Parental Beliefs on Childhood Disability: insights on culture,child development and intervention

This paper examines studies on the interface of culture, parental beliefs, and childhood disability, within an ecological framework. Through a discussion of studies on parents’ beliefs about the nature and causes of childhood disability, and their ideas about treatment among various cultural groups, it is proposed that parental beliefs is a means by which culture affects child development. Parents’ beliefs about childhood disability provide the structure and context to the development of a child with a disability. Parents’ beliefs about the nature and causes of disability likewise provide the context for parents’ beliefs about treatment and intervention. The studies also revealed that parents held both biomedical and sociocultural views, reflecting duality in beliefs. Conceptual and methodological considerations for future research on culture, parental beliefs, and childhood disability are discussed. The linkages between parents’ ideas and intervention has implications for clinical practice, particularly for multi‐cultural societies.     

Parents’ views of an optimal school life: using Social Role Valorization to explore differences in parental perspectives when children have intellectual disability

Children with disability continue to experience disadvantage in their school lives; thus, the question of what makes up an optimal school life, and whether this is different for children with disability, becomes critical. This paper reports on research into parental views about an optimal school life and the usefulness of Social Role Valorization theory as a framework for exploring this issue. Six focus group interviews were used to collect data from 30 parents. Children of a variety of ages, with and without disability, were represented. All groups were similar in the aspects they regarded as optimal in a child’s school life. These fell into five categories: being connected, growth, personhood, basic needs, and happiness. Despite this similarity across groups, there were some notable differences in the detail; for example, parents of children with disability had a stronger focus on children being wanted, high expectations, and being seen as an individual.     

Being a parent's eyes and ears: emotional literacy and empathy of children whose parents have a sensory disability

Children of parents with sensory disability may feel that their experience helped nurture their sense of empathy. The study was designed to examine the connection between parents’ sensory disability (visual disability to blindness and hearing disability to deafness) and the empathy and emotional literacy of their non‐sensory‐disabled children. Participants were 77 children aged 7–17 – 37 children of parents with a sensory disability and 40 children of parents with no such disability. Questionnaires to check empathy and emotional literacy were accompanied by a demographic questionnaire. Findings revealed that levels of empathy and emotional awareness of others (a measure of emotional literacy) were higher among children of parents with a sensory disability than among children of parents without a disability. The results expand the literature on that subject and shed light on the important issues of empathy and emotional literacy in families with disability.     

RESEARCH SECTION: Between a rock and a hard place: parents' attitudes to the inclusion of children with special educational needs in mainstream and special schools

In this paper, Katherine Runswick‐Cole, a researcher at the Research Institute for Health and Social Change at Manchester Metropolitan University, engages with parents' attitudes to the placement of their children with special educational needs in mainstream and special schools. She sets her review of parents' views within the current policy and legislative context. She then moves on to explore parents' attitudes to inclusion by drawing on the social model of disability as an analytical tool and developing a typology of parental school choices. The study reported in this paper involved 24 parents who were contacted through voluntary organisations and interviewed, either in their own homes or on the telephone. The views of seven professionals were also gathered. The findings reveal that parents' attitudes to mainstream and special schooling are influenced by their engagement with models of disability. The parents' experiences suggest that, despite the shifts in policy we have seen since 1997, the process of inclusive education continues to be fragile.     

Partnership with parents of disabled children in research?

Parent/professional partnership is a key theme in government policy and service delivery for parents of disabled children, yet there is little evidence of such partnerships in research. Drawing on the literature concerning parents' experiences of caring for and raising a child with additional needs; parental involvement and partnerships and the social analysis of disability, this article sets out the rationale for parents' participation in educational research. It proposes a parents' participatory research approach adapted from a disability or emancipatory research paradigm, which the author used when conducting her doctoral research. She describes how there was evidence of parental participation in the study on three levels, through, firstly, the parent/researcher who initiated and co-ordinated the study; secondly, the parents' advisory group, who advised the researcher, completed some analysis and discussed the findings and, thirdly, the parents in the sample, who were offered opportunities to participate, for example, in decisions concerning the content of the data and development of the research methods that were used. Finally, the article discusses to what extent the parents participating in this study were given a voice to express their views, some control over the research process and so were treated as partners in the research process. It concludes that this research study has extended the notion of working in partnership with parents to the field of research and demonstrated that a parents' participatory research approach is possible. It now needs to be developed and replicated in other studies with parents of disabled children.     

