Every audiologist, regardless of his or her patient population, has faced telling parents their child has hearing loss. It may become easier to break the news with practice, but have you ever stopped to think about what might be racing through their minds?
Many parents are completely unaware of the world of hearing loss and are suddenly panic-stricken to think their child may never learn to communicate. Due to the advent of universal newborn hearing screenings, audiologists are delivering this news earlier—usually when new parents are in their most vulnerable state. Both new parents and parents of children with chronic conditions have shown increased levels of anxiety and depression (Matthey et al, 2013; Cousino and Hazen, 2013). Parents of children with hearing loss fall into these categories, particularly if their child has other comorbidities, and may be at risk for developing mental health disorders.
According to a survey from the National Institute of Child Health and Human Development, one out of eight mothers experience anxiety and depression during pregnancy and/or shortly after having a new baby (National Child and Maternal Health Program). If left untreated, high levels of post-partum depression may even affect infant cognitive development (Koutra et al, 2013). Introducing the diagnosis of a chronic health condition, like hearing loss, during this fragile time can be devastating for new parents. Permanent hearing loss is now commonly identified within the first few weeks of life, with early intervention services beginning within the first few months. Efficient and timely services are critical for good outcomes but can be an overwhelming source of responsibility for parents.
Is This Really an Issue for Audiologists?
There is a general consensus that hearing loss can affect a family’s psychosocial status with anywhere from minor to major impacts on their psyche (Calderon and Greenberg, 1999; Falakaflaki and Kalantarkousheh, 2013; Lederberg and Golbach, 2002; Meadow-Orlans, 1995; Pipp-Siegel et al, 2002; Spahn et al, 2003). In light of the evidence regarding psychosocial changes, more attention should be given to their effects on pediatric quality of life and development.
Depression in mothers of children with hearing loss has been shown to affect the child’s psychosocial development as early as two months of age, as depressed mothers are less emotionally available for effective interactions (Cohn et al, 1990). This negativity may increase over time if depression continues, which further limits the child’s ability for emotional growth (Cohn et al, 1990). Not only are parent-child interactions strained or absent when anxiety and depression are involved, but these feelings can even affect a parents’ ability to manage their child’s condition.
In a study by Muñoz and colleagues (2016), a multiple-linear regression analysis found that parents who were severely depressed reported their children used their hearing aids approximately two and a half hours per day less than parents who reported no depression.
Addressing mental-health concerns as an audiologist is a foreign, and, frankly, quite intimidating concept. We place a box of tissues on our desks and cross our fingers that we will be able to care for our patients and their families appropriately, but how many are facing demons?
An unpublished AuD student capstone project that examined the mental health status of parents of children with hearing loss found potentially detrimental effects on pediatric quality of life (Hester-Keels et al, 2017). Participants were parents of children with hearing loss ages zero to 12 years who attended auditory-oral schools across the country. They were asked about their levels of anxiety and depression within the last several days and their child’s quality of life within the past month using questions from the Patient Reported Outcomes Measurement Information System by the National Institute of Health and the Pediatric Quality of Life Parent-Proxy Generic Core Scales 4.0 , ages zero–12 years.
Even though 57 percent (n=40/70) of participants reported no symptoms of anxiety, 43 percent (n=30/70) were experiencing anywhere from mild-to-severe anxiety (see FIGURE 1). Approximately 76 percent (n=52/69) of participants were not experiencing symptoms of depression, but 24 percent (n=17/69) were experiencing mild-to-moderate depressive symptoms (see FIGURE 2). A correlation co-efficient revealed a significant moderate correlation (r=0.619, p<0.0001) between anxiety and depression scores. A stepwise linear regression model was significant, with anxiety and depression accounting for 26 percent of the variance (r2=0.260) in total pediatric quality-of-life scores. However, depression was the only significant predictor variable in the model (p<0.0001). For every one-point increase in depression scores, there was a 0.83-point decrease in total pediatric quality of life scores (B=-0.830).
If parents experience distress in relation to their child’s hearing loss that is impacting their quality of life, what preventative measures can we take to avoid further suffering? Audiologists can assist families through their journey by giving them the informational and emotional guidance necessary to feel confident in managing their child’s condition. Stress can decrease over time but tends to increase during transitional periods, and having an audiology-based foundation of support can act as an anchor at those times in a child’s life.
Not only can audiologists learn to give proper guidance, but parents expect support from their health-care providers. In a study examining chronic parenting stress, Quittner and colleagues (1990) found that, “mothers of deaf children listed health-care professionals more frequently in their networks and attributed a significantly larger percentage of functional and emotional support to these sources (12 percent), as compared with mothers of hearing children (3 percent).” Audiologists who serve pediatric populations and their families are in an optimal position to provide assistance by consistently monitoring the families’ needs through three main avenues: (1) emotional support, (2) structured education and group support, and (3) psychological support.
While audiologists are in an ideal position to guide families through their journey from diagnosis to treatment, few are confident in their abilities to provide counseling services. Muñoz et al, (2015) examined how audiologists attend to parents' emotions and found discrepancies between what families wanted and what professionals were able to give.
