Development and Validation of a Parenting Stress Module for Parents of Children Using Cochlear Implants.

OBJECTIVES: The purpose of this study was to develop and validate a cochlear implant (CI)-specific parenting stress measure using the FDA Guidance on Patient-Reported Outcomes (2009). METHODS: The development and psychometric validation of the Parenting Stress-CI module for both the Early Childhood (EC; 0-5 years) and School-Age (SA; 6-12 years) versions are reported in this article. Instrument development consisted of qualitative interviews with parents of children with CIs (EC: N = 19; SA: N = 21), content analysis, item development, and cognitive testing of the instrument. Last, we conducted the psychometric validation (EC: N = 72; SA: N = 64), including analyses of internal consistency, test-retest reliability (∼2 weeks between administrations; N = 24), and convergent validity with the Parenting Stress Index-4 (PSI-4). RESULTS: The final EC version includes 15 questions, and the SA version includes 8 questions. Both the EC and SA versions had strong reliability (EC α = .88; SA α = .85), with all items significantly correlated with the overall module (r = .43-.80). Both versions also had strong test-retest reliability (r = .99, p < .001). Last, analyses of convergent validity demonstrated significant correlations with the PSI-4 Total Stress scale for both Parenting Stress-CI versions (EC r = .66, p < .00; SA r = .45, p < .001). CONCLUSIONS: The Parenting Stress-CI modules are reliable and valid condition-specific parenting stress instruments for parents of children with CIs ages 0-12 years, filling a significant gap in the literature. These fully validated instruments can be used to assess parental needs for support and guide the development of targeted, family centered interventions.

Fathers of Children With Congenital Heart Disease: Sources of Stress and Opportunities for Intervention.

OBJECTIVES: To examine sources of stress for fathers of children with congenital heart disease and opportunities for intervention to prevent or reduce paternal mental health problems. DESIGN: Qualitative study using online crowdsourcing, an innovative research methodology to create an online community to serve as a research sample. SETTING: Yammer, an online social networking site. SUBJECTS: Geographically diverse sample of 70 parents (25 fathers and 45 mothers) of young children with congenital heart disease. INTERVENTIONS: Participants joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process, and themes regarding sources of stress for fathers of children with congenital heart disease and opportunities for intervention were identified. MEASUREMENTS AND MAIN RESULTS: Four broad themes regarding sources of stress for fathers of children with congenital heart disease emerged from the qualitative data from both mothers and fathers: societal expectations for fatherhood and standards of masculinity, balancing work and family responsibilities, feeling overlooked as a partner in care, and lack of father supports. To begin to address these sources of stress, participants recommended that care teams acknowledge and normalize the impact of congenital heart disease on fathers, provide support for balancing work and family responsibilities, recognize and promote father knowledge and engagement, and provide formal and informal supports for fathers of children with congential heart disease. CONCLUSIONS: Fathers of children with congenital heart disease experience unique sources of stress in the absence of targeted interventions to meet their needs. Care teams play an important role in acknowledging the experiences of fathers and including and engaging fathers in care.

Health-Related Quality of Life Instruments for Children With Cochlear Implants: Development of Child and Parent-Proxy Measures.

OBJECTIVES: Severe to profound hearing loss is associated with worse health-related quality of life (HRQoL), reflecting the wide-ranging effects of deafness on spoken language, cognition, and social/behavioral development. However, there are currently no cochlear implant (CI)-specific HRQoL measures that were developed using the Food and Drug Administration Guidance on patient-reported outcomes. This study developed the first HRQoL instruments (CI-QoL) for children with CIs, ages 6 to 12, and a parent-proxy measure for this age group. DESIGN: Two phases of instrument development were conducted. Phase 1 consisted of a literature review yielding a conceptual framework and discussion guides to elicit information from stakeholder focus groups at CI clinics in Miami and Philadelphia (n = 30; e.g., physicians, speech pathologists). During phase 2, open-ended interviews were conducted with 21 parent-child dyads (M child age = 9.1 years) recruited from these two clinics. Interviews were transcribed, followed by content analysis in NVivo to identify the most frequent and difficult themes. Items were then derived from these themes to form the initial draft instruments. A multimodal approach was used to create the child-report version (i.e., pictorial representations, audio recording of items, written text above the drawings) to maximize comprehension and ease of responding. Both measures were developed to be administered electronically on a tablet device. In phase 3, a new set of parent-child dyads (n = 20; child age M = 9.2 years) completed a cognitive testing protocol to ensure clarity, ease of use, and comprehensiveness. Cognitive testing led to revisions and finalization of the instruments. RESULTS: The final self-report measure contained 33 items across eight domains: Noisy Environments, Academic Functioning, Child Acceptance, Oral Communication, Social Functioning, Fatigue, Emotional Functioning, and Device Management. The final parent-proxy measure included 42 items on nine scales: the same eight scales that appear on the child version, with the addition of Behavior Problems. Correlations between child and parent reports on each scale ranged from r = 0.08 to 0.48. CONCLUSIONS: CI-specific HRQoL instruments have now been developed for school-age children with CIs, with an accompanying parent-proxy version. After a psychometric validation, these CI-specific measures will enable us to track long-term outcomes, evaluate the efficacy of interventions to improve CI use (e.g., single versus bilateral implantation, AV therapy, maternal sensitivity training), and provide a profile of the "whole child's" functioning to facilitate care.

