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35 Counseling and Collaboration with Parents of Children with Hearing Loss

Madell et al., Pediatric Audiology: Diagnosis, Technology, and Management, 3rd Ed. (ISBN 978-1-62623-401-7), copyright © 2019 Thieme Medical Publishers. All rights reserved. Usage subject to terms and conditions of license.

the diagnosis of hearing loss. Their adapted instrument, called the

Audiologic Counseling Evaluation (ACE), was ﬁrst evaluated for

content validity by experienced clinicians. A revised version was then assessed to determine internal consistency and inter-rater reliability.41 The ACE is available online (http://gozips.uakron. edu/~ke3/ACE.pdf) and is used by several university training programs in the United States. Although intended primarily for evaluating students, the ACE can also serve as a valuable summary and self-assessment tool for practicing clinicians.

35.8 Conclusion

Pediatric audiologists, especially those who work with newly

identiﬁed infants and young children and their families, are called

upon to serve as information providers and counselors. The role of informant often begins with an explanation of the diagnosis

and options for audiologic intervention with ampliﬁcation or

cochlear implantation. In these technical matters, families want

and need an audiologist who is conﬁdent and self-assured, and

who is willing and able to provide accurate but understandable

information regarding ﬁndings and recommendations. But it is

equally important for the audiologist to listen to families, their questions, their priorities, and their needs at each point in time. The audiologist must therefore serve as both counselor and

conﬁdant; roles that require, in addition to eective expressive communication, careful listening and reection.

From the Internet and other sources, families now have access to a tremendous amount of information about hearing loss. The pediatric audiologist can assist families by staying current with available resources, by identifying information that is accurate and up to date, and by making recommendations for how families can access and use available resources.

Connecting parents with other parents is especially important. Where family resources are unsatisfactory or insucient, audiologists can work with parents to establish better mechanisms for peer support and advocacy. They can empower families by promoting partnerships that encourage parents to assume responsibility for decisions that impact their children’s educational and audiologic management. A few parents will be interested in working to make improvements at a systems level, and some may

take on roles that inuence legislation or public policy. Others will

choose to remain focused on the needs of their child and family. For all families, the audiologist can provide consultation, informational resources, and referral to support and advocacy groups. By recognizing the dual role of information provider and counselor and the importance of working in collaboration with families, the

audiologist can facilitate the most important outcome: conﬁdent,

well-informed families capable of determining what is best for their child and comfortable knowing they will be supported and encouraged by their professional service providers.

Discussion Questions

1. What does it mean to be family centered? What if the parent’s

priorities or decisions dier from those of the audiologist?

2. Some families are slow to accept the diagnosis and reluctant to move forward with the audiologist’s recommendations. Although it is important to recognize that families need to move at their own pace, what factors might account for lack of acceptance and what might you do to help them?

References

[1] Luterman D. Counseling Parents of Hearing Impaired Children. Boston: Little,

Brown; 1979

[2] Luterman D. Counseling the Communicatively Disordered and Their Families.

Austin, TX: Pro Ed; 1991

[3] Luterman D. Counseling Persons with Communication Disorders and Their

Families. 5th ed. Austin, TX: Pro Ed; 2008

[4] Luterman D. Counseling Persons with Communication Disorders and Their

Families. 6th ed. Austin, TX: Pro Ed; 2017

[5] Clark J, English K. Counseling in audiologic practice. Boston, MA: Allyn and

Bacon; 2004

[6] Trivette CM, Dunst CJ, Boyd K, Hamby DW. Family-oriented program mod-

els, helpgiving practices, and parental control appraisals. Except Child

1995;62(3):237–248

[7] Bronfenbrenner U. Toward an experimental ecology of human development. Am

Psychol 1977;32(7):513–531

[8] Bailey DB, McWilliam RA, Darkes LA, et al. Family outcomes in early interven-

tion: a framework for program evaluation and ecacy research. Except Child 1998;64(3):313–328

[9] Trivette CM, Dunst CD, Hamby DW. Inuences of Family-Systems Intervention

Practices on Parent-Child Interactions and Child Development. Top Early Child Spec Educ 2010;30(1):3–19

[10] Crais ER, Roy VP, Free K. Parents’ and professionals’ perceptions of the implemen-

tation of family-centered practices in child assessments. Am J Speech Lang Pathol

2006;15(4):365–377

[11] Moeller MP. Early intervention and language development in children who are

deaf and hard of hearing. Pediatrics 2000; 106(3):e43

[12] Shepherd K, Kervick C, Morris D. The Art of Collaboration: Lessons from Families

of Children with Disabilities. Studies in Inclusive Education 32. Rotterdam, The

Netherlands: Sense Publications; 2017

[13] Roush J. Staying family centered. In: Kurtzer-White E, Luterman D, eds. Early

Childhood Deafness. Timonium, MD: York Press; 2001;49–62

[14] Simeonsson RJ, Huntington GS, Sturtz-McMillen J, et al. Services for young

children and families: evaluating intervention cycles. Infants Young Child

1996;9(2):31–42

[15] American Speech-Language-Hearing Association (ASHA). Guidelines for Audiol-

ogists Providing Informational and Adjustment Counseling to Families of Infants

and Young Children with Hearing Loss Birth to 5 Years of Age. Available from http://www.asha.org/policy/GL2008-00289/. 2008. Accessed January 11, 2018

[16] Buckman R. How to Break Bad News: a Guide for Health Care Professionals.