In a survey of 37 families, 36 percent (n=19) reported their audiologist helped them manage emotions, 53 percent (n=30) provided them with enough time to discuss their emotions, and 57 percent (n=27) helped them understand their emotions. In a related study by Muñoz and colleagues (2016), most parents felt their emotional needs were being met, but 27 percent (n=86) desired for their audiologist to check in with them more frequently regarding support. Even though some audiologists feel comfortable providing emotional support, not everyone has received proper training.
In a study by Meibos et al (2016), only 39 percent (n=131/335) of participating audiologists had received training in screening for symptoms of depression and anxiety, while 76 percent of participants desired more training on the topic. Even though patients approve of and feel comfortable with their providers conducting a mental-health screening, the majority of audiologists fear adverse reactions (Muñoz et al, 2017).
Other health professions have recognized mental health as a critical aspect of comprehensive care, and creating screening measures to address those needs has been successful (Smith et al, 2016). If audiologists are trained in basic mental health through graduate courses or continuing education, they are likely to be better prepared to notice anxiety and depression, and may be more inclined to take appropriate action.
Structured Education and Group Support
Family-centered care is a staple of a trustworthy health-care system. For any family coping with a child’s diagnosis of hearing loss, particularly those experiencing anxiety and depression, structured education and support groups can provide a sense of unity. Unfortunately, many practices rely on the use of informational packets to answer questions in lieu of dedicated counseling sessions.
Meibos and colleagues (2016) surveyed 343 pediatric audiologists and 226 (66 percent) reported not having enough time to address parent emotions during appointments. A critical factor of anxiety and depression in parents of children with hearing loss is the fact that those symptoms may be secondary to the diagnosis of hearing loss. Not all stress can be diminished through knowledge, but conducting structured educational sessions shortly after diagnosis in the areas of auditory development, communication methods, hearing loss, and device use and troubleshooting may help ease the coping process.
By providing structured education in a group setting, parents of children with hearing loss gain easy access to families with similar experiences who can act as personal support. Combining these education sessions with more informal support groups may further ease tension by allowing families to connect with each other and express their emotions openly to an understanding audience. However, many practices may not find group education and support feasible. In the Meibos et al, (2016) study examining parent hearing aid education and support, only 40 percent of audiologists (n=140/349) were able to provide information to families regarding how to connect with other parents of children with hearing loss and find support groups.
Few studies have examined the effects of support groups on parents of children with hearing loss. In Fitzpatrick et al (2008), researchers found not only parent support groups, but simple access to input from other parents, fulfilled their needs regarding “knowledge sharing, practical information about hearing devices and community resources, prognostic information, and hope.” Some parents found emotional support through the group “beyond what could be offered by psychosocial providers in health care.” While leading support groups may be a challenge for some audiologists due to time restraints and/or lack of knowledge, it is important to recognize the positive benefits for patients and their families, and consider creating a safe space for them. Collaborating with psychologists to create support groups may even lead to better outcomes through more consistent device use and better patient/family satisfaction.
We can provide informational counseling and emotional support regarding hearing loss, but psychological counseling is beyond our scope of practice. However, integrating audiological and psychological services by establishing a working relationship with psychologists can be crucial to detecting anxiety and depression before they become severe enough to warrant a clinical diagnosis.
Fitzpatrick and colleagues (2008) conducted semi-structured interviews with 17 families in Ontario, Canada, regarding their needs following a diagnosis of childhood hearing loss. Many parents did not have exposure to psychological services unless their child was being considered for cochlear implantation. Parents’ encounters with social workers were also inconsistent due to separation between psychology, audiology, and speech and language pathology departments.
Audiologists can be the first line of defense in recognizing mental-health problems related to hearing loss and provide appropriate referrals not only for parents, but for our pediatric patients. Research regarding the mental-health status of children with hearing loss, particularly those who use listening and spoken language as a primary communication mode, is lacking.
In an article by Dammeyer and colleagues (2010), researchers found that a child’s ability to communicate, regardless of modality, may act as a protective factor against development of psychopathologies in hearing-impaired children. This finding provides further evidence for early detection and intervention, as providing access to sound and establishing strong communication skills through the family’s first language could decrease those risks for future psychological disorders.
In a study of 200 children ranging in ages nine to 15 years of age, Theunissen and colleagues (2011) found that hearing-impaired children reported significantly more symptoms of depression than their normal-hearing peers. In one of the few studies examining anxiety specifically in children with hearing loss (Theunissen et al, 2012), the authors discovered that children with cochlear implants experienced anxieties comparable to their normal hearing peers. However, children with lesser degrees of loss who wore hearing aids reported significantly higher social anxiety, and their parents reported significantly higher general anxiety compared to cochlear implant users and their parents. Children with hearing aids also showed more symptoms of psychopathology than their peers with cochlear implants (Theunissen et al, 2015). An extensive literature review has shown that children with hearing aids never perform better than their peers with cochlear implants on measures of psychopathology, even though they have a lesser degrees of hearing loss (Theunissen et al, 2014). When assessing the need for psychological services, broadening resources to children and their families experiencing any degree of hearing loss may assist in reducing emotional difficulties.
Parents of children with permanent hearing loss may be experiencing symptoms of anxiety and depression. Those symptoms may affect their ability to manage their child’s condition and can have negative effects on pediatric quality-of-life. Audiologists can be a point of access for care by screening for anxiety and depression regularly, and providing various levels-of-support for patients and their families. It is important to refer to mental-health professionals, when screening results warrant the need.