When we first started the study, there was very little research focusing on psychological and social issues in families and individuals with spina bifida.We wanted to be able to compare these families and individuals with those who do not have spina bifida (in research, we call thisa comparison group). To do this, we worked with 2 groups: 1 group focused on families with a child with spina bifida and the other group focused on families with a child who was typically developing. Both groups had children who were very similar in age and ethnicity.
Since there was so much we wanted to learn, we gathered a lot of information from families! We videotaped them playing games and talking together as a family. We interviewed parents about how they thought their children were doing with their academics, friendships, independence, health care, and future life challenges. We also asked parents and children to complete questionnaires on a variety of subjects, including the child's health, social skills, exercise and diet, family relationships, parents' relationships, academics, and independence. Teachers and health professionals also helped us by answering questions about how the child was doing. Since our participants our now young adults, we ask them about different things, such as romantic relationships, college, and jobs.
What Did We Learn So Far?
We have learned a lot from our work in this study! Here is a selection of some of our findings:
The mental health and parenting stress of both mothers and fathers affects the mental health of their children with time. This is similar for children with spina bifida and typically developing children.
Many children with spina bifida do not know much about their own health condition. Most children in our study had low-to-moderate knowledge about most issues related to spina bifida, especially how people get spina bifida and issues related to how individuals with this health condition function (i.e., mobility, catheterization, etc.).
The most important things that predict how a child will do academically, socially, and emotionally in the transition to adolescence are internal motivation, verbal intelligence, appropriate behavior, coping style, and physical appearance. This is pretty similar for both individuals with and without spina bifida.
Children with spina bifida may have difficulty with skills such as planning, initiating, and visual attention. Children who do well in these areas tend to have better social skills.