Empowerment in early childhood intervention : perspectives of parents of children with disabilities

There have been various changes to the manner in which early intervention services for children with disabilities have been provided in recent decades. One of the most significant paradigm shifts that has accoured pertains to a change in the level of family involvement in early intervention, so that families are now required to be equal partners with professionals in the service provision process. It is now policy in Victoria that early intervention services follow a family-centred model of practice. Services adopting this model aim to empower parents, so that they may have impact on their lives, and the lives of their family members, both during and beyond the years of direct service participation. Much of what is known about empowerment to date is based on theory, author opinion, and research that is largely survey-based. There has been little interview-based research, particulary involving parents of children with disabilities, as well as little Australian research conducted regarding empowerment. To the researcher's knowledge, there has been no interview-based research that specifically asked parents of children with disabilities about their perspectives on empowerment and disempowerment. Parents of children with disabilities are not invited to contribute their opinions in services and research. Empowerment is an individual concept and this research provided parents with an opportunity to express their views on this topic. Parent's perspectives on empowerment are vital for service providers who aim to follow the intervention model required by policy. This research, which was guided by the principles of ecological theory and critical theory, involved to individual semi-structured interviews with 37 Victorian families of children with disabilities. Twenty-one of these families had children currently participating in early intervention services, and 16 families had children of mid-primary school age, who had previously participated in early intervention experiences; the factors that they believe influence empowerment and disempowerment; and helpful and unhelpful experiences with early intervention staff and other people in their lives. Data were analysed primarily inductively, in the context of grounded theory. Responses from the two groups of parents were then compared, as were different emergent themes according to helpfulness and empowerment. The nature of enduring empowerment, one of the key objectives of early childhood intervention, was also considered. From the analysis of data, several themes emerged as influential in the empowerment process for both groups of parents including: information, education and knowledge; meeting and talking with other families of children with disabilities; decision-making and choice; having confidence; participation, involvement and input; meeting or addressing families' practical needs; and having a child with a disability. The results of this research provide valuable information for parents, professionals, agencies, organisations, and the wider community, regarding how families can be supported more effectively and how power can be more equitably balanced.

An ecobehavioural analysis of interactive engagement of children with developmental disabilities with their peers in inclusive preschools

Ecobehavioural analysis procedures were used to examine the interactive engagement of children with developmental disabilities due to Down syndrome who attended inclusive preschools for 2 years. Compared with typical children, the children with disabilities displayed infrequent interactions with peers for the duration of the study. For the children with disabilities, interactive engagement was largely unrelated to the characteristics of class activities, while typical children responded positively to activities expected to promote peer interaction. The results are discussed in terms of the inadequacy of informal strategies commonly applied in inclusive preschool settings to promote interactive engagement in children with disabilities.

Investigative interviewing of children with intellectual disabilities

This research was designed to examine two broad issues in relation to the investigative interviewing of children (aged 9 to 13 years) with mild and moderate intellectual disabilities. First, how do children with intellectual disabilities perform (relative to children matched for chronological and mental age) when recalling an event in response to various questions? Second, what question types and interview strategies do police officers and caregivers use to elicit accurate and detailed accounts about an event from children with intellectual disabilities? The rationale for exploring each of these issues was to determine possible ways of improving the elicitation of evidence from children with intellectual disabilities. While children with intellectual disabilities constitute a high proportion of all child victims of abuse (Conway, 1994; Goldman, 1994; Morse, et ah, 1970), they rarely provide formal reports of abuse and of those incidents that are reported, few cases progress to court (Henry & Gudjonsson, 1999). Study 1 used a standard interview protocol containing a variety of questions and an interview structure commonly used in investigative interviews. Specifically, the memory and suggestibility of eighty children with either a mild and moderate intellectual disability (M age = 10.85 years) was examined when recalling an innocuous event that was staged at their school. The children's performance was compared with that of two control groups; a group of mainstream children matched for mental age and a group of mainstream children matched for chronological age. Overall, this study showed that children with both mild and moderate intellectual disabilities can provide accurate and highly specific event-related information hi response to questions recommended in best-practice guidelines. However, their recall was less complete and less clear in response to free-narrative prompts and less accurate in response to specific questions when compared to both mainstream age-matched groups. Study 2 provided an in-depth analysis of the types of questions and strategies used by twenty-eight police officers and caregivers when interviewing children with either mild or moderate intellectual disabilities (M age = 11.13 years) about a repeated event that was staged at their school. The results revealed that while the approach used by the police officers was generally consistent with best-practice recommendations (i.e., their interviews contained few leading, coercive or negative strategies), there were many ways in which their approach could be improved. This study also showed that the caregivers used a high proportion of direct and negative strategies to elicit information from their children. Even when caregivers used open-ended questions, their children provided less event-related information than they did to police interviewers. The results of both studies were discussed in relation to current 'best-practice' guidelines for interviewing children and recommendations were offered for improving the quality of field interviews with children who have intellectual disabilities.

Integration at Harryson Primary School : a study of aspects of a primary school's involvement in the integration of students with disabilities into its programs

The integration of students with disabilities, impairments and problems in schooling has been stated government policy in the Victorian education system since 1984. Many schools have become involved in programs whereby students with varying disabilities have participated in the educational and social lives of their local school. This research details one primary school's experiences with the integration program. The involvement of teachers, parents, students, integration aide and principal in mutually supportive roles is described. The role of the Integration Support Group is highlighted. The participation of the students being integrated and their non-disabled peers is described in detail. The roles of the principal, the integration aide and the Integration Support Group are found to be crucial in this school's program.

