavior Checklist (CBCL) evaluated patients’ emotional, behavioral, and social problems. One hundred one patients with a mean age of 7.96 years were enrolled in the study; 67.32% were males. According to CBCL, 12% (12 patients) indicated emotional and behavioral problems, with CBCL scores in the clinical or at-risk range. We detected anxious/depressed problems in five (4.95%), withdrawn/depressed problems in eight (7.92%), somatic complaints in seven (6.93%), social problems in eight (7.92%), thought problems in nine (8.91%), attention problems in seven (6.93%), rule-breaking behavior in two (1.98%), and aggressive behavior in nine (8.91%) patients. The risk of internalizing and externalizing disorders was reported in four (3.96%) and five (4.95%) patients. Also, eight (7.92%) and seven (6.93%) patients had clinical symptoms of internalizing and externalizing disorders, respectively. There was no significant relationship between patients’ age and gender with the CBCL scores in any subscales. However, there was a significant difference in the total score among the age groups (P = 0.04). The relatively high prevalence of emotional, behavioral, and social problems in our study corroborates the importance of psychological screening of children with FI during the treatment process.

Keywords: chronic constipation, child behavior checklist (CBCL), fecal incontinence, rome-IV criteria

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Authors: Adebusoye Michael, Okunola Olayinka, Owolabi Abdulateef, Jacob Anayo

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Introduction: Child undernutrition remains one of Africa’s most fundamental challenges for improved human development because the time and capacities of caregivers are limited; far too many children are unable to access effectively amenities they need for a healthy life. Methods and procedures: This cross-sectional, descriptive study evaluated the maternal care practices on nutritional status of pre-school children, 150 mothers were selected by systematic random sampling in Dass L.G.A., Bauchi-State, Nigeria. Information on relevant parameters were collected by questionaire, analysed by various indices of descriptive statistics using SPSS version 16.0.Spearman’s rank correlation was used to test for associations between the variables. Results: Thirty-five (23.3%) of the respondents were aged 21-25 years. Thirty-three (28.0%) had secondary education, while forty-nine (32.7%) were full housewives. Majority 79(52.7) earned NI,000- N10,000 monthly versus 10(6.7%) who earned N11,000- N20,000.113(75.3%) married while 7(4.7%) of respondents were separated. Sixty-one (40.7%) practiced exclusive breastfeeding within six months. Only seventy-one (47.3%) initiated breastfeeding between 7 and 13 months. Five (3.3%) of children were mildly underweight while nine (6.0%) were severely stunted. Conclusion: The outcome suggested that working time of mothers is a major determinant on their child nutritional status. However, there is a significant relationship on the working time of mothers, income level and educational level of mothers to the nutritional status of their children (P<0.05). Recommendation: Good policy programmes should aim at eradicating poverty, better child care practices that would reduce malnutrition among under-five children.

Keywords: maternal care, nutritional status, preschool children, Dass L.G.A.

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Authors: Aisling Parkes, Fiona Donson

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There is no doubt that parental imprisonment directly alters the social experiences of childhood for many children worldwide today. Indeed, the extent to which meaningful contact with a parent in prison can positively impact on the life of a child is well documented as are the benefits for the prisoner, particularly in the long term and post-release. However, despite the growing acceptance of children’s rights in Ireland over the past decade in particular, it appears that children’s rights have not yet succeeded in breaking through the walls of Irish prisons when children are visiting an incarcerated parent. In a prison system that continues to prioritise security over all other considerations, little attention has been given to the importance of recognising and protecting the rights of children affected by parental imprisonment in Ireland for children, families and society in the long term. This paper will present the findings which have emerged from a national qualitative research project (the first of its kind to be conducted in Ireland) which examines the current visiting conditions for children and families, and the related culture of visitation within the Irish Prison system. This study investigated, through semi-structured interviews and focus groups, the unique and specialist perspectives of senior prison management, prison governors, prison officers, support organisations, prison child care workers, as well as those with a family member in prison who have direct experience of prison visits in Ireland which involve children and young people. The reality of the current system of visitation that operates in Irish prisons and its impact on children’s rights is presented from a variety of perspectives. The idea of what meaningful contact means from a children’s rights based perspective is interrogated as are the benefits long term for both the child and the offender. The current system is benchmarked against well-accepted international children’s rights norms as reflected under the UN Convention on the Rights of the Child 1989. The dissonance that continues to exist between the theory of children’s rights which includes the right to maintain meaningful contact with a parent in prison and current practice and procedure in Irish Prisons will be explored. In adopting a children’s rights based perspective combined with socio-legal research, this paper will explore the added value that this approach to prison visiting might offer in responding to this particularly marginalised group of children in terms of their social experience of childhood. Finally, the question will be raised as to whether or not there is a responsibility on prisons to view children as independent rights holders when they come to visit the prison or is the prison entitled to focus solely on the prisoner with their children being viewed as a circumstance of the offender? Do the interests of the child and the prisoner have to be exclusive or is there any way of marrying the two?

