A Case-Study Probe of Relationship-Based Intervention as a Point of Entry with Families of Infants with Hearing Loss.
Marian Hartblay, M.Ed, University of Massachusetts/Clarke Schools for Hearing and Speech
The implementation of Universal Newborn Hearing Screenings in birthing hospitals across the country has lead to a greater number of infants being identified with a range of hearing loss in the newborn phase of life. The benefits of this significantly earlier identification, along with intervention and technological advances have been well documented (JCIH, 2007, Vohr, et.al. 2008, Yoshinaga-Itano, 1998). Although these trends represent a tremendous improvement over past practices, the period of time between referral, positive diagnosis, and initiation of intervention remains a concern. The parent –infant relationship is in a critical period of formation during the newborn stage of infancy, and when an infant is diagnosed with hearing loss, fundamental questions about care-giving and communication arise for many parents
The impact of Universal Newborn Hearing Screening (UNHS) has been referred to as a silent revolution. In less than 20 years, the percentage of infants whose hearing was screened at birth increased from 3% to 93% in 2005. The average age of identification of hearing loss in children was reduced from 30 months to 3 months. Additionally, infants with mild, moderate and unilateral hearing losses are being identified at improved rates because of screening protocols.
In spite of these successes, questions about the standard of care and the impact of infant hearing loss on the family remain a concern. Although most families experience stress when their infant is referred for further testing after UNHS, such stress dissipates only for those families whose infants are not subsequently diagnosed with hearing loss. A positive identification of hearing loss increases stress, financial strain, and caretaker burden (Vohr, et.al, 2008). Parents of infants with a diagnosed permanent hearing loss (PHL) need support and understanding for the emotional impact of diagnosis, factual information on hearing loss and development, and access to appropriate specialty providers and other parents (DesGeorges, 2003; Luterman & Kurtzer-White, 1999; Meadows- Orlan, et. al., 2003).
Universal Newborn Hearing Screening has modified the general profile of how parents learn about their child's permanent hearing loss. Prior to UNHS, the diagnosis of PHL typically evolved over time due to parents' direct observations of their child's language delay, behavioral issues, or an incident that indicated lack of hearing. The subsequent diagnosis of deafness resulted in some combination of shock as well as confirmation to parents. Such a delayed diagnosis was unsettling; sometimes challenging the parents' self-image as they reflected on how they could not have known their child had a hearing loss.
Today, parents are more typically told that their infant may have a hearing loss just as they are beginning to form a relationship with their newborn, prior to their own observations and suspicions, and therefore need information and support during the newborn phase of life.
Knowledge of the hearing loss affords parents the benefits of adapting care to meet their infant's perceptual and communicative needs. However, the risks to the development of the infant's communication may also create temporary or foundational risks in the parent-infant relationship. Parents look for evidence that their baby has hearing loss. Infants who have mild- to- severe hearing loss may be responsive to environmental sounds as well as voice, and infants with profound hearing loss may be responsive to other cues in a way that mimics responses to auditory information. Parents or family members looking for evidence that their infant has a hearing loss may therefore question the proof and validity of clinical hearing tests, which may create unstable trust in the parent-professional relationship.
The specialty provider in early intervention, typically a Teacher of the Deaf and Hard of Hearing (TOD), is a critical resource for parents at this time. In addition to the clinical information provided by audiologists and otolaryngologists, the TOD can help parents to understand the nature of hearing loss and recognize opportunities to minimize the potential impact on emerging development. Support can help to focus parents toward understanding their infant's behaviors as communicative events. Such support is especially critical when a parent is concerned that communication may be limited because of the infant's hearing loss.
The Newborn Behavioral Observation (NBO) system (Nugent et. al., 2007) is designed as an interactive system to inform and support parents during the critical period following birth of the baby (0-3 months). The NBO focuses on the newborn's behavioral competencies and communication cues, and therefore facilitates support of the complex and emerging parent-infant relationships. The NBO is particularly suited to the parent-infant-interventionist triad when an infant is diagnosed with hearing loss; it requires only a brief period of time for administration, has been applied in other early intervention settings during home-visit programs, and is helpful in identification of goals for the Individual Family Service Plan (IFSP) (Levin, 2006).
