Cochlear Implants for Children With Disabilities: Parent Perspectives & Satisfaction

1. #7003 Cochlear Implants for Children With Disabilities: Parent Perspectives & Satisfaction Anat Zaidman-Zait, Deirdre Curle, Janet Jamieson, Ruth Chia, & Fred Kozak Tel-Aviv University, The University of British Columbia, & B.C. Children’s Hospital Results Introduction Method • Increasing numbers of deaf children with developmental disabilities have been receiving cochlear implants (CIs) (Edwards, Frost, & Witham, 2006). • Relatively little research has examined the benefits and challenges of cochlear implantation for these children. • The majority of published research has focused on speech perception and speech intelligibility outcomes (e.g., Amirsalari et al., 2012). • Findings indicated that overall, deaf children with developmental disabilities demonstrated improved speech perception and speech intelligibility following cochlear implantation, although there was large variation in outcome. • Wiley, Jahnke, Meinzen-Derr and Choo (2005) conducted interviews with families of children. All of their respondents reported gains in their children’s communication skills following cochlear implantation. In regards to therapy accessibility, 50% reported no obstacles. • Only a few studies have examined parental satisfaction of outcomes following implantation (Berrettini, et al., 2008; Wiley et al., 2005). Findings indicated that overall, the majority of parents felt that their children demonstrated benefit from cochlear implantation. • Although these studies shed light on the outcomes of cochlear implantation for children with developmental disabilities, little is known about the decision-making process, outcome satisfaction, and satisfaction with services from the perspective of parents. • Participants • Twenty-three families from British Columbia, Canada. • Child age range: 4-16 years. • Disability categories represented in sample: autism, cerebral palsy, health impairment, cognitive delay, deaf-blindness, learning disability. Everyday Problems: Domain Descriptions and Examples, and Percentages of ParentsWho Identified at Least One Problem in the Domain (n = 23) Parent-rated Child Communication Skills Post-Implantation • Mean = 3.14; SD = .82; Range: 1--4 • The majority of participants reported • improved communication skills as an • outcome. • Most participants recommended cochlear implantation, with comments such as, “Go for it!” or “Do it ASAP”. • Others emphasized that it was the parents’ decision, e.g. “Do what you feel is right.” • There were references to the relatively low risk of the procedure, as well as an adjustment period, e.g. “It’s safe!” “Don’t give up.” • Procedure • Mixed methods approach: • Child and family background questionnaire. • collected information on the child’s age, birth order, community and nature of additional disabilities. • (2) Services Inventory (Summerset al., 2007) • Assessed parent satisfaction of services. • (3) Face-to-face or telephone interviews • Based on the Eco-cultural Family Interview Protocol (Weisner, Bernheimer, & Coots, 1997) • Explored parents’ experiences of the cochlear implant process; examined parent satisfaction with outcomes and services. Parent Advice to Other Parents Services System structure Family-Professional Partnership Availability/Accessibility • Each child received an average of 6.7 specialized services (Range = 1--13; SD = 2.4). • The services families reported needing the most were speech-language therapy, hearing or vision services, special equipment, physical or occupational therapy, and behavior support. Emotional support and resource provision from early intervention professionals. Contextual Influences: Limited availability of specialized services in rural or remote areas. Managing government-provided funding for medical supplies and services, and completing the required paperwork was challenging. Finding affordable extra-curricular or after-school programsthat accommodated children with developmental disabilities was difficult. Communication with school-based professionals with regards to the child’s skill development. Image source: utdallas.edu Coordination of services: Stress of scheduling and managing frequent appointments, and following recommendations from multiple professionals. Results  “I think that she was more of an emotional support for me than anything, like it was really nice to have that. And one thing, I always looked forward to Tracy [coming]. If I had any questions, or where do I go next, or – Tracy was always there.” Children implanted prior to diagnosis of additional disability: Wanted to give the child “every opportunity”. No benefit from