LIVED EXPERIENCE REPORT

INTRODUCTION

(Chen & Morgan, 2006), defines HCV as a disease caused by hepatitis C virus and which mostly affects the liver. Hepatitis C virus is blood-borne. In the initial stages, hepatitis C doesn’t have noticeable symptoms but after several years the liver is damaged, and symptoms start occurring. There is a loss of appetite, fatigue, nausea, jaundice, and stomach pain. The incubation period for hepatitis C disease is two weeks to six months. The first case of hepatitis C was reported in the 1970s. Currently, over 200 million people are infected with hepatitis C, and this constitutes to 3.3% of the world’s population which is a rise from 143 million people in 2015 (Chung & Baumert, 2014). Its occurrence is mostly in Central and East Asia and Africa. In 2015, about 167,000 people died from liver cancer and 326,000 from cirrhosis due to hepatitis C. In the journal (Sgorbini, O’Brien, & Jackson, 2009) it is unclear how 15%-25% of the people infected can clear the virus from their bodies without treatment. Once daily pill which is known as Zepatier was approved in January 2016 and its effectiveness is approximately 100%. There is no vaccine for Hepatitis C.

DISCUSSION

Aboriginal people, especially in Australia, face various challenges when living with hepatitis C. Discovery of Hepatitis raises stigma and shame about how the virus was transmitted. Stigma plays a role when the victims try to disclose their status to the community, family, or health workers at diagnosis. Stigma makes individuals unable to seek health (Treloar, et al., 2016). Shame makes the victims to be cut off from communal and family duties leading to loneliness and being cut from normal activities. Most of the Hepatitis C patients prefer not to seek medical attention due to the fear of the side effects. Medical is also expensive, and most of the aboriginal people can’t afford.  The unwillingness is brought by high competition in the attempt of accessing health facilities in the treatment of HCV. Additionally, the aboriginal people may be not psychologically ready to go through relatively arduous nature of Hepatitis C treatment (Westbrook & Dusheiko, 2016).  As a result of stigma, regrets, and the symptoms of the disease, the patients living with Hepatitis C become disrupted from the normal activities in life. They tend to behave differently with more of seeking isolation. Diagnosis of the patients with the hepatitis is a challenge as the symptom of the infection are not evident in early stages. The medication process is also long with the chances of taking multiple drugs due to a side effect of Hepatitis C. Aboriginal people living with HCV have shown poor communication especially during diagnosis of the disease. Those diagnosed at organizational setting tend to have poorer communication compared to those attended by family doctors (LauraE.Dowsett, StephanieCoward, DianeL.Lorenzetti, GailMacKean, & FionaClement, 2017). Poor communication is as a result psychological side effects such as mood swing or irritability.

Healthcare experiences and challenges of stigma on HCV patients.

Patients suffering from hepatitis C suffer discrimination even from the health care officers (Olson, Gardenier, & Jacobson, 2015). Due to this, they face numerous physical challenges such as weight loss. Body weakening is also evident with the patient being forced to take certain food. Patients become isolated. Isolations limit the contact with people who could offer physical assistance, and the recovery of the patients becomes next to impossible. Doctors find it challenging to offer medical assistance to this kind of people as they are aggressive and some have physical body weaknesses. Due to stigma and lack of attention, people suffering from chronic hepatitis C feel judged or shunned. Most of the time the doctors and nurses concentrate more in attending HCV patient illness and ignoring the guidance and emotional support towards the patients hence making them feel less valued or cared upon (CarlaTreloar, JakeRance, & MarkusBackmund, 2014).

Preference of care

Most of the patients prefer not to seek medical attention due to fear of discrimination. Hepatitis C treatment is also expensive and unaffordable to many aboriginal patients. Currently, sofosbuvir is sold at $1000 per day, and when it is combined with ledipasvir, its price becomes $1125 per day. The high cost makes some Hepatitis C patient use up to $150,000 during the treatment process (Chhatwal, Kanwal, Roberts, & Dunn, 2015). The scarcity of medical facilities also makes the patients unwilling to seek medical care.

Disruption of life

Once one discovers they have been infected with Hepatitis C virus, they tend to change their normal activities. They become depressed. Depression is accompanied by overwhelming sadness and recurrent thought of death which may lead to suicidal attempts. The hepatitis C patients sometimes feel worthlessness and guilt especially if they acquired the virus through avoidable circumstance. Due to negative thought, some turn to drug abuse and alcoholism. They also suffer from disturbed sleep patterns and changes in psychomotor activity (Webster, 2015).

Impact of diagnosis

Once the patients discover they are infected with Hepatitis C virus, they get shocked, and fear of death start ringing in their heads. This is facilitated by the lack of knowledge of the existence of the disease by many patients. Patients try to think now they got infected. Most of the married patient fear that they would infect their loved ones (Castro, Perazzo, Grinsztejn, Veloso, & Hyde, 2015). The patients struggle to come to terms that they are infected. The patient also has a fear of the treatment process, and it increases once they are told to avoid certain eating cultures such as greasy foods (Foster, Sulkowski, Karayiannis, & Thursz, 2015).