Comparisons of social competence in young children with and without hearing loss: a dynamic systems framework.

This study compared levels of social competence and language development in 74 young children with hearing loss and 38 hearing peers aged 2.5-5.3 years. This study was the first to examine the relationship between oral language and social competence using a dynamic systems framework in children with and without hearing loss. We hypothesized that, due to deficits in oral language, children who were deaf would display lower levels of social competence than their hearing peers. Furthermore, language age would predict social competence scores. Social competence was measured with a general and deaf-specific measure. Results showed that children with hearing loss performed significantly worse than hearing peers on the general measure but better than the norms on the deaf-specific measure. Controlling for maternal education and income, regression analyses indicated that hearing status and language age predicted social competence in both groups. Among children with hearing loss, correlations were also found between age at diagnosis, age at amplification, and two of the general social competence measures. Results supported our hypothesis that deficits in language would have cascading negative effects on the development of social competence in young deaf children. Development of early intervention programs that target both language and social skills are needed for this population.

Comparisons of Longitudinal Trajectories of Social Competence: Parent Ratings of Children With Cochlear Implants Versus Hearing Peers.

OBJECTIVE: To evaluate the longitudinal effects of cochlear implantation (CIs) on young, deaf children's social competence over 5 years of implant use and compare their social skills to those of same-aged, hearing peers. STUDY DESIGN: Prospective, longitudinal between- and within-subjects design, with assessments completed 3 times over 5 years. SETTING: This study was conducted at 6 cochlear implant centers and two preschools that enrolled both CI and hearing children. PATIENTS: Parents of 132 children with CIs and 67 age-matched hearing controls completed the study measures. Children were between 5 and 9 years of age at the first time point. INTERVENTIONS: Cochlear implantation and speech-language therapy. MAIN OUTCOME MEASURES: Three subscales were drawn from 2 standardized measures of behavioral and social functioning, the Behavioral Assessment Scale for Children (Adaptability, Social Skills) and the Social Skills Rating System (Social Skills). A latent social competence variable was created using multiple subscales, which was modeled over time. RESULTS: Parent data indicated that children with CIs were delayed in comparison to their hearing peers on the social competence latent variable across all time points. Further, there was minimal evidence of "catch-up" growth over this 5-year period. CONCLUSION: Children with CIs continued to experience delays in social competence after several years of implant use. Despite documented gains in oral language, deficits in social competence remained. To date, no interventions for children with CIs have targeted these social and behavioral skills. Thus, interventions that address the functioning of the "whole child" following cochlear implantation are needed.

Outcomes and benefits of pediatric cochlear implantation in children with additional disabilities: a review and report of family influences on outcomes.

The number of children with hearing loss with additional disabilities receiving cochlear implantation has increased dramatically over the past decade. However, little is known about their auditory and speech and language development following implantation. The purpose of this review is to evaluate the effects of cochlear implantation on the most common genetic and developmental disorders in children with hearing loss. Benefits of cochlear implantation for children with autism spectrum disorder, developmental delay, CHARGE syndrome, cerebral palsy, learning disorders, Usher syndrome, Waardenburg syndrome, and attention deficit/hyperactivity disorder are reviewed. Our review indicates that children with hearing loss and additional disabilities benefit from cochlear implantation, especially when implanted early. Thus, early interventions seem as important for these children as for deaf children without additional disabilities. Comparisons of outcomes across these disabilities indicate that children with little to no cognitive impairment (eg, Waardenburg sydrome, attention deficit hyperactivity disorder) have better outcomes than those with greater deficits in intellectual functioning (eg, autism, CHARGE syndrome). In addition, parents of children with hearing loss and additional disabilities report higher levels of parenting stress and greater child behavior problems than those without comorbid diagnoses. However, these parents are as sensitive when interacting with their children as parents with typically developing children using cochlear implantation. Given these results, it is critical to evaluate these children's developmental milestones to provide early implantation and intervention, appropriately counsel families regarding realistic expectations for the implant, and facilitate family adaptation.