Impact of raising a child with Down syndrome on family dynamics

Down Syndrome

Impact on the Family of Children with Down Syndrome

Impact on the Family with a Down Syndrome Child

IMPACT: "Siblings of Handicapped Children: A Developmental Perspective on Family Interactions." This article (Vadasay, et al. 1984) in the Family Relations journal points to several characteristics that are connected to the increased vulnerability siblings experience when a handicapped child is in their family. The article also asserts that all family relationships, and the marriage of the parents, are dramatically affected by a handicapped child's "characteristics and special needs."

One of the dynamics that occurs in a family with a Down Syndrome (DS) child is that the other siblings are often reticent to approach their parents with their troubles. The other siblings are thinking that their issues can't be nearly as pressing or as important to their parents as are the problems of their handicapped sibling. The spin-off of that dynamic, according to the Family Relations article, is that the siblings who are reluctant to approach their parents with problems are at risk for emotional problems of their own. Sisters of a handicapped child are particularly vulnerable to this possibility, the article states.

That having been said, however, if the siblings are intimately involved in the therapy and the training of the retarded brother or sister, the whole family may find that process beneficial. In a research study published in the Family Relations article, the writers report on a survey of 83 non-handicapped college age siblings of retarded children (17% of their DS siblings were "severely retarded"; 35% were moderately retarded; 47% "mildly retarded") which concluded that about 45% of those 83 students believed that they "had benefited from having a retarded sibling." What were those benefits? One, a better understanding of what other people go through; two, additional compassion and tolerance; three a much greater appreciation for the fact that they were healthy and blessed with normal abilities.

However, another 45% reported negative remembrances of those family experiences when a DS person was in the house; the negatives from those 45% were guilt; a sense that they were neglected by their parents; shame; and a lack of positive feelings toward the DS sibling. There was more embarrassment for the normal student if the DS sibling was of the same sex; and in a two-child family, the non-retarded child felt more pressure to make up for what the DS sibling lacked, which placed pressure on the "normal" child.

In another study reported in the Family Relations article, mothers of 233 retarded children were asked to rate the interactions of normal and retarded children in their families; 34% of the sisters, and 51% of the brothers did indeed participate in activities with their retarded sibling (in instances where the retarded sibling was no more than 4 years younger or older than the non-retarded sibling).

This is highly relevant to the nursing field because every relevant study available shows that bringing the family into the patient's therapy dynamics strengthens the family, the patient, and emboldens the process.

IMPACT: "Stress and Parenting." An article in Down Syndrome Today (Devenny, 1993) alludes to some of the dynamics that parents go through with reference to their retarded children. Stress, which is part of parenting per se, is less of a problem when the DS child is higher functioning, and there is more stress for mothers of DS children during middle childhood (6 to 12 years of age) than during the adolescent or preschool periods. On the other hand, there is a tendency for a great deal of parental stress during infancy, because, as Devenny writes, a number of the life-threatening events that are associated with DS occur during this period, and "persist throughout childhood."

Also, the parents of DS children who exhibit behavior problems (hyperactivity, self-stimulating and self-abusive issues) are, as expected, placed under more stress than those parents of DS children who do not act up. Yet another source of stress that impacts the family of a DS child is that parents do not always accept or trust the experts' decisions that are made relative to their child. The parents sometimes feel that they are inadequate to deliver all the services that the professionals suggest should be delivered. Additional stress can be brought on, Devenny continues, when money issues come up and parents are on a tight budget. Medical bills can be prohibitively substantial, and those economic issues can sometimes continue from adolescence into adulthood.

A very professional nurse who has people skills to match his or her healthcare skills should be fully aware of all the concerns and fears (real or imagined) that the parents of a DS child go through. This is very pertinent to the nursing field since more and more nurses are doing the work that doctors once did, and data also shows that patients trust nurses often times more than they trust doctors.

INTERVENTION: the article in Down Syndrome Today ("Stress and Parenting") offers the fact that when the marital situation is stable in a family with a DS child, it is easier to cope with the stress. Parents should not isolate themselves, but rather they should develop a "supportive social network" to allow them to interact with other parents of DS children. Parents should also seek out new and helpful information about DS, and if parents do the research and keep up with their homework, they can become role models for other parents who struggle with the same issues. Nurses can certainly be of tremendous help to parents in the process of helping them become seekers of knowledge, become actively engaged in networking with other families, and also nurses can help parents integrate their non-retarded children into a program of therapy, using the entire family as a united front to cope with the DS dynamics and issues.

ASSESSMENT of INTERVENTION: An article in the Journal of Speech, Language, and Hearing Research (Fey, et al., 2006) shows research into what kind of effect "responsivity education/prelinguistic milieu teaching (RE/PMT) has on the parenting stress that usually accompanies the presence of a DS child in the family. In this research, fifty-one children between the ages of 24-33 months (all of whom had no more than 10 expressive words or hand signs at their disposal) were "randomly assigned" to treatment/no-treatment groups. The PMT, prelinguistic milieu teaching, is an intervention for children with language delays; children who quality for this intervention have "very limited or nonexistent lexical inventory" and also may be having "significant difficulties in their production of nonlinguistic communicative acts." In the research leading up to this project, the writers indicate that there is quite a bit of literature regarding the effects of the PMT approach to children with developmental disabilities, including those with DS. In fact, in one particular study (Yoder & Warren, 2001, 2002) reported in this article, children who received individual PMT displayed a greater ability to build "intentional communication" than did an alternate group of children who received a different kind of intervention.