Constructing a Malaysian early intervention programme for children with disabilities

This case study of a parent-initiated community project called Wings Melaka has helped improve provision of early intervention services to Malaysian children with disabilities, and their families, by making contributions specifically to the workplace at Wings Melaka, and more generally, to the much-neglected field of early intervention in Malaysia.

Assessment of measures of physical activity of children with cerebral palsy at home and school: a pilot study

ABSTRACT
Home and school are important settings where children can accrue health promoting physical activity (PA). Little is known about the PA levels and associated environmental characteristics at home and school in children with cerebral palsy (CP). An observational tool - Behaviors of Eating and Activity for Children’s Health Evaluation System (BEACHES) - offers potential for providing information.

Mealtime behaviour among children with disabilities: family interactions and stress

 The impact of feeding problems on parental stress, quality of mealtime interactions and opportunity for socialisation and naturalistic learning during mealtimes was examined in children with developmental disabilities and typically developing children through survey and qualitative analysis of video recordings of family mealtimes.

Spreading the word: using film to share research findings and knowledge about children with disabilities in Vanuatu and Papua New Guinea

While there is increasing international interest in disability inclusive development, people with disability largely remain ‘unseen, unheard and uncounted’ (UN ESCAP 2012:1). Children with disability, particularly, remain excluded from research informing development, and there is a paucity of information that is drawn directly from the self-report of children with disability living in developing countries. This exclusion occurs across all stages of research, including access to research findings. When child research is conducted in such countries, to gain further evidence to support disability inclusive development and advance human rights, researchers must question how findings will be reported back to participants and their communities, and seek a method that is both accessible and culturally relevant. This paper reports on the Voices of Pacific children with disability research project about the human rights of children with disability in Vanuatu and Papua New Guinea (PNG), and focuses on film as a dissemination method. Project researchers developed methods to enhance the participation of children with diverse disabilities as informants, and drew upon community development principles to disseminate research findings via film; a method that resonated with the aural and visual story telling traditions of participants.This medium also included accessibility features that have been utilised by local and international audiences.

Working mothers of children with chronic illness: narratives of working and caring

This paper reports the initial findings of an exploratory, qualitative study of the life and work of people who are working full-time and also caring for a child with chronic illness. The demands of such a lifestyle are significant. Respondents - all women - often reported 'doing-it-all' while constantly being frustrated and challenged in their mothering role.

Towards ending the silence: working women as carers of children with chronic illness/disability

This research presents stories from Australian women who work and care for a child with a significant chronic illness or disability. The paper considers the theory of Silencing the Self (Jack, 1991) in relation to the reported experiences and behaviours of these women. We report three themes of Caring and Working: "Otherness", "Doing it All" - but "Wanting to Live a Normal Life". As in Jack's study, these women engaged in silencing of the self. However, we also observed other people contributing to their silence and, unlike the respondents in Jack's study, many of these women fought the silence and did not accept that their unhappy situations should continue. They sought a life where silencing may not have been necessary.

Working parents of children with chronic illness/disability: narratives of concern

This paper reports some initial findings of an exploratory, qualitative study of the life and work of people who are, concurrently, parents of a child with chronic illness/disability and working full time. The respondents of this study happen to be all women. Two emerging themes of interest are explored here. The first is a revisit of traditional notions of the abusive workplace, which seems to be of special interest when considering the plight of these women. Secondly, the numerous work and home demands on the working mother, especially the working mother of a child with chronic illness or disability. [twas unsurprising that these women reported extensive and multiple physical and emotional demands while trying to manage full time work with significant home and caring responsibilities. What is surprising is that these narratives of concern have not previously been explored, and should be.

To do or not to do (exercise) : physical activity in the lives of people with cerebral palsy

We examined the lives of adults with cerebral palsy who had minimal involvement in physical activity (Judy, aged 60; Alana, aged 29), who were involved in physical activity (Amy, aged 25; Ben, aged, 30), or who had minimal involvement in physical activity and who then participated in physical activity (David, aged 27; Tim, aged, 24). After receiving ethical approval, a life-history research approach (Denzin, 1989: Interpretive biography. Newbury Park, CA: Sage) was used, with the participants’ stories being interpreted using primarily psychodynamic theory (Freud, Erikson, Adler, Basch) to gain insight into their meaning and experiences of physical activity.

Judy and Alana had similar childhood experiences, which included: performing difficult, and sometimes painful, physiotherapy; wearing callipers to assist their walking; lacking competence at physical activity; and being socially isolated from their classmates. These aspects of their life histories seemed to contribute to their subsequent avoidance of physical activity and early onset of functional decline.

Amy and Ben had negative experiences with physical activity as children (similar to Judy and Alana), but were involved in, and valued, physical activity as adults. Physical activity was a means of displaying competence, delaying further functional loss, and becoming socially connected.

David and Tim lost the ability to walk in early adolescence. The minimal physical activity in which they engaged during their adult lives was directed towards trying to walk again. Walking seemed to be intimately connected with psychosocial growth. David’s weight-training programme seemed to provide him with another avenue for self-improvement towards his goal of attracting a life partner. Tim’s warm-water aerobic programme provided him with an opportunity to develop competence at swimming and at walking, and to enhance his self-esteem for these activities.

Involvement in physical activity may be important for people with cerebral palsy in their endeavours to successfully face the various psychosocial challenges throughout life. Implications of this research include: parents and teachers of children with cerebral palsy should provide support for their involvement in physical activity; physiotherapists should try to reduce the pain and increase the perceived relevancy of the treatments they deliver to young people with cerebral palsy; and psychologists should be aware of some of the difficulties people with cerebral palsy face and how they may manifest in adults with the condition.