Parents’ perceptions of their child’s resilience and competencies

This study examined parental views of their child’s educability through the parents’ perceptions of their child’s resilience. The purposes of the study were: (1) to examine psychometric properties of the rating scale created to measure parental views of their child’s educational and psychological resilience, (2) to explore whether the parents’ views of the child’s resilience were related to their notions of the child’s competencies and (3) to examine how parents’ perceptions of their child’s resilience were related to the parent’s social position and the child’s gender. Data were collected by questionnaire from the parents of fifth-grade children (N=391). The parental rating scale consisted of three dimensions of resilience, all with satisfactory reliability. Parents’ views of their child’s resilience were related to their perceptions of child’s abilities and school success, suggesting that the parental rating scale had concurrent validity. The results also indicated that parents’ views of their child’s resilience were related to their gender and education and to the child’s gender. Furthermore, parents’ views of their child’s educational resilience, based on parents’ trust in their child’s internal capacities, were related to the parental definition of their child’s cognitive-verbal competencies, in particular.     

Purposes of Early Childhood Education: expressed views of teachers and parents in Hong Kong

This article reports on a study of 100 Chinese parents and 100 Chinese teachers in Hong Kong who were interviewed on a range of questions relating to their views on the purposes of early childhood education. In Hong Kong early childhood education refers to kindergartens and nursery centres. The administrative division in Hong Kong between kindergarten and nursery centres leads to community views whereby nurseries are perceived as being child minding centres only. The study analyses and compares the views of both parents and teachers showing where congruence and differences occur.     

Teachers' views of their pupils with profound and multiple learning difficulties

This paper explores the perceptions of a small group of teachers of pupils with profound and multiple learning disabilities (PMLD) in north‐eastern England. The focus of the paper is their views of their pupils who have PMLD. A total of 14 teachers were interviewed, both individually and in small groups over a four‐year period. This paper stems from the individual interviews, which were validated at the group interview stage. Through the interviews we hear how neurological, developmental and co‐existence issues help shape teachers’ views of their pupils. Thirty years ago this group of pupils received their education from the Department of Health; today they are in schools and we hear the teachers in this project reflect on their students’ learning needs in positive and professional ways. What emerges through this research is the need for teacher educators to support professional development experiences that enable teachers to integrate the distinct perspectives of parents and the more contemporary theories of disability into their understandings of this group of learners. In this way, teachers of pupils with PMLD would build upon their professional knowledge base to include wider parental and societal perspectives.     

Prevalence and outcomes for parents with disabilities and their children in an Australian court sample

OBJECTIVE: The purpose of this study was to obtain sound prevalence and outcomes data on parents with disabilities and their children in statutory child protection proceedings. METHOD: The court files of all care and protection matters initiated by the statutory child protection authority and finalized in a 9-month period (n=285) at two Children's Courts in NSW, Australia were reviewed. RESULTS: Parents with disabilities featured in almost one-third of the cases (29.5%). Parental psychiatric disability was most prevalent at 21.8% followed by parental intellectual disability (mental retardation) at 8.8%. Significant associations were found between parental disability and court outcome with a disproportionately large number of children of parents with intellectual disability being made wards of the state. CONCLUSIONS: The findings demonstrate that parents with disabilities are significantly over-represented in statutory child protection proceedings and that the outcomes of these proceedings vary according to disability type.     

Parent-preschool partnership: many levels of power

This study aims to examine the meaning-making of parents in five Icelandic preschools concerning the collaboration between preschools and families. Further, the perspectives of educators on the views of the parents were also sought. The theoretical background was Moss’s ideas of democratic early childhood education and MacNaughton’s ideas of power relationships between parents and educators. Data were gathered in two steps: first, focus group interviews were conducted with parents; and second, focus group interviews were conducted with a group of preschool educators who reflected upon the parent interviews. The parents and educators seemed to have similar experiences and views of the parent-professional collaboration, and of the division of power and knowledge between the two groups. The type of collaboration the parents and the educators described is not in line with democratic preschool pedagogy as explained by Moss. The parents from other cultures who participated in the study were in a marginalised position, and the educators seemed to be unsure about how to communicate with and accommodate families from cultures different from their own. The study reveals power relationships on many levels in the preschool community.     

