Parents of Deaf and Hard-of-Hearing Children: Decision-Making and Involvement

The issue

‘Parents as partners’ has been a longstanding pillar of rehabilitation and education for deaf and hard-of-hearing (DHH) children. The notion of coaching parents to facilitate their child’s communication and social development is a recurring theme in various intervention approaches. Consistent with trends in health care, the field has shifted from a child-focused approach to family-centered care, where the parent is included as a recipient of services.

Service providers have embraced family-centered care as an approach to ensure that parents are engaged in all aspects of the intervention process for their DHH child. Informed decision-making and, more recently, shared decision-making are understood to be important components of this process. Although it is generally accepted that family engagement and shared decision-making are essential tenets of programs for DHH children, the field is somewhat in its infancy in understanding how these concepts are put into practice and whether or not they make a difference.

What we know

In the last 10-15 years, there has been increasing interest in understanding the role of parent decision-making and parent involvement in DHH children’s intervention/education programs. This is likely motivated in part by the issues that arise from newborn hearing screening. Within this model, parents are presented with a “problem” (your child has a hearing loss) instead of the typical model of parents approaching medical professionals when they have a concern regarding their DHH child.

While adapting to life with a new infant, parents also now are faced with important, potentially life-changing decisions about what types of intervention or education methods to use, and about hearing technology. For example, parents of children identified as having a mild audiological level or unilateral deafness need to decide whether to proceed with hearing aids. Parents of children identified as having severe to profound audiological levels routinely make decisions about proceeding with cochlear implant surgery before their child’s first birthday.

Studies have shown that having to make these choices coupled with learning about the impact of their child’s audiological levels in the early months, when it is not suspected or even noticeable, can be very stressful for parents. These early decisions are particularly poignant and have received attention from researchers in recent years. Much of what we know comes from studies involving parent interviews about the early process of learning about their child’s audiological level or about the need for cochlear implant technology. One dominant theme from parents is that they value the support from their health/education team as well as the learning and support that occurs from opportunities to interact with other parents. This need for support applies to all parents, regardless of the severity of their child’s identified audiological level.

There is good consensus that an important part of early intervention needs to center around supporting parents through these decision points in the early years.  However, decision support is required throughout the child’s developing years. Studies have shown that certain events in the child’s life that require decisions such as: school entry, changing schools, and transitioning from high school to post-secondary education or work, may trigger new emotions and can be particularly difficult for parents.

Parental engagement in their child’s intervention/education is now understood to be a key factor affecting outcomes for DHH children. While the early years of newborn hearing screening focused on screening yields, types of screening technologies, and early intervention practices, parent engagement is receiving more attention as an important dimension of the full spectrum of services.

What we don’t know

Research with parents has contributed to a better understanding of their needs and preferences, particularly in the early years. While there is general acceptance that parent support and coaching is a critical component of programs, there is a lack of evidence about the value of different models of care, or what parent coaching techniques are effective.  In sum, while we have professional opinions about what constitutes a good model or what works, we know little about what is most successful in helping parents to achieve the outcomes they envision for their children. Furthermore, we have little knowledge of how our service models should be adapted to respond to the needs of families of children with mild audiological levels and those of multicultural families.

Implications

Early intervention and education programs are encouraged to view support for decision-making and engagement in the communication development process as a core component of the basket of services that parents of DHH children receive.  For policy-makers, this may require rethinking of what constitutes ‘intervention’, particularly for those children who do not require intensive ongoing communication development support.

Posted on Jan. 31, 2019 by
Elizabeth Fitzpatrick
University of Ottawa
elizabeth.fitzpatrick@uottawa.ca

Further reading