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

Effects of Family Variables on Spoken Language in Children with Cochlear Implants

This chapter reviews the effects of family variables on spoken language in the largest, longitudinal multisite study of the effects of cochlear implants on young deaf children’s development. Data published to date on 188 deaf and 97 hearing children indicate that parents report high levels of context-specific parenting stress and less sensitivity during parent–child interactions and use fewer higher-level language techniques. Children’s language was related to higher rates of behavior problems, which were associated with higher parenting stress. After implantation, children made impressive gains in spoken language, and these were directly related to maternal sensitivity and use of facilitative language techniques. Our results indicated that cochlear implantation should be accompanied by parenting interventions that increase sensitivity and use of higher-level language strategies and foster a stronger parent–child relationship

PEARLS: AN INTERVENTION TO IMPROVE PARENT-CHILD INTERACTIONS AND COMMUNICATION

Parents play a critical role in the overall development of infants and toddlers with hearing loss. Specifically, the quality of parent-child interactions, including maternal sensitivity (MS) and facilitative language techniques (FLTs), have been shown to positively affect children's spoken language. This article will report on a parent-focused intervention to improve parental sensitivity and communication (Parent-Child Early Approaches to Raising Language Skills - PEARLS). The effectiveness and feasibility of this intervention will also be discussed

The impact of COVID-19 on allied health professions.

The purpose of the current study was to examine the impact of Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2 or COVID-19) on allied health professionals work environment, access to personal protective equipment (PPE) and COVID-19 testing, and mental health. A 34-question survey was developed and distributed electronically to allied health professionals through listservs of professional organizations and social media groups. A total of 921 responses from allied health professionals in a variety of work settings were analyzed. The majority of allied health professionals had access to medical-grade PPE and agreed with their clinics decisions to stay open or closed. Private practices appeared to be the most negatively impacted with regards to employment in the form of pay reductions, furloughs, lay-offs, or the requirement of using paid time off. Importantly, 86% of all respondents, irrespective of employment status, reported feeling stressed with regards to changes in their work environment and transmission of the virus. However, levels of stress were dependent upon access to PPE and mental health resources. Specifically, those with access to mental health support reported lower stress levels than those without such access. These results highlight the need for continuous monitoring of mental health for allied health professionals in order to inform clinic and hospital policies for PPE and the development of brief interventions to mitigate adverse long-term mental health outcomes

Advances in the Measurement and Utilization of Health-Related Quality of Life Instruments

Adolescents with chronic illnesses have unique and important perspectives on how their illness affects their daily lives. As adolescents are transitioning toward more independent care, measuring their symptoms and the effects of the disease on their daily functioning should be utilized to optimize quality of care. Patient-reported outcomes (PROs), such as health-related quality of life (HRQOL) measures, provide a meaningful tool for obtaining this information. This chapter emphasizes the benefits of utilizing PROs, particularly HRQOL measures, in a clinic setting. Further, we review current trends in PRO development, such as electronic patient-reported outcomes (ePROs). Finally, we address the recent movement toward family-centered care for patients with chronic conditions. Collaborative care is a paradigm in which the patient and physician make critical health care decisions together, which is particularly important for adolescents aiming toward greater independence and autonomy. It is recommended that psychologists, who have a strong background in psychometrics and instrument development, contribute to the development of new PROs and facilitate integration of these measures into clinical trials and family-centered care

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

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. 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. 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. 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