A newborn's behavior can be understood as cues the infant gives about his/her competencies, response to the environment, and need for support, allowing the interventionist an opportunity to facilitate parent-infant reciprocity and communication in the early developing relationship. Relationship-focused early intervention is known to increase parent and child sensitivity and responsiveness, supporting the social and emotional development of the child (Kelly, Zuckerman & Rosenblatt, 2008).
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This case study was used to explore the following question: Does use of the NBO during initiation of a relationship-based intervention enhance sensitive parent-infant communication in the case of infants diagnosed with hearing loss?
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This case study implemented use of the NBO and video-analysis into typical referral and early intervention protocol used in the state of Massachusetts in the United States. Following referral on Universal Newborn Hearing Screening (UNHS), the infant boy was diagnosed with moderate bilateral sensorineural hearing loss, and the audiologist referred the family to early intervention agencies and specialty providers in hearing loss. Initial intake and assessment took place in the home with an early intervention team and a specialty provider (Teacher of the Deaf) when the baby was 2 months old, and prior to fitting of hearing aids. Collaborative intake included: a team coordinator, a speech and language pathologist, a developmental interventionist, a physical therapist, a social worker, and teacher of the deaf and hard of hearing (TOD). No special needs other than hearing loss were identified, though risk in motor development was observed and physical therapy was suggested. An Individual Family Service Plan (IFSP) was developed.
The NBO as Point of Entry: Intervention using the NBO began one week later with the administration of the NBO by the Teacher of the deaf and hard of hearing (TOD) during a home visit. The NBO facilitates the parents' shared observations of 18 infant behavioral reactions and adjustments, and six states of alertness. Parents observe their newborn's adjustment to specific stimuli such as light, sound, swaddling/covering, faces, voice, soothability, and state regulation as evidence of their baby's individual needs. The infant's motoric capabilities (e.g., reflexes and muscle tone), are observed for cues of competence and preference, and any guidance needed to attain a relaxed or awake state.
Such shared observations can inform and reassure parents of their ability to comfort and relate meaningfully with their child, even if the newborn seems to have low tolerance for some stimuli (e.g., light), or less responsivity (e.g., to auditory stimuli such as a rattle). The Newborn Behavioral Observation system (NBO) combined with audiological information, was used in this session to:
- establish a meaningful relationship between the TOD and mother
- jointly observe the infant's development
- provide parents with information about their infant's development based upon audiological reports and infant behavior
- explore parent questions and feelings, and
- provide guidance based upon behavioral dimensions structured by the NBO and what is known about the infant's hearing status.
- discussion of what the baby's behavior revealed or communicated. (See Case Study vignette).
At the end of this session, the mother completed an evaluation of the NBO process.
When the infant was 4.1 months old, a video- recording was made of a parent-infant play session during a home visit to assess the quality of mother-infant interaction. The video recording of the play session was then analyzed using two methods. In the first analysis, two observers rated the parent's responsiveness to infant behaviors, and the impression of synchronicity in the parent-infant relationship on an ordinal scale based upon behavioral dimensions of the NBO (Autonomic, Motor, Organization of State, Response to environment). Infant cues, parent responses, and missed cues were tallied. A rating of parent-infant synchronicity was based upon frequency of parent responses to infant cues (None ≤ 10%; Little= 10-30%; Some= 30-60%; Most= 60-100%). Effectiveness of parent response to infant behavior cues used a scaled rating of (Poor = met infant's needs < 10% of the time; Low (10-30%), Medial (30-60%); High (≥ 60%).
