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.

Special services guide for persons with disabilities and parents of children with special needs.

Title from cover.

An analysis of Haitian parents' perceptions of their children with disabilities

Parental involvement is an integral part of the educational system in the U.S. Yet, parents from non-mainstream racial/ethnic backgrounds have not fully grasped the nature of parental involvement expectations in the educational process and how these expectations may impact student achievement. The purpose of this study was to identify Haitian parents’ perceptions of their children with disabilities and the education these children were receiving. Several authors have conducted studies on parents of children with disabilities to better gain an understanding of the level of their involvement with their children’s education, their perceptions of the children, and their views on the school system (Harry, 1992a, 1992b). In this study, Haitian parents of children with disabilities were interviewed using an interview protocol. Through these interviews, this study explored 10 Haitian parents’ perceptions of their child with a disability, the education the child was receiving, their interaction with the school system, and how the disability had affected their relationship with their child and their involvement with the school. Findings of the present study revealed that these Haitian parents seldom disagreed with school personnel and did not seem to fully grasp the different methods available to address their concerns as parents of children with disabilities nor the role they were expected to play in the process. The majority did not have basic literacy skills in Creole or English. The parents in this study were overwhelmed by school written communication. Additionally, this study discovered that parents’ perceptions were guided by two core concepts: coping mechanisms and locus of control. Parents with an internal locus of control, who tended to be more educated, focused inward to find solutions to problems encountered. Those with an external locus of control relied on outside influences to resolve their problems. Parental involvement was strongly influenced by their values, beliefs, customs, and conceptual knowledge about disability; all closely aligned with culture and acculturation. Overall, these parents’ perceptions greatly influenced their thoughts and behaviors when they realized that their children with disabilities might fall short of their immigrant dreams of success they held for these children.

An Analysis of Haitian Parents' Perceptions of Their Children With Disabilities

Parental involvement is an integral part of the educational system in the U.S. Yet, parents from non-mainstream racial/ethnic backgrounds have not fully grasped the nature of parental involvement expectations in the educational process and how these expectations may impact student achievement. The purpose of this study was to identify Haitian parents’ perceptions of their children with disabilities and the education these children were receiving. Several authors have conducted studies on parents of children with disabilities to better gain an understanding of the level of their involvement with their children’s education, their perceptions of the children, and their views on the school system (Harry, 1992a, 1992b). In this study, Haitian parents of children with disabilities were interviewed using an interview protocol. Through these interviews, this study explored 10 Haitian parents’ perceptions of their child with a disability, the education the child was receiving, their interaction with the school system, and how the disability had affected their relationship with their child and their involvement with the school. Findings of the present study revealed that these Haitian parents seldom disagreed with school personnel and did not seem to fully grasp the different methods available to address their concerns as parents of children with disabilities nor the role they were expected to play in the process. The majority did not have basic literacy skills in Creole or English. The parents in this study were overwhelmed by school written communication. Additionally, this study discovered that parents’ perceptions were guided by two core concepts: coping mechanisms and locus of control. Parents with an internal locus of control, who tended to be more educated, focused inward to find solutions to problems encountered. Those with an external locus of control relied on outside influences to resolve their problems. Parental involvement was strongly influenced by their values, beliefs, customs, and conceptual knowledge about disability; all closely aligned with culture and acculturation. Overall, these parents’ perceptions greatly influenced their thoughts and behaviors when they realized that their children with disabilities might fall short of their immigrant dreams of success they held for these children.

Supporting the Supporter: Social Support, Stress, and Well-being among Caregivers of Children with Severe Disabilities

Thesis (Ph.D.)--University of Washington, 2014

Parent to parent : a guide for parents of children with special needs.

Description based on: 1989.

A qualitative study of the impact of an educational intervention on older parents of adults with disabilities engaged in the phenomenon of future-care planning

This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves. ^

The vulnerability of children with disabilities to abuse: a literature review.

The Children (N.I.) Order 1995 provides a legal framework for the care and protection of al! children including those with disabilities. The Order sets out a number of key principles which apply to all children, including that the child's welfare is paramount, that children should be safe and be protected through effective interventions, and that children with disabilities are to be recognised as children first.

