Pregnancy and disability
Pregnancy is defined as “the state of carrying a growing embryo or foetus in the uterus”. It can also be defined as the “period between the implantation of the zygote and the delivery of the foetus or termination of any other kind”. Disability is a broad terms that encompasses limitation of activity, restriction of participation and impairments. Limitation of activity is characterized by difficulties in the execution of a given task while impairments refer to a problem with the functions or structure of the body. An impairment could be cognitive, developmental, sensory or physical. Participation restriction hinders an individual from participating in normal functions in different set ups. According to estimates by the United Nations, there are about 650 million individuals worldwide who are disabled .
Pregnancy is an important period of a woman’s life marked by anticipation and joy. Special care is required for pregnant women. Disabled persons are recognized as a special category of people thus there are several acts that have been implemented in order to ensure they have access to health care. In 2006, the United Nations rights came up with the first treaty in the 21 century that protects the rights of the disabled individuals in addition to access to equal opportunities. Disabled pregnant women experience several challenges thus it is important to address the challenges that they encounter.
Overall estimates indicate that the number of disabled women in the United States of America ranges from 16.8 to 26.8 million women. This means that one out of every five women is disabled . A great number of these women are of child bearing age and they often experience great challenges in accessing health care services during their pregnancy. The overall care of pregnant women in the United States of America is handled by various departments. For instance in Texas, the health care provision to pregnant women falls under the jurisdiction of the Department of the Health Care services. The Case Management for Children and Pregnant Women is also charged with taking care of pregnant women. Disabling conditions such as Multiple Sclerosis and Spinal Cord Injuries have low prevalence rates among women of child bearing age. The severity of these conditions makes it necessary for the women to receive specialized prenatal care. Pregnancy in women is associated with fatigue, weight gain, frequent urinary tract infections, increased fluid retention and dysfunction of the bladder . Disabled women experience far greater challenges with these problems. It is reported that in the United States of America, most disabled pregnant women have a negative attitude towards their pregnancy in addition to having problems to accessing prenatal care . Access to prenatal care for disabled pregnant women is a challenge across all states including Texas.
Disabling conditions such as Multiple Sclerosis and Systemic Lupus can result in complications during pregnancy therefore women who suffer from these conditions require medical attention during the pregnancy, before and after the pregnancy. Women with systemic lupus are likely to have an increased risk of losing the foetus, retardation of the foetus, preeclampsia and premature aging of the placenta as they grow older . Women who have spinal cord injuries have increased chances of developing autonomic dysreflexia at all stages of their pregnancy therefore require close monitoring in order to prevent this from happening. Women with multiple sclerosis are capable of carrying a pregnancy to full term but there is a great risk of development of post- partum complications for such women. It is therefore necessary for women with disabilities to receive counseling prior to getting pregnant in addition to a medical evaluation so as to determine whether it would be prudent to be pregnant. For those who are already pregnant, prenatal care should revolve around monitoring the health of the mother and the foetus so as to ensure that any complications arising are adequately addressed.
In addition to the health problems that are faced by women with disabilities, there are also economic challenges that they face. In Houston, Texas where my study was conducted, women with disabilities often have a difficult time getting and keeping a job. They therefore have to depend on their family members for their sustenance which may prove to be difficult particularly if the family is not well off. When these women get pregnant and they need extra care during their pregnancy, the family may not be in a position to meet such needs. As a result some of the women have to depend on Medicaid in order to access prenatal care. Some of them manage to get to health centers regularly but some of them cannot even afford to get to the hospital hence they simply stay at home .
As a community health nurse, my assessment of the care of pregnant women with disabilities is that access to prenatal care by pregnant women with disabilities remains a challenge. Nationwide, there is little research that has been done in regard to pregnancy among women with disabilities . On the state level particularly Texas, research on the numbers of pregnant women with disabilities is virtually nonexistent. As a result, the women with disabilities in Texas have to make do with the current programs that are available which have little regard for them. For instance, there are almost no provisions for home based prenatal care services for women with disabilities provided by the state yet some the disabled women have impaired mobility and their socio economic status cannot allow them to hire private nurses. The real magnitude of the health concerns of the pregnant women with disabilities is not clearly understood not only in Texas but also at a national level. This is because surveys on pregnant women performed nationwide or at the state levels rarely include tools for women with disabilities. These women therefore remain a forgotten lot; in Texas and at the national level.
Based on my assessment of the provision of prenatal services for disabled pregnant women, I decided to conduct a survey on the provision of prenatal care to disabled pregnant women at a local community in Texas. The survey is aimed at evaluating the availability and accessibility of the services.
The initial stage of my survey involved the involvement of the relevant stake holders. To begin with, I collaborated with the Department of the Health Care Services in order to find statistics on the number of women with disabilities of child bearing age in Houston, Texas. It was necessary to visit the hospitals within the community in order to obtain records on the number of the pregnant women using the prenatal services at the hospital and the number of disabled pregnant women who use the prenatal services at the hospitals. The survey involved 3 hospitals within the chosen community: two government owned facilities and one privately owned facility. In the course of conducting my survey, I interviewed the gynecologists at the hospital, the nurses and the women with disabilities who are pregnant. The doctors and the nurses provided information on the range of services available to pregnant women with disabilities, the cost and the challenges in the provision of the services. The women with disabilities who are pregnant provided information on the quality of the services provided at the health facilities and the accessibility of the services. They also provided information on the challenges they experience as disabled pregnant women. In the course of conducting my survey, I interviewed a sample of the women given that it would not be possible to survey the entire population of disabled pregnant women who go the health facility. The survey involved 50 women with disabilities drawn from the three health facilities. 90% of the women were already pregnant while the rest were women who are planning to conceive.
