Michelle Groesbeck and Dr. Barbara Mandleco, BYU College of Nursing
The presence of a child with a chronic disability is often considered a major stressor, imposing profound effects on families. Currently, between 5-31% of children in the United States are afflicted with chronic disability; a trend that is deeply impacting families and society as expanding technology increases life expectancy for these children1. A number of studies have focused on families raising a child with a disability, but minimal information has been obtained about fathers and their experiences. The purpose of this project was to gain information about challenges and concerns fathers have along with resources they have utilized in raising their disabled child.
Nine fathers of disabled children were interviewed. These fathers were selected from a list of families that had previously participated in an ongoing study about family adaptation to illness conducted by my faculty mentor. I contacted fathers personally, obtained their consent to continue with the study, and conducted interviews either on the telephone or in person depending on their preference. Participants responded to nine open-ended questions in an audio-recorded interview. The questions focused on the challenges of having a child with a disability, lessons learned through the experience, availability and helpfulness of resources, as well as hopes and concerns for their child’s future. Interviews were transcribed verbatim, and analyzed using qualitative methodology.
The majority of fathers reported that the most challenging parts of raising their child were the need for repetition of teaching and the unpredictability of their child’s condition. Common describing words about the experience were slow progress, patience, hard work, and joy. In the words of one father, “It was like living in amber. Everything is extremely slow with her [disabled child]. Another child will learn baby skills, she will learn baby steps towards baby skills”. In describing his experience another father stated, “You had to have patience. A lot more patience than you would normally have to have (laughing), because he [disabled child] doesn’t think as we think, he doesn’t act as we do. You tell him something and most the time it doesn’t register. So you have to repeat it, and repeat it”. Another father talked about the unexpected nature of the experience, “It was challenging going anywhere, you never knew what to expect. You hoped for the best but you always knew something could set him [disabled child] off”.
Seven of the nine participants have learned tolerance, and more than half have eventually come to view this hardship as a blessing. When asked what he learned through the experience, one father related, “It’s hard to describe, really, some of the things I’ve learned…things that seemed important aren’t as important anymore. There’s a change in values, a change in perspective”. Another father mentioned that he learned “unconditional love, patience, and … that it’s ok to be different”.
Resources recommended as most beneficial were early intervention programs such as Kids On the Move (Orem, Utah) and social support groups such as William’s Syndrome Association (national). Kids On the Move is a program that educates parents on a daily basis about their child’s condition, what to watch for, and how to best take care of the child. The social support groups help facilitate gatherings for parents in similar circumstances allowing them to share experiences, feel a sense of belonging, and learn from one another.
Medical staff was mentioned as the next helpful resource, with pediatricians and psychiatrists most frequently referenced. Three fathers praised Shriners Hospital in Salt Lake City, Utah as an efficient and accommodating resource. The Internet was also mentioned as a beneficial source of information.
Conversely, public school systems and government-funded programs were frequently cited as challenging, rather than supportive, resources. Many fathers related feelings of discouragement when dealing with administrators in the public school system. State and federally funded respite programs, which are designed to give parents a short amount of time away from their child by either funding a stay at a care facility, or by providing care in the home, were appreciated by one father. However, he also expressed frustration resulting from infrequent visits by healthcare professionals. In addition, others do not receive respite from the government and several have been on waiting lists for years since their child’s birth. One father spoke about his experience with public school systems as well as government-funded programs saying, “We’re always fighting. Through the American Disabilities Act supposedly you have certain rights, but it’s a constant battle to try to get those rights, to get your fair share”.
Hopes and concerns for the child’s future were focused on their achieving the highest level of independence possible, and finding loving caretakers. The words of one father sum up nicely what many felt: “My hopes are that he’ll be able to find a way to fit into his portion of the world”. Nearly all fathers expressed concern about finding people to take care of their children after their own passing.
The results suggest that existing support groups should be continued and further developed in order to aid families throughout the child’s adolescent years. Currently, early intervention programs (Kids On the Move) only last until the child is three years old, and from that point public schools are the main support. A deeper evaluation of current effectiveness of public school systems is needed to ensure that parents are actively involved in making decisions about their child’s education.
Overall, the fathers in this study exhibited healthy adaptation to the presence of chronic illness. One participant discussed how he’s changed, “you’re a very different person for having gone through it all. You’re probably in many ways stronger and wiser than you would have been without her [disabled child]”. Another father said, “It doesn’t do any good to look back and say ‘Why did I do this? Why didn’t I do that?’ We got what we got, and we have to deal with what we have, and hopefully what we did before has helped what we’re doing now”. After passing through periods of grief, sorrow and heartache, these fathers have learned positive lessons from their experiences raising children with chronic disabilities.