hearing aids. Believed CI to be “the best option”. No other family member had hearing loss. Children implanted after diagnosis of additional disability: Believed CI to be “the best option.” No benefit from hearing aids. Wanted better quality of life for child. Findings indicated that parents’ decision to pursue implantation was not determined by prior knowledge of the child’s additional disability. Technical support for cochlear implants from the manufacturers or from the medical center was easy to access in both rural and urban areas. Creating a team/long list of professionals: Helpful when therapists or health care providers communicated and worked together to coordinate visits and therapies. Parent Reasons for Pursuing Cochlear Implantation  ”I think in the long term, I definitely have a say, because I get to help make that [IEP] plan. But then on a daily basis, and seeing it carried out – I’m very uninvolved. Or uninformed.” Purpose of Study “It would have been great to have more services for him. For speech and language or whatever else is necessary. But, it’s just not available, so, I don’t dwell on things that can’t change at the moment. And we just make it up at home. We just do what we have to do here and just help him as best we can.” The purpose of this mixed-method study was three-fold: To examine the process that parents undergo to make the decision for cochlear implantation. To examine perceived benefits and challenges for their child and family. To examine parental satisfaction with availability and provision of medical and educational services. “I used to cry at some of these meetings. We’d be in a meeting with 20 people, [who] would be there to represent every aspect of his care. And they would all be telling us things to do. And it was a lot of pressure when he first got his cochlear implant because, you know, on top of that, we had all the speech things to do with him, and that was just another thing to add on to everything else that we have to do.” Discussion • Our findings are consistent with previous findings on cochlear implantation of children with developmental disabilities (Berrettini et al., 2008; Filipo et al., 2004; Oghalai, 2012; Wiley et al., 2012). • Families of children with developmental disabilities face similar types of stressors as previously reported (Zaidman-Zait, 2008), but report more concerns with speech-language development. • Professionals need to communicate and coordinate with other service providers to avoid overwhelming families; this highlights the importance of a family-centered approach. • The primary reasons to pursue cochlear implantation were similar among parents, regardless of whether they knew of the additional disability at the time of surgery. “It’s really hard to get into the programs. First of all you have to find the programs, which aren’t easy. And then you have to weigh out the cost of the program, because some of them are quite expensive.” “We’ve sometimes felt it’s too much going on (laugh). But lately, I just find it’s the perfect amount, because at the family support meeting, we discussed who’s going to play the main roles in things. So, all the therapists kind of talked at that meeting to make sure that we’re not overbooking and stuff. So that’s why we started doubling up on appointments. They’ll call each other.” “She’s only really out [without the CI] for a day. And if I find out first thing in the morning, we usually have it by that evening. Like, it’s incredible, the service we get. It’s awesome. You know, they don’t want her to be without hearing.” Parent-perceived Benefits of Cochlear implantation • Enjoyment of music; awareness of environmental sounds • Increased safety • Improved communication skills • Increased social interaction Dr. Anat Zaidman-Zait is employed by Tel-Aviv University. Disclosure: Dr. Zaidman-Zait has no relevant financial or nonfinancial relationships to disclose. Deirdre Curle is a Ph.D. candidate at The University of British Columbia. Disclosure: Ms. Curle has no relevant financial or nonfinancial relationships to disclose. Dr. Janet Jamieson is employed by The University of British Columbia. Disclosure: Dr. Jamieson has no relevant financial or nonfinancial relationships to disclose. Ruth Chia is employed by B.C. Children’s Hospital. Disclosure: Ms. Chia has no relevant financial or nonfinancial relationships to disclose. Dr. Fred Kozak is employed by B.C. Children’s Hospital. Disclosure: Dr. Kozak attended a conference in 2010, expenses paid by Cochlear Corporation. Dr. Kozak has no relevant non-financial relationship to disclose. Relevant Financial and Non-financial Relationships Image source: scopeblog.stanford.edu