Support to Parents/Carers
Written by Jessica Balfour-Ogilvy and Emma Rushbrooke
As professionals working in an early intervention (EI) center for children with hearing loss, we know that parents/carers are essential to the successful outcomes of children who are deaf or hard of hearing. Parents need significant support, information and education to enable them to manage their child’s needs. This can be achieved with a family-centered model of care to supports both the child and the family.
The majority (>90%) of children diagnosed with hearing loss are born to typically hearing parents. There is often no family history of hearing loss, and most families have no experience with hearing loss. As a result, parents may feel a level of shock and confusion at diagnosis, as they come to terms with the realization that their new baby or child has a potentially disabling condition.
In supporting parents to successfully manage their child’s hearing loss, we need to acknowledge:
- The varied reactions of parents to the diagnosis of hearing loss.
- The factors influencing the family’s ability to adapt to change/cope during the intervention process.
- The effects of hearing loss on the entire family.
“The key to a successful integration of hearing loss into a family is the degree to which parents are able to integrate hearing loss into their lives.” (David Luterman, in Children with Hearing Loss: A Family Guide).
Parents must quickly learn about their child’s hearing loss and make important decisions about management. They have a multitude of choices, with an abundance of information and many resources available for children who are deaf or hard of hearing and their families. So much so, it can be very overwhelming. Professionals in this field need to assist parents in navigating through this information so that they are able to make informed choices.
These decisions are made during a time of turmoil, when the immediate and extended family are beginning the process of accepting the hearing loss. Most parents are unaware of other families in similar circumstances and may feel very alone.
Families may have varied reactions to the diagnosis of hearing loss, as well as a range of coping responses throughout the intervention process. The hopes and dreams of parents for their child may be changed or lost and this leads to much uncertainty. Recovering from this depends on the parent’s ability to separate from the lost hopes and dreams, and then to generate new ones. Parent’s may experience intense grief as they try to make sense of this loss (Kurtzer-White & Luterman, 2003). Grief is often described in stages and it is important to note that there is no right or wrong way to experience this process and the stages do not adhere to a strict order; there are no defined beginning or end points to the range of emotions.
These emotional reactions may include (as cited in Kubler-Ross & Kessler, 2005):
Parents may also experience feelings of inadequacy, helplessness and guilt. Early parent-child relationships and bonding are at risk when a child is diagnosed with a hearing loss. Some parents fear not being able to communicate with their deaf baby. It may comfort parents if they realize that their baby’s hearing loss is normal to their baby – it is those people around their baby who must learn new things. Reinforce to parents the importance of continuing to communicate naturally with their child in every way they can.
How can we help?
Professionals should work as a team with parents, enabling them to make informed choices in relation to their child’s hearing loss, the technology to be fitted and their choice of early intervention program. These decisions need to move quickly in order to give each child the maximum opportunity to learn to listen and speak. As professionals, we can supports families to restore their hopes and dreams and become confident advocates for their child. Having a key person allocated as a child’s case manager and collaboratively establishing developmental goals is also critical. The Center for the Developing Child at Harvard University stresses that just one stable, consistent and supportive caregiver can make the difference in a child and family’s ability to cope and bounce back from adversity.
The earlier a child’s hearing loss is diagnosed and managed with hearing technology and EI support, the greater a child’s opportunity to achieve optimal listening and spoken language outcomes. Audiologists and Listening and Spoken Language Specialists need to work collaboratively with parents. Recognition of parents as partners achieves the best outcomes for children who are deaf or hard of hearing, enabling parents to move quickly to navigate their choices and options and be confident as their child’s natural language teacher. EI professionals have an obligation to provide both information and emotional support to parents. Luterman also notes the importance of listening and the provision safe, non-judgmental support to enable parents to work out solutions for themselves and their family. Sometimes we may need to throw out a planned session agenda and just listen!
Social Workers and Psychologists are important members of this interdisciplinary team and provide support, guidance and counseling to parents. This support varies depending on each individual’s needs throughout their EI journey. Sometimes we need to remind parents to look after themselves, as this will assist them to provide the best care and support to their child.
Make sure parents know that they are not alone.
Development of parent networking opportunities can help to reduce feelings of isolation and stress. At the Hear and Say Centre in Australia, we have found it valuable to establish early parent to parent support groups and provide families with a sense of belonging. We start with a babies and parents group, providing relevant education and resources to parents as well as facilitating connections with other families who have a child who is deaf or hard of hearing. These regular groups continue throughout early childhood, providing group opportunities and activities to both children and parents.
Jessica Balfour-Ogilvy, BAAppSci (Speech Pathology); LSLS Cert AVT; DipLM, CPSP, is the Clinical Manager, Listening and Spoken Language, at the Hear and Say Centre, Australia.
Emma Rushbrooke, MPhil (Audiology), BA, DipAud, MAudSA, LSLS Cert AVT, RNC, is the Clinical Director at the Hear and Say Centre, Australia.