Health-related quality of life among mothers of children with cochlear implants with and without developmental disabilities.

BACKGROUND: Cochlear implants (CIs) are widely used among children with severe to profound hearing loss. Raising a child with a CI presents unique challenges to the family, especially when the child has a developmental disability (CI-DD). AIMS: This study aimed to elucidate the relations between the functioning of children with CIs, their mothers' coping resources (i.e., social support and family-centered care), and maternal health-related quality of life (HRQoL). Also, it examined whether the presence of a DD in addition to the child's deafness moderated these relations. METHODS AND PROCEDURES: A sample of 100 mothers of children with CIs (54 in the CI-DD group) completed questionnaires regarding perceived social support, family-centered care, and HRQoL. OUTCOMES AND RESULTS: Mothers of deaf children with CIs and DD experienced lower levels of family functioning and HRQoL across all dimensions compared to mothers of deaf children with CIs without DD. In addition, social support was positively related to HRQoL only among mothers of children in the CI-DD group, indicating the protective role of social support. CONCLUSIONS AND IMPLICATIONS: Social support is an important coping resource, and psychosocial support is needed for mothers of children with CIs, especially for mothers whose children also have a DD.

The Transition to School Among Deaf/Hard-of-Hearing Children: Teacher and Parent Perspectives.

Although entry into the school system is a major milestone in the lives of young d/Deaf or hard-of-hearing (DHH) children and their families, relatively little is known about parents' and teachers' experiences and perspectives of this important transition. The aims of this study were to describe parents' concerns during their children's transition from early intervention to school, to describe practices available for families of DHH children, and to explore parents' and teachers' perspectives regarding practices that support a smooth transition to school. Parents (N = 40) and teachers (N = 37) of the deaf and hard of hearing completed surveys examining their experiences and perspectives on DHH children's transition to school. Among concerns expressed among parents was their child's ability to participate successfully in an inclusive school setting, as well as the level of supports their child would receive. Teachers reported numerous policies and practices that supported the transition to school, emphasizing high-intensity practices often used to gather information about the child and set accommodations in place. Parent and teacher reports on facilitators for the transition are compared and contrasted. Recommendations for research and practice are provided.

Complexity: An interpretative phenomenological analysis of the experiences of mothers of deaf children with cochlear implants and autism.

The purpose of this study was to explore the experiences of parenting a child with a dual diagnosis of childhood deafness and autism spectrum disorder who underwent cochlear implantation. Experiences of these parents are rarely discussed within the literature. Interpretive Phenomenological Analysis was used to examine nine mothers of boys (4-9 years old) for understanding their parenting experiences. Three superordinate themes were identified: complexity, personal and family sacrifices and parent-professional partnerships. These themes provide a rich account of mothers' interpretations of their experiences, and reflect the numerous challenges they face. This study helps expand the literature on cochlear implantation for children with autism spectrum disorder, and discusses implications for clinical and educational practice.

The transition to adulthood of young adults with IDD: Parents' joint projects.

INTRODUCTION: Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. METHODS: Using the qualitative action-project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. FINDINGS: Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day-to-day while planning for the future. CONCLUSIONS: Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.

Health-Related Quality of Life Among Young Children With Cochlear Implants and Developmental Disabilities.

OBJECTIVE: The present study examined differences in health-related quality of life (HRQoL) between deaf children with cochlear implants (CI) with and without developmental disabilities (DD) and differences across HRQoL domains within both groups of children. METHODS: Ninety-two parents of children with CI aged 3-7 years participated in this cross-sectional study. Of these children, 43 had DD (i.e., CI-DD group) and 49 had no DD or chronic illness, demonstrating overall typical development (i.e., CI-TD group). Parents of children in both groups completed the KINDL, a generic HRQoL questionnaire. Parents also provided anecdotal comments to open-ended questions, and parent comments were evaluated on a CI benefits scale to assess parent-perceived benefits of CI for the deaf children with and without disabilities. RESULTS: Children in the CI-DD group had significantly lower HRQoL compared to children in the CI-TD group, including lower scores on the self-esteem, friend, school, and family HRQoL subscales. No significant differences among groups were found on the physical well-being and emotional well-being subscales. For the CI-TD group, age at implantation correlated negatively with self-esteem and school HRQoL subscales. In the CI-DD group, children's current age correlated negatively with family and with the total HRQoL scores. Parent anecdotal comments and scores on the CI-benefits scale indicated strong parent perceptions of benefits of implantation for children in both groups. CONCLUSION: Based on parents' proxy report, findings suggest that having DD affects multiple domains of HRQoL among young children with CIs above and beyond that of the CI itself. Parents of deaf children with DD may need greater support through the CI process and follow-up than parents of deaf children without DD.

The Transition From Early Intervention to School for Children Who Are Deaf or Hard of Hearing: Administrator Perspectives.

Although the transition from early intervention (EI) to school is a significant milestone in the lives of young children, little research to date has investigated this transition among children who are deaf or hard of hearing (D/HH). The aims of this study were to investigate the organizational policies, procedures, and guidelines that facilitate or hinder the transition from the EI system to the school system for children who are D/HH from the perspective of program administrators. Using the Enhanced Critical Incident Technique methodology, 146 incidents were extracted from 10 interviews and sorted into 10 helping, 9 hindering, and 5 wish list categories. Findings are consistent with the Ecological and Dynamic Model of Transition (Rimm-Kaufman & Pianta, 2000), which conceptualizes the transition to school as being influenced by the pattern of interactions between the individuals, groups, and institutions connected to the child.

Cochlear implantation among deaf children with additional disabilities: parental perceptions of benefits, challenges, and service provision.

Although increasing numbers of children with additional disabilities are receiving cochlear implants (CIs), little is known about family perspectives of the benefits and the challenges of cochlear implantation in this pediatric population. This study examines perceptions among parents of deaf children with additional disabilities regarding satisfaction with service provision, benefits, and challenges of the CI process. This was a mixed-methods study, which included a survey and interviews. Twenty-three families of deaf children with additional disabilities participated in this study, and 17 of these parents participated in in-depth interviews regarding their child's experience with the CI, including benefits and challenges. Interviews were analyzed through inductive thematic analysis. Parent-perceived benefits of cochlear implantation included children's improved sound awareness, communication skills, and greater well-being compared to preimplantation status. However, the majority of families felt that they and their children were not receiving enough services. Major challenges included managing funding; coping with limited availability of specialized services, particularly in rural areas; and continuing concerns about the child's communication, social skills, and academic performance. Results suggest that children with additional disabilities benefit from CIs, but they and their families also face unique challenges that professionals should consider when working with these families.