Self-Management Of Chronic Diseases: A Person Centered Approach – Case Study

Person-Centered Care

Chronic disease such as cystic fibrosis is considered non-curable and no medication can wipe it out. Medical practitioners have tirelessly researched on the cure for this disease, and the only thing they have managed to discover is the cocktail of drugs that is administered to these patients. This type of illness is so lethal such that at its worst levels it can lead to death. Sophie is one of the cystic fibrosis victims since the age of eight. The patient has put up with a lot of drugs to manage the condition where at times she would force thirty tablets of medication down her throat at a go. This, however, did not deter her from living with such a condition that limits life. She gave herself courage in finding a better way of managing her condition besides the drugs. As this paper is being written, she is one of the few celebrated individuals who defied all odds and managed to beat the norm. Sophie applies the concept of self-support manages through person centered care to manage her condition. This paper will focus on the self-support management and person-centered care as well as how Sophie has been able to apply it (Abramovitz, 2013).

This a way of thinking and doing things in such a way that individuals accessing the health and social services view them as equal partners in their health plans. This involves considering their families in the center of their decision and viewing them as experts who they can work together with to obtain the best outcomes (Adams, 2011).

Person-centered care does not just involve giving people whatever they require or passing the necessary information, but it is also about considering people’s values, desires, social circumstances, family situation and lifestyle to work together and develop sustainable solutions through viewing the person as an individual. Person-centered care also involves thinking from a person’s point of view and being respectful as well as compassionate. This is portrayed through providing help to patients to better manage their health. However, person-centered care is not only about activities it also considers what the patients and professionals think about care and their relationship. Another element that is an enabler of person-centered care is the self-management support. Self-management support is the kind of help provided to people ailing from long-term conditions to help them manage their health daily. According to research studies, people who are supported to manage their health, enjoy life, feel better and have less occasional visits to the GPs. Moreover, this move helps them increase self-confidence, quality of life, self-management behaviors as well as self-efficacy (Adams, & Grieder, 2014).

Person-centered care has the following benefits;

Improves the quality of services available

Help people get the care they need when they need it

People become more active in looking after themselves

Reduces the pressure on health and social services

This paper will review the case of Sophie who suffered Cystic Fibrosis.

Cystic fibrosis is a genetic condition inherited at birth. The affected gene is responsible for the movement of water in and out of the cells. When one is experiencing cystic fibrosis, a thick mucus is built up in the lungs, digestive system and other organs. This results in several challenging symptoms that affect the entire body. As she describes it, it such a painful ordeal having such a disease, sometimes she coughs blood. Despite the doctors’ opinion that the disease has no cure, Sophie has defied all the odds through exercises, which have helped in keeping the lungs functional. Apart from that, through the exercise, she has managed to become a cross country champion, and netball captain at high school, despite the life-limiting illness. Through the ambassador position, Sophie has managed to sensitize the larger population in the United Kingdom, through tours and videos on youtube (Adams, & Grieder, 2014).

Sophie’s Cystic Fibrosis Case Study

Sophie suffered from a disease known as Cystic Fibrosis, which has no cure. The disease is also funded to be the most common life-threatening illness in the United Kingdom. However, despite Sophie contracting such an incurable disease, she has developed a thirst for life that has earned her the position as an ambassador for Cystic Fibrosis Trust. According to Sophie, she used to wake up every day with lungs full of mucus and to cough a green mucus. She also used to take thirty tablets a day and two hours of treatment (Allen, Panitch, & Rubenstein, 2010).

Legal and ethical issues in managing Cystic Fibrosis

The principle of autonomy, this principle dictates that the right to self-determination lies with the patient. That is the decision to determine what the patient wants concerning their health lies with the patient. The medical practitioner has no right to interfere with the patient unless he/she is given the permission by the patient. However, the law has a provision that allows one to intervene without permission from a member of a civilized community only when the preventing harm to others. Self-fulfillment either moral or physical is not sufficient warrant (Barnsteiner, & Disch, 2014).

Confidentiality as an ethical issue

Information confidentiality, this deals with the safeguarding of information provided by the patient. The principle assumes that the information given out is sensitive. Thus access should be limited to parties. The information obtained during diagnosis of cystic fibrosis is not to be collected or recorded without the consent of the patient being examined. Moreover, the information obtained should be directly relevant to the victim and not used to benefit others without their express permission (Bjorklund, 2009).

Confidentiality as a legal issue

The first confidentiality statute was passed in 1882, during the smallpox epidemic. The aim was to encourage people to seek medical attention as it advocated for patient-doctor confidentiality (Dorn, 2010).

Equity as an ethical issue

Equity as an ethical issue is merely a moral issue. It pertains treating similar cases equality without discrimination. The issue also involves the society where the society has to determine whether how the distribution of scarce resources, such as health care according to patients and the ability to pay (Ghebrehiwet, 2011).

Equity as a legal issue

Equity, legislative policies highlight that an individual should not be discriminated in health services based on gender, class or race.

Privacy as an ethical issue

Privacy, privacy is a condition where there is limited access to a person. Privacy is the absence of unauthorized intrusion. Once a person is diagnosed with cystic fibrosis, the patient’s privacy includes, the right to make an informed decision about who and whether others are to know the details of the diagnosis. Those people include family members, spouse, employers, insurance educational institutions, and researchers. However, some approaches find that the definition of privacy about illnesses is closely intertwined with autonomy. The idea of personal autonomy reflects the language of territory or domain of self-rule and thus contradicts with zones of decisional privacy (Giddings, 2009).

