Optimizing Supports for Hearing Parents of Deaf and Hard-of-Hearing Children

The issue

With the initiation of universal newborn hearing screening, infants can be diagnosed as having a hearing loss even before parents have suspicions about it. Upon diagnosis, parents have to deal with related emotions and the diverse—and at times contradictory—information they receive. To help them navigate their way through the unfamiliar terrain, parents will turn to a multidisciplinary mix of professionals, as well as their informal network of extended family, friends, and community members. These supports serve as key resources for families as they navigate the service system and make decisions about communication options, intervention, and educational programming. Parents who feel supported and who have their needs met are more likely to follow-through on post-diagnostic services. The benefits gained from early identification of hearing loss thus are dependent on the strength of the interconnections among services and families and families’ perceptions about appropriateness of the support received. To identify helpful supports, attention must be given to families’ experiences with hearing loss and their support needs over time.

What we know and don’t know

Parents’ support needs. Both emotional and informational supports are helpful in reducing parents’ stress in parenting a deaf or hard-of-hearing (DHH) child. Information needs to span several areas: developmental, medical, educational, communication, and technological. Key sources for support include service providers, other parents of DHH children, friends, and extended-family members. Meeting other parents of children with hearing loss provides parents with social and emotional support and also helps with practical needs. We need to know more about the extent to which parents receive support from informal sources, particularly information that facilitates parenting a DHH child, as well as information that is incorrect or disruptive.

Multiple dimensions and functions of support. For support to be facilitative, it must match with the family’s needs. Services should be attentive to the diversity of families in terms of cultural identity, geographic location, ethnic/racial background and ways that families’ support needs evolve over time. More information is needed about preferred systems of family support for different subgroups, and ways that different types of support (e.g., emotional, tangible, and informational) serve distinct and complementary functions to reduce parents’ stress and supports child development.

Supports for children’s transition to school. The transition of DHH children into school can be a stressful time for parents as they move from a family-centered approach in early intervention to a more child-centric approach in school. Lack of communication and coordination between home, the preschool or early intervention program, and school can increase parents’ feelings of stress and act as barriers to a smooth transition. Improved evidence-based design of family support and more in-depth outcome information from families who receive different types of support during the transition to school is needed.

Support from a multi-agency network. Navigation of diverse programming options can be confusing and overwhelming for parents.  They may receive conflicting information from service agencies that work independently in a fragmented, “siloed” system, rather than in a coordinated, collaborative way. Greater attention is needed to ways that coordination and balanced partnerships can be improved across multiple agencies and sectors to help reduce parents’ stress, support a better quality of life, and promote parents’ informed decision-making and smoother access to services.

Implications

Supports for families of DHH children require an understanding of the broad range of supports that parents may draw from – formal and informal – and their specific functions in various contexts, including home, school, community, and service.

Agencies providing supports for families should be sensitive to the timing and types of support needs for diverse families. A family-centered approach that emphasizes informed choice and the need to be sensitive to the diverse needs and contexts of families would be of benefit not only in early intervention but also across multiple stages and transitions of the child’s development.

Services and program planners should consider ways to build upon the role and influence of each family’s informal support system of extended family, friends, and community in meeting family support needs. Ongoing opportunities for parents to meaningfully connect with other parents of DHH children should also be promoted.

Policies and practices that support coordinated and integrated multi-agency and multi-disciplinary service systems would be optimal. Multiple agencies need to develop clear understandings of each other’s roles and responsibilities.  They should work together with families to share information and provide support and advice to parents based around their individual family needs.

Posted on Jan. 31, 2019 by
Brenda T. Poon
School of Population & Public Health,
University of British Columbia
brenda.poon {at} ubc.ca

 

Further reading

Friedman Narr, R., & Kemmery, M. (2015). The Nature of Parent Support Provided by Parent Mentors for Families With Deaf/Hard-of-Hearing Children: Voices From the Start. Journal of Deaf Studies and Deaf Education, 20, 67–74. view details

Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best Practices in Family-Centered Early Intervention for Children Who Are Deaf or Hard of Hearing: An International Consensus Statement. Journal of Deaf Studies and Deaf Education, 18, 429–445. view details

Poon, B. T., & Zaidman-Zait, A. (2014). Social Support for Parents of Deaf Children: Moving Toward Contextualized Understanding. Journal of Deaf Studies and Deaf Education, 19, 176–188. view details

Zaidman-Zait, A., Most, T., Tarrasch, R., Haddad-eid, E., & Brand, D. (2016). The Impact of Childhood Hearing Loss on the Family: Mothers’ and Fathers’ Stress and Coping Resources. Journal of Deaf Studies and Deaf Education, 21, 23–33.view details