This case study looks at the effects of being diagnosed with a long-term condition and provides an insight and appreciation of how living with the condition effects a person’s life and their family/whānau. I interviewed a 38-year-old male of Indian descent, who lives in Auckland in a flatting situation with two other people. He works full -time in a managerial position from 2-12pm and has a staff of eight. He prefers to stay home on the weekends and has a very small group of friends that he socializes with, however, not on a regular basis, as he prefers to be on his own. He does drink and is a non-smoker. His dietary intake is high in fat and carbohydrates, mostly due to the fact that he eats takeaways often. He states he is enrolled in a fitness club but hardly attends putting it down to having no time. He is religious and does admit to being somewhat slack in maintaining his faith. He has no family in New Zealand, apart from a daughter that he visits regularly. His parents, along with his sister all reside in India.
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This person has a long-life condition of Arthritis; more specifically Gout. He recalls being diagnosed with gout about 6-7 years ago. Gout normally affects either his first metatarsophalangeal (MTP) and the right or left ankle. At present he is not maintaining his condition well and has problems controlling his food and alcohol intake. He admits to not committing to the lifestyle changes he needs to prevent gout re-occurring, and sometimes finds it difficult due to his work ethic. Because he has difficulty in controlling his lifestyle habits, he becomes stressed and anxious. When an attack occurs, he is unable to go to work, most times hibernating in his room, so his flatmates do not know what is wrong with him. He has sleepless nights and decreased mobility which cause him to become anxious, grumpy, low mood and withdrawn. His room is on the second level of the house which makes it more difficult for him in terms of mobilizing. He adds
“I don’t normally bother to go downstairs when I have an attack because of the pain. Luckily, I have a bathroom next to my bedroom” (anecdotal evidence, 2019).
The onset of symptoms for gout typically happens at night or in the early morning hours with sudden swelling, followed by redness, and the joint is tender and warm to touch, with excruciating pain peaking within hours (Health Navigator, 2019). According to the Centres for Disease Control and Prevention (2018), an attack normally affects the first Metatarsophalangeal (MTP) joint or ankle and can be accompanied by a low-grade fever. However, the knee, along with hip joints, are more susceptible to being affected from Calcium pyrophosphate deposition disease (CPPD disease), formerly known as pseudogout (bpac, 2013).
Unlike CCPD disease, gout is caused by uric acid- monosodium urate, a substance that forms when the body breaks down purines. Uric acid is the end product of high purine intake and is normally eliminated by the kidneys through urine. However, some people either overproduce uric acid or they produce a normal amount, but their kidneys can’t process it efficiently and excess uric acid builds up (Ministry of Health, 2015). In addition, high purine intake on its own has little effect on uric acid levels. Hence, it is with the combination of prolonged fasting or excessive alcohol consumption that increases ketoacids, thus inhibiting uric acid excretion (Brown & Edwards, 2013).
Brown and Edwards (2013) go on to say, it is the high levels of uric acid that crystallize and forms in the joint causing the signs and symptom of gout.
The course of illness is determined by a trajectory model used to show the stages of a person’s illness; from diagnosis to death, for some this can be over a period of weeks to years (Kuzma, 2014).
The build-up of uric acid in the body happens without the patient knowing and there are no signs or symptoms to this build up occurring. Once the uric acid has crystallized it then forms in the joint and signs and symptoms begin to appear. This happens suddenly and quickly intensifies over a period of 8-12 hours. During this phase, a diagnosis is determined by a joint fluid test, blood test or x-rays (Arthritis Foundation, n.d.). By now the gout is in acute stage and it is here where stress, worry, low mood, insomnia and decreased immobility sets in. Medications are dependent on the individual. Allopurinol can be prescribed as a preventative and Diclofenac as a pain relief, which is line with Pharmac (2017) & Bpac (2017) standards. In addition, NSAID’s such as Diclofenac and Naproxen are the most common medications provided to alleviate symptoms and lessen the timeframe of attack and Allopurinol and Probenecid is the preferred treatment in gout prevention (Pharmac. 2017). Once medication is prescribed the recovery period begins, and symptoms gradually decrease until they are no longer present (bpac, 2017).