Privacy as a legal issue

Legal and Ethical Issues in Managing Cystic Fibrosis

When it comes to the legal issue, the definition of privacy is a broad umbrella that covers that encompasses issues of both autonomy and confidentiality. The right to make the decision regarding oneself health is enshrined in the constitution. The right provides to make certain reproductive decisions regarding whether to use genetic testing or refuse treatment (Kirschenbaum, 2012).

Another side of privacy protects personal information, especially the disclosure of personal information found under the common law.

The interdisciplinary involved in taking care of persons suffering from cystic fibrosis include the following.

The center director

This individual tasked with the duty of organizing and administering the care center. The director is usually appointed from the pulmonology or gastroenterology specialization. The director is taken through adult programs to equip them with the skills

Pulmonologist

Due to the reason that the major cause of morbidity arises from pulmonary complications in cystic fibrosis, the clinicians are required to have expertise in in adult pulmonary medicine.

Gastroenterologist

Complications arising from cystic fibrosis create a need for a specialist who can deal with GI complications such as persistence difficulty in gaining weight and liver disease. Such a specialist is aware that cystic fibrosis that is related to the liver is one of the most common reasons why patients require a liver transplant. Patients who require liver transplant have milder lung disease, and their subsequent transplant requires a subsequent follow up with a liver transplant team t deal with frequent complications relate to the transplant (Lawn, & Lawton, 2011).

Endocrinologist

Cystic fibrosis that results from diabetes mellitus begins to be observed when the individual is around the age of 10 and prevails through adulthood such that about 50% of the adult patients have diabetes that is related to cystic fibrosis or abnormal glucose tolerance. Poor control of cystic fibrosis related to diabetes can lead to complications in lung functioning, weight gain, and survival. For this reason and endocrinologist who is familiar with the condition is highly recommended (Lidz, 2015).

ENT

Sinus surgery is highly recommended to patients who are suffering from cystic fibrosis that is caused by chronic sinus disease to remove nasal polyps. The nasal polyps cause nasal obstruction and sometimes affect appetite. Therefore, there needs to be an ENT specialist who will take care of the surgery (Mills, & Brady, 2016).

Hospitalist

For one to be taken care in the case where one is suffering from cystic fibrosis. A hospital facility requires having a hospitalist who is aware of the cystic fibrosis guidelines as well as te infection related to the condition.

Genetics

This is the specialist responsible for explaining complex topics related to the gene mutations, which bring about the condition of cystic fibrosis. The specialist is also able to determine the gene mutation an issue advice to parents at risk of having a child with cystic fibrosis.

Nurses

A nurse is a very crucial specialist in every medical center. Moreover, a nurse who expertise in cystic fibrosis plays a fundamental role in issuing care to the patients suffering from CF. The duties of the nurse extend far from just the inpatient duties to communicating with patients and families after the clinic, help deal with medical refills, insurance, and inter-current illness.

Inter-Professional Team Members and Their Roles in the Management of Cystic Fibrosis

Social worker

The cystic fibrosis is a stressful and complicated disease and poses a big challenge to the social worker providers and the families of the patients. However, the social worker works together with patient and families and helps in dealing with insurance issues, support for families, divorce and family stress as well as other issues that complicate medical care.

Respiratory care

Chest physiotherapy is a common lung secretion, mobilization technique that is performed on patients suffering from cystic fibrosis. The RTs teach and supervise these techniques. The RT performs a routine lung assessment of lung function t every cystic fibrosis patient. This testing is also done to infants. The RTs also deliver CF medication and teach families on how to use these devices (Patrick, 2017).

Physical therapy

This is the assessment done to Cf patient’s physical activity. The physiotherapy performs the assessment and encourages the patient to engage in more of this activity. The therapist looks for any chest wall deformity or joint complication and other factors that influence the functioning.

Nutritionist/Dietician

Nutrition is fundamental to maintain the health of the individual suffering from cystic fibrosis. Dieticians provide counsel and advice on the importance of a high fat, high calorie, and fat soluble multivitamin supplements. It is observed that most patients suffering from this condition require pancreatic enzyme supplements.

Pharmacist

Patients with cystic fibrosis have a strict regime to observe regarding medication to maintain lung health as well as adequate growth. Pharmacists come in handy in educating the families of these patients. Patients frequently require the admission of antibiotics and pharmacists assist in measuring the antibiotic drug levels and prevent over, under dosage or toxicity. In some centers, the pharmacist is found to work in the clinic reviewing outpatient medications (walker, 2017).

Clinic staff

The staff helps to minimize the time lost in waiting for patients and families, therefore, providing an efficient flow of the CF patients.

Conclusion

The paper has fully elaborated on all that there is to know about the cystic fibrosis condition. Even though the condition lacks cure, the paper has cited cases in which patients take it upon themselves to ensure their life is not cut short by the condition. Sophie is one of the patients who has decided to address her condition. Her case is supposed to motivate other living with this condition worldwide to practice self-support management through person-centered care. The paper has also identified that patients feel better when they take it upon themselves to manage their health. This has shown that it improves their wellbeing as well as increases their well-being. However, not all the self-support management can happen without external support.    

According to the paper, the family medical specialist and the society as a whole play a significant role in making self-support management come to be. The medical practitioners provide advice as well as knowledge and techniques to patients and their family members on how they can manage the cystic condition. The family provides emotional support as well as working to gather with the patient for health improvement. For the case of Sophie, she has been provided support y her elder sister who quit her job to give her undivided attention to Sophie. Moreover, the focus on improvement her health has provided her with an entrepreneurial opportunity where she provides services as a personal trainer.

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