Baltimore, MD: Johns Hopkins University Press; 1992

[17] Tye-Murray N. Counseling for adults and children who have hearing loss. In:

Flasher L, Fogle P, eds. Counseling Skills for Speech-Language Pathologists and

Audiologists. Clifton Park, NY: Delmar; 2012:313–340

[18] Roush J. Implementing parent–infant services: advice from families. In: Seewald

RC, ed. A Sound Foundation through Early Ampliﬁcation: Proceedings of an International Conference. Stäfa, Switzerland: Phonak AG; 2000a:159–165

[19] Roush J. What happens after screening? Hear J 2000;53(11):56,58–60 [20] English K. Counseling Children with Hearing Impairment and Their Families.

Boston, MA: Allyn and Bacon; 2002

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[21] Harrison M, Roush J. Information for families with young deaf and hard-of-

hearing children: reports from parents and pediatric audiologists. In: Seewald

R, Gravel J, eds. A Sound Foundation through Early Ampliﬁcation: Proceedings of the Second International Conference. Bungay, Suolk, UK: Immediate Proceedings Ltd; 2001:233–251. https://www.phonakpro.com/content/dam/phonak/

b2b/

Events/conference_proceedings/2nd_pediatric_conference_2001/

2001proceedings_chapter20.pdf. Accessed January 11, 2018

[22] Luterman D. The denial mechanism. Ear Hear 1985;6(1):57–58 [23] Moses K. The impact of childhood disability: the parent’s struggle. https://www.

pepartnership.org/media/12761/Ken%20Moses%20Parent%20Struggle.pdf. [Reproduced from Ways Magazine, Spring 1987]. Accessed January 11, 2018

[24] Joint Committee on Infant Hearing Year (JCIH). Year 2007 Position Statement:

Principles and Guidelines for Early Hearing Detection and Intervention Programs. http://pediatrics.aappublications.org/content/pediatrics/120/4/898.full.pdf. Accessed January 11, 2018

[25] Sjoblad S, Harrison M, Roush J, McWilliam RA. Parents’ reactions and recommen-

dations after diagnosis and hearing aid ﬁtting. Am J Audiol 2001;10(1):24–31

[26] Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL. Language of early- and lat-

er-identiﬁed children with hearing loss. Pediatrics 1998;102(5):1161–1171

[27] Luterman D, Kurtzer-White E. Identifying hearing loss: parents’ needs. Am J

Audiol 1999;8(1):13–18

[28] Carney AE, Moeller MP. Treatment ecacy: hearing loss in children. J Speech Lang

Hear Res 1998;41(1):S61–S84

[29] Barrera I, Corso R. Cultural competency as skilled dialogue. Top Early Child Spec

Educ 2002;22(2):103–113

[30] Cole E, Flexer C. Children with Hearing Loss: Developing Listening and Talking,

Birth to Six. 3rd ed. San Diego, CA: Plural Publishing; 2016

[31] Alberg J, Wilson K, Roush J. Statewide collaboration in the delivery of EHDI

services. Volta Rev 2006;106(3):259–274

[32] English K, Walker E, Farah K, et al. Implementing family-centered care in early

intervention for children with hearing loss: Engaging parents with a question

prompt list (QPL). Hearing Review. 2017;24(11):12–18

[33] Gallaudet Research Institute. Regional and National Summary Report of Data

from the 2013–2014 Annual Survey of Deaf and Hard of Hearing Children and Youth. Washington, DC: GRI, Gallaudet University; 2014

[34] Roush J, Wilson K. Interdisciplinary assessment of children with hearing loss and

multiple disabilities. SIG 9 Perspect HearHear Disord Child 2013;23(1):13–26

[35] Wiley S, St. John R, Lindow-Davies C. Children who are deaf or hard of hearing

PLUS. In: Schmeltz LR, ed. The NCHAM eBook: A Resource Guide for Early

Hearing Detection & Intervention (EHDI). Logan, UT: National Center for Hearing

Assessment and Management; 2016 http://www.infanthearing.org/ehdiebook/2016_ebook/6%20Chapter6ChildrenPLUS2016.pdf. Accessed January 11, 2018

