The perspectives of New Zealand parents of children with Down syndrome regarding their children’s experience of school were explored in the present analysis, based on a study carried out by the Champion Centre, an early intervention service in Christchurch, New Zealand. Participants were 137 parents of children with Down syndrome who had experienced the New Zealand formal education system. They took part in a survey, designed to explore the outcomes and achievements of individuals with Down syndrome in New Zealand. The results of the present analysis indicated that parents are typically satisfied with the experience their children with Down syndrome have of school. It highlighted considerable variation in the experiences they have of school, but also emphasised some general trends and themes. Such efforts to clarify individual as well as shared characteristics and experiences among children with Down syndrome will contribute to ongoing efforts to enhance their experience of school and consequently, their active, valued participation in the classroom, school, and society in general.

Cultural beliefs and practices affect factors associated with early diagnosis of developmental disorders, parents' understanding of the disorder, beliefs about causes, and choice of treatment procedures. Currently, most research regarding autism emanates from Western cultural perspectives. However, the notion that treatment methods are universal and that they can simply be developed in the West and exported elsewhere is inherently flawed. The purpose of this qualitative study was to examine the experience of parents from India now living in the US or other countries outside India who have a child with an autism spectrum disorder, and explore the unique contributions of the Indian culture in parents' understanding and acceptance of a childhood disability like autism. Specific cross-cultural variables measured in the study included what symptoms the parents first recognized in their child, parents' beliefs about causes, choice of treatment procedures, roles of grandparents in the child's life, availability of community resources, parent-professional interactions, and acculturation. Twenty seven parents of children with autism (24 mothers, 3 fathers) participated in the study; all but 3 of them now lived outside India. All 27 participants and their spouses were Indian in ethnicity and were born and raised in India. Most parents endorsed the western beliefs in a combination of genetics, environmental toxins, and biological factors; a substantial number also endorsed a belief that immunizations were a direct cause. A significant minority of our parents also called upon traditional Indian beliefs in karma, destiny or fate, and parental mistakes in present or past life. Most of these parents were far from their own parents and in-laws and thus removed from the high level of grandparental involvement that would be typical if they had stayed at home; however, despite the long distance separating them, a majority of the families consider their parents and in-laws as important sources of emotional support. Although a majority of parents reported that they currently do not use any treatment that came from their Indian culture, about half reported that they would prefer to use a combination of both western and Indian medicine and educational practices, if it is made available. A majority of parents in the study appear to be well integrated with their host culture. These parents have become bicultural by maintaining characteristics of their own natal culture, while selectively acquiring those of their host culture.

Purpose ReadNPlay for a Bright Future develops a variety of projects aimed at promoting healthy living in families with young children in Appalachian Tennessee. The purposes of this research are to collect parents’ and caregivers’ perspectives on healthy eating for the purpose of designing a new book in the ReadNPlay children's book series to be entitled A Farmers Market Adventure and to collect the preferences of parents and guardians related to website and mobile application (app) usage to help shape the development of a new ReadNPlay My Baby Book app. Methods Anonymous clipboard surveys were administered to attendees of regional community events during July of 2014. Survey items asked parents about healthy eating in the context of their families and the role of parenting websites and mobile apps in their families. The results from these surveys were summarized using Excel. A total of 100 surveys were collected. Results It was found that when parents were asked to identify barriers to healthy eating, the most common responses were picky eaters in the household (30%) followed by lack of time (22%). When asked to identify things that have helped parents to encourage healthy eating in their families, the three most common responses were good recipes (20%), good role models (16%), and farmers markets (16%). Twenty-eight percent of parents surveyed do not use websites or apps for parenting, while those who do use parenting websites or apps identified advice from experts (20%) and advice from other parents (18%) to be the two features most commonly desired in such a resource. When asked what they do not like about website and app usage, 20% of parents indicated that these tools are “too complicated.” However, when parents are told that our group of pediatricians was developing a free mobile application for families designed to help them keep track of their baby’s growth, development, and eating habits, 75% of parents said such an app would be very helpful to them (25% said a little helpful). Conclusion These results will inform a new ReadNPlay children's book themed around healthy eating behaviors, overcoming pickiness, and shopping with families at farmers markets and a new ReadNPlay mobile app for families to use in conjunction with infant-toddler well child visits.