What happened in the Yoder & Warren intervention was that developmentally disabled children who were part of the PMT intervention - who had "highly responsive" parents - showed faster growth in being able to make comments and were more adept at vocalization. As for children with DS in specifics, the children who did not received the RE/PMT intervention in the Yoder & Warren interventions "displayed faster growth in comments and word diversity"; and the reason for this, Fey explains, is that DS children are reluctant to persist in the finishing of a task when the situation calls for them to be significantly challenged, or when they are "not immediately successful."

Aside from the Yoder & Warren example, which is covered at great length in the article, of those among the 51 children in this particular study who had DS, there were no effects on the stress that parents are associated; of those who did not have DS, but were handicapped by developmental delays of another kind, there were "modest increases in receding of child acts" by their parents. The bottom line is, much research has been done and is being done to determine how to find a way to lesson the stress on parents of DS children; some research shows positive signs, and some does not.

ASSESSMENT of INTERVENTION: "Down syndrome screening expanded." One form of intervention into the realm of families having to learn to deal with a Down syndrome child is to be able to determine even before the child is born, if he or she may be at risk for DS. The Clinician Reviews article reports that the American College of Obstetricians and Gynecologists (ACOG) now suggests all pregnant women who are 20 weeks into their gestation be offered screening for "fetal chromosomal abnormalities" (aneuploidy: having the wrong number of chromosomes). The chances of finding out if a fetus are improved, the article states, if the diagnostic testing is conducted in a screened population vs. An "un-screened" population, the ACOG asserts.

There is "strong scientific evidence" that backs the use of nuchal translucency measurement (which detects how much fluid had accumulated behind the fetal neck) and also backs biochemical markers during the first-trimester screening. So, they are saying that the initial screening followed with a second round of screening have proved to have a detection rate as high as 84%, the article continues.

Also, integrated screening (combining the results of tests in the first and second-trimesters) has also proved to be valuable in terms of detection of DS during pregnancy. The problem with integrated screening, the article points out, is that there is quite a period of time from the initiation of the testing until completion. But the larger question is, what is a woman to do if indeed her baby has a mis-matched chromosome count? If it is caught early enough, would she consider an abortion? That is a moral and personal privacy issue, of course, but it is worth consideration given the issues that arise for a family with a DS child.

If a pregnant woman is screened properly during her first-trimester, and that test indicates that she is at "increased risk" of aneuploidy she should then be offered genetic counselling as an intervention, the article explains; and she should have the option of CVS (chroionic villus sampling) or at least second-trimester amniocentesis should be offered.

TRANSITIONING INTERVENTION: FROM HIGH SCHOOL to LIFE AFTER HIGH SCHOOL: Should every family with a DS child just assume that after high school that person is going to be home-bound and the family will have to gear up for having him or her around 24/7? Not necessarily at all. Indeed, the National Down Syndrome Society (NDSS) provides a helpful selection of reports for parents, healthcare professionals, and siblings too, outlining and specifying strategies for helping the DS person in the family, and hence, helping the family (and reducing stress levels for everyone involved). The fact of life for a DS patient is that once out of high school, certain educational support services are no longer mandated by federal and state laws. The full responsibility for the coordination of key resources falls in the lap of the family.

All the more reason for good planning. The "Transition Planning" brochure (PDF) provided by NDSS suggests that parents get involved in post-high school planning well before the end of high school. Indeed, beginning at age 14, a "transition plan" is required by law as a part of the Individualized Education Plan (IEP) for any student (with a disability). What opportunities are there for a person with Down syndrome after high school? There are many post-secondary educational opportunities, according to the NDSS brochure, assuming the person is capable of proceeding into an educational career. There are community college academic programs, vocational training programs (apprenticeships and trade schools); and there are "innovative programs" that combine in some form those two kinds of education.

For example, a DS student could take a vocational course like welding, or printing, and while at school, take a class relating to health or history or other subjects of interest to the person. It is important for the parent or family members to intervene in any post-secondary program well in advance, and find out if the school in question (community colleges are generally very flexible and community-friendly for all kinds of students) has the facilities and the educational requirements that are appropriate for the DS student.

If the DS person has the desire to advance into a college environment, the intervention should include a fully updated list of academic and vocational opportunities; knowledge of existing programs and entrance requirements "can help identify specific goals" for the DS student to pursue.

If the DS person wants to find a job after high school, there are several types of employment, NDSS explains. Those are jobs that can be found in the newspaper or online, that allow the DS person to work without support services; and there are "supported employment" jobs that provide near-constant supervision (or a "job coach") while in the workplace; and thirdly,

PREVALENCE of MEDICAL CONDITIONS LINKED to DOWN SYNDROME, and INTERVENTIONS INTO THOSE CONDITIONS: "Alopecia universalis in Down syndrome: Response to therapy." This article, published in the Indian Journal of Dermatology, Venereology and Leprology (Sethuraman, et al., 2006), outlines the various common dermatological conditions that accompany the DS child. This is pertinent to a nurse because along with the awkwardness, discrimination and embarrassing social stigma that are part of life for a child with DS, when a DS child has serious acne and other diseases affecting the skin, that is just one more negative piled on top a long list of negatives.

According to the article, the frequency of alopecia areata (sudden loss of hair in certain patches on the face and scalp) is reported to be "higher" in Down syndrome than in the general population, up to 8.9% higher, in fact. Beyond the hair loss, DS patients experience dermatological conditions such as folliculitis, atopy and vitilgo, along with increased incidence of syringomas, milia-like calcinosis, acanthosis nigricans and elastosis perforans serpiginosa.

An example is given in the article of an eight-year-old DS-inflicted boy who started losing his hair at the age of four; at first the hair loss was patchy, but in the last year or so there has been a progressive hair loss over his entire body. He was born to a woman 35 years of age, and there was an uneventful pregnancy and delivery. But the hair loss was a seriously embarrassing and ugly spectacle and this too is pertinent to a nurse because the research doesn't offer many interventions to provide help for this situation.