Emotional Well-Being of Parents Matters

By Candace Lindow-Davies  and Amy Szarkowski, PhD

Parents and caregivers of children who are deaf or hard of hearing (D/HH) experience diverse emotions, from joy and celebration to frustration and worry, regardless of whether parents and caregivers are D/HH or have typical hearing.

The emotional well-being of parents and caregivers raising children who are D/HH is important – yet it is too often overlooked. Those with newborns and young children are often challenged by the normal-yet-still-overwhelming demands and emotions associated with raising tiny humans (and may have difficulty trying to find time to brush their teeth). The identification of the child as D/HH can add to this a sense of being ill-equipped and unsure about their new role, which might even lead to panic. Additionally, within some families and cultural communities, perceptions of “disabilities” are negative, resulting in some families receiving conflicting messages from professionals and those closest to them about how best to raise their child. Alternatively, for some parents, emotional fortitude starts with their own families.

“My strength came from having no choice but to be strong! We were raised to be independent. We were raised to depend on no one but ourselves. When my mom was diagnosed with cancer, she made me promise to cry it all out and then drop it and be strong. That came naturally when my daughter was identified. So, in that sense, I raise my girls the same way. Get the crying out. Let out a really good cry and then keep going because regardless, the world will keep turning and the days will keep passing us by,” explained Nanette.

Identification of a child being D/HH, in some situations, may contribute to a reduced sense of parental self-efficacy, or “a sense of knowing how to parent a child who is D/HH,” which can be perceived differently by fathers and mothers (Dirks & Szarkowski, 2022). Overwhelming amounts of information (particularly when it is contradictory) regarding how to support their child – including communication opportunities, educational pathways, and technological options – can be paralyzing to some parents/caregivers.

How can parents/caregivers recognize their own needs, develop healthy practices, and seek help when needed?

How can professionals who serve families with children who are D/HH support parent/caregiver emotional well-being?

Perceived social support contributes to resilience and enhanced well-being among parents and caregivers (Lickenbrock & Whitman, 2010). When families have “someone to turn to,” they feel better able to handle parenting challenges that arise. Some parents and caregivers experience a reduction in stress as they learn more about their child and interventions to support the child. For other family members, “gaining knowledge” does not reduce stress, but establishing or tapping into their social networks can (Delive et al., 2006). Professionals are able to better support caregivers when they ask about the types of information that parents and caregivers most desire and how they learn best. This information should inform how professionals engage with families, such as whether they “start with the facts” or “start with the supports.”

Parents’ and caregivers’ emotional well-being of parents and caregivers impacts the child. The social and emotional development of infants and toddlers is influenced by caregivers’ attunement or sensitivity to the child, their emotional availability, and their engagement with the child (Bornstein, Suwalsky & Breakstone, 2012). Thus, optimizing children’s outcomes and promoting their success means that investing resources to bolster the emotional well-being of parents and caregivers is necessary, too.

Finding community can be one essential means of fostering parental emotional well-being.

Gaining personal insight and guidance from adults who are D/HH can be critical in helping parents and caregivers feel more confident in their abilities and in broadening their expectations for what it might mean to have a child who is D/HH.

In addition to connecting with other families and D/HH role models, parents benefit from devoting consistent attention to their well-being in practical ways. The Hands & Voices “Virtual Waiting Room” (https://handsandvoices.org/virtual-waiting-room/self-care.html), offers resources and suggestions to support self-care. (See sidebar below.)

Professionals can assist by being compassionate and inquiring about how the parents and caregivers themselves are doing (…and not only asking about how their child who is D/HH is doing or what progress the child is making). Ups and downs in emotional well-being are a part of this journey. It is important to normalize this for parents and caregivers. Gaining knowledge about caregiver emotional well-being, talking with families about well-being, and learning to recognize possible caregiver depression and other signs of emotional distress that are important.

Existing family challenges such as relationship issues, chemical dependency, mental health, or financial worries can further impact emotional well-being. For assistance beyond supporting parents’ and caregivers’ emotional well-being, such as addressing more on-going problems with mental health, it can be important for professionals to suggest families seek support from mental health providers and maintain updated lists of local resources (to address both immediate needs or emergencies and long-term support).

The emotional well-being of parents and caregivers truly matters. It is important for their own enjoyment of their child(ren) who are D/HH and for their child’s development, too. While emotional well-being may have ups and downs, finding support, building community, and taking care of oneself can make a difference. Many parents and caregivers report that, despite some challenging times, the payoff of joyfully nurturing a child’s growth and independence is incredibly rewarding.

Editor’s note: Candace Lindow-Davies serves as the Director of Outreach, H&V HQ, and Amy Szarkowski, PhD is the Director of The Institute at the Children’s Center for Communication/Beverly School for the Deaf, LEND, Boston Children’s Hospital, Institute for Community Inclusion (ICI), University of Massachusetts Boston.

H&V Communicator – Spring 2023