This leads to the stable phase where the gout has subsided. Here quality of life can be maintained with correct medication, diet, exercise plan and reviews to ensure a target urate level of 0.36 mmol/L is maintained (bpac, 2017). However, if lifestyle changes and medication regime are not adhered to over a period of time, the person is in a vulnerable position of increased gout attacks leading to further health complications and having an increased risk of mortality. Notwithstanding, gout is also associated with many other long-life conditions (LLC) such as cardiovascular disease and renal failure (Bpac, 2017). Gout is estimated to affect around 5 percent of the total population aged 20 and over. People aged 65 and over, men, Māori and Pacific peoples are most affected (Health Quality & Safety Commission, 2019). However, gout only affects around 3% in the Asian – Indian population but is rising. (Binoy, P & James, R., 2017).
In terms of lifespan considerations, he is 38-year-old male and slightly overweight. He very rarely socializes with friends preferring to stay home and usually isolates himself to his room on his days off work. This being in line with Erickson’s stages of Psychosocial development (McLeod, 2017). As he ages, there will be a decline in the way he manages his condition which will potentially lead to further health complications. According to the American Kidney Fund (2017), prolonged gout attacks will affect an individual’s overall mood, and the severe pain associated with the attack can cause feelings of anxiety, low mood, and isolation impacting on their daily life.
At present the patient is at the stage of intimacy versus isolation of Erik Erickson’s psychosocial stages, where relationships are formed successfully or fail. For the patient he is in the isolation period, where avoidance and fear of commitment has led to isolation, loneliness and low mood (McLeod, 2017). This is shown by his lack of socializing, having a very small group of friends and not wanting to go or do anything on his days off work. McLeod (2017), goes on to say, failure to successfully complete a stage can result in a reduced ability to complete further stages and therefore an unhealthier personality and sense of self. Although, this stage can be successfully completed at a later time. The psychosocial impact for the patient is being irritable, grumpy, stressed and low mood. Being grumpy and irritable is more associated with the pain he has when an attack occurs. Frustration and stress also set’s in as an attack prevents him from going to work and mobilizing safely around the house. According to Anderson and Ozakinci (2018), LTC not only has a significant impact on the patients physical functioning but also on the patients’ psychosocial wellbeing. In addition, studies showed utilising psychosocial interventions and promoting patient involvement increased a patients’ quality of life.
People with long term conditions will have a team of expert healthcare professionals, a Multidisciplinary team (MDT) whose role is to deliver comprehensive patient care. The team is specific to the individual’s condition and needs, and team members may come and go as the patient’s condition progresses (Health Navigator, 2019). In relation to the patient his MDT consists of a doctor who has diagnosed the condition and oversees the patient file for any changes such as, prescribing medications and signing of repeat prescriptions. The Practice Nurse is also involved in his care, whose role is to ensure follow up on appointments, complete regular check-ups, provide supportive care and education around the condition and medications and discuss lifestyle changes, such as diet, exercise and psychosocial support needed to manage his condition. Both doctor and nurse collaborate with each other when assessing patient during annual reviews. A pharmacist is also involved and dispenses the medication and validates the doctor’s instructions on how the medication is to be taken and can also offer advice (Bpac, 2017).
Bpac, (2017) go on to say, nurses in Primary care are an essential component in providing nursing care needs. The check-up includes checking uric acid levels, blood pressure, weight and nutrition. Medication regime is also checked and discussed.
The nursing care needs for this patient at this stage is minimal, due to the patient being at an intermittent or stable phase of his condition. However, it is still important that he has control over his diet and fluid intake and attends regular check-ups and adheres to his treatment plan as recommended by bpac (2017), adherence is key in long term management. If the patient was in an attack stage, most likely he would be self-managing his cares at home. If he was to be admitted to hospital his nursing care needs would be assessing and manging pain, administering medication and monitoring vitals and fluid input/output. Assistance with positioning and mobility will be needed to avoid pressure on the joint and for safe ambulation. Monitoring signs of inflammation to ensure efficacy of medication (Bpac, 2017). Staying hydrated and encouraging fluids is important as stated by WebMD, (2018) it prevents dehydration and helps the kidney with uric acid excretion. Nutrition education is equally important to discuss with patient as it will lessen the risk of future gout attacks and referrals made to the appropriate organizations/health professionals if need be (Pharmac, 2017).
