Survey Says! Health and Well Being of Caregiver…

Partners for A Greater Voice (PGV) completed an online parent survey in 2014 that was predominantly marketed through list-serves and email groups to families throughout the New England (U.S.A.). Of 256 responses to  22 questions, 90% were mothers and 9% were fathers. Nearly 80% had a college or advanced degree. Approximately 80% were parents with dhh children under the age of 13, and 94.6% had children with moderate/severe to profound hearing loss. The target market included parents who chose listening and spoken language as a primary communication modality.

We further delved into the developing world and created a separate survey specific to parents in the Dominican Republic, a population we had been working with for 14 years. Of the 166 responses to 38 questions, 70% were mothers, 17% were fathers, and others were grandparents, aunts and siblings. Approximately 43% had completed vocational training (4%), a degree program (23%) or an advanced university program (16%).  22% had completed primary school, 25% completed secondary school, and another 8% of parents who took our survey had received no education. All Dominican parents had school age children with varying degrees of deafness (60% had either severe or profound range).

Our intention was to gather information that would help us create a new curriculum focused on parent intervention called Essential Programs to Coach and Empower Caregivers. The results and information parents provided supported PGV’s new professional education. While many other services to families focus on the child and his/her outcomes, PGV’s program is geared directly to parent intervention and is comprised of six essential learning modules.

Regarding Health and Well-being section of our survey, parents responded in the following way:

A majority of American parents feel higher degrees of stress when they care for their child’s special needs. In the United States IDEA laws allow parents and pubic schools to advocate for specialized and individual education for children with disabilities. Inclusion has grown over the last 25 years, and schools now request that parents participate in their child’s individual education program (IEP). The added burden to become familiar with the law and to advocate for the needs of the child creates a stressful environment for many parents. Results from the PGV survey said that more than 40.8% of parents feel high degrees and extremely high degrees of stress and/or grief when caring for their child who is deaf or hard of hearing, and nearly 35% have moderate degrees of stress and grief. Grief was included in the survey because parents feel an emotional burden, often responding to the needs of their child with a burden of grief witnessed in IEP meetings and other situations. Further, 44.3% said they do not have time to care for themselves and when asked how they would most likely want to take care of themselves 70% chose cardiovascular exercise, 35.6% requested yoga, and 22% checked parent counseling. For the segment of parents who did take time to care for themeselves some responses included: 46.5% engage in cardiovascular exercise, 19% said they do yoga/meditation, and 10.8% checked parent consultation.

We observe that most low income parents in the Dominican Republic have limited access to hearing health services and parent support. These parents (and their children) often feel isolated. They endure high degrees of social stigmas and are often burdened with depression, shame and guilt. It may be surprising to find parents are less stressed in the Dominican Republic, given less support for disability services, poorer quality of education for children, and discrimination. Culturally, families learn to cope with adversity and hide their burden. They have a high degree of resilience though they are often burdened with basic needs. Their mind may not focus on the disability so much as these other needs. In many instances a child’s disability needs are ‘put off’ or a child’s disability is ignored.  Social, emotional and language development is compromised as a result. Caregivers often rely on doctors and schools to help their child and often do not see themselves as leaders of their child’s development.  PGV believes this is due to a cultural hierarchy and a belief system that authority and adminstration has carved into society. Futher investigation is needed, though qualtiative meetings with over 600 parents has imbued an urgent cry from parents to be heard and repeccted.

Our survey indicates that only 5% of Dominican parents feel extremely high or high degrees of both stress and grief when coping with their child’s hearing loss. There were 23% who admit to a moderate degrees of stress and 15% who cope with moderate degrees of grief.  When asked how they care for their health and well being, 31% felt a need to talk with someone else, 22% said they would do something nice for themsleves, 14% read, and 25% wanted to exercise. Results say that parents are most comfortable talking with professionals and parents about their needs and their child’s needs (41% teachers, 32% parents, 14% doctors. 10% other).

prepared and written by Joanne Travers, Founder/Director of Parents for A Greater Voice, Inc.  

Information from this article should be cited/referenced as: “Partners for A Greater Voice, Inc. Data from PGV Parent Education Survey 2014. Ipswich, Massachusetts U.S.A.