Keywords: children’s rights, prisoners, sociology, visitation

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Authors: Bindu S., Malavika Anakkathil Anil, Jayashree S. Bhat

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The dyadic interaction between the parent and child during story narration facilitates the emergence of early literacy skills. Early shared reading experiences positively predict better reading and language outcomes in children who experience rich communicative and effective interactions during shared book reading. However, research is yet to systematically explore mother’s perspective towards story narration and how employment may influence their perspectives. The study analysed the perspectives of employed and unemployed mothers of typically developing children between the age ranges of 2 to 5 years through a questionnaire which covered domains on story narration exposure and parental attitudes & beliefs. The results indicate no statistical difference between employed mothers (M=8.5, SD=3.4) and unemployed mothers (M=10.1, SD=1.06). Whereas, post-hoc comparisons using the scheffe test, revealed a significant difference in scores. An increasing score was obtained as the age of the child increased. This change could be attributed due to the integration of children in preschools which could have contributed to the change of perception towards story narration. Older children’s mother perceive story narration to be an important part of their curriculum, which could facilitate rich vocabulary and language output. Younger children’s parents are however not realising the significance of story narration and its impact on the emergent literacy skills. Parent-child interaction is a significant contributor to a healthy social and cultural development. The study emphasises on the need of mothers to engage in preliteracy based activities which contribute to better academic performance in later stages.

Keywords: early literacy skill, employment, language development, mother’s perspective, story narration

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Authors: M. Siedlikowski, F. Rauch, A. Tsimicalis

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Osteogenesis Imperfecta (OI) is a genetic disorder of childhood onset that causes frequent fractures after minimal physical stress. To date, OI research has focused on medically- and surgically-oriented outcomes with little attention on the perspective of the affected child. It is a challenge to elicit the child’s voice in health care, in other words, their own perspective on their symptoms, but software development offers a way forward. Sisom (Norwegian acronym derived from ‘Si det som det er’ meaning ‘Tell it as it is’) is an award-winning, rigorously tested, interactive, computerized tool that helps children with chronic illnesses express their symptoms to their clinicians. The successful Sisom software tool, that addresses the child directly, has not yet been adapted to attend to symptoms unique to children with OI. The purpose of this study was to develop a Sisom paper prototype for children with OI by seeking the perspectives of end users, particularly, children with OI and clinicians. Our descriptive qualitative study was conducted at Shriners Hospitals for Children® – Canada, which follows the largest cohort of children with OI in North America. Purposive sampling was used to recruit 12 children with OI over three cycles. Nine clinicians oversaw the development process, which involved determining the relevance of current Sisom symptoms, vignettes, and avatars, as well as generating new Sisom OI components. Data, including field notes, transcribed audio-recordings, and drawings, were deductively analyzed using content analysis techniques. Guided by the following framework, data pertaining to symptoms, vignettes, and avatars were coded into five categories: a) Relevant; b) Irrelevant; c) To modify; d) To add; e) Unsure. Overall, 70.8% of Sisom symptoms were deemed relevant for inclusion, with 49.4% directly incorporated, and 21.3% incorporated with changes to syntax, and/or vignette, and/or location. Three additions were made to the ‘Avatar’ island. This allowed children to celebrate their uniqueness: ‘Makes you feel like you’re not like everybody else.’ One new island, ‘About Me’, was added to capture children’s worldviews. One new sub-island, ‘Getting Around’, was added to reflect accessibility issues. These issues were related to the children’s independence, their social lives, as well as the perceptions of others. In being consulted as experts throughout the co-creation of the Sisom OI paper prototype, children coded the Sisom symptoms and provided sound rationales for their chosen codes. In rationalizing their codes, all children shared personal stories about themselves and their relationships, insights about their OI, and an understanding of the strengths and challenges they experience on a day-to-day basis. The child’s perspective on their health is a basic right, and allowing it to be heard is the next frontier in the care of children with genetic diseases. Sisom OI, a methodological breakthrough within OI research, will offer clinicians an innovative and child-centered approach to capture this neglected perspective. It will provide a tool for the delivery of health care in the center that established the worldwide standard of care for children with OI.

Keywords: child health, interactive computerized communication tool, participatory approach, symptom management

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