Running Header: Vulnerable Population and Self-Awareness Paper 1

Vulnerable Population and Self-Awareness Paper

Emily Humphrey, RN

NUR440

October 11, 2010

Instructor: Peggy Taylor

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Vulnerable Population and Self-Awareness Paper

I have spent the majority of my nursing career working with people with developmental

disabilities, or Intellectual Disabilities (ID). For this reason I choose to look at patients with

Down Syndrome as a vulnerable population. What makes this population vulnerable is that there

can be a lack in communicating information depending on the severity of the disability as well as

the amount of interaction of practitioners with caregivers. There also can be behaviors that could

lead to lack of medical care: “Family physicians may be unwilling to take on care of individuals

with ID as patients for a number of reasons including inadequate training in the field of ID,

discomfort dealing with the communication and behavioral challenges common in individuals

with ID” (Minnes, p. 251).

These developmental disabilities, or ID, can make the patients vulnerable to further

medical conditions, as stated in an article written by Evenhuis: “Research indicates that specific

populations of people with intellectual disabilities have particular health risks” (Evenhuis, p.

177). During the past few years, there has been a push for moving patients with developmental

disabilities out of large institutions and into smaller community based care-homes. Because some

patients have been in larger institutions, they are at risk for exposure to infectious diseases:

“Previous or current residence in large institutions place many people with intellectual

disabilities at risk for past or present exposure to a number of infectious diseases, including

tuberculosis” (Evenhuis, p. 180). In an article from Child: Care, Health and Development I read

the following: “Parents in this study reported unanimous concern about the lack of knowledge
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about developmental syndromes and practitioner discomfort or lack of understanding in working

with persons with ID” (Minnes, p. 255). This shows how patients with these types of conditions

can become vulnerable in acquiring health care. Away from the larger institutions, facilities,

physicians may not be as knowledgeable or use to caring for these patients. This, along with a

lack of communication and possible behaviors can be barriers in them receiving adequate health

care.

In my work, I find nurses and care providers, are reporting information to the physicians,

primary care and specialty, regarding the everyday needs as well as recent illnesses. I believe this

is because some of them are not able to speak for themselves. Even if some patients can

verbalize what is happening, I see physicians, especially the specialists, turning to the nursing

staff for information instead of asking the patient directly.

Some patients with Down Syndrome have been described as passive, wanting to please

others, loving and non-confrontational. I have seen this as well as them being very trusting and

caring. They are very “child-like” concerning care: very trusting. I have assisted physicians in

doing physical exams, including annual pelvic exams, on patients with Down Syndrome. They

can be very compliant.

When an invasive procedure or exam is done, they tend to respond as children do:

panicked, upset, crying, and acting out. “Several parents wondered whether the level of

functioning of their child influenced the quality of the relationships with practitioners. In one

case, we were told that a daughter’s ‘hysterical’ first reaction to a Pap smear test meant that she

was never tested again” (Minnes, p. 254). Having seen firsthand these reactions, I can see how

this could occur, especially in the community or home settings. This is another way this

population can be vulnerable in receiving adequate health care. Just because a population is
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resistive to routine medical or health related procedures does not mean they should be excluded

from routine screenings. Where I work, we use sedation as needed to help the patient relax for

the exam. We also try to book together exams to decrease the anxiety as well. Desensitizing

activities can be utilized. “Presently, however, there is no research to suggest that preventative

health practices that are recommended for the general population, throughout the life-span,

should be withheld from people with intellectual disabilities” (Evenhuis, p. 181).

I spent five years doing home health nursing in the state of Georgia. One of our patients

was a young woman who lived with her elderly father. She had Down Syndrome. I discovered

that the majority of nurses did not want to go and do the teaching or interact with her or her

father. Once it was learned that I had experience with the developmentally disabled, I was

assigned as her primary nurse. I soon learned that the father could be “overbearing” wanting to

be involved in every way with the weekly visits. I took my time and spoke with him as well as

with her, developed a rapport and soon learned his “overbearing” was his way of advocating for

his daughter and seeing that she was getting the care she needed. Once he saw that I had her best

interest in mind as well as my background of working with Down Syndrome as well as other

developmental disabilities, he seemed to relax. I was sure to relay this information to my

coworkers and instruct them on some of her needs. They seemed surprised that I was gearing my

instructions toward her as well as toward her father. It turns out they thought that because she

had Down Syndrome she could not be taught self-care skills. With the help of her father, we

could teach her to weigh herself in the mornings to help monitor her congestive heart failure

(CHF). She was also able to list some of the warning signs we wanted her to tell her father or

teacher about at her job.

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From the research I did for this paper I learned how different it can be for patients with

Down Syndrome, and their families, living in the community setting compared to institutions. In

our facility we have a medical doctor on-call, on grounds 24 hours a day. We have around the

clock nursing care as well. Our clients have easy access to dental care, pharmaceuticals, and

other clinical needs. They are also at risk for some communicable infections, like tuberculosis. In

the community setting there can be a delay in care as well as the lack of knowledge that can lead

to the barriers already listed.

We have doctors who primarily prescribe conventional medications. We also have

doctors who will incorporate alternative medications as well. From some of my reading I learned

that these patients in the community face barriers to this: “The above themes of communication

barriers and frustration intensified when parents' accounts specifically addressed

Complimentary/alternative medicine (CAM). Parents characterized a range of physician

responses, from supportive to passively and actively inhibitory” (Prussing, p. 491). The study

mentioned two ideas that the parents emphasized regarding what they: “perceive between 1) the

current realities of tension and frustration that parents experience in their efforts to communicate

with pediatricians, and which intensify as parents' concerns fall farther outside of the scope of

conventional biomedical topics; and 2) an ideal but less commonly experienced scenario, in

which pediatricians support parents as consumers of health services, collaborating with them as

they evaluate a range of biomedical and non-biomedical therapeutic options” (Prussing, p. 492).

I have agreed with the move of moving some of our clients into the community,

normalization they call it here in California. I have learned more about what the face when they

live in the community and wonder if it is a good idea for some of these individuals. Would they

receive the care they deserve and currently receive? Am I being biased for not wanting them to
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be moved out? I always have believed that some of our clients could be better served in the

community, and that keeping them in an institution was lending to the stereotyping of those with

Down Syndrome or other developmental disabilities. After doing research for this I began to

think that moving them to the community may not be what is best for them.
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References

Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B. (2001). Healthy ageing-

adults with intellectual disabilities, physical health issues. Journal of Applied Research in

Intellectual Disabilities, 2001, Vol. 14 Issue 3, p175, 20p

Minnes, P., & Steiner, K. (2009). Parent views on enhancing the quality of health care for their

children with fragile X syndrome, autism or Down syndrome. Child: Care, Health &

Development, 35(2), 250-256. doi:10.1111/j.1365-2214.2008.00931.x.

Prussing, E., Sobo, E., Walker, E., Dennis, K., & Kurtin, P. (2004). Communicating with

pediatricians about complementary/alternative medicine: perspectives from parents of

children with Down syndrome. Ambulatory Pediatrics, 4(6), 488-494.