国内外幼小衔接研究趋势的比较

近十年来幼小衔接对于儿童发展的重大影响已经受到了国内外研究者的重视,但国内外关于幼小衔接的研究存在诸多差异,国内相关研究与国外相比还存在一定差距.国外研究不仅关注了家长在儿童幼小衔接期中关注的问题,家长对儿童入学准备的认识,而且涉及了家长对幼小衔接的感受,参与幼小衔接的愿望等内容.国内研究主要只是关注了家长对幼小衔接的不正确认识,而且缺乏较大规模的相关调查.虽然国内外研究都涉及了教师对儿童入学准备的期望和对幼小衔接活动的看法,国外相关研究更为具体、深入,而且还比较了教师与家长在儿童入学准备认识上的差异,对幼小教师关于托幼机构与小学之间一致性与连续性的看法进行了考察.此外,国外研究还充分重视幼小衔接中最大利益相关者儿童的情感态度与认知、期望,相比之下国内尚未有这方面的研究,很值得在将来的研究中弥补这方面的空白.对各个利益相关者关于幼小衔接重要问题的认识与情感态度进行比较,尤其是对家长和教师、幼小教师、儿童与成人之间的观点进行比较,将有助于促进不同利益相关者之间的沟通与交流,改善幼小衔接实践,帮助儿童平稳、顺利地度过幼小衔接的关键时期.     

Self-Concept of Young People with Physical Disabilities: Does integration play a role?

Different countries have approached the education of students with a disability in different ways. Some have advocated for maximum integration, while others have maintained separate schools for those with special needs. The impact of the different educational settings on the self-concept of young people with a physical disability so far has received very little empirical attention. This study compared four groups of students with a physical disability who differed in their level of school integration: (a) US integrated students ( n = 53), (b) Czech integrated students ( n = 14), (c) Czech students educated at special schools on a daily basis ( n = 51), and (d) Czech students attending special schools on a residential basis ( n = 66). In addition, these young people with a disability were compared to a normative sample of Czech students without a disability. The comparisons were made on self-reported self-perceptions, aggression/emotional instability, view of the world, and dependency using the Personality Assessment Questionnaire (Rohner, 1991). Significant between group differences favouring integration were found. More integrated students reported lower levels of aggression, more positive views of themselves, and more positive views of the world. Discussion addressed implications for educational policies for children with special needs.     

A Longitudinal Study of Parental Stress and Support: From Diagnosis of Disability to Leaving School

Parental stress attributed to both a child with an intellectual disability and their youngest child without a disability was examined over a seven year period. Stress and support were also examined in relation to the life stages of disability diagnosis, starting school and completing school. Stress attributed to the child with a disability was greater than stress attributed to the youngest child without a disability and remained high over the seven year period, however, an increased level of stress was attributed to the child without a disability. In terms of life stages, diagnosis of intellectual disability in a child remained as the most stress‐inducing of the life events included in the study, however, most parents had also experienced heightened stress at the time their child started school, and also during the transition from school to work. The support parents found most helpful reflected their changing focus of worry over time. The implications and limitations of this study arc discussed.     

Parents' attitudes to inclusion of their children with special needs

This study investigated the attitudes of 354 Australian parents who have a child with a disability and who attends a state school in Queensland. The types of disability of the children were broadly in accordance with accepted prevalence figures, except for a greater number reported as having autistic spectrum disorder and fewer students with a learning difficulty/attention deficit hyperactivity disorder. The children were in a range of classes, from special schools to schools where there was in-class help from a special teacher or teacher aide. Many of the parents favoured inclusion, some would if additional resources were provided, and a small group of parents favoured special placement. There were a limited number of negative attitudes to inclusion reported by the parents, and though some parents thought that some need existed for in-service education about inclusion, this was not a widespread view.     

