Furner-Marx, Janel

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Furner-Marx, Janel Powered By Docstoc
					                                      Janel Marx
The Lived Experience of Single Parents Raising Children with
                 Disabilities: A Pilot Study
       Faculty Mentor: Barbara Mandleco, Brigham Young University College of Nursing

Raising a child with disabilities (CWD) presents a unique experience and oftentimes is
accompanied with many challenges. It not only takes a lot time and money, but can also be
physically exhausting (Green, 2007). This responsibility is often distributed between two
parents: a father and a mother. However, in some cases, caring for a CWD becomes the sole
responsibility of one parent, due to divorce, death of a parent, or absence of marriage. In fact,
according to recent data, a CWD is more likely to grow up in a single-parent household than a
child without disabilities (Cohen, 2006).

If a two-parent family is faced with challenges when raising a CWD, a single parent will likely
face even greater challenges. For example, Loprest and Davidoff (2004) discovered 40% of the
single parents raising a CWD in their study did not have work compared to 34% of parents with
typically developing children. They also discovered the single parents of a CWD were more
likely to have “a limitation of activity (21 versus 9%), fair or poor health (22 versus 11%), or
receive SSI [disability benefits] (6 versus 3%)” (p. 176). Indeed, raising a CWD as a single
parent presents additional challenges to those challenges inherent in raising a CWD with two
parents in the home.

While some research has been completed on parents raising a CWD (Green, 2007; Olsen et al.,
1999; Olsen et al., 2003), there has been little research focusing on single parents. Certainly, it is
important to understand more than just the demographics of these families in order to provide
beneficial interventions for these families and understand their unique family situation. The
purpose of this study was to obtain information directly from single parents about their
experiences raising a CWD and to discover appropriate interventions. The sample was composed
of participants from the Families Adapting to a Child with a Disability/Chronic Condition study
that has ongoing BYU IRB approval. The sample for this study included seven single parents
(six female, one male). The CWD were nine to fourteen years old (3 female, four male). Their
disabilities included Spina Bifida, Autism Spectrum Disorder, Down Syndrome, deaf-blind,
OCD, anxiety, depression, and diabetes. The methodology of the study was audio-taped
responses to semi-structured interview questions. The responses were transcribed verbatim and
analyzed according to qualitative methodology.

A variety of responses were received when participants were asked what it was like raising their
CWD. Five of the seven participants mentioned both positive and negative aspects (ex: “one of
the hardest things but one of the greatest things I have ever done”, “so many incredible
experiences from miracles”). One participant mentioned only negative aspects (ex: “a lot of
work”, “he was really clingy”), while another particpant stated only positive aspects (ex:
“diabetes doesn’t limit you”). In addition, four of the seven praised their CWD (ex: “real
trooper”, “celestial being”, “thoughtful intellectual”, “absolute genius in school”). Some of the
parents even found some personal benefits to raising a CWD (ex: “better person”, “could be a
nurse”).
When asked was what was challenging about the experience the majority of the parents (five out
of seven) found things that were personally challenging (ex: “sleep deprived”, “have to take
breaks”). Four of the seven had worries about the unknown (ex: “He went a long time without
being diagnosed”). Three of the seven participants had worries about their child dying due to
complications and/or mentioned worries about parenthood. A few mentioned surgery as a
challenge. Some other challenges mentioned include no support, low on money, the school
system, and trying to make other people understand the disability.

The parents were also asked if they could change anything about how they raised their child what
would it be? One of the things mentioned included being more proactive. One mother mentioned
that she would have “like[d] to have raised him in a two parent family.” Another mother realized
that her child would have been better off if she had “looked into outside help sooner.” One parent
wished that he/she had been “more consistent with the discipline.” Another wished he/she had
kept the child more involved in his care.

While raising a CWD can be a challenging expereince, it can also provide some important life
lessons. Three of the seven participants stated that they had learned love and patience. Some
other things learned include the realization that you cannot punish the CWD “in the normal
way.” Other parents recognized the need to“accept that your life is going to be different”and
have a “sense of humor.” In addition, one participant mentioned that they learned “how to be
strong as a family.” Some of those raising a diabetic child learned the importance of a healthy
diet.

