Being diagnosed with a chronic illness is a life-altering event. During this time, life is not only difficult for the patient, but also for their loved ones. Families must learn to cope together and to work out the best options for the patient and the rest of the family. Although it may not be fair at times, things may need to be centered on or around the patient no matter what the circumstance. (Abbott, 2003) Sacrifices may have to be made during difficult times. Many factors are involved when dealing with chronic illnesses. Coping with chronic illnesses alter many different emotions for the patients and the loved ones. Many changes occur that are very different and difficult to get used to. (Abbott, 2003) It is not easy for someone to sympathize with you when they haven’t been in the situation themselves. No matter how many books they read or people they talk to, they cannot come close to understanding.
Along with the problems of chronic illnesses themselves, many other problems may come. Treatments and medications are just the beginning of things when it comes to problems with illnesses. With cystic fibrosis, you start out with a high number of medications and treatments to begin with. The older you get and the worse your condition gets, the more you take. (“Psychological impact,” n.d.) Many struggles come along with taking these medications and treatments. When children are first diagnosed with cystic fibrosis, they are typically very young. From the beginning, there are many medications and treatments that needed to be taken and done. Sometimes, trying to get children to take medications and treatments is like pulling teeth. The medications for cystic fibrosis are extremely important. If cystic fibrosis patients miss medica...
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...will be my first year of walking in the Great Strides event for cystic fibrosis at the Cleveland Zoo. In order to walk you have to make a commitment of a certain amount of money to raise for the walk. I am beyond excited to participate in this walk and I cannot wait to find other ways to help out cystic fibrosis and other chronic illnesses.
Works Cited
- Abbott, J. (2003). Coping with Cystic Fibrosis. Journal of the Royal Society of
Medicine, Volume 96 (issue 43), 42-48.
-Psychosocial Impact. (n.d.). Retrieved from http://www.cysticfibrosis.org/uk/about- cf/living-with-cystic-fibrosis/psychosocial-impact.aspx. - Rothenberg, L. (2004). Breathing for a Living: A Memoir. New York City, New
York: Hyperion.
-Withers, A. (2012). Management Issues for Adolescents with Cystic Fibrosis.
Retrieved from http://www.hindawi.com/journals/pm/2012/134132/.
When it comes to a bad diagnosis it is often difficult for doctors to tell their patients this devastating news. The doctor will likely hold back from telling the patient the whole truth about their health because they believe the patient will become depressed. However, Schwartz argues that telling the patient the whole truth about their illness will cause depression and anxiety, but rather telling the patient the whole truth will empower and motivate the patient to make the most of their days. Many doctors will often also prescribe or offer treatment that will likely not help their health, but the doctors do so to make patients feel as though their may be a solution to the problem as they are unaware to the limited number of days they may have left. In comparison, people who are aware there is no cure to their diagnosis and many choose to live their last days not in the hospital or pain free from medications without a treatment holding them back. They can choose to live their last days with their family and will have more time and awareness to handle a will. Schwartz argues the importance of telling patients the truth about their diagnosis and communicating the person’s likely amount of time left as it will affect how the patient chooses to live their limited
In spite of the fact that there is no cure for cystic fibrosis, treatment can ease symptoms and decrease complications. Other forms of treatment include, chest physical therapy (CPT) used to loosen mucus up to four times each day. Pulmonary rehabilitation (PR) is another treatment physician’s recommend. PR is utilized to enhance lung capacity and general prosperity.
Sawicki, GS, Sellers, DE, Robinson, WM. 2009. High treatment burden in adults with cystic fibrosis: challenges to disease self-management. The Journal of Cystic Fibrosis 8(2), pp. 91-96.
A long term condition not only brings the physical symptom of pain, but a number of psychological and social effects too. In 2014 the Department of Health recognised that the impact of having a long term condition can contribute to mental health problems like depression and anxiety (Department of Health, 2014). As well as finding ways to manage their physical symptoms, patients are encouraged to adopt acknowledge and address all of their health and wellbeing needs, in particular self-management at home and incorporating and educating the patient’s family and close friends as a support system (Kraaimaat and Evers, 2003). The suffering that a person with chronic pain endures not only impacts on their life, but also affects their family, time lost from employment and uses up precious healthcare resources.
A widely accepted Caucasian disease has since changed; as cases of its existence are appearing in the South Asian Population (Orenstein, Rosenstein and Stern, 2000). First discovered in 1989, Cystic Fibrosis (CF) is a genetically predetermined condition, its presences is lifelong and highly complex, which is why many CF sufferers and families develop various mechanisms in order to adapt to the condition (Tippingemail, Scholes, Cox, 2010). Cystic Fibrosis causes the body to develop thick, sticky mucus which clogs the lungs and affects other organs in the body, mainly the pancreas. The layer of mucus if untreated develops in to a chronic infection which can be detrimental. The pancreas of a CF patient is most vulnerable, once the mucus has reached this organ, it halts digestive enzymes from reaching the intestines which aid in absorbing food, therefore affecting nearby organs (Davies, Alton, and Bush, 2007). Currently there are 9,000 people diagnosed with CF in England (CF Trust, 2011). It has been estimated that there is 1 in 10,000 South Asian sufferers in the UK alone (Kabra, Kabra, Lodha, Ghosh, Kapil et al, 2003; McCormick, Green, Mehta, 2002). Prior research-based literature that focuses on people with CF and their families covers some of the experience of living with the disease but displays some major gaps; none has specifically targeted South Asian individuals. Cross culturally this is also the case; the limited availability of CF research has influenced scientists to devote more attention in this area. For instance, information in regards to CF in Egypt is very limited; firstly CF has been believed to occur infrequently as there has not been a sufficient amount of known CF cases. Naguib, Schrijver, Gardner, Pique, Doss, Ze...
