Experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder.

Background For families of children diagnosed with autism spectrum disorder (ASD) getting a diagnosis is a traumatic experience on which future care and education plans for the child depend. In this paper parental experiences of diagnosis and forward planning for children with ASD are reported. Method This paper is part of a large cross-sectional study conducted in Northern Ireland and the Republic of Ireland that assessed the needs and experiences of parents of children diagnosed with ASD. Questionnaires were designed and completed by 95 parents, reporting on 100 children, as well as 67 multi-disciplinary professionals. Results Findings confirm that diagnostic and planning processes are extremely stressful for parents, that statutory diagnosis takes a long time, that care and education plans do not include full parental participation, and that reviews of plans do not consistently include intervention data. Conclusion Policy and practice implications of these findings are important for future revisions of diagnostic tools and manuals.

Constrained adoptive parenthood and family transition: Adopters' experience of unplanned birth family contact in adolescence

Adoption policy in the UK emphasizes its role in providing secure, permanent relationships to children in care who are unable to live with their birth families. Adoptive parents are crucial in providing this life-long, stable experience of family for these vulnerable children. This paper explores the experience of adoptive parenthood in the context of changes to adoptive kinship relationships brought about by new, unplanned contact with birth family during their child's middle adolescence. This contact was initiated via informal social networks and/or social media, with older birth siblings instrumental in negotiating renewed relationships. The contact precipitated a transition in adoptive family life resulting in emotional challenges and changes in parent/child relationships, which were experienced as additional to the normative transitions expected during adolescence. Parental concern as a dominant theme was founded in the child and birth sibling's stage of adolescence, coupled with constraints on adoptive parenthood imposed by the use of social media, by perceived professional attitudes and by parental social cognitions about the importance of birth ties. Adoptive parents' accounts are interpreted with reference to family life-cycle theory and implications are suggested for professional support of adoptive kinship relationships.

Exploring the experiences of parents with children who have communication delays, as a population at risk for the development of behavioural concerns

Existing research identifies preschoolers with communication delays as a population at risk for the development of behavioural concerns. This risk increases when additional environmental factors such as parental stress and family conflict are also present. Research has also shown that behavioural concerns can be stable over time when they develop early. However, early intervention has been shown to be effective in addressing these concerns. The effectiveness of early intervention in addressing both child and family outcomes increases when interventions are delivered in a family-centred approach. This research project made use of data related to child behaviour and parenting, gathered through the Family Resource Project which explored the parenting experiences and resource access and allocation decisions of families who have preschool children with and without communication delays. Cluster analysis was used to explore whether there were identifiable clusters of children and families within each sample. Interview data fi"om each identified family cluster was then explored further, to identify how parents described their child's behaviour and their experience of parenting. Results show that, within this sample, parents of preschoolers with communication delays described their child's behaviour and their experience of parenting differently than did parents of children without communication delays. Results also showed that within this sample parents experiencing parental stress and/or family conflict described their child's behaviour and their experience of parenting differently than did parents from other clusters. Results suggest support for early intervention and the use of family-centred intervention, particularly for families of children with communication delays.

The Educational Experience of Students of Chinese Origin in a French-Speaking Context : the role of school, family, and community