[36] Davidson R, Duerson M, Rathe R, Pauly R, Watson RT. Using standardized pa-

tients as teachers: a concurrent controlled trial. Acad Med 2001;76(8):840–843

[37] Rosenbaum ME, Ferguson KJ, Lobas JG. Teaching medical students and residents

skills for delivering bad news: a review of strategies. Acad Med 2004;79(2):107– 117

[38] Tharpe AM, Rokuson JM. Simulated patients enhance clinical education: Vander-

bilt oers unique program for audiology students. ASHA Lead 2010;15:5–6

[39] Flasher L, Fogle P, eds. Counseling Skills for Speech-Language Pathologists and

Audiologists [role plays at the end of each chapter]. Clifton Park, NY: Delmar; 2012

[40] Miller SJ, Hope T, Talbot DC. The development of a structured rating schedule

(the BAS) to assess skills in breaking bad news. Br J Cancer 1999;80(5–6):792–

800

[41] English K, Naeve-Velguth S, Rall E, Uyehara-Isono J, Pittman A. Development

of an instrument to evaluate audiologic counseling skills. J Am Acad Audiol

2007;18(8):675–687

372

36 Empowering Teens with Hearing Loss

Carrie L. Spangler and Gail M. Whitelaw

36 Empowering Teens with Hearing Loss

Summary

This chapter is focused on the unique needs of teenagers who have hearing loss. Adolescence and young adulthood are arg uably the periods of greatest change and transition in life. Hearing loss adds a dimension in this period of growth that must be addressed by audiologists in order to empower teens. The chapter outlines distinctive aspects of the general adolescent experience and

speciﬁc issues related to hearing loss in teenagers. Opportunities

and challenges in the mainstream setting are highlighted, and incorporating student needs into the Individualized Education

Program or 504 plan are described. Integrating aspects of

self-determination into audiologic management/treatment for a teen with hearing loss is also discussed. Transition planning is a focus of the chapter, and covers concepts from technology to social needs and demands. Addressing concerns regarding bullying is discussed, with peer advocacy described as a model for helping to prevent bullying. The importance of a supportive peer group for adolescents is noted as critical, and the chapter discusses a number of tools and approaches for building successful peer groups for teens with hearing loss. The development of a mind map by the teen in conjunction with the audiologist is also provided as a tool. Resources are provided that the audiologist can use to build a bond with teenagers with whom they work and to facilitate the transition to adulthood.

Keywords

bullying, self-determination (SD), mind map, peer group, adolescent/teen

Key Points

Adolescence is arguably the period of the most rapid growth

•

and change in an individual’s life. The teen with hearing loss is likely to experience many novel

•

and challenging situations, such as changing communication needs, an increase in sophistication of socioemotional demands, new employment requirements, and complex participation in sports and dating. Audiologists working with teens who have hearing loss can

•

integrate their important role of providing aural rehabilitation services with promoting self-determination for their teens with hearing loss.

Adolescents with hearing loss in the mainstream benet from

•

having strategic opportunities to participate in a facilitated peer network with others who have hearing loss.

36.1 The Adolescent Stage of Development

Audiologists and other professionals who work with teens need to understand the rapid maturation that occurs during adolescence. Erikson and the World Health Organization (WHO) both

deﬁne the period of adolescence as occurring between 10 and 19

years of age. During adolescence, teens advance their knowledge and skills, learn to manage emotions and relationships, and acquire attributes and abilities that will be important for assuming their adult roles.

Also known as “young adulthood transition,” adolescence is

a period of life with unique health and developmental needs.3 Adolescents with disabilities or chronic illness may be particularly vulnerable, causing them to have a greater need for a range of services and supports.4 Audiologists working with teens are

positioned to empower teens regarding the eects of hearing

loss on their communication and psychosocial status in personal, social, and vocational arenas.

This chapter explores normal adolescent development and the

role of the audiologist in empowering teens with hearing loss, and

it oers tools and supports for working with teens with hearing

loss in a partnership relationship.

Adolescence can be deﬁned in many ways. When age is con-

sidered as the criterion, adolescence encompasses ages 10 to 18

or 19 years. between childhood and adolescence is puberty, marking the start of physical and sexual maturation. Other aspects of the transition to adolescence are certainly more arbitrary, such as dress, manners, or social group.

Several frequently cited features of the transition from childhood to adolescence include (1) moving to social and economic independence, (2) developing identity, (3) acquiring skills needed

to participate in adult roles and relationships, and (4) developing

abstract reasoning. stages of psychosocial development.

Adolescence, as a life stage, may last longer than previously

described. This longer aspect is known as “emerging adulthood,”

and it ranges from late teens to early twenties.7 Features of emerging adulthood includes accepting adult roles and responsibilities, having realistic expectations for the future, and developing concrete plans for meeting goals. Ages and stages of development also

are inuenced by external factors, such as cultural issues, family

dynamics, living arrangements, hearing loss, and communication skills.