With the help of the nurses, I shall arrange to meet the women with disabilities who utilize the prenatal services at each of the three chosen facilities. I shall meet with the women and aptly describe what the survey is about and request for their participation in the survey. Once they have agreed to participate in the survey, I assigned each of them a unique identifier and obtain written consent from them. During my next meeting with them, I asked them a set of question from a prepared questionnaire and fill in the answer. The aim of the interview was to establish the views on the accessibility of the prenatal services in addition to the quality of the services provided. I assigned specific days on which I visited each of the three facilities in order to avoid any form of mix up while gathering the information. The next phase entailed interviewing the gynecologists at the chosen health facilities. This entailed conducting an interview which involved posing guided questions regarding the prenatal services available to disabled pregnant women. After that, I interviewed the nurses who provide prenatal services to disabled women. I sought to establish their views on the range of services offered and also establish how often the disabled women seek the services.
In the course of carrying out the survey, I incurred several costs. I often had to travel to and from the facilities. I also had to print out the questionnaires. The total cost of implementing the project was $ 200.
The project was a success to a large extent given that I was gathered all the information I had set out to obtain. In the course of carrying out the survey, I realized that my study area was small hence in future I would want to study a bigger region in order to obtain more information on the study subject. I also had a very short time to conduct the study and had to find time to conduct the study while studying. This proved to be quite challenging hence in future I would like to conduct a study over a longer period of time. On some days, the weather conditions were so bad that getting to my destination would prove to be difficult. Given that I relied on public transport to get to my destination during the project, I often found myself having to post pone conducting the interviews. Some of the participants would fail to show up on the agreed days which proved to be a setback since I had to squeeze in time to meet them. This added to the work load which proved to be a daunting task since I had limited time to carry out the study.
Analysis of the results
The results of the survey revealed that the disabled women had limited access to prenatal services given that they often had to rely on other people to get them to the hospital. According to some of the participants, this proved to be a challenge since sometimes those expected to take them to hospital had to be at other places. Therefore the women would miss out on the appointments hence their attendance of prenatal care inconsistent. The prenatal services provided to the women who are disabled are largely underfunded in government hospitals. In the course of carrying out the survey, the nurses at government facilities revealed that they did not receive specialized training on the care of disabled pregnant women. Whenever they had an opportunity to receive training, only a few of them could attend the training sessions at a time. The duration of the training programs was also limited therefore the programs was rushed giving them a rough idea instead of in depth understanding of the care of disabled pregnant women. This is a reflection of what had been found during other studies. It has been found that in the United States of America, health professionals are ill equipped to handle the needs of disabled pregnant women.
In the course of carrying out the survey, some women declined to give their views on the subject. I later learnt that in some cultures especially in the Middle East, the disabled are rarely let out, let alone allowed to talk. They are hidden from the public since they are considered an embarrassment. The situation is made worse if they become pregnant and they are not yet married. The families shun them and in some cases, they are not allowed to carry the pregnancy to full term. This made difficult to get perspectives from pregnant women who are disabled from the Middle East.
Given that most of the disabled women who were pregnant had already encountered discrimination from those around them, there were concerns raised by the hospital staff as to whether conducting the survey would have psychological effects on them. They expressed their concerns about the confidentiality of the information obtained. I tackled this by assuring them that information obtained from the study would not reveal any personal information. I also allowed any of the women who were uncomfortable with the interviews to opt out of the study.
Initially, it proved to be a daunting task to obtain information from the Department of Health Services in Texas. The staffs were unresponsive to my request and kept giving me indefinite answers to my questions. In order to circumvent this, I spoke to a renowned professor at a local hospital who was conducting studies on pregnant women. With one phone call to the Department, he helped me obtain all the information I required to conduct the study. The hospital administrators at the private hospital did not want me to conduct the study at the hospital initially. They said that they were not sure if I was actually a student at the university and if the study was authorized by the school. I obtained several recommendations from the dean of students and the school in order to prove my intentions. After several attempts, they agreed to let me conduct the study at the hospital.
Role of the Community’s Nurse in the Project
The primary role of nurses in any community is that there are care givers and as a result they interact with the patients and the society in general on regular basis compared to the doctors. In this specific project, the responsibility of the nurse shall be limited to prevention of cases of diseases amongst the pregnant women. In order to fulfill this mandate, the community nurse can use some of the following strategies: the nurses can sensitize the pregnant on ways of preventing disease infection especially in relation to lifestyle choices such as their nutritional patterns and the role of exercise in the whole affair. The secondary role of nurses involves thwarting the advancement of a condition. In this case, the nurse could come up with interventions aimed at reducing the occurrence of complications arising in disabled pregnant women. The tertiary role is about the rehabilitation and control efforts. The community nurse can perform this role by counseling pregnant disabled women on the potential risks that these women are predisposed to not only as a result of their disability but also their pregnancy and how to reduce the risks.
It would be suitable to survey a wider geographical region during future studies given that research on pregnant disabled women is limited. In addition to that, it would be advisable to study other parameters such as the cost of prenatal care given to disabled pregnant women. This would aid in the identification of the challenges posed to disabled women based on the cost therefore pave way for programs aimed at improving the services.
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US Census Bureau. (2004, July 3). Disability status of the civilian noninstitutionalized population by sex and selected characteristics for the United States and Puerto Rico: 2000(PHC-T-32). Retrieved June 2, 2012, from www.census.gov/population/www/cen2000/phc-t32.html.