Being told that their child cannot hear may leave parents feeling devastated, confused and in disbelief. The common questions are usually, “What do you mean by hard of hearing or profoundly deaf?” or “How can my child be deaf; no one in the family is deaf?”
A PhD research study by Dr Ronel Davids, from the Social Work Department at the University of the Western Cape (UWC), looked at developing guidelines to assist hearing parents with raising a child with a hearing loss.
She said what parents need to know is that 90%–95% of children with a hearing loss are born to hearing parents who often know very little or nothing about the condition.
The challenge is that the involvement of parents and family in the child’s early years of intervention is pivotal, but parents often lack the support.
“Initially, hearing loss becomes a defining issue in a family with the arrival of a deaf child. It affects family dynamics and family interrelations. As expected, parenting under these trying circumstances presents its unique challenges. For instance, communication with their child is difficult – there is often very little or no social support and access to information, causing parents to struggle to develop effective parent child-rearing skills,” said Dr Davids.
“One of the first questions parents often ask is: ‘How will I communicate with my child?’ It is often the most challenging issue because parents usually know very little about the communication options available to them.
The key to learning and language development is the same – for the family and child to interact with one another.
“Adding to the complexities of parenting is the lack of data on the prevalence of child hearing loss in South Africa. If this was available, efficient and effective programmes could be developed to assist in the lack of parenting programmes that could focus on the specific needs and challenges parents have and face.”
Dr Davids’s attraction to the topic results from her engagement in the deaf community over the last 20 years. She saw the opportunity for an exploratory study new to her field to develop these and other guidelines for parents.
“It led me to observe the relationships between parents and their deaf child. I found that often children who are hearing-impaired tend to identify much better with the deaf community because they feel a sense of belonging there.
“My curiosity was always in trying to understand why their primary family was not where they felt a sense of belonging. Also, about whether parenting deaf children presents hearing parents with unique parenting challenges. I wanted to know how they were adapting to and managing these challenges as this is dependent on parents’ personal and social support, as well as the resources available to them.”
She found that early intervention programmes for both hearing parents and their children are crucial. “Parents have a need for social and emotional support to deal with the emotional impact of the diagnosis.
“This doesn’t apply only to parents, but to family members as well. Often family members’ reactions to the child’s disability, their culture, adaptation to the disability, and social support they offer, play a major role in the overall emotional support the parents and hearing-impaired child experience.
Dr Davids noted, “Parents often express feeling socially isolated and lonely when parenting a child with hearing loss. Frequently, some family members, or even one parent, may distance themselves from family and friends, as they feel embarrassed or fear the reaction of others.
“Unfortunately, stigmatisation and stereotyping still exist today, adding to the exclusion and isolation of parents and children with hearing loss. Strong social support can function as a buffer, act as protection, and provide parents with emotional support by means of encouragement, praise, and understanding. This in turn lessens the parents’ stress.”
Listed in her guidelines is limited research regarding hearing parents’ personal and social support and access to appropriate resources.
These challenges are further exacerbated by the lack of social and professional support provided to parents. Her recommendations include:
Guidance in parenting approaches to ensure parental self-efficacy
Offering support and information that is effective, family-centred, and strength-based to ensure confident and informed parenting
Facilitating partnerships between parents and practitioners (social workers, physiotherapists, speech therapists, occupational therapists, etc) to improve parent-child relationships.
It is envisaged that the specific guidelines developed in this study will inform future practice and the work of professionals, particularly in the field of child hearing loss, which includes the above mentioned health practitioners.
The study attempted to provide a solution based on collaborations in the form of guidelines, and lends itself to local relevance to influence policy issues in South Africa pertaining to the crucial need for parental support as government should design and facilitate programmes to strengthen families (Department of Social Development, 2013).
Its international relevance forms part of an international call for action for an adapted Global Coalition of Parents of Children who are Deaf or Hard of Hearing (GPOD) which calls for a research agenda through collaboration of practices in various countries (Moeller et al., 2013).