Poor communication with people and health officers.

During diagnosis, the patients tend to hold information about how they acquired the virus. Health officers find it hard to assist this kind of patients. Some of the patients also hold information from their friend and relatives. This kind of patients mostly develops psychosocial problems, where some become mentally ill. The disease overcome them, and they end up being affected by numerous health problems, and they face a danger of early death (Brener, et al., 2016).

CONCLUSION

Through the article, it is evident that the patients living with Hepatitis C often feel unsupported in their care, stigmatized, discriminated in relationships and at workplaces. They are continuously trying to cope with psychological, physical and personal symptoms of the illness. It is of great value to encourage the patients to live in healthy lifestyle such as engaging in body exercise. Exercise is key in reducing depression and anxiety which are as a result of hepatitis C. It is also necessary to treat all the patients equal, especially the aboriginal people, to make them appreciated. Equal treatment will strengthen their desire to seek medical attention. They should also be educated on the existence of the disease to increase the number of people who seek early medical attention. As a nurse, I am more motivated to undertake psychology courses to improve in the way of handling the patients of hepatitis especially those who have undergone through stigmatization and self-blame towards getting infected with the virus. It is necessary also to be more patient with the patients and encouraging them as they go through the process of medication in the hospitals. I am motivated to encourage fellow nurses to come up with the hospital to hospital mentor program where we will enlighten the young nurses on the need to take care of the patients as a way to make those suffering from the chronical disease to feel appreciated. Accumulation of hopefulness about the successful diagnosis of HCV, the patient, naturally and automatically improves on the emotional scale due to the reduction of negative thoughts and ends up getting away from depression.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

REFERENCES

Australia. Parliament. Senate. (2014). Parliamentary Debates (Hansard).: Senate. London: Commonwealth Government Printer.

Brener, L., Wilson, H., Jackson, L. C., Johnson, P., Saunders, V., & Treloar, C. (2016). Experiences of diagnosis, care, and treatment among Aboriginal people living with hepatitis. Indigenous Health, 62.

CarlaTreloar, JakeRance, & MarkusBackmund. (2014). Understanding Barriers to Hepatitis C Virus Care and Stigmatization From a Social Perspective. Supplement Article, 52.

Castro, R., Perazzo, H., Grinsztejn, B., Veloso, V. G., & Hyde, C. (2015). Chronic Hepatitis C: An Overview of Evidence on Epidemiology and Management from a Brazilian Perspective. International Journal of Hepatology, 10.

Chen, S. L., & Morgan, T. R. (2006). The Natural History of Hepatitis C Virus (HCV) Infection. International Journal of Medical Sciences, 47-52.

Chhatwal, J., Kanwal, F., Roberts, M. S., & Dunn, M. A. (2015). Cost-Effectiveness and Budget Impact of Hepatitis C Virus Treatment With Sofosbuvir and Ledipasvir in the United States. HHH Public Access, 17.

Chung, R. T., & Baumert, a. T. (2014). Curing Chronic Hepatitis C — The Arc of a Medical Triumph. The Hew England Journal of Medicine, 1576-1578.

Foster, G., Sulkowski, M., Karayiannis, P., & Thursz, M. (2015). Journal of Viral Hepatitis. Introducing the new services site, 1365-2893.

Hopwood, M., Treloar, C., & Bryant, J. (2006). Drugs: education, prevention, and policy. Hepatitis C and injecting-related discrimination in New South Wales, Australia, 61-75.

LauraE.Dowsett, StephanieCoward, DianeL.Lorenzetti, GailMacKean, & FionaClement. (2017). Canadian Journal of Gastroenterology and Hepatology. Living with Hepatitis C Virus: A Systematic Review and Narrative Synthesis of Qualitative Literature, 11.

Olson, M. C., Gardenier, D., & Jacobson, I. M. (2015). The Revolution of Hepatitis C Treatments: Review for Nurse Practitioners. The Journal for Nurse Practitioners, 116-123.

Sgorbini, M., O’Brien, L., & Jackson, D. (2009). Living with hepatitis C and treatment: the personal experiences of patients. Patients Perspective, 2282.

Treloar, C., & Rhodes, T. (2009). The Lived Experience of Hepatitis C and its Treatment Among Injecting Drug Users: Qualitative Synthesis. Qualitative Health Research, 1321-1334.

Treloar, C., Jackson, L. C., Gray, R., Newland, J., Wilson, H., Saunders, V., . . . Brener, L. (2016). Multiple stigmas, shame, and historical trauma compound the experience of Aboriginal Australians living with Hepatitis C. Health Sociology Review, 23.

Webster, D. P. (2015). Hepatitis C. The Lancent, 1124-1135.

Westbrook, R. H., & Dusheiko, G. (2016). Journal of Hepatology. Natural history of hepatitis C, S58-S68.

 

 

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