Cette recherche vise à documenter l’expérience scolaire des élèves québécois d’origine chinoise à l’école secondaire de langue française et à examiner les dynamiques qui influencent la réussite scolaire de ces élèves. Elle s’intéresse plus précisément aux impacts des facteurs relatifs à l’école, à la famille immigrante, et à ceux de la communauté ethnique sur l’intégration de ces jeunes dans un contexte francophone. Les données ont été principalement recueillies à travers des entretiens semi-structurés approfondis auprès d’élèves d’origine chinoise et de différents acteurs du paradigme éducatif (parents, acteurs scolaires et intervenants communautaires). D’autres instruments, tels que l’analyse du contenu de documents et de médias, ont également été utilisés afin de fournir des informations contextuelles et d’enrichir les données d’entrevues. Les données ont été analysées selon un cadre théorique ouvert et inclusif où la réussite scolaire des élèves issus de l’immigration est mesurée en mettant l’accent sur l’influence de la maîtrise de la langue d’enseignement, du capital culturel et social de la famille et de la communauté immigrante, ainsi que des facteurs systémiques au niveau de l’école. Les résultats de cette étude dans trois écoles cibles montrent qu’en général les élèves d’origine chinoise connaissent une expérience positive, surtout en ce qui concerne leur performance scolaire en mathématiques et sciences. Cependant, les nouveaux arrivants ont tendance à éprouver des difficultés dans l’apprentissage du français et pour leur intégration sociale. En effet, le processus d’intégration socioscolaire des jeunes chinois est sous l’influence des différents milieux qu’ils fréquentent. À propos de l’influence des dynamiques scolaires, les résultats de la recherche indiquent qu’une relation maître-élève positive joue un rôle important dans la réussite éducative de ces élèves. Toutefois, l’insuffisance du soutien à l’apprentissage défavorise l’intégration linguistique et sociale des élèves nouvellement arrivés. Les données de cette étude soulignent notamment le rôle de la famille immigrante et de la communauté ethnique dans l’expérience scolaire de ces jeunes. D’une part, sous l’impact des dynamiques familiales, notamment ce qui à trait au projet migratoire, à la culture chinoise et à l’expérience pré- et post-migratoire, les parents immigrants chinois s’impliquent activement dans les études de leurs enfants, malgré des barrières linguistiques et culturelles. D’autre part, afin de surmonter les effets négatifs des faibles liens entretenus avec l’école de langue française, les parents chinois ont largement recours aux ressources au sein de la communauté ethnique, tels que les médias de langue chinoise, les organismes ethnospécifiques de services aux immigrants, l’école du samedi et les institutions religieuses ethniques. Ces institutions sociales ethniques contribuent à soutenir les valeurs culturelles, échanger des informations, établir des modèles pour les jeunes et à fournir des services appropriés en matière culturelle et linguistique.

The experience of friendship, victimization and bullying in children with an autism spectrum disorder: associations with child characteristics and school placement

Children with an autism spectrum disorder (ASD) may be vulnerable to social isolation and bullying. We measured the friendship, fighting/bullying and victimization experiences of 10–12-year-old children with an ASD (N = 100) using parent, teacher and child self-report. Parent and teacher reports were compared to an IQ-matched group of children with special educational needs (SEN) without ASD (N = 80) and UK population data. Parents and teachers reported a lower prevalence of friendships compared to population norms and to children with SEN without an ASD. Parents but not teachers reported higher levels of victimization than the SEN group. Half of the children with an ASD reported having friendships that involved mutuality. By teacher report children with an ASD who were less socially impaired in mainstream school experienced higher levels of victimization than more socially impaired children; whereas for more socially impaired children victimization did not vary by school placement. Strategies are required to support and improve the social interaction skills of children with an ASD, to enable them to develop and maintain meaningful peer friendships and avoid victimization.

“Very sore nights and days”: the child’s experience of illness in early modern England, c. 1580-1720

Sick children were ubiquitous in early modern England, and yet they have received very little attention from historians. Taking the elusive perspective of the child, this article explores the physical, emotional, and spiritual experience of illness in England between approximately 1580 and 1720. What was it like being ill and suffering pain? How did the young respond emotionally to the anticipation of death? It is argued that children’s experiences were characterised by profound ambivalence: illness could be terrifying and distressing, but also a source of emotional and spiritual fulfilment and joy. This interpretation challenges the common assumption amongst medical historians that the experiences of early modern patients were utterly miserable. It also sheds light on children’s emotional feelings for their parents, a subject often overlooked in the historiography of childhood. The primary sources used in this article include diaries, autobiographies, letters, the biographies of pious children, printed possession cases, doctors’ casebooks, and theological treatises concerning the afterlife.

Impact of dental caries and trauma on quality of life among 5- to 6-year-old children: perceptions of parents and children.