Single parents contribute a lot of their strength to the many helpful resources in their lives. Some
of the parents used more resources than others. Resources mentioned include: Utah School’s of
the Deaf/Blind, conferences, Division of Services for People with Disabilities, books, internet,
other parents, Utah Parent Center, doctors, Medicaid, Utah Department of Health, religion, social
skills group, experiences growing up, family, parenting classes, Primary Children’s, and
Diabetes Camp.

During the interviews, it became evident that some single parents of a CWD often resort to a
very active style of parenting. They feel that they need to fight for the needs of their child in an
often uncompromising world. One mother got involved in the legislature by putting together a
media campaign and getting other parents involved. Sometimes this active approach has to be
learned over time. One parent stated that she “had to be a fighter and that’s not my personality at
all.” School represents an area where parents need to play an active role. As one parent said,
“school’s a big battle ground. You have to really make sure that your child is getting the right
education.” Another parent states her concern, “It’s all about money in the schools [. . .] and
certainly never taking my opinions into account even though I live with him 24-7 and know him
better than his therapists do.” While the previous two comments show concern for public
schools, one parent felt that private schools were not always the best solution. “I put him in
private school when he started kindergarten and I don’t know if I would do that again. [. . .] I
think the public schools [. . .] aren’t that bad if you can get in and you are an active parent and
you are involved in the schools.”
This study revealed some interesting considerations that might benefit from additional research.
The first consideration is whether raising a CWD may have contributed to divorce. As one parent
put it, “in some ways our husbands don’t feel needed because we’re so consumed with our kids.”
Perhaps husbands feel excluded when mothers of CWD focus on their child instead of the
relationship. There are many stressors that are involved with raising a CWD and may lead to
disharmony in the relationship. Secondly, it is important to consider if the after-effects of divorce
can actually contribute to diagnosing the disability. One mother felt that the divorce increased
the symptoms of the disability in the child thus allowing her to get the help needed, “I got
divorced [. . .] she had these other problems that of course I wasn’t really aware of, combined
with that it sort of made it, like, broaden out a lot more.” In addition, if the parent is involved on
a difficult marriage, he/she may be oblivious to the signs and symptoms the child is displaying.
The divorce may actually allow the parent to focus more on the child instead of a tulmultuous
relationship. One parent said, “after divorce [. . .] I was finally able to concentrate with what was
going on with my children.” Lastly, it is important to recognize that single parenthood can add an
extra burden to raising the CWD. Single parents may have less support and help on a daily basis,
“you don’t have nobody to share with you, outside of the kids.”

A major limitation of this study was the small sample size. Because the results were based on
only seven participants, more research is needed to draw conclusive evidence. In addition, it
would be beneficial to look at single parents that are in different geographical locations.
Furthermore, parents may have been biased in their responses because they were informed that
the study was focusing on single parents. Despite these limitations, this study provides some
interesting topics that can be further researched. Research topics could include discovering if
there is a relationship between raising a CWD and divorce, finding comparisons between single-
parent families and two-parent families, and exploring the role of nurses in educating parents
with a CWD. Additional research can serve as an aid to single parents raising a CWD. Perhaps
more parents will be able to say: “it has been absolutely a complete joy.”

                                                       References
Cohen, P., Petrescu-Prahova, M. (2006). Gendered living arrangements among children with disabilities. Journal of
         Marriage and Family, 68(3), 630-639.
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.
Loprest, P., & Davidoff, A. (2004). How children with special health care needs affect the employment decisions of
         low-income parents. Maternal and child health journal, 8(3), 171-182.
Olsen, S. R., Marshall, E. S., Mandleco, B. L., Allred, K. W., Dyches, T. T., Sansom, N. (1999). Support,
         communication, and hardiness in families with children with disabilities. Journal of Family Nursing, 5(3), 275-
         291.
Olsen, S. R., Marshall, E. S., Mandleco, B. L., Allred, K. W., Dyches, T. T., Sansom, N. (2003). “This is a spiritual
         experience”: perspectives of Latter-day Saint families living with a child with disabilities. Qualitative Health
         Research, 13(1), 57-76.