This study is a qualitative research of Japanese "chuzai" families (short-term residents) concerning parental perspectives toward children's education in Southern Illinois. The primary data was collected by questionnaires, individual and group interviews, and school observations. The main participants of this study were five mothers of the "chuzai" group in Southern Illinois, in which questionnaires, individual and group interviews were conducted. Furthermore, in order to gain an in-depth understanding of the children's education, school visits were made to the Japanese Saturday School and the ELL (English Language Learner) program of the local school which the children attended, including classroom observations. Additionally, interviews with the principal of the Japanese school and the ELL teacher were conducted, and questionnaires were also distributed to all the parents whose children attended the Japanese Saturday School. The notion of imagined communities (Anderson, 1991; Norton, 2001) was employed as the theoretical framework in order to examine "chuzai" people's current lives in Southern Illinois and their attitudes toward their children's education. The study reveals that "chuzai" families are different in various ways from both "eiju" (permanent residents) and Japanese communities in larger cities. Even though the Japanese community in Southern Illinois is small and features limited access to Japanese products, they maintain their Japanese lifestyle and strong connection with Japanese people in their community remarkably well. Interestingly, they show positive attitudes toward living in Southern Illinois, but they also have concerns due to their transiency as "chuzai." In relation to perspectives on children's education, this study suggests that parents have positive perspectives toward maintaining their Japanese culture, as well as learning the English language and experiencing American culture. Their heritage as Japanese strongly affects their daily practices even on a subconscious level; furthermore, their status of "chuzai" emphasizes the importance of keeping up their children's academic skills with the Japanese standard. At the same time, they also consider this short-term stay in the U.S. as an advantage in terms of providing new experiences and an opportunity for their children to learn English. The findings indicate that parents' imagined communities for their children's future have a great impact on their current investment (Norton Peirce, 2000). "Chuzai" families envision their future lives in Japan because they plan to return eventually, thus affecting their hopes for their children to be successful while readapting to schools in their home country. In this regard, Japanese Saturday school plays a crucial role as support for preparing children for their return to Japan regarding academic and social skills. In addition to the importance of becoming successful in Japan, parents also believe that the experience in the U.S. and English skills broaden their children's future in a global economy. The ELL program at the local school helps children in terms of learning English in order for them to be able to manage school life in the U.S. This study suggests that parental perspectives influence their children's education, and it is important for educators to understand the students' backgrounds and needs in order to provide appropriate education.

Many U.S. adolescents suffer from sleep disorders. Although poor sleep habits may contribute to health issues, less is known about how parental perspectives influence sleep health in adolescents. The purpose of this descriptive phenomenological study was to address a knowledge gap in understanding parental views to promote better sleep habits in adolescents. The blended theoretical framework included the theories of caring science, social learning, advocacy paradigm, and repair and restoration of sleep. Twenty parents in the Southeastern United States participated in open-ended interviews. Research questions were designed to elicit parental perspectives about recognizing unhealthy sleep habits, improving daily sleep health routines, and identifying conditions that led to consultation with health professionals. Colaizzi's data analysis strategy demonstrated thematic parental reports of declines in attitudes, behaviors, and performances as factors for recognizing unhealthy sleep habits; consistent and routine schedules as options for promoting improved sleep habits; and irregular sleep or health problems as reasons for consultation with health professionals. Recommendations for future research include exploring other geographical locations and investigating school bus schedules interfering with early morning sleep loss. To affect positive social change, dissemination of this study's findings to health practitioners may influence enhanced provider-patient communications and ultimately contribute to improved sleep habits among adolescents. Additionally, this study's findings may inform health care administrators with strategies to develop effective parent and provider education programs while reducing unnecessary health services' utilization and resulting costs for adolescent health.