3,4,6

1,2

It is generally agreed that the biological threshold

3,4

These aspects are supported by Erikson’s6

36.2 Adolescents and Hearing Loss

It is important for the audiologist to consider adolescence as a developmental stage, one that follows infancy and young

373

IV Educational and Clinical Management of Hearing Loss in Children

childhood. Adolescence is arguable the period of the most rapid growth and change in an individual’s life.

Being neither child nor adult, the teenager with hearing loss presents with unique opportunities and challenges. The adolescent patient in the waiting room or the classroom may physically look like an adult but may behave more like a child. In addition,

the teen may have morphed into a person who is dierent from

the familiar and beloved child patient of past years. In many cases, the relationship between the adolescent and their parents or caregivers also has changed. Thus, the audiologist is left to consider how to address the new requests of the teen, while respecting the needs of the parents.

Although the audiologist has a signiﬁcant role in this important period of time in the life of a teen with hearing loss, there is little guidance provided for audiologists in working with this population. Much of the literature is focused on topics related to preventing hearing loss from noise exposure or on how to support the use of hearing aids. An audiologist may be comfortable working with young children and their families but may be at a loss in working with a teenager. The audiologist may even question whether treating the teenaged patient is within the scope of pediatric practice. The answer is yes. For example, the blueprint for the

content of the Pediatric Audiology Specialty Certiﬁcation (PASC)8

includes aspects of adolescent care, such as human development, counseling, and communication enhancement technology.

The teen with hearing loss is likely to experience many novel and challenging situations, such as changing communication needs, more sophisticated socioemotional demands, employment requirements, participation in sports, and dating. Despite the fact that adolescence is the life stage with the most rapid and major developmental changes, little is known about how these changes impact the quality of life of a teenager who is hard of hearing or

deaf.

36.3 The Challenge for the

Audiologist with a Teen Patient

The challenge for the audiologist working with a teen with hearing loss is to help identify barriers and facilitate problem solving.10 This role may require a departure from or expansion beyond traditional audiologic services such as validation and

veriﬁcation of hearing aid function. The audiologist’s expanded

role includes providing advocacy, assistive technology, and collaborative support for and with the teen.

The WHO states that health care providers working with teenagers have the responsibility of promoting adolescent development/adjustment and intervening when problems arise. Individuals with chronic health conditions such as hearing loss have been found to require a greater degree of support and focus on self-care compared to those without chronic health issues.

An audiologist may experience a disconnect with adolescent patients, believing he or she does not have the necessary or

sucient audiologic training to work with this population. In

turn, some adolescents report that their audiologist may need additional education, as they sometimes did not feel respected

by health care professionals, being either “lectured at” or “talked

down to.” When “lecturing” happens, the teen may seek other

sources, such as peers or social media, for help and support.

Just as audiologists may believe they are poorly prepared to work with teens, parents may feel they also are ill prepared to address the transition from childhood to adolescence when managing their teen’s hearing loss. Parenting a teen, in general, can be

a time of signiﬁcant change in the relationship. The audiologist

may become a sounding board for both the teen and the parent,

and relationships with both may be in ux. The parents may be in

as much of a transition in their relationship with the audiologist

as is the teen. Evidence suggests that adolescents beneﬁt from

having parents who accept the teen’s need for autonomy in working with health care professionals.

12,13

36.4 Supporting the Continuum

of Transitions for Teens with Hearing Loss

The teen transition is a change in status from behaving primarily as a student to assuming emergent adult roles in the community. These adult roles relate to employment, postsecondary education, home maintenance, and appropriate involvement in the community.

Changes happen throughout the school years, but the transitions to high school and then to postsecondary education provide

signiﬁcant opportunities and challenges for teenagers with

hearing loss. Audiologists can be a source of trusted information for their teen patients by supporting them with resources such as social media, blogs, apps, and technology connections.

As a group, teenagers may not automatically turn to a healthcare professional for information regarding health issues. The audiologist must assure the teen from the very beginning of adolescence that the teen is the center of his or her own hearing care decisions, including technology, Individualized Education Program (IEP) or

504 plan, and career/life goals. Audiologists, the school/health care

team, and parents can coach teens with hearing loss to be their own advocates by directing them to resources about choices in school, work, and lifestyle. Transitions should focus on the needs and wants of the adolescent and less on the needs and wants of the parent. These transitions may include decisions regarding use of technology, such as a frequency modulated (FM)/digitally modulated (DM) system; language issues, such as use of oral English or American Sign Language (ASL); and class placements.

The focus on transition to adult expectations for teens with hearing loss encompasses both health and educational advancements. Research has indicated that transition to independent health care management is complex and dynamic, and for many adolescents that transition process is a journey without a clear destination.16 Educationally, the Individuals with Disabilities Education Act

(IDEA) 200417 deﬁnes secondary transition as “a results oriented process.” That process is focused on improving the academic and

functional achievement of the student with a disability in order to facilitate the student’s movement from school to postschool activities including postsecondary and vocational education, integrated employment, continuing and adult education, adult services, independent living, and community participation.

