Adults Living with Spina Bifida

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Spina bifida is a term commonly used to describe a group of various congenital abnormalities and anomalies that affect the development of the neural tube. It has been defined as one of the most severe congenital conditions harmonious with full life. The causes of spina bifida are largely unknown. However, a combination of genetic, environmental, and nutritional factors is presumed to cause it. Spina bifida poses a myriad of challenges to both children and adults who have it. Therefore, this paper will provide a review of the medical issues of adults living with spina bifida.

General Adult Health Care

The rate of survival for individuals with spina bifida has considerably increased over the past couple of years. Currently, the survival rate stands at between 50-94% (Watson, 2009). Despite this notable survival rate of patients into adulthood, there is scanty information published about the natural history of spina bifida. Basically, few published documents explain the medical condition of spina bifida and its long-term complications among the population. The majority of people living with spina bifida are estimated to be adults. Despite the eminence of adults living with spina bifida, little information is available about this age group as compared to children living with spina bifida (Sandler, 1997).

The number of infants born with spina bifida is increasing at a high rate every year. This population needs empowerment and inspiration as they grow into adulthood. As they grow, it is vital to help them transit well into their role in adulthood. They should be made to comprehend that their parents are not going to be by their side forever. Hence, it is imperative for them to begin the period of transition in earnest. They have to learn to take care of their own health needs and understand their responsibility in a given job.

Prior to the development in the management of spina bifida, the life expectancy of children born with this disorder was less than a year. However, there have been improvements in the management of adults with this disease, which allowed them to live active and happy lives. It would now be possible for them to work and even have children without much straining.

It is critical to prevent major problems because medical consequences of this disorder are continually developing. On average, more than 90% of cases of spina bifida have no connection to the family history of the patient. However, giving birth to a child with spina bifida increases the probability of the second child having the same condition.

According to Sandler (1997), when a child is living with spina bifida, it poses a lot of challenges to him. Nevertheless, the child requires special care for him to reach adulthood. The transition into adulthood requires the support of the family and the community. Sometimes, a personal care provider will help them adjust accordingly to adulthood and be able to live long and useful lives.

The increase of adults living with spina bifida can be associated with the recent development caused by the increasing survival of children with spina bifida. Pediatric centers manage children with spina bifida until they reach adulthood. However, they are incapable of establishing contact with specialist treatment centers upon reaching maturity. Pediatric centers help in identifying the location of any existing treatment centers for adults living with spina bifida. Nonetheless, the pediatric centers can also take care of adults with spina bifida if they are not able to identify adult treatment centers.

Little is known about what kind of services adults receive once they leave pediatric care. Some pediatric centres continue to track the progress of patients after they leave their centres. However, these practices remain focussed on issues related to spina bifida. Also, general practitioners typically take a dominant role in the daily management of adults living with spina bifida. They also play a key role in the early detection of spina bifida related complications.

The health of adults with spina bifida is determined by various factors. These include: severity of co-morbidities, level of lesion, age, access to medical care and amount of family care (Oppenheimer, 2007). High levels of lesion can cause cardiopulmonary problems. Adults with hydrocephalus and myelomeningocele are at high risk of suffering from cognitive difficulties. Recent studies have shown that the impact of age on the adults with spina bifida is due to the changes in the medical management of infants over the last generation. Also, adults who were born before the mid-1970s will have considerably different health than those born after 1980s.

Adults living with spina bifida can also suffer from other related chronic conditions such as cancer, hypertension, sexually transmitted diseases, and cancer. Researchers have not yet been able to establish the prevalence of these chronic conditions in adults living with spina bifida. However, it is imperative for the patient to undergo cancer screening to establish if they have developed cancer. Studies have shown that women with spina bifida have high risks of developing ovarian, breast and uterine cancer. The comparative risks of these different types of cancers in adults living with spina bifida are unknown, even though the risk factors associated with it are known. Also, it is not yet clear if adults with spina bifida have high risks for infections of sexually transmitted diseases. Nonetheless, recent studies have shown that young adults with spina bifida engage in less sexual activity.

Management of Adults Living with Spina Bifida

Different factors determine the management of adults living with spina bifida and related disabilities. It is largely determined by the presence of hydrocephalus and the level of the spina bifida lesion. The extent and nature of complications is capable of extremely affecting many body systems. The acquaintance with the primary care management of adults living with spina bifida will enable doctors to ensure that appropriate health maintenance occurs.

Adults living with spina bifida should find a doctor on their own whom they feel comfortable to talk with. Importantly, they need to get a doctor who understands how to take care of adults living with this disorder. Also, they need to take an insurance cover for themselves because the one they originally had expired when they attained the age of 18 years.

Adults should be encouraged to attend a routine assessment if they have not seen a specialist for a long time. Researchers have proved that active surveillance can elongate the life of a person living with spina bifida. This routine surveillance should involve consistent review of the urological, neurological and musculoskeletal systems. Any changes noted in neurological signs will indicate treatable underlying pathology. Clinicians are required to have a record of past neurological signs of a patient to be able to identify any serious ailment.

The Impacts of Spina Bifida

Adults living with spina bifida experience social isolation in their communities. This confines them to living independently and facing limited employment opportunities. They are bound to suffer from urological consequences of their condition and intellectual impairment. Nevertheless, it has been impossible to completely delineate the degree of disability of adults living with spina bifida.

Spina bifida can have an intense impact on the self-esteem of an individual. This can lead to strained relationships with friends, family, and partners. Also, the common problem of inconsistence may lead to a further loss of self-esteem. Lack of self-confidence can wear down the ability to participate fully in all aspects of daily life, including education and employment (Rubin & Crocker, 2006). Evidently, spina bifida inhibits a person’s independence. It is vital to have a caring primary care clinician who can aid the patient overcome these issues and participate fully in the society.

Also, spina bifida affects the sexual functioning of a patient by the mere fact that it affects the spinal cord. Normally, reproductive and sexuality issues become increasingly significant to young people as they approach adulthood. Unfortunately, children with spina bifida have mostly grown up being dependent on their parents. Hence, the emergence of sexuality issues can cause conflict between the person and his family.

According to Rubin & Crocker (2006), adults living with spina bifida also face extra unique challenges such as shoulder pain, shunt failure, progressing scoliosis and lymphedema. All these health challenges are related to health and mobility of the patient.

Future Research

More research is required in this medical field to better understand the longitudinal effects of childhood procedures and secondary conditions associated with spina bifida. There are different issues that need to be dwelt on widely. Some of the areas that require extensive research include sleep apnea, neurogenic bladders and ventricular shunts. It is vital to understand the long-term effects of intestinal augmentation, chronic bacteruria, and daily catherization. Also, understanding the risks of neurogenic cancer is beneficial to the medical practitioners. A complete study of all these issues will require adequate sample sizes. Future research studies would benefit from standardization of terminology and outcomes.

Conclusion

Adults living with spina bifida continue having increased medical needs compared to the general population. They experience complications caused by long-term abnormalities of urologic, musculoskeletal and normal neurological function. Conclusively, it is essential to conduct research that focuses primarily on adults living with spina bifida to easily understand the longitudinal effects of childhood procedures and late secondary conditions of spina bifida.

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