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Nursing partnership is defined as “working together in partnership with individuals, families/whānau and communities” (New Zealand Nurses Organisation [NZNO], 2011, p.9). It is the distinct characteristics such as, being culturally diverse, the principles of Te Tiriti o Waitangi and an understanding of and incorporation into practice of the Māori perspectives of whakawhanaungatanga, manaakitanga, rangatiratanga, and wairuatanga that has allowed nurses to connect and form partnerships with the patient (NZNO, 2011).
Belcher & Jones, (2009) suggest, that the partnership role needs to be a two-way, reciprocal relationship at all times, involving nurse, the patient and their family, where appropriate.
The subject has stated he does not have family here, therefore, it is important for the nurse to discuss support networks such as, Arthritis NZ or referral to counselling. As indicated by Arthritis New Zealand (n.d.) linking patients to relevant support is vital in managing the condition.
There is a need to emphasise caring in this relationship, with positive communication and clear boundaries of both personal and professional interactions. Hence, the relationship between a nurse and patient should fit into the patient-centred model of care, where patients are not only listened to within a clinical decision-making context but are actively encouraged to participate in their own care pathway (Health Navigator, 2019). This includes assisting patients and whanau to navigate health services, linking patients and whanau into relevant support and enabling people to live well with their chronic illness and reducing progression of co-morbidities (bpac, 2017).
Providing strategies for the patient is also part of the partnership relationship and it gives the patient more involvement in their plan of treatment and empowerment (Health Navigator, 2019). In relation to the patient, it is important to provide strategies for areas that he has found difficult to control to prevent further attacks and lower the risk of co – morbidities. According to Nailey (2016), those who are diagnosed with gout are at greater risk of developing heart disease or a stroke.
Three health issues identified for the patient are dietary habits, physical inactivity and isolation. Specific nursing strategies will need to be implemented to assist in better management of his condition in partnership with the patient. The use of Motivational interviewing [MI]) is an approach already established in practices, nurses are familiar with it, and evidence shows it works and has good outcomes (Brett, Gregory, Huriwai And Tuhiariki, 2014). The MI approach along with the model 5 As, ask, assess, advise, agree and assist, will be used during the patient’s consultation to tailor an individualised plan specific to the patients’ needs which will include patient participation, giving empowerment and respect to the patient. In terms of addressing his dietary habits, an assessment of his dietary intake including fluids will be done. Following that, informative pamphlets will be provided along with resources to internet links and a dietician referral and healthy lifestyle programme such as, the green prescription will be discussed. Although, the patient has stated he has signed up to a gym but does not attend, the green prescription may be more suited to his needs. According to (Health Navigator, 2019), the benefits of this programme vary and there are many anecdotal evidences to show it works and is more suited for those with long term conditions. Health Navigator (2017), highlight, MI and the 5 A’s model used during a consultation are both person-centred and have an emphasis on communication, empathy and shared decision-making.
Isolation can lead to many forms of mental health issues such as, anxiety and depression (Reach out, 2019). Reach out (2019), go on to say, keeping busy and active helps with feelings of wanting to be isolated.
The patient has stated he does not like to socialize and prefers to be on his own. Therefore, it is important for the patient to be provided with appropriate resources and information about support groups and online forums, and to discuss opportunities for social interaction. A referral to a counsellor and the inclusion of someone he is close and comfortable with to be his social support person will be discussed. As stated by Mayo Clinic (n.d.) having a social support network is critical in helping patients in tough situations. Although, both support groups and support networks can play an important role in times of stress, a social support network is something the patient can develop when not under stress and result in having the comfort of knowing friends are there for you if you need them.
