Danielle Nyholm and Dr. Barbara Mandleco, Nursing
Main Text
Parents raising a child with disabilities (CWD) are subject to a unique experience that is often accompanied by many challenges not experienced by a parent raising normally developing children. The experience requires extensive time and money, and the parents endure many stressors resulting in exhaustion (Green, 2007). In addition, Kelso, French, and Fernandez (2005) found stressors for two-parent families of a CWD include the process of diagnosis, treatment decisions, the ability to function spontaneously as a family, schooling for their child, and lack of professional attention to their CWD. If two-parent families experience these difficulties, single-parent families will likely have increased stressors related to being solely responsible for the child. These unique challenges/stressors should be studied, since there is minimal literature exploring the topic.
There has been little research on the impacts of raising a CWD on single-parents, since most research focuses on traditional two-parent families (Green, 2007; Kelso, French, & Fernandez, 2005). Additional research is needed to learn about these parents’ experiences and how to provide appropriate interventions for these families. The purpose of this study was to talk to single parents about their experiences raising a CWD, determine the effects of this experience on their lives, and learn what nurses can do to assist these families cope with their situation.
The sample is composed of participants from the Families Adapting to a Child with a Disability or Chronic Condition study that has ongoing BYU IRB approval. The sample for this pilot study included five single parents, all female. The CWD include four males and one female, ranging in age from five to eighteen years old. Their disabilities include Autism Spectrum Disorder, Asperger Syndrome, and Trisomy 9. The study used qualitative methodology to analyze audio-taped responses to semi-structured interview questions that had been transcribed.
A variety of responses were received when participants were asked what has been difficult about raising their CWD. Many responses were child-oriented. Three of the five participants said that their child did not sleep well and the child is “extremely hyperactive”. Three parents stated they experience impaired communication with the child (ex: “couldn’t communicate so he tantrumed”, “difficult to explain things to”). Three stated their child demonstrated inappropriate behavior in social situations. Two parents mentioned the child was difficult to feed (ex: “picky eater”). Two parents also stated that the child becomes over-focused on things (ex: “he gets stuck on one thing and that’s all he talks about”). One parent mentioned the child was “medically fragile” and this was a great stressor to her. The major parent-oriented difficulty associated with raising a CWD was marital stress. Three parents stated that this was a challenge for their family (ex: “his dad couldn’t handle it anymore”, “my husband was in non-acceptance”).
In response to what has been rewarding in raising their CWD, the majority of the mothers mentioned aspects of the child’s character. Four stated they enjoy their child’s loving and affectionate nature (ex: “loves things so much”, “kind soul”). Three parents said their CWD is more caring than a typically developing child (ex: “sees beauty in things other kids don’t”, “cares and is worried about anything and everybody”). Two parents stated their child is open-minded and very fun-loving. Three of the parents also mentioned the rewarding impact raising a CWD has had on their lives and said it has been an enlightening experience (ex: “helps me view the world from a different perspective”, “worldly things don’t matter as much”).
When asked what have been useful resources to the single parent raising a CWD, four of the five parents stated care-giving relief or respite care (ex: “the resource of relief is huge). Two parents mentioned that an early intervention program was important (ex: “the early intervention program is what directed us to…a possible diagnosis”). Some parents mentioned online resources, and some said other parents raising a CWD have been a great resource (ex: “it’s nice to know you are not alone”). Other helpful resources mentioned include the school system, a resource center (ex: “The Utah Parent Center”), therapists, pediatricians, and books.
When asked what resources would be helpful if available to them, two parents said they wished there was greater respite care availability (ex: “we’re still on the waiting list for respite care”). Other resources mentioned include an in-home aid, counseling for the parent and child, and more therapy focused on social and functional skills. One parent mentioned wanting a compilation of all the resources because there is “so much information out there that stuff can get missed”.
When asked what has been difficult about raising a CWD specifically related to being the sole parental caregiver, three parents stated that caring for their CWD is time-demanding (ex: “it’s constant, all the time, 24/7”, “I don’t have any time for myself”). Three parents also said they do not get a break from care-giving (ex: “full-time attention-giving”). Two parents mentioned that they have to fill many different roles (ex: “trying to be a parent, trying to be the primary provider, trying to be his advocate”), and also that their life revolves around their CWD’s routine (ex: “I can’t pursue the education or social life I want”). Finally, two parents also mentioned the increased financial responsibility as the only provider (ex: “I have to work full time”).
This study revealed raising a CWD adds extra stressors to a single parent. These include increased time demands due to disability, difficultly communicating with the child, and constantly worrying about the child. Secondly, it revealed raising a CWD can be more difficult for a single parent than it is for a two-parent family. This is because parenting is not a team effort in these families; there is less care-giving relief available and increased financial responsibility for the sole parent. Although there are many helpful resources available to single parents raising a CWD, there is still a need for additional resources to help these families. The results from this study were presented in the 2010 Brigham Young University College of Nursing Research Conference.
A major limitation of this study is the small sample size; more research is needed to draw conclusive evidence. In addition, it would be beneficial to study single parents raising a CWD in different geographical locations. Despite these limitations, this study provides some interesting topics that can be further researched. Research topics could include discovering the relationship between the marital stress resulting from raising a CWD and the decision to divorce, comparisons between single-parent families and two-parent families, and exploring the role of nurses in educating parents with a CWD.
References
- Green, S. E. (2007). “We’re tired, not sad”:Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64(1), 150-163.
- Kelso, T., French, D., & Fernandez, M., (2005). Stress and coping in primary caregivers of children with a disability: A qualitative study using the Lazarus and Folkman process model of coping. Journal of Research in Special Educational Needs, 5(1), 3-10.