Introduction: Family-focused cognitive behavioural therapy (FFCBT) is emphasized as an approach to optimize treatment outcomes for early-onset obsessive-compulsive disorder (OCD). Parental engagement is critical to successful treatment. However, few studies have examined how to promote parental engagement during FFCBT. Additionally, from a parental perspective, there is a limited understanding of factors that influence parental engagement throughout treatment, including the role of nurses. Aims: To determine (i) how parents experience and understand their engagement in FFCBT provided for their child with early-onset OCD in community or outpatient mental health programs, and (ii) how parents describe the role of nurses related to parental engagement during the treatment process. Methods: This study used an interpretive description approach. Semi-structured interviews were completed with parents (n = 17) recruited from community or outpatient children’s mental health programs in the Hamilton Region of Southwestern Ontario. Treatment provider interviews (n = 9) augmented the data collected from parents’ perceptions of their engagement and the role of nurses during FFCBT. Interviews were analyzed using Braun and Clark’s (2006) thematic analysis process. Results: A conceptualized model was constructed to display and communicate the individual, interpersonal, and contextual influences identified by parents and treatment providers. These influences facilitated or inhibited parental engagement during treatment across distinct phases, levels, and stages of engagement. Six distinct nursing roles were identified that promoted parental engagement throughout treatment. / Dissertation / Doctor of Philosophy (PhD) / Without effective treatment, pediatric obsessive-compulsive disorder (OCD) can interfere with childhood development. Early-onset OCD is a unique subtype of the disorder involving pediatric patients with symptoms that present before the age of 10 years. Family-focused cognitive behavioural therapy (FFCBT) emphasizing parental involvement is commonly used to treat pediatric OCD. However, parental engagement during FFCBT, including nurses’ roles, is poorly understood. This study aimed to increase knowledge about parental engagement during FFCBT for children with early-onset OCD receiving treatment in community programs. Data analysis of parent and treatment provider interviews identified various factors and how nurses influenced parental engagement during FFCBT. A model was made to display how these factors helped or hindered parental engagement during treatment and how nurses promoted engagement across three distinct phases. This new knowledge informed recommendations to promote parental engagement for treatment providers, improve service development and delivery, and strengthen nursing education.

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Objectif : Le suivi néonatal introduit une classification des enfants selon leur niveau de handicap : aucun, léger-modéré ou sévère. Les critères de classification, déterminés par des médecins et chercheurs, ne tiennent pas compte des opinions parentales. Lors de ce projet de maîtrise, les perspectives parentales concernant leur enfant prématuré à 18 mois d’âge corrigé ont été explorées. Hypothèse : L’hypothèse formulée était que les perspectives parentales différeraient des normes établies par les professionnels de la santé. Méthode : 190 enfants prématurés <29 semaines ont eu une évaluation standardisée, permettant la classification selon leur niveau de handicap. Les parents ont répondu aux questions : « Quelles sont vos inquiétudes concernant votre enfant? » et « Nommez les meilleures choses à propos de votre enfant. » Leurs réponses ont été analysées en ayant recours à une méthodologie qualitative et corrélées au niveau de handicap présenté par leur enfant. Résultats : Dans cette cohorte, 49% des enfants n’avaient aucun problème de développement, 43% avaient une atteinte légère à modérée et 8% une atteinte sévère. Les principaux thèmes positifs invoqués par les parents incluaient la personnalité (61%), le bonheur (40%), le développement et les progrès (40%), ainsi que la santé physique (11%). Les inquiétudes parentales principales comprenaient le développement (56%) et la santé physique (24%). Il n’y avait pas d’association entre les thèmes positifs et le niveau de handicap. Les parents d’enfants ayant une atteinte légère-modérée étaient davantage inquiets du développement de leur enfant. Conclusion : Les perspectives parentales concernant leurs enfants prématurés sont balancées, et en majorité positives. L’inclusion des perspectives parentales dans la recherche concernant le devenir des enfants prématurés est importante. Ce projet a permis la création d’un questionnaire quantitatif présenté à un plus grand groupe de parents, subventionné par les IRSC. / Objective: Measuring outcomes of premature birth is essential for quality control, research, patient care and information. At 18 months corrected age, children are classified into categories of severe, mild-moderate or no neurodevelopmental impairment (NDI). Outcomes of interest have been chosen by physicians and researchers, never including parental perspectives. The aim of this thesis was to explore parental perspectives regarding their preterm child. Hypothesis: The hypothesis was that parents’ perspectives and concerns would differ from those assessed by professionals. Method: This survey included 190 infants born <29 weeks of gestational age in one tertiary university health center. Infants underwent detailed developmental assessment and were classified according to NDI. Parents were asked two open-ended questions: “What concerns you most about your child?” and “Please describe the best things about your child”. Open-ended questions were analyzed using qualitative methodology, then correlated with level of NDI. Results: In this cohort, 49%, 43% and 8% had no, mild to moderate, and severe NDI. The main positive themes invoked by parents included their child’s personality (61%), happiness (40%), developmental outcome/progress (40%) and physical health (11%). Main themes regarding parental concerns included: neurodevelopment (56%) and physical health (24%). There was no association between positive themes and categories of NDI, but parents of children with mild-moderate NDI reported more concerns about development. Conclusions: Parents of preterm infants have a balanced perspective of their children, mostly positive. Neonatal outcome research would benefit from incorporating parental perspectives regarding their child, balancing prognostic information about preterm birth. This thesis project has led to the creation of a qualitative questionnaire which is now deployed through a CIHR Child-Bright initiative considering parent-important outcomes.