Early identification and intervention have consistently been linked with improved outcomes in children with hearing loss.1 The development and implementation of universal newborn hearing screening has allowed hearing health care providers to identify children with hearing impairment earlier than ever before, resulting in improved communication and academic outcomes for children with hearing loss.2 However, early identification and intervention alone is not enough to ensure a child's success. Family engagement is one of the most important predictors of a child's early success and development into adulthood.3 Formal parental involvement—for example, providing linguistic input to foster language development—and informal involvement, such as making important informed decisions for their child, are vital. Studies have found that families of newly diagnosed children reported a lack of information and emotional support, such as social networks and peer support groups.4,5 This may be due to several factors, including (1) a lack of training in audiology education programs on ways to foster family engagement, (2) family engagement being a non-standard component of providers’ clinical goals, and (3) the increasing complexity of health care systems and/or low-resourced environments being unable to support activities to improve family engagement. Historically, hearing health care providers often spend most of their clinical time addressing hearing loss and/or hearing devices. Despite significant advancements in hearing technology over the past few decades, we continue to see considerable variability in the treatment outcomes of this patient population. To effectively engage parents, guardians, and other family members, providers must have the knowledge and skills to foster and facilitate family engagement.
The success of an intervention with hearing devices is largely driven by the support the child receives outside of the clinical setting both at home and in school. Outside stressors, poor support system, and/or limited financial resources can become barriers to family engagement. These factors may inhibit the family's ability to access or retain hearing care information and ultimately limit their ability to advocate for a child with hearing loss. Given these complexities, having a multi disciplinary team is essential to ensuring effective family engagement. Fitzpatrick and colleagues6 suggested that understanding a family's needs and expectations and providing early intervention that aligns with those expectations could ultimately contribute to the family's compliance with recommendations and the patient's positive outcomes.
At the University of Miami Children's Hearing Program, our pediatric hearing health care team includes otolaryngologists, audiologists, auditory verbal therapists, as well as a psychologist, social worker, and educational specialist. These professionals work collaboratively with our program coordinator to identify areas for concern, develop a family-centered plan of care, and monitor outcomes. To increase family engagement, a significant amount of time and resources are spent developing individual and/or group therapy sessions and mentoring programs and family activities that provide peer support to meet the needs of each child and family no matter their cultural background. Video conferencing is also available for families who could benefit from tele-coaching to ensure a regular and timely intervention.
ADDRESSING DISENGAGED FAMILIES
Providers have a perfect opportunity to collaborate with families under the guidelines set forth by family-centered early interventions.7 They should work with families to learn better ways to identify barriers that affect family engagement and support their needs. Families need to feel comfortable expressing themselves and their challenges. For providers, the best way to enable families is to establish rapport by asking open-ended questions and encouraging non-vocal parents. Parents should always be given the opportunity to talk first, and providers should avoid interjecting their thoughts or opinions until the family has finished talking. More importantly, acknowledge and positively respond to any effort the family is making, even if it's small.
Providers need to be good listeners and communicators with patients and their families (see Table 1). If unclear about a situation, providers should ask for specific details or a restatement to interpret the family's statements correctly. Nonverbal cues are also critical in this process. Make sure you are attentive, directly positioned in front of the family, and use a calm and neutral tone of voice.
Most of these strategies come from motivational interviewing (MI), a method that helps people resolve ambivalent feelings to find the motivation they need to change their behavior. It is a practical, empathetic, and short-term process that takes into consideration the difficulties in making life changes.8 MI uses open-ended questions, reflective listening, affirmations, and summarization to help individuals resolve their insecurities and begin the process of behavior change. Counseling techniques are only used when the individual is ready and willing to hear the information, and is provided in a collaborative, autonomy-promoting manner. Research has shown that simple motivation-enhancing interventions are effective in encouraging people to return for further consultation or treatment after a missed appointment, stay involved in treatment, and be more adherent to the treatment plan. In fact, a recent study showed that despite differences in MI treatment intensity, short interventions were as effective as longer interventions; two MI sessions for as little as 15 minutes were effective in enhancing treatment attendance.9
Additionally, research in MI has also identified the importance of self-efficacy and confidence. A sense of self-efficacy can influence the way parents perform their daily tasks. When individuals perceive themselves as competent parents, they set higher goals for themselves and become committed to achieving those goals.10 One tool specifically designed for parents of young children who are deaf or hard of hearing is the Scale of Parental Involvement and Self-Efficacy (SPISE).11 This measures parents’ perceptions of their knowledge and skills necessary to guide their child's auditory and communication development and the extent to which parents perceive themselves as involved in these activities (e.g., checking the child's cochlear implant and developing the child's language skills).
Providers are encouraged to build rapport with patients’ families and to use these intervention techniques in identifying reasons for poor adherence and involvement. In addition, pediatric health care teams should work with social workers or psychologists who can provide counseling services for families who are reporting depressive or anxious symptoms or continue to struggle with following recommendations or accepting their child's hearing loss. Addressing these underlying issues will ultimately lead to positive parenting practices and better overall child outcomes.
1. Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL Language of early- and later-identified children with hearing loss. Pediatrics.
1998 Nov; 102 (5):1161-71.
2. Pimperton H, Kennedy CR The impact of early identification of permanent childhood hearing impairment on speech and language outcomes. Archive of Disease in Childhood.
2012 July; 97(7):648-53.
3. Couto MI, Carvalho AC Factors that influence the participation of parents in the oral rehabilitation process of children with cochlear implants: a systematic review. CoDAS. 2013 25 1 84–91
4. Yucel E, Derim D, Celik D The needs of hearing impaired children's parents who attend to auditory verbal therapy-counseling program. International Journal of Pediatric Otorhinolaryngology.
2008 July; 72(7):1097-111.
5. Rahi JS, Manaras I, Tuomainen H, Hundt GL Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers. Pediatrics.
2004 Oct; 114(4):e477-82.
6. Fitzpatrick E, Angus D, Durieux-Smith A, Graham ID, Coyle D Parents' needs following identification of childhood hearing loss. American Journal of Audiology.
7. Individuals With Disabilities Education Act, 20 U.S.C. § 1400 (2004).
8. Rollnick, S., Miller, W. R., & Butler, C. C. (2007). Motivational interviewing in health care: Helping patients change behavior. New York: Guilford.
9. Lawrence P, Fulbrook P, Somerset S, Schulz P Motivational interviewing to enhance treatment attendance in mental health settings: A systematic review and meta-analysis. Journal Psychiatric and Mental Health Nursing.
2017 November; 24(9-10):699-718.
10. Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W. H. Freeman.
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11. DesJardin, J. L. Assessing parental perceptions of self-efficacy and involvement in families of young children with hearing loss. Volta Review.
2003; 103(4), 391-409.