Cystic fibrosis (CF) is a genetic disease which weakens the lung. It is characterised by the development of thick mucus that blocks the lungs, intestines and other ducts or passageways which can cause breathing problems and infections. This mucus also prevents the intestines from properly digesting and absorbing nutrients, such as fat, protein, fat-soluble vitamins and certain minerals, from food which increases the frequency and severity of illnesses and infections, especially of the lungs. As a result, individuals with CF need to eat a diet that is high in calories, fat, protein and fat-soluble vitamin to compensate for this digestion issue. Additionally, extra calories and nutrients are needed to fight infections and keep the
I also walked with the Purplestride.org fund raising to end Cancer. I volunteered my free time cooking and feeding the homeless around San Diego with friends and classmates while attending San Diego Continuous Education Program. After completing my nursing degree, I am looking forward to the opportunity to reach out to the multitude in the underserved community.
Cystic Fibrosis is an autosomal recessive disease created by mutations in both copies of the cystic fibrosis transmembrane conductance regulator gene or the CFTR gene. This means a person must inherit the recessive gene from both parents to have cystic fibrosis. The CFTR gene codes for an ion channel protein that conducts chloride ions across the epithelial cell membranes of the passageways of the respiratory, digestive, and reproductive systems. Mutations of the transmembrane conductance regulator gene causes malfunctions of these chloride ion channels resulting in a decrease in fluid transport of affected organs leading to cystic fibrosis. These CFTR gene malfunctions are due to a lack of production, failure to reach its site of action due
Youth with CF also deal with more health risk behavior. These risk factors include smoking daily, using cannabis, and performing antisocial or violent acts. These risk factors usually come in clusters and increase in age. Many factors contribute to this behavior like age, gender, academic track, and parents' education level, all differences except alcohol misuse remained significant. People with CF more likely to be depressed, and more likely to rate their health as poor. The climate can also put a person with CF under more stress if ...
I decided to participate in the challenge because I know two friends of the family suffering from ALS. After I did the challenge, I felt really fulfilled and happy that I was doing something good. I'm glad that I could take part in something that will help the world. Before, I talked about how we are supposed to elevate our actions onto the spiritual level. Even though it was just simple bucket of ice being dropped on my head, it felt like more than that.
In cystic fibrosis, a genetical condition that has a high population of young patients with multiple medical treatment requirements, it is of clinical importance to ensure compliance to their treatments in order to avoid a premature death. Behavioural economics can help here by addressing how we improve motivation with and perceived value of medical treatments – to improve overall patient compliance. In treatment compliance with children, up to 70% of patients with chronic illnesses have poor adherence (Haynes RB, 2002). Poor adherence to cystic fibrosis therapies may result in increased disease symptoms, decrease physical functioning, increased time in hospital, morbidity rates and mortality, as such an increased healthcare costs (Vibeke Bregnballe, 2011). Therefore the more compliant the more cost-effective treatments become, and the healthier the patients stays. It is also important to note that for every drug skipped represents a financial loss. Capgemini group reported in 2013 that the worldwide cost of non-adherence to be estimated at 564 billion dollars. So, if we get childre...
Cystic Fibrosis (CF) is the most common life threatening genetic condition in Australia. CF affects many of the body’s systems, including lungs and digestion. Improved medication and treatments have seen life expectancy extend considerably. (Cystic Fibrosis Queensland, 2014)
...concerns appropriate interventions were assigned to each one. For the priority concern of the family’s ability to cope and their risk of depression commendation and interventative questioning were the chosen interventions. For the priority concern of Gilberts care giver burnout and risk for compassion fatigue commendation and encouraging respite were chosen. The Grape family is a fitting example of the complex difficulties a family can have when they are faced with the difficulty of dealing with a chronic illness and tragedy. This paper demonstrates the importance of assessing and creating interventions for a family in a way which includes every member of the family not only the ones with complications. Raising the question should patients who are suffering from chronic illnesses better off to be treated as an individual or as a member of a functional family unit?
The uncertain nature of chronic illness takes many forms, but all are long-term and cannot be cured. The nature of chronic illness raises hesitation. It can disturb anyone, irrespective of demographics or traditions. It fluctuates lives and generates various inquiries for the patient. Chronic illness few clear features involve: long-lasting; can be managed but not cured; impacts quality of life; and contribute to stress. Chronic illnesses can be enigmatic. They often take considerable time to identify, they are imperceptible and often carry a stigma because there is little sympathetic or social support. Many patients receive inconsistent diagnoses at first and treatments deviate on an individual level. Nevertheless, some circumstances require
... the context of chronic illness: a family health promoting process. Journal of Nursing and Healthcare of Chronis Illness 3, (3), 283-92.