374

36 Empowering Teens with Hearing Loss

Decisions regarding school and classroom placement involving children with hearing loss are made based on many factors, including least restrictive environment, and students can be successful across a continuum of school placements. Academic suc-

cess may belie the actual subtle but signiﬁcant diculties related to hearing loss for teens. These diculties may include deﬁcits

in executive functioning, working memory, listening stress, and listening fatigue related to classroom performance. loss in teens can negatively impact even foundational academic skills, such as written expression and phonological awareness.20 All of these issues related to hearing loss may have a negative synergy with typical transition issues to high school, which include increased generalized academic demands, increased requirements for reading and writing, larger class size, demands of being a second-language learner, more intensive vocabulary demands, and expectations for collaborative learning, which may include group work in challenging listening environments.

18,19

Hearing

36.4.1 Supporting Transition: Addressing

Concerns of Bullying

A teen with hearing loss faces unique challenges in keeping pace with his or her classmates. Children with disabilities, and especially those with communication challenges, experience maltreatment at a rate that is three to four times greater than that experienced by their nondisabled peers.21 One form of maltreatment is bullying.

Bullying is a learned, unacceptable, antisocial behavior that can encompass physical aggression, threats, teasing, and harassment.22 Although all parents may have concerns regarding their child being bullied, parents of children with disabilities, including those with hearing loss, may have increased reason for concern. Currently, a limited number of studies have been conducted on the connection between bullying and developmental disabilities. Prevalence rates of bullying among students with disabilities may be overrepresented due to issues of statistical measurement and

to the identiﬁcation of disability status. Regardless, all studies

suggest that children with disabilities are two to three times more likely to be bullied than peers who are not disabled and that all children with disabilities are highly vulnerable to bully victimization.23 The stakes are too high to ignore and not ask questions.

The community as a whole is responsible for dealing with bullying, not the child alone. According to the Centers for Disease Control and Prevention (CDC), students who are bullied are more likely to experience low self-esteem and isolation, perform poorly in school, have few friends in school, have a negative view of school, experience physical symptoms (such as headaches, stom-

achaches, or sleep diculties), and to experience mental health

issues (such as depression, suicidal thoughts, and anxiety).

Audiologists and other professionals working with teens who have hearing loss can help avert bullying by teaching about bullying, asking students directly whether they have experienced bullying, giving communication tools for what to do if bullied, and identifying how to take necessary steps to protect the student’s legal right not to be bullied. Resources are listed at the end of this chapter to help audiologists address this important topic.

Pearl

Students have a unique power to prevent bullying. More than half of bullying situations stop when a peer (bystander) intervenes on behalf of the student being bullied.

Peer advocacy—students speaking out on behalf of others—is a unique approach that empowers students to protect those targeted by bullying. Peer advocacy works for two reasons. First, students are more likely than adults to see what is happening with their peers. Second, a student telling another student to stop bullying has much more impact than an adult giving the same advice. More

than half (57%) of bullying situations stop when a peer (bystander)

intervenes on behalf of the student being bullied.

Health care policy agencies and numerous experts in hearing science have recommended teaching hearing loss prevention practices to children in school as a way of reducing the prevalence of noise-induced hearing loss (NIHL). important education about hearing loss prevention while sensitizing all students about bullying and hearing loss.

Audiologists can combine

36.4.2 Supporting Transition: Teens,

Hearing Technology, and Acceptance

It has been reported based on a small sample of teens, that fewer than half wore their hearing aids on a regular basis. When asked

what factors inuenced their decision, the teens noted that their

peers did not use hearing technology, and their devices made

them appear dierent from their peer group. experiencing a “hearing aid eect,” emphasizing that cosmetic

issues came into play. There also may be transition issues for the use, care, and maintenance of hearing aids because a parent or caregiver had often mediated attention to technology until that time.30 Teens may also reject the use of remote microphone technology based on issues such as esthetics, self-consciousness about having to trade the transmitter with the teacher, inconvenience of the device, and belief that they really can hear as well as their typically hearing peers.

The upside is that this generation of teens has had more exposure to technology than prior generations. Today’s teens can put assis-

tive technology to eective use to solve problems and to enhance

the quality of their lives, such as binaural hearing on a cell phone or being able to listen to music via Bluetooth. Coupling their person-

al-worn technologies to external devices may positively inuence

teens’ inclination to wear hearing aid/cochlear implant technology. Use of cosmetically functional equipment, such as the Roger Pen

wireless microphone transmitter (Phonak AG, Stäfa, Switzerland),

which is a convenient size and can improve listening in less than optimal environments, may enhance overall communication for the teen.31 An example of newer hearing aid technology is the Opn

(Oticon, Gothenburg, Sweden),32 which may also appeal to teens

because they can control it with a smartphone app. Using the IFTTT

25,26

28,29

Teens reported

375

IV Educational and Clinical Management of Hearing Loss in Children

platform,33 listeners can develop applets, or custom programs for the hearing aid, such as an external alarm to alert that a homework assignment is due. The audiologist can utilize such technological features to motivate the teen’s use of personal devices.