OBJECTIVE To assess the impact of dental caries and traumatic dental injuries (TDI) on the oral health-related quality of life (OHRQoL) of 5- to 6-year-olds according to both self- and parental reports. METHODS A total of 335 pairs of parents and children who sought dental screening at the Dental School, University of São Paulo, completed the Scale of Oral Health Outcomes for 5-year-old children (SOHO-5), which consists of a child self-report and a parental proxy-report version. Three calibrated examiners assessed the experience of caries according to primary teeth that were decayed, indicated for extraction due to caries, or filled (def-t). TDI were classified into uncomplicated and complicated injuries. Poisson regression models were used to associate the different clinical and sociodemographic factors to the outcome. RESULTS Overall, 74.6% of children reported an oral impact, and the corresponding estimate for parental reports was 70.5%. The mean (standard deviation) SOHO-5 scores in child self-report and parental versions were 3.32(3.22) and 5.18(6.28), respectively. In both versions, caries was associated with worse children's OHRQoL, for the total score and all SOHO-5 items (P < 0.001). In contrast, TDI did not have a negative impact on children's OHRQoL, with the exception of two items of the parental version and one item of the child self-report version. In the final multivariate adjusted models, there was a gradient in the association between caries experience and child's OHRQoL with worse SOHO-5 score at each consecutive level with more severe caries experience, for both child and parental perceptions [RR (CI 95%) = 6.37 (4.71, 8.62) and 10.81 (7.65, 15.27)], respectively. A greater family income had a positive impact on the children's OHRQoL for child and parental versions [RR (CI 95%) = 0.68 (0.49, 0.94) and 0.70 (0.54, 0.90)], respectively. CONCLUSIONS Dental caries, but not TDI, is associated with worse OHRQoL of 5- to 6-year-old children in terms of perceptions of both children and their parents. Families with higher income report better OHRQoL at this age, independent of the presence of oral diseases.

Stepping Stones Triple P: A pilot study to evaluate acceptability of the program by parents of a child diagnosed with an Autism Spectrum Disorder

The experience of parents of children with Autism Spectrum Disorder (ASD) in standard parenting programs has not been researched, although anecdotal evidence suggests that they do not find them acceptable. Forty-two parents of children with ASD were asked to view a DVD explaining individual parenting strategies from Stepping Stones, a new branch of the Triple P program targeted specifically at parents of children with disabilities. Parents were asked to rate each strategy for acceptability, usability and behavioural intention, i.e., their intention to use the strategy. Additionally, parental attributions and parental perceived control were explored as possible barriers to positive evaluations of Stepping Stones parenting strategies. A focus group of parents was used to gather more detailed parent response to the program. Parent responses to the program were generally positive and attribution of the child's behaviour to uncontrollable factors was found to predict higher ratings of usability. The results were interpreted within the context of Weiner's attributional theory and the theory of reasoned action. The limitations of this study and suggestions for future research are discussed. (c) 2005 Elsevier Ltd. All rights reserved.

Settling in:understanding the role and influence of parents on student transition to university

This paper will present details and findings to date collected as part of a research project currently being undertaken at Aston University, Birmingham, UK. The research focuses on the adjustment and experience of first year students and the role and influence of their parents and family during this time. In addition to Educational research literature, the research draws on “Emerging Adulthood” to assist in understanding the experience of students upon enrolling on a Higher Education degree. It is anticipated that the findings will contribute to the UK student retention debate as well as the adjustment literature.

Adolescents and the experience of parental divorce:including reference to the expectations of teacher trainees

The aims of this study were to investigate the impact of parental divorce on adolescents, and the expectations of teacher trainees with regard to children of divorce. The literature related to children of divorce is reviewed and the results of interviews with a sample of recently divorced custodial parents and their adolescent children, using a structured interview schedule, are described. The semantic differential technique was used to obtain ratings of a sample of teacher trainees' expectations of children of divorce as compared with their ratings of several other categories of children. The results of the interviews with parents and their adolescent children suggested that parental divorce does not necessarily interfere with adolescent development and that for some adolescents the reduction of conflict in the home might enhance normal development. They also suggest that adolescents would prefer to live in a one parent home rather than a two parent home which is fraught with conflict, and that it is preferable for parents who are unable to resolve such conflict in any other way to separate rather than allow it to persist. The ratings of children of divorce by teacher trainees suggest that they hold more negative expectations of such children than of other groups • such as adopted children. The contrast between this finding and the results of the interviews with adolescents and their parents lends some support to the existence of the divorce myth; that is, the cultural belief that divorce has the inherent power to make people unhappy. The implications for policy, practice and further research are discussed.

Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people.

Access to better education: The school choice experience of families served by low-performing elementary public schools in Miami-Dade County

Public school choice education policy attempts to create an education marketplace. Although school choice research has focused on the parent role in the school choice process, little is known about parents served by low-performing schools. Following market theory, students attending low-performing schools should be the primary students attempting to use school choice policy to access high performing schools rather than moving to a better school. However, students remain in these low-performing schools. This study took place in Miami-Dade County, which offers a wide variety of school choice options through charter schools, magnet schools, and open-choice schools. ^ This dissertation utilized a mixed-methods design to examine the decision-making process and school choice options utilized by the parents of students served by low-performing elementary schools in Miami-Dade County. Twenty-two semi-structured interviews were conducted with the parents of students served by low-performing schools. Binary logistic regression models were fitted to the data to compare the demographic characteristics, academic achievement and distance from alternative schooling options between transfers and non-transfers. Multinomial logistic regression models were fitted to the data to evaluate how demographic characteristics, distance to transfer school, and transfer school grade influenced the type of school a transfer student chose. A geographic analysis was conducted to determine how many miles students lived from alternative schooling options and the miles transfer students lived away from their transfer school. ^ The findings of the interview data illustrated that parents’ perceived needs are not being adequately addressed by state policy and county programs. The statistical analysis found that students from higher socioeconomic social groups were not more likely to transfer than students from lower socioeconomic social groups. Additionally, students who did transfer were not likely to end up at a high achieving school. The findings of the binary logistic regression demonstrated that transfer students were significantly more likely to live near alternative school options.^

Access to Better Education: The School Choice Experience of Families Served by Low-Performing Elementary Public Schools in Miami-Dade County

Public school choice education policy attempts to create an education marketplace. Although school choice research has focused on the parent role in the school choice process, little is known about parents served by low-performing schools. Following market theory, students attending low-performing schools should be the primary students attempting to use school choice policy to access high performing schools rather than moving to a better school. However, students remain in these low-performing schools. This study took place in Miami-Dade County, which offers a wide variety of school choice options through charter schools, magnet schools, and open-choice schools. This dissertation utilized a mixed-methods design to examine the decision-making process and school choice options utilized by the parents of students served by low-performing elementary schools in Miami-Dade County. Twenty-two semi-structured interviews were conducted with the parents of students served by low-performing schools. Binary logistic regression models were fitted to the data to compare the demographic characteristics, academic achievement and distance from alternative schooling options between transfers and non-transfers. Multinomial logistic regression models were fitted to the data to evaluate how demographic characteristics, distance to transfer school, and transfer school grade influenced the type of school a transfer student chose. A geographic analysis was conducted to determine how many miles students lived from alternative schooling options and the miles transfer students lived away from their transfer school. The findings of the interview data illustrated that parents’ perceived needs are not being adequately addressed by state policy and county programs. The statistical analysis found that students from higher socioeconomic social groups were not more likely to transfer than students from lower socioeconomic social groups. Additionally, students who did transfer were not likely to end up at a high achieving school. The findings of the binary logistic regression demonstrated that transfer students were significantly more likely to live near alternative school options.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.

From global advocacy to local resistance. Benin's experience of competency-based school curriculum

In the vein of the "Education for All" campaign to promote access to education, a wave of curriculum revision along the competency-based approach has swept francophone countries in sub-Sahara Africa, thus Benin. The current study documents local actors' various interactions with the curricular reform in the course of its implementation. Secondary data supplemented with qualitative research techniques such as semi-structured interviews with teachers, and focus group discussions with parents enable to relate the patterns of change, the challenges and resistance to change. The actors spectrum generated illustrates advocacy on one hand and resistance on the other. Advocacy of local actors reflects the global optimistic discourse on education and resistance is favoured by disappointing policy outcomes as well as contextual constraints. (DIPF/Orig.)