A second video- analysis tracked elements of the infant's prelingual communication. This analysis was derived from methodology used to measure prelinguistic progress and communication with young cochlear implant users (Tait, 1994), and was modified for the developmental stage of infancy. Two raters, each experienced with communication and hearing loss, completed the behavior analysis, and percent of agreement was calculated across four elements of the infant's prelingual communication including: Turn-taking (vocal and gestural); Eye Contact (joint with mother and joint attention to object); Auditory Awareness (when not in eye contact and when in eye contact), and Autonomy (vocalizing or gesturing for attention outside of turn-taking cues).
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The mother evaluated her experience with the NBO as very positive. Through a written questionnaire, she indicated that she learned "a lot" about how her baby could communicate through his behavior, how she can respond to his behavior, how she can help him when he is crying, and how to interact with him. She rated her learning about her baby's competencies as "some." She scored her knowledge of her baby's behavior before the NBO as 5/10 (From a score of 1=Knowing very little to a score of 10= knowing a lot), and gave herself a score of 8/10 following the NBO. She chose the highest ratings on a scale of 1-4 indicating that she was able to share her ideas and participate in the NBO session, and had highest trust in the person conducting the NBO. The mother also chose the highest rating (4=a lot) in how much the NBO helped her to: feel closer to her baby, feel more confident as a parent, get to know her baby more, and to communicate with the person conducting the NBO. Her overall evaluation of the NBO using a 4- point scale of poor- to- excellent as learning experience was "excellent."
Infant behavior cues based upon the 18 dimensions of the NBO that were observable in the video play session were tallied. Mathematical analysis revealed that there was a 70% or greater synchronicity between the infant's observable behaviors and the mother's responsivity in 11 out of 18 areas observed. For 7 out of 18 areas, the mother's rate of responsivity was greater than the infant's behavior cues observed by the recorder (demonstrated as percentages over 100%). The explanation for this is that the mother often anticipated her infant's needs and her behaviors helped to shape and guide the baby's behavior. Overall, synchronicity was rated "Most" for percentage of infant behavior cues that elicited a parent response; and effectiveness of the parent's response in meeting the child's cues was rated as "High".
The recorded play session provided numerous examples of the mother's attention to her infant's needs for support, challenge, comfort and natural encouragement of socialization and communication. The mother often paused after speaking to her infant, naturally cuing the baby to take a turn vocalizing; she imitated the infant's vocalizations; she used touch for re-establishing the baby's attention, to provide comfort and stimulation, encourage and support the baby's effort to roll to the side, and therapeutically to discourage arching of the head and neck by encouraging a relaxed position of the head; she used withdrawal of touch and voice to provide the infant with opportunities for autonomous behaviors (she sat back and waited for a cue from the baby); she positioned her body to establish and re-establish eye-contact; she positioned a rattle to within the baby's field of vision and within grasping range, enabling and challenging him to grasp and hold the rattle; and to attract the baby's social and auditory attention.
Video-analysis tallied the infant's emerging Prelingual Communication behaviors. Results indicated inter-rater reliability scores as high for three characteristics of prelingual behavior: observers had an 80% or greater agreement on observations of infant vocal turn-taking (81%), joint eye contact with his mother (88%), and autonomous use of gesture (100%). The mother's awareness and responsivity to her baby's behaviors were considered positive reinforcers of the infant's prelingual communication.
The NBO session took place in the living room with mother, the baby boy, and TOD. A blanket was placed on the carpet for the baby, and the mother and TOD sat near him. The baby was alert and very interactive; he oriented to faces, smiled and kicked his feet. The mother laughed and reported on sounds he makes, and his reactions to hearing the dog barking.
When placed on his tummy to observe the Crawl response, the baby lifted his head up high and to the side, and kicked his feet. He self-comforted by sucking the knuckle of his thumb, and maintained his head in midline when pulled to sit, with some support given to his back. Mom reported that he did not like to be swaddled, but liked a light cover. He had a strong sucking response with his pacifier as he began to tire.