Pearl

Ida Institute (Nærum, Denmark) is one organization that provides free resources for audiologists that can assist in engaging the teen patient. Audiologists are encouraged to explore practical telecare tools that can motivate teens in the self-management of their hearing loss.34 These tools can be utilized by both the clinical and educational audiologist to encourage teens to organize their thoughts regarding the challenges and successes of managing their hearing loss. The materials will help audiologists learn about teens, address their real concerns, and promote supportive healthcare/educational partnerships resulting in support for technology, communication strategies, and successful transitions.

36.4.3 Supporting Transition: SelfEsteem and Hearing Loss

Addressing outcomes and needs in teens with hearing loss is complicated. Analyzing academic achievement, thought to be one of the hallmarks for children with hearing loss, provides only a limited view of success. Research consistently indicates

that children and adolescents with hearing loss “compete well”

in areas of academic achievement when compared to typically hearing peers.35 However, teens with hearing loss do dier from their typically hearing peers in areas of socioemotional development. Adolescents with hearing loss report being more self-conscious and having poorer social skills than their typically hearing peers.36 Those with hearing loss noted greater concerns regarding developing friendships, dating, and establishing their future place in the world than do teens with typical hearing.

By ninth grade, teens with hearing loss demonstrate greater

diculty accessing social support and experience increased stress

and poorer self-esteem than do their typically hearing peers.18 These issues are due to many factors, including poorer communication skills, physical appearance of technology, and social immaturity.35 From a WHO perspective, hearing loss in teens impacts

at least two signiﬁcant aspects of everyday life: communication

and social participation. Having a strong self-esteem is a critical component for lifelong participation by helping the teen gain self-advocacy skills and demonstrate leadership skills, resulting

in greater conﬁdence communicating in groups.

36.4.4 Supporting Transition: SelfAdvocacy and Determination

Beginning with the end in mind39 means to begin each day, task, or project with a clear vision of your desired direction and

outcome. Research in special education has shown the beneﬁts

of promoting Self Determination (SD) in achieving positive adult outcomes. live their lives as they choose, consistent with their own values, preferences, and abilities.40 Audiologists working with teens who have hearing loss can incorporate their important role of providing aural rehabilitation to promote SD for their teens with hearing loss. Model curricula have been developed to promote SD41; however, there is no known SD curriculum speciﬁc for students with hearing loss. The following units to teach SD have

been identiﬁed in the literature: self-awareness/self-knowledge,

choice/decision making, goal setting/attainment, problem solving, self-regulation/self-management, and self-advocacy. Several tools, described later in the chapter, have been developed that can help audiologists teach SD.

Audiologists can apply the previously listed teachable elements of SD to hearing loss and guide teens to navigate successfully through real-world experiences. For example, a teen with hearing

loss expressed diculty communicating in social situations. The

audiologist used this problem as a teachable element to improve the teen’s SD through a mind mapping activity. Developed by UK researcher Tony Buzan, a mind map42 is a visual representation of information centered around a main idea with supporting ideas and solutions branching away. This mind mapping technique is

beneﬁcial in creating a web of relationships that can be used in

problem solving. In the example shown in Fig. 36.1, the teen iden-

tiﬁed the primary category (red box) of diculty communicating in social situations. Once speciﬁc situations were identiﬁed (blue

boxes), the teen and audiologist designed speciﬁc strategies (green boxes) to address the problem.

In the area of self-advocacy, it is important to understand what skills are needed, what skills the teen has, and how to develop a plan for future teaching. The Audiology Self-Advocacy Checklist for Middle School (ASAC-MS) and the Audiology Self-Advocacy Checklist for High School (ASAC-HS)43 provide lists of speciﬁc skills students should develop to understand and manage their hearing loss. The Living Well Toolbox developed by the Ida Institute44 is another resource that can enable teens with hearing loss to identify communication situations that are important in their lives through the use of picture photos. After identifying the teen’s priorities, the audiologist can focus on promoting advocacy

for improved communication and SD. The “tools” section at the

end of this chapter provides additional resources available to help audiologists include SD teaching into their clinical/educational practices.

SD has been deﬁned as the ability of individuals to

36.5 Mainstream Teens with

Hearing Loss

An important aspect of adolescence is having a peer group. Teens with hearing loss report having little contact with other deaf or hard of hearing teens or young adults, even though these students, their parents, and their teachers believe this contact

would be beneﬁcial.45 Teens often report being the “one and only”

in their high school, not knowing anyone else with a hearing loss.