La Transición: parent perspectives on transition for Latino youth with intellectual and developmental disabilities

The transition to adulthood can be a challenging time for adolescents with intellectual and developmental disabilities. Its complexity, however, may be magnified for families who have immigrated to the United States. This study examined the transition expectations and experiences of six first-generation, Latino parents and their transition-aged (14–22) children with intellectual disability, autism, and/or multiple disabilities. Through individual interviews held in Spanish or English, parents offered insights into (1) their visions of success for their child, (2) the distinct barriers they face as immigrant families, and (3) their suggestions for schools and adult agencies related to supporting strong transitions. Their portraits of desired outcomes were quite individualized and reflected high expectations. Factors identified as inhibiting successful transitions included persistent language barriers, the views of certain professionals and community members, and exclusion from typical school experiences. Parents encouraged schools to support family advocacy, foster greater student independence, expand adult programming, and reduce segregated educational placements. We present implications for educators on working with Latino families, as well as offer recommendations for future research.     

对Michael Olive的社会模式残疾观的解读与反思

残疾观对残疾的定义、残疾人应获得的资源以及残疾人的自我认同等方面均起到了重要的作用,它深刻影响了残疾人的生活及社会对他们的态度和反应。随着20世纪80年代残疾人运动的开展,社会模式残疾观受到相关专业人员的广泛关注,并使得学术界对此展开了热烈的讨论。文章阐述了社会模式残疾观的缘起及核心观点,对该模式下的残疾观进行解读和反思,以期为残疾观的研究提供一点思考,促进更多学者对残疾观进行深入系统的研究。     

How do parents acquire information to support their child with a disability and navigate individualised funding schemes?

With the international trend towards individualised funding packages that allocate funds to individuals to spend on disability support needs, the challenge of ensuring parents can readily access useful information to make decisions becomes paramount. The present research used a two stage, mixed method sequential approach (with 291 parents surveyed and 56 parents participating in focus groups) to determine how parents acquire information to enhance their understanding of their child's disability and determine how to use an individualised funding scheme to benefit their child and family. Parents attested to the importance of person‐to‐person communication and valued information that originated from other parents of a child with a disability, and from professionals who knew their child. Parents also spoke about the limitations of the internet, noting that reliance on the internet could cause confusion as the validity of information could not be assured. Early childhood intervention services emerged as a key instrument in developing the capacity of families to make informed choices. Understanding families'’ perspectives on the utility of information sources is critical and timely as policy‐makers and service providers within the disability sector shift practice to meet the rise of individualised funding internationally.     

‘Parents don’t want their children to speak their home language’: how do educators negotiate partnerships with Chinese parents regarding their children’s use of home language and English in early childhood settings?

This study investigated five Australian early childhood educators’ negotiation of the complex terrain of working in partnership with Chinese parents regarding their children’s language usage in early childhood settings. Semi-structured interviews were undertaken to explore educators’ views on children’s language usage in early childhood settings, their perception of Chinese parents’ language expectations and their strategies in resolving the tension between parental expectation and educator views on children’s language usage under the current regulatory frameworks. Educators reported that many Chinese parents expected their children to use only English in early childhood settings. Such a practice would not align with educators’ views of permitting children to use languages freely. The educators developed different strategies to address the tension between their desire to achieve positive outcomes for children and their need to work in partnership with families. Implications for the further preparation of educators are discussed.     

Effective Life Management in Parents of Children with Disabilities: A Cross-National Extension

This study is part of an on-going research program exploring life management in families of children with a variety of disability characteristics and age ranges. Scorgie, Wilgosh, and McDonald (1996) used a qualitative, interview methodology to identify effective strategies, qualities, and transformational outcomes for parents of children with disabilities who had been identified, by service agencies, as having effective life management strategies. A larger group of parents, from similarly identified, effectively managing families, was surveyed (Scorgie, Wilgosh, & McDonald, 1997), using the Life Management Survey (LMS) developed from the nine themes found in the qualitative study, supporting the original findings. A replication of the LMS survey study (Wilgosh, Scorgie, & Fleming, 2000) confirmed the previous findings with parents who were not preselected as effective life managers. In fact, the consistency across the three Canadian studies supported examination of family life management cross-nationally. The present study shows that Catholic Italian parents of children with disabilities have patterns of effective life management strategies, parent qualities, and parent transformational outcomes which characterize them and are similar to those of the Canadian parents. However, in the Italian study, some differences were found related to type of disability, emphasizing the need for qualified professional support, guidance and counselling, focused on the unique needs of each family, as related to the child's disability needs.