When the TOD presented the rattle, the baby turned toward the sound. When held in midline, he looked at and followed movement of the TOD's face to his side. When his mother was asked to call his name, he turned toward her. The baby visually tracked the red ball and faces. Though well-regulated, he indicated fatigue by becoming somewhat fussy. As the infant's behaviors were observed, the TOD used phrasing such as "He seems to be telling us..." and "He seemed to turn right toward your voice and look for your face," and questions to the mother such as "Do you think he heard that?" These shared observations of the baby's behavior lead to discussion and guidance: As her baby is at the end of the newborn phase, and is very stimuable socially, he may need soothing support to calm and quiet when transitioning from play and social games to resting.
Even with a diagnosis of moderate hearing loss, mom and the TOD observed that the baby responded to the rattle and voice. This provided a seguay for the mother's questions about his hearing loss, "How close does sound need to be for him to hear it?"
The TOD's response approximated, "You already notice that he hears a lot, even without hearing aids, so it will depend on how loud the sound is, how far away it is, and what other sounds are happening at the same time. While you hold him close and speak to him, based on the ABR results, he should be able to hear most of what you say to him when he wears his hearing aids. When you hold him, his ears are close to your voice, and he can also see your face, the attention you give him, and feel the warmth of your breath and vibration of your voice."
The mother asked more questions and prepared for more specific information about hearing loss. The TOD plotted results of the baby's Auditory Brainstem Testing (ABR) on a "visible audiogram" so that the baby's moderate hearing loss could be considered in perspective to lesser and greater degrees of hearing loss, and provide an impression of what baby's functional hearing may be. While this reassured mom that the baby is hard-of-hearing, not deaf, it also allowed this mother to confront her feelings and fears.
With tears in her eyes, Mom said, "So, he will not be able to hear leaves rustling?" This allowed for explanation that with hearing aids, her baby may hear sounds that are quite soft under the right conditions, but that most importantly; the hearing aids would help him to hear speech more clearly. The TOD encouraged mom to talk more about how she was feeling, "It makes you sad to think about what he might not hear." Mom explained, "I shouldn't be crying, or be sad for him; he is perfect." This paved an opportunity to assure that it is very normal for a mother not to want her baby to experience challenges, and that her sadness did not mean, as she said she feared, that she was not accepting her baby.
The TOD explored further, "Some parents wonder if there might have been something they did or did not do that caused the hearing loss." Mom said that she had wondered. She talked about her prenatal care, and seemed to reassure herself that she had been careful and that her baby's hearing loss was not within her control. The TOD brought the focus back to the present, "You seem to enjoy being a mom—and we can see together how happy and healthy your baby is, even though he has some hearing loss." Mom said, "I do like being a mom!" A discussion followed about how robust her baby's auditory responses were today, and what she might expect to observe when hearing aids were fitted.
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Discussion and Implications
As Universal Newborn Hearing Screening (UNHS) increases identification of hearing loss in early infancy, it is essential that service providers are trained and prepared to support the family during the crucial newborn period.
As an independent example, this case study supports the efficacy for use of the Newborn Behavioral Observations (NBO) system as a point of entry to intervention with a family following diagnosis of permanent hearing loss (PHL) in early infancy. Although generalized conclusions regarding long-term effect are limited, the structured focus of the NBO on facilitation of parent-infant communication and provider collaboration provides a foundational basis for the parent-infant-provider triad and video-analysis supports sustained sensitive parent-infant communication.
The NBO, in its focus on relationship in the context of newborn behavior, is a dynamic resource in the parent-infant-provider triad when an infant is diagnosed with hearing loss. During the family's critical period of adjustment to the birth of a baby, a diagnosis of hearing loss can interject focus on a deficit and deflect the parent's energy and attention from the unique joys of the newborn period. The NBO reduces the possibility of such a negative focus by facilitating the parent's sense proficiency in "reading" their infant's behaviors, supporting the development of early reciprocal communication, and a dynamic parent-provider relationship. Because the core focus of the NBO is on this emerging communication, it is particularly relevant for use in early detection and intervention with deaf and hard of hearing infants and their families.
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