376

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36 Empowering Teens with Hearing Loss

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Fig. 36.1 An example of a mind map created by a teen with hearing loss who expressed diculty communicating in social situations. Abbreviations:

CI, cochlear implant; DM, digital modulation; FM, frequency modulation; HA, hearing aid.

Special Consideration

Over 80% of students with hearing loss are educated in the mainstream setting.46 The low incidence of hearing loss combined with the high percentage of students in the mainstream suggest that many adolescents with hearing loss do not know any other

students of their age who have “been there” and can oer peer

support.

Not having a peer group can inuence the decisions a teen with hearing loss may make. In general, peer support has been deﬁned by the fact that people who share “like experiences” can better relate and can consequently oer more authentic empathy and

validation to each other. It is also common for people with similar

lived experiences to oer each other practical advice and suggestions that professionals may not oer or even know about.

Adolescence is a time when teens are deciding “who they are”

and what they stand for. For teens with hearing loss, establishing identity can be a challenge that needs to be facilitated. One study revealed that adolescents with hearing loss viewed themselves as

dierent from their typically hearing peers.48 Students with hearing loss reported having a strong desire to ﬁt in; however, they had diculty understanding the social and communication rules

necessary for peer acceptance. It was found that closeness with peers who also had hearing loss balanced negative mainstream experiences and played an important role in the teen’s emotional well-being. Interactions with peers with hearing loss provided the

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

teen with opportunities for in-depth conversation, development of friendships, and a sense of belonging.

36.6 Support Groups for Teens with

Adolescents with hearing loss in the mainstream beneﬁt from

having strategic opportunities to participate in a facilitated peer network with others who have hearing loss. In addition to the

emotional beneﬁt of “in your shoes and been there” contacts,

the facilitated network presents an opportunity to promote SD through instructional activities designed to enable the use of SD skills.

Support groups may exist independently or as part of larger

organizations. They may operate informally or according to a

structured format or program. Groups can meet locally, such as

a community room, schools, libraries, audiology clinics, or other centers. There are known examples of face-to-face support groups and social media groups that are facilitated by audiologists and other professionals in both the school and hospital settings.

Social media, including Facebook, Twitter, and Instagram, can

oer peer-to-peer relationships and facilitate the development of online communities. Approximately 90% of high school students

access social media. Online communities have been developed to address a range of health-related conditions, including hearing loss. online support group perceived the reception of strong social support.

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

Hearing Loss

49,50

Young adults with hearing loss who participated in an



377

IV Educational and Clinical Management of Hearing Loss in Children

Anecdotal accounts by professionals, parents, and teens with hearing loss report positive outcomes of participating in support groups. One example of a nationally recognized support group/ camp is the Leadership Opportunities for Teens (LOFT) program,

established by the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) 1996. The LOFT program is

dedicated to shaping and transforming the lives of teens who are deaf or hard of hearing by teaching them valuable skills such as

self-advocacy, self-conﬁdence, leadership, and communication.

36.6.1 Hit It! Hearing Impaired Teens

Interacting Together

The authors of this chapter recognize the professional and per-

sonal beneﬁt of organizing opportunities for adolescents with

hearing loss to connect with peers and empower each other to successfully navigate their world. In 1999, one of the authors (CLS) created a support group by the name of Hit It! (Hearing Impaired Teens Interacting Together), which meets an average of four times during the academic year. Through transition activities in alignment with a student’s IEP, Hit It! fosters education, leadership, public awareness, self-advocacy and team-building skills among teen participants.

Each Hit It! meeting agenda consists of an icebreaker; a team-building/leadership component; an educational component in which students learned about hearing loss/communication; lunch; and time for social networking. Examples of educational topics include:

Anatomy of the ear

•

Degree and type of their hearing losses

•

Potential causes of hearing loss

•

How hearing technology such as hearing aids, cochlear

•

implants, and assistive listening devices can enhance their

academic experiences and social interactions

Communication barriers

•

Navigating employment and college with a hearing loss

•

Incorporating the ASAC-MS and the ASAC-HS provides additional guidance for topics related to transition, knowledge, and self-advocacy skills. Most importantly, Hit It! serves as an opportunity for students to meet other teens with

hearing loss and explore how their hearing loss aects them at

school, at home, and in social situations.

checklists

36.6.2 campUS

Another model of peer support, named campUS, was implemented in 2013 by the authors of this chapter. The mission of

campUS is to positively inuence transition for teens with

hearing loss from secondary to postsecondary education and work. This overnight experience takes place at the Ohio State University campus, thus allowing for postsecondary education experiences, such as independent living and college-level expectations (Fig. 36.2).

Fig. 36.2 A positive evaluation for a participant in the peer support group campUS.

378

36 Empowering Teens with Hearing Loss

The campUS experience strives to incorporate key components of support groups by utilizing counselors who have hearing loss

(“been there” peer mentors) who can positively inuence the

teens with hearing loss. In addition, the teens who attend meet others their own age who are going through similar experiences (peer models).

