Family Counseling

Permanent Childhood Hearing Loss
Screening

Family Counseling

 


 

External Scientific Evidence

Evidence-Based Practice Guidelines
New York State Department of Health, Early Intervention Program; U.S. Department of Education

Clinical Practice Guideline: Report of the Recommendations. Hearing Loss, Assessment and Intervention for Young Children (Age 0-3 Years)
New York State Department of Health, Early Intervention Program. (2007).
Albany (NY): NYS Department of Health, Publication No. 4967, 354 pages.
Added: July 2012

Description
This evidence-based and consensus-based guideline provides recommendations for the assessment and intervention of hearing loss for young children ages birth to three. The guideline targets parents and professionals. Recommendations of interest to audiologists and speech-language pathologists include screening, assessment, and management of hearing and assessment of communication. Each recommendation is provided with a strength of evidence rating defined as Level A (strong evidence), Level B (moderate evidence), Level C (limited evidence), Level D1 (consensus panel opinion based on topics where a systematic review has been conducted), and Level D2 (consensus panel opinion not based on findings from a systematic review).

Recommendations
When informing the family about the diagnosis of hearing loss, it is important to address the family’s initial concerns, provide parents with information, respond to the needs of the family, and determine factors that may influence the family’s reaction to the diagnosis (Level D2 Evidence).

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Evidence-Based Systematic Reviews
Loss to Follow-up in Newborn Hearing Screening Programs: A Systematic Review of the Evidence
Mullen, R., Frymark, T., et al. (2008).
American Speech-Language-Hearing Association. Loss to Follow-Up in Early Hearing Detection and Intervention [Technical Report].

This review meets the criteria for a high-quality evidence-based systematic review.
Added: July 2012

Description
This systematic review examines the current state of the evidence pertaining to loss to follow-up after initial identification of newborn hearing loss.

Conclusions
"The small number, poor quality and inconsistent findings within the available evidence do not provide meaningful direction for clinicians or policymakers in identifying patients/families at the highest risk of loss to follow-up, nor how to decrease that risk. More high quality epidemiologic studies with precise definitions of terminology and incorporation of multivariate statistical analyses are needed, as are high quality experimental or quasi –experimental studies of well-defined interventions targeted at increasing follow-up” (p. 12).

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Clinical Expertise/Expert Opinion

Consensus Guidelines
American Speech-Language-Hearing Association

Guidelines for Audiologists Providing Informational and Adjustment Counseling to Families of Infants and Young Children With Hearing Loss Birth to 5 Years of Age [Guidelines]

Retrieved from: http://www.asha.org/docs/pdf/GL2008-00289.pdf.
Added: July 2012

Description
This is a guideline on providing counseling to families of young children with hearing loss. Recommendations for audiologists are provided in the areas of identification, assessment, and intervention.

Recommendations

  • "For counseling to be most effective, information counseling and adjustment counseling/emotional support must be balanced. The goal is to facilitate the development of informed, independent, and empowered families who will make good decisions for themselves and their child" (p. 20).

  • "Terminology that misleads or confuses parents may influence a family’s acceptance of hearing loss and postpone or at least delay the implementation of needed services. Additionally, audiologists are continually balancing education and guidance with their role as facilitator and advocate for informed decision making by families" (p. 4).

  • "It is within the scope of practice in audiology to infuse emotional support during interactions with families" (p. 4). Some families may exhibit severe reactions that continue for an extended period of time or worsen. "In such cases, the parent’s need for counseling or other supports may be beyond the scope of practice for audiologists, who should then be prepared to refer families to appropriate mental health care professionals" (p. 5).

  • "…to the extent possible, audiologists should be the professionals who communicate with parents when a baby has not passed a hearing screening" (p. 7).

  • "The following principles support effective informational counseling:

    • Communication with parents is confidential and presented in a family-focused manner.

    • Information is delivered in a clear and concise manner avoiding technical jargon.

    • Parents are given the opportunity and encouragement to ask questions" (p. 8).

  • Initial verbal and written information should be provided to families in their home language and include:

    • the rationale for screening

    • screening procedures

    • possible screening outcomes and implications

    • importance of follow-up

    • reasons for additional testing

  • Educational materials provided to the family should be:

    • "provided as part of hospital prenatal education programs and/or public health clinic outreach programs

    • written at a 4th to 5th grade literacy level

    • available in the preferred language of the family" (p. 8).

  • "Despite passing a newborn hearing screening or when families choose to not participate in screening, parents should be counseled about the need for ongoing surveillance and periodic monitoring of auditory and speech-language skills throughout early childhood" (p. 9).

  • "Adjustment counseling for families whose infants have failed a screening may include listening and responding to fears or concerns expressed by families, and ensuring follow-up of the failed screening in a timely manner to ameliorate stress and anxiety in families" (p. 9).

  • If a family refuses screening, they should be provided with information on the availability of hearing screening after discharge and developmental milestones.

  • "The importance of coupling the screening process with parent information and support is crucial for facilitating smooth and timely transitions to the diagnostic process" (p. 10).

  • Adjustment to hearing loss counseling may include:

    • acknowledgeing the impact of a hearing loss diagnosis on a family

    • idenifying supports for the family

    • recognizing the family’s needs

    • focusing on the fmaily’s strengths

    • differentiating between acute grief and clinical depression

    • providing emotional comfort. 

  • "Audiologists are responsible for providing families with unbiased information, recommendations, and appropriate educational and communication options based on family decisions and informed choices" (p. 13).

  • "Efforts should be made to provide families with formal and informal opportunities to meet and interact with other families with similar experiences when they desire such opportunities" (p. 16).