Lived experiences of children with disabilities in various movement programs

This research offered children with disabilities the opportunity to express their voices in the description of their movement experiences. Three children aged 10-13 shared their experiences in school physical education and adapted physical activity. Observations of participants using interactive media activities in an adapted physical activity program were used to supplement interviews. The aim of this research was to discover how future professionals are prepared to design and implement physical activity and physical education programs for children with disabilities. A document analysis of Ontario university course calendars in the fields of physical education and kinesiology, disability studies, and teacher education was utilized. Data from each data context underwent four levels of reduction: 1) content, 2) categorical, 3) thematic, and 4) indigenous typologies. Findings are presented at each level leading to the presentation of indigenous typologies. Typologies of Forbidden-ness and Dichotomous Thinking were identified in the research.

Perspectives of Parents of Children with Autism Spectrum Disorder on a Community-Based Parent Education Program

In 2012 a community-based agency that oversees Intensive Behaviour Intervention services for young children diagnosed with Autism Spectrum Disorder (ASD) began delivering newly developed curricula to parents of eligible children. The curricula’s intent was to inform parents about ASD and Applied Behaviour Analysis, to increase their awareness of available community resources, and assist them to be active and engaged in their child’s learning. This mixed-method study used a program-specific survey and focus groups to explore the perspectives parents had on their involvement in these education sessions. Through constant comparison analysis 4 major and 3 minor themes emerged. In general, parents acknowledged that this parent education program included relevant content and a favourable delivery format. The study summarized a number of well-articulated, practical suggestions parents provided. Implications for practice would be applicable to educators interested in providing quality group-based education to parents of young children with ASD.

Language laterality, handedness and empathy in a sample of parents of children with autism spectrum disorder

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Creating a parent workshop that encompasses and meets the educational desires for parents of children with hearing impairments being taught in an oral deaf education program

The purpose of this study was to create a parent workshop that was developed around the parents’ educational needs. The workshop demonstrated that the parents’ educational needs can be met through a workshop that is based on those needs and takes into consideration factors that will encourage parent involvement.

Faith and protection: the construction of hope by parents of children with leukemia and their oncologists

Background. Oncologists are criticized for fostering unrealistic hope in patients and families, but criticisms reflect a perspective that is oversimplified and “expert” guidance that is ambiguous or impractical. Our aim was to understand how pediatric oncologists manage parents' hope in practice and to evaluate how they address parents' needs. Methods. Participants were 53 parents and 12 oncologists whom they consulted across six U.K. centers. We audio recorded consultations approximately 1–2, 6, and 12 months after diagnosis. Parents were interviewed after each consultation to elicit their perspectives on the consultation and clinical relationship. Transcripts of consultations and interviews were analyzed qualitatively. Results. Parents needed hope in order to function effectively in the face of despair, and all wanted the oncologists to help them be hopeful. Most parents focused hope on the short term. They therefore needed oncologists to be authoritative in taking responsibility for the child's long-term survival while cushioning parents from information about longer-term uncertainties and being positive in providing information about short-term progress. A few parents who could not fully trust their oncologist were unable to hope. Conclusion. Oncologists' pivotal role in sustaining hope was one that parents gave them. Most parents' “faith” in the oncologist allowed them to set aside, rather than deny, their fears about survival while investing their hopes in short-term milestones. Oncologists' behavior generally matched parents' needs, contradicting common criticisms of oncologists. Nevertheless, oncologists need to identify and address the difficulty that some parents have in fully trusting the oncologist and, consequently, being hopeful.

The effect of targeting tolerance of children's negative emotions among anxious parents of children with anxiety disorders: a pilot randomised controlled trial

Following cognitive behavioural therapy for child anxiety a significant minority of children fail to lose their diagnosis status. One potential barrier is high parental anxiety. We designed a pilot RCT to test claims that parental intolerance of the child’s negative emotions may impact treatment outcomes. Parents of 60 children with an anxiety disorder, who were themselves highly anxious, received either brief parent-delivered treatment for child anxiety or the same treatment with strategies specifically targeting parental tolerance of their child’s negative emotions. Consistent with predictions, parental tolerance of the child’s negative emotions significantly improved from pre- to post-treatment. However, there was no evidence to inform the direction of this association as improvements were substantial in both groups. Moreover, while there were significant improvements in child anxiety in both conditions, there was little evidence that this was associated with the improvement in parental tolerance. Nevertheless, findings provide important clinical insight, including that parent-led treatments are appropriate even when the parent is highly anxious and that it may not be necessary to adjust interventions for many families.