The activities at campUS incorporate key components deﬁned in IDEA 200417 and its regulations [34 CFR §300.43(a)] by supporting “transition service” activities designed to improve the student’s

life achievements. Teens with hearing loss learn to understand and manage their hearing loss as they transition from school to postschool activities such as postsecondary education, vocational education, employment, and independent living.

In addition to the teen track of campUS, a parent track is oered simultaneously in a dierent location. This track enables the

parents to gain important knowledge about their teen’s transition

process while meeting other parents who are “in their shoes”

parenting a teen with hearing loss.

The campUS experience concludes with the parents and teens reuniting after a separate overnight experience to listen to a motivational keynote presenter (presenters have included Justin

Osmond, Elena LaQuatra, and Emma Faye Rudkin) as well as to

a panel discussion by the counselors with hearing loss. Teen and parent evaluations of the campUS experience reveal positive experiences both socially and academically, with campers and parents wanting to return the following year.

36.7 Tools and Programs for

Working with Teens

As transitions occur, audiologists may ﬁnd themselves in the

role of helping teens develop new skills and adding more tools to their toolbox. These may be self-advocacy tools, communication tools, or knowledge about available programs.

The following are some resources that audiologists can explore in their school or practice to support the needs of teens with hearing loss:

AG Bell LOFT (Leadership Opportunities for Teens): LOFT is for

•

high school students who are deaf or hard of hearing and who

use listening and spoken language as their primary mode of

communication. This 4-day sleep-away program is designed

for participants to develop or strengthen skills in individual

leadership, teamwork, group dynamics, public speaking, and

self-advocacy. Program information and applications are

available on the AG Bell website: https://www.agbellloft.com.

The Audiology Self-Advocacy Checklists for middle school

•

(ASAC-MS) and high school (ASAC-HS) by Cheryl DeConde

Johnson and C arrie Spangler contain skills that students should

develop during middle and high school related to their hearing

status. The checklist allows the audiologist to introduce the

topic and track the performance using progress levels. These

forms are companion forms for the “I Can” Student Checklist

described in a subsequent item. Forms are available for down-

load: https://adevantage.com/resources.

Guide to Access Planning (GAP) (Phonak AG): The purpose of

•

GAP is to provide essential information to eectively advocate

and be responsible for one’s communication access supports

and, in particular, hearing assistance technologies. GAP can

be accessed free of charge: https://www.phonakpro.com/ us/en/resources/counseling-tools/pediatric/guide-to-accessplanning/guide-to-access-planning.html.

“I Can” Student Self-Advocacy Checklist is designed for stu-

•

dents who are deaf or hard of hearing and contains suggested skills in the areas of personal health and medical information, hearing devices and other assistive technology use, and accommodations and consumer awareness. The checklist allows the student to track skills mastered. This form is a companion checklist for the ASAC-MS and ASAC-HS previously mentioned. It is available for download: https://adevantage. com/resources.

The Hidden Impact of Hearing Loss (The Kooser Program).

•

Designed by Cathy Kooser, a social worker with hearing loss, this program focuses both on the communication and the counseling aspects of the impact of hearing loss in a person’s life. Kooser provides a program, available both as a workbook

and in a workshop or class format, speciﬁcally targeted to

teens and their families. Ida Institute Telecare for Teens and Tweens. This platform

•

includes three structured dialogues: “Why Improve My Communication?” “My Turn to Talk,” and “Living Well Online.”

These are designed to address the needs of young adults. A teen can work th rough the appropriate tool s prior to an appointment

or meeting, oering the teen a structured way to think about

hearing and daily interactions out side the appointment: http:// idainstitute.com/toolbox/telecare_for_teens_and_tweens.

The PACER Center (Minnesota Parent Training and Information

•

Center) aims to enhance the quality of life and expands opportunities for children, youth, and young adults with all disabilities and their families so each person can reach his or her highest potential. Resources are available to help professionals, parents, and students learn, teach, and respond to bullying: http://www.pacer.org.

Pepnet 2 was an online free resource sponsored by the Oce of

•

Special Programs and Education (OSEP) of the U.S. Department of Education that included a variety of quick classes, training modules, webinars, and research briefs related to increasing educational, career, and lifetime choices for individuals who are deaf or ha rd of hearing. Since the termination of this projec t

in 2016, the resources have been hosted by the Described and

Captioned Media Program (DCMP) of the National Association for the Deaf. To access them, users will need to create a DCMP eLearner account: https://dcmp.org/elearning.

The National Center on Secondary Education and Transition

•

(NCSET) coordinates national resources, oers technical

assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures. Resources related to self-determination and transition are available on this website: http://ncset.org/.

379

IV Educational and Clinical Management of Hearing Loss in Children

36.8 Appendix 36.1

Appendix 36.1

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