Healthy Families of Children who are Deaf:
Research Study Findings
By Ann Velaski-Sebald and John Luckner, Ed.D.
Purpose of Study
The purpose of this study was to interview healthy families of children who are deaf. We wanted to examine factors that contributed to families' health and to gather suggestions for other families of children who are deaf and for professionals within the field of deaf education.
Procedure
All deaf education teachers within the state of Colorado were sent a letter asking them to nominate a healthy family who had a child who was deaf. The letter included information detailing (a) the study's purpose, (b) the definition of a family, (c) the definition of a healthy family, and (d) a request to nominate any family who had a child who was deaf (75 dB or greater, ages 4 to 18 years). Two families self-nominated and these were confirmed by the child's deaf education service provider.
Participants
Nominated families were contacted and asked if they would like to participate in the study. Those agreeing were given the choice to be interviewed face-to-face, e-mail, or phone. Nineteen of the thirty-three nominated families agreed to participate in the study.
Data Collection and Data Analysis
Family members were asked to respond to the eight questions listed below. Interviews were transcribed and coded for themes. The coding process included a systemic transformation of the data looking for naturally occurring trends. Units of information were then categorized. Both authors analyzed the data to help clarify interpretations.
Results
We examined the data from each set of interviews and identified several factors that contributed to families' health. Families varied in several areas: professional backgrounds, income levels, and ages of children. Despite these differences, several themes emerged.
You have been described as a healthy family who has a child who is deaf. Why do you think you have been successful?
- Commitment to family.
- Learning to sign with their child.
- Support from extended family, friends, and members of the community.
- Support from the professionals working at the educational program their child attends.
- High expectations for the child with a hearing loss.
What challenges have you had to overcome?
- Finding a good educational program and getting the appropriate services.
- Learning to sign.
- Helping people understand deafness.
- Finances.
- Friendships for the child who is deaf.
Have professionals helped you? If so, how?
The following professionals were consistently identified as being helpful: teachers of students who are deaf or hard of hearing, audiologists, interpreters, and speech language therapists . Professionals provided emotional support, taught sign, gave additional speech therapy, and shared information about communication choices, speech, cochlear implants, use of amplification and applying for financial assistance.
Have professionals hindered the family? If so, how? The medical profession was the most often identified obstacle for families. Challenges reported were in getting their child identified with a hearing loss. Additionally, those within the medical profession who espoused a "fix-it" philosophy were reported as hindering the family. The second most identified obstacle for families were professionals within the field of deafness who professed a strong bias toward a specific communication methodology.
What advice do you have for other families of children who are deaf?
- Gather information to identify resources and learn what rights your child has.
- Have high expectations for your child.
- Learn sign language.
- Be involved in your child's education.
- Love and encourage your child daily.
What advice do you have for professionals who work with families who have a child who is deaf?
- Be supportive, understanding and encouraging.
- Keep in mind that parents know their child and their family needs best.
- Be a resource who gathers and provides information to the family.
- Get to know the child.
Is there anything else you would like to add?
- Reiterated previously shared suggestions
- Felt blessed
- Reminded parents to love their child who is deaf as well as each other
Please indicate which member(s) of the family participated in responding to the questions.
Mothers were the person who most often reported for families, followed by both parents, and finally, all family members.
Conclusion
It was a privilege to interview the families who participated in this study. Learning from each family was enjoyable and refreshing. It was indeed an honor to be invited to take a snapshot of their lives. We thank them for their willingness to share their personal stories with us. We invite educational programs and families to use this information as a catalyst for discussion. Simultaneously, we suggest that this type of research be replicated and expanded. It would be beneficial to (a) collect quantitative as well as qualitative data, (b) focus on families who have children who are hard of hearing as well as those who are deaf, and (c) conduct a longitudinal study to see how families develop over time.
See the full text of the article: Luckner, J.L. & Velaski, A. (2004). Healthy families of children who are deaf. American Annals of the Deaf, 149(4), 324-335. Luckner and Velaski-Sebald (doctoral candidate) are with the National Center on Low-Incidence Disabilities at the University of Northern Colorado |
