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Author: Publisher: ISBN: Category : Languages : en Pages : 172
Book Description
The purpose of this study was to identify the challenges or barriers that are present in the collaboration between educators and parents of students with special needs. After completing a project and a questionnaire, the researcher interviewed both parents and teachers of students with Cystic Fibrosis (CF). The researcher was looking for the perceptions of both the parents and the teachers of the same student and if there was any variance in those perceptions. The researcher was also looking for areas in collaboration that had barriers or challenges. Findings of the case study were particular to a group of parents from a social media support group on Facebook called "CF Mamas," who had children that had the genetic disease Cystic Fibrosis and that same child's teacher; this group may serve as a model or provide insights for other CF parents and their teachers. The researcher focused on four specific sub-questions to assess the barriers or challenges in collaboration between parents of children with CF and their teachers. What were the parents of CF students perceived issues in the collaborative process in schools; what did teachers perceive were the problems in the collaborative process between schools and parents of students with CF; what did parents believe schools could do better in the collaborative process; and what did teachers believe parents could do better in the collaborative process. The data collected by the researcher pointed to a conclusion that collaboration between the parents and teachers of the student with CF is a perceived necessary aspect of the partnership in the education of a child with Cystic Fibrosis from the perspective of the parents. Key findings from the research indicated that the child's needs specific to his or her disease were being met at school; that the teachers believed they understood the child's disease with more confidence than that of the parents being surveyed; that both the parents and teachers surveyed perceived that the agreed upon accommodations were being met at school; bot the parents and the teachers agreed that the child with CF could access his or her medication when needed and in a timely manner at school; the majority of the parents and teachers believed their role in the collaborative process was clearly defined; parents and teachers both responded in a timely manner to each other's communications; the results from the parent responses about proactive communication indicated that it was their expectation that proactive communication fell on the role of the teacher; and that both parents and teachers provided convenient times to meet when needed. The researcher asserted that collaboration was successful and perceived from the perspective of the teachers while the parents did not experience the same collaboration to the same positive degree, or have yet to have this experience. The majority of responses from both surveys were that the teachers (100%) and parents (95.2%) believed they were in a partnership when it came to the child's educational and medical accommodations in the classroom. The researcher maintains that collaboration is not only vital in the education of a child with special needs, specifically CF, but in this case of the sample population, the collaboration was perceived to be occurring. Key words: Cystic Fibrosis, collaboration, special education, special needs, parent, teacher
Author: David M. Orenstein Publisher: Lippincott Williams & Wilkins ISBN: 1451154380 Category : Medical Languages : en Pages : 788
Book Description
This one-of-a-kind guide offers easy-to-understand explanations, advice, and management options for patients or parents of patients with cystic fibrosis. The book explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. As one reviewer said, this book “is the only complete answer book for everyone living with the disease. It is an indispensable resource for families of children with CF, adolescent and adult patients, and physicians, nurses, respiratory therapists, and social workers involved in the care of CF patients.”
Author: Kristen M. Carson Publisher: ISBN: 9781339068862 Category : Languages : en Pages : 176
Book Description
Cystic Fibrosis (CF) is one of the most common, life-threatening genetic disorders impacting children (Cystic Fibrosis Foundation, n.d.) and, although rare, has a broad impact on children's health, educational, and social-emotional functioning. Current interventions for children with CF lack comprehensiveness, do not occur in the school setting, and fail to employ systems collaboration. Further, interventions have taken a more reactive rather than proactive approach to meeting children's needs. This investigation addressed current gaps in the literature by identifying children's health, educational, and social-emotional needs and potential intervention strategies to be employed as children with CF first enter elementary school. The study utilized participatory action research methods (e.g., focus groups, individual interviews, advisory panel) to gain information from parents and caregivers of children with CF (n = 11), school personnel (n = 15), and CF health care professionals (n = 14) and to collaboratively identify intervention strategies perceived to be beneficial, acceptable, and feasible for implementation. Results indicated primary areas for intervention to include nutrition (e.g., malabsorption), health-related treatments (e.g., medications), educational difficulties (e.g., falling behind), disclosure, social support, and mental health (e.g., anxiety, depression). Comprehensive strategies (e.g., formalized plans, use of technology, multisystemic collaboration) to address primary concerns are discussed. It will be important for schools, families, and health care professionals to collaboratively plan to meet the comprehensive needs of children with CF in schools by increasing communication and education across systems.
Author: Gathercole Publisher: ISBN: 9781473977761 Category : Cystic fibrosis Languages : en Pages :
Book Description
This case study reflects on cross-disciplinary, health, and education PhD research that explored the educational experiences of children and young people with the medical condition cystic fibrosis. Children with medical conditions may experience particular difficulties in education, potentially making them vulnerable at school. During the case study, I discuss how I involved children with cystic fibrosis in the research. As a researcher who also has cystic fibrosis, I knew I would be unable to physically meet with children face-to-face due to the risk of cross-infection. This issue greatly influenced the methodological decisions taken throughout the study and ultimately led me to develop an innovate approach that would allow me to gain childrens perspectives. While the study essentially employed a mixed-methods approach, particular attention is paid to the use of online interviews, a method less frequently considered for research with children. The online interviews eliminated the risk of cross-infection, yet they were not without challenges. This case highlights some of the practical and methodological problems that were encountered through seeking the perspectives of children with cystic fibrosis in the research.