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Joint Committee on Infant Hearing

Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs
Joint Committee on Infant Hearing (2007).
Pediatrics, 120(4), 898-921.
Added: July 2012

Description
This consensus-based guideline provides recommendations for screening infants for hearing loss, assessing infants identified as at-risk for hearing impairment, and providing appropriate early intervention for infants with hearing impairment. The intended audience of these guidelines is not specified, however they are relevant to all professionals involved in the screening, assessment or treatment of hearing in infants.

Recommendations
Screening results should be conveyed to families as soon as possible. If follow-up is needed, information regarding the importance of prompt follow-up should be shared and an appointment for follow-up testing should be offered before hospital discharge.

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NHS Newborn Hearing Screening Programme Clinical Group (UK)

Newborn Hearing Screening and Assessment: Guidelines for the Early Audiological Assessment and Management of Babies Referred from the Newborn Hearing Screening Programme
Stevens, J., Sutton, G., et al. (2011).
England: NHS Newborn Hearing Screening Programme Clinical Group, 41 pages.
Added: July 2012

Description
This consensus-based guideline provides recommendation for the early audiologic assessment of infants referred from the newborn hearing screening program.

Recommendations
Parents should immediately be provided with information that explains the results of the assessment. The information should include the reason and procedure for each test.  Professionals should be available to answer questions, provide support, and guide the parents on appropriate follow up as needed.

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    Client/Patient/Caregiver Perspectives

    Parents’ of Deaf Children Evaluative Accounts of the Process and Practice of Universal Newborn Hearing Screening
    Young, A., & Tattersall, H. (2005).
    Journal of Deaf Studies & Deaf Education, 10(2), 134-145.
    Added: July 2012

    Description:
    This article presents the results of an interview of 45 parents of children correctly identified with deafness in the Newborn Hearing Screening Programme of England.

    Conclusions

    • The experiences of parents fell into one of three broad themes:

      • The parents felt little or no cause for concern regarding the inconclusive message.

      • The parents felt that the inconclusive message was concerning, but the concern was not associated with the screening process.

      • The parents felt that the inconclusive message was concerning and linked to the screening process.

    • Seven of 45 families in the sample found the screening process to be unsatisfactory.

    • Two factors that the parents felt impacted their anxiety as a result of the screening processes included the manner in which the screener went about his or her job and the explanations provided.

    • Most parents in this sample thought that downplaying the possibility that the screening result might have indicated deafness was appropriate, however three couples in particular noted that they would have preferred if someone had acknowledged that deafness was one of the possible reasons for not passing the screen.

    • Parents expressed a desired for an explanation as to why the screening result might be inconclusive and reported far less satisfaction with the screening process and more anxiety when they were given a ‘vague’ message or questionable explanations.

    • Two couples in this sample misunderstood the screening process and believed that referral indicated that their child was definitely deaf.

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    Parents’ Needs Following Identification of Childhood Hearing Loss
    Fitzpatrick, E., Angus, D., et al. (2008).
    American Journal of Audiology, 17(1), 38-49.
    Added: July 2012

    Description:
    This is a qualitative study exploring the needs of parents following identification of their child’s hearing loss.  Seventeen families in Ontario, Canada participated in semi-structured interviews.

    Conclusions

    • Some parents expressed dissatisfaction with the manner of the communication of the diagnosis.

    • Another need acknowledged by families was support from other parents.

    • “Families who strongly embraced parent support suggested that should be an integral part of the health care system” as opposed to leaving it as the responsibility of a volunteer parents’ group.

    • Most parents were satisfied with the medical and technical aspects of hearing care received through clinics. Parents indicated a need for information at the time of diagnosis and for ongoing information throughout the continuum of care, especially regarding technology.

    • Most parents felt that information regarding therapy options was adequately presented by the clinic audiologist or social worker, though there were several families that expressed inadequate support in locating resources.

    • Several parents suggested improved access to resources by way of a resource room at the diagnostic or rehabilitation center or a list of recommended internet sites.

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    Parent and Professional Perspectives on the Western Australian Infant Hearing Screening Program
    Sutherland, J., Remine, M. D., et al. (2008).
    Deafness & Education International, 10(3), 168-188.
    Added: July 2012

    Description:
    This study collects information from parents, newborn hearing screeners, and Telethon Speech and Hearing (TSH) professionals from the Western Australian Infant Screening for Hearing (WISH) Program. Questionnaire responses were obtained from 17 participants (51.6% response rate; six parents, five screeners, and six TSH professionals).

    Conclusions

    • Parents reported that some of their concerns were addressed in early intervention sessions, but a counseling appointment early in the process may be beneficial.

    • Parents were happy with the communication provided by WISH, though one parent noted that the reassurance gave a false sense of hope.

    • Parents were generally satisfied with support services. Specifically parents indicated that they were well informed of early intervention options, and opportunities to meet with other parents. One parent suggested increase privacy when receiving results.

    • Parents as well as screeners noted a need for more information about WISH services prior to meeting with screeners.

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    Infant Hearing Loss in South Africa: Age of Intervention and Parental Needs for Support
    van der Spuy, T., & Pottas, L. (2008).
    International Journal of Audiology, 47(Suppl 1), S30-S35.
    Added: July 2012

    Description:
    This study explores the needs of parents of infants with hearing loss in South Africa. Data were collected by means of questionnaire and group discussion with 54 parents.

    Conclusions

    • Parents were generally satisfied with the communication of the diagnosis, however still viewed the experience as traumatic and emotional.

    • Parents indicated a specific need to be involved with only one audiologist throughout the process of diagnosis and early intervention and wished for this person to act as both a skilled clinician and empathetic counselor.

    • The availability of information was expressed as a need and should be provided in a written and understandable format. Parents desired information about technological trends and most recent knowledge.

    • Parents indicated a major need to have contact with other parents of hearing impaired children and noted that they would be interested in participating in a parent support group.

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