While gout cannot be cured, it can be controlled and people with gout can lead a full and active life. Having a long-term condition can be frightening and overwhelming. Therefore, it is important to have a tailored individualised treatment plan, good education, appropriate resources and support networks in place. An effective nurse-patient partnership is about listening to the patient’s point of view, exploring how the patient feels, and determine how confident the patient is to care for the problem which will also determine the management and quality of life for that individual.
References
Anderson, N., & Ozakinci, G. (2018). Effectiveness of psychological interventions to improve quality of life in people with long-term conditions: rapid systematic review of randomized controlled trials. Retrieved from: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0225-4#Sec30
Arthritis Foundation. (n.d.) What is Gout. Retrieved from: https://www.arthritis.org/about-arthritis/types/gout/what-is-gout.php
Arthritis New Zealand. (n.d.). Support groups. Retrieved from: https://www.arthritis.org.nz/support-groups/auckland/
Belcher, M., & Jones, K. (2009). Graduate nurses’ experiences of developing trust in a nursing patient relationship. Retrieved from: http://samples.jbpub.com/9781449691776/9781449691776_CH05_Pass2.pdfBinoy, P., & James, R. (2017). Gout. An Asia Pacific update. Retrieved from: https://onlinelibrary.wiley.com/doi/full/10.1111/1756-185X.13103Bpac (2013).
Britt, E., Gregory, D., Huriwai., T, and Tohiariki, T. (2014). Takitaki mai: A guide to Motivational Interviewing for Māori. Retrieved from: https://www.matuaraki.org.nz/uploads/files/resource-assets/Takitaki-mai-a-guide-to-motivational-interviewing-for-maori.pdf
Bpac. (2013). Calcium pyrophosphate deposition disease: The arthropathy formerly known as Pseudogout. Retrieved from: https://bpac.org.nz/bpj/2013/october/cppd.aspx
Centres for Disease Control and Prevention. (2018). Gout. Retrieved from: https://www.cdc.gov/arthritis/basics/gout.html
Craven, J. (2017). Age, Tophi linked to mortality in gout. Retrieved from: https://www.rheumatologyadvisor.com/gout/recent-onset-gout-risk-factors-for-mortality/article/662964/
Health Navigator (2019a). Green Prescriptions. Retrieved from: https://www.healthnavigator.org.nz/healthy-living/physical-activity/green-prescriptions/
Health Navigator. (2019b). Gout. Retrieved from: https://www.healthnavigator.org.nz/health-a-z/g/gout-overview/
Health Navigator. (2017c). Motivational interviewing. Retrieved from: https://www.healthnavigator.org.nz/clinicians/m/motivational-interviewing/
Health Navigator. (2019d). Personal stories about trying green prescriptions. Retrieved from: https://www.healthnavigator.org.nz/healthy-living/physical-activity/green-prescriptions/
Health Navigator. (2019e). Team Approach. Retrieved from: https://www.healthnavigator.org.nz/clinicians/s/self-management-support-project/building-your-team/team-approach/
Ministry of Health. (2015). Stop gout booklet. Retrieved from: https://www.health.govt.nz/system/files/documents/topic_sheets/stop_gout_booklet-dec2015.pdf
NICE. (2014). Obesity. Identification, assessment and management. Retrieved from: https://www.nice.org.uk/guidance/cg189
Nailey., C. (2016). Managing Gout. Retrieved from: http://www.advanceweb.com/SharedResources/Downloads/2016/052316/Gout-Patient-Handout.pdf
New Zealand Nurses Organisation. (2011). Nursing in Aotearoa New Zealand: A definition. Retrieved from: https://www.nzno.org.nz/LinkClick.aspx?fileticket=a5hhuYKjn50%3D&portalid=0Pharmac. (2017). Gout. Retrieved from: https://www.pharmac.govt.nz/medicines/your-health/gout/
Reach out (2019). Loneliness and Isolation. Retrieved from: https://ie.reachout.com/getting-help-2/minding-your-mental-health/loneliness-and-isolation/
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