The chronic conditions of the participant - Paralysis
Aim: The interview aimed to gather information about the lived experience of an individual with a physical chronic condition.
Background history of the participant’s condition
During the interview, I questioned a participant known as John Smith. John is a second-year student at Victoria University Footscray Campus studying arts. He is a very social person who interacts with individuals from culturally and linguistically diverse backgrounds. After graduation, John hopes to secure a job position in the public sector.
John developed paralysis at a very young age. Paralysis is the inability to control movements or detect various sensations such as temperature and touch (Cody, 2011). Specifically, paralysis is a symptom rather than an actual condition that manifests due to the impairment or loss of motor function (McCarthy & Warrington, 2013). Paralysis is primarily caused by damages in the nervous system.
Key findings from the interview (quotes)
John was diagnosed with paralysis at the age of only 5 months. According to John “it does not hurt or pain.” He still has some movement with his paralysed leg. However, the paralysed leg does not function fully. I asked him whether he has a better sense of control over his condition between now and the time when he was first diagnosed. He noted that there was a great improvement of his condition, which is progressive as he matures. John's response was “I am glad it happened when I was a young baby because it is much different when such as condition develops at a matured age.” Besides, John notes that he did not experience stress and trauma because he was very young.
I also asked John to explain how his condition developed and his parents’ response. He was unaware of how he developed paralysis as well as the parents’ response towards managing his condition. During the interview, John informed me that he does not take any medication to manage the condition because it was unnecessary. The medical team has, however, informed John that he could undergo a reconstruction surgery. John is said he is not keen on undergoing surgery. I asked John how he dealt with his condition when it happened. Based on his response, he would crawl to move around. He started using clutches at a mature age. John was very excited to use the clutches for the first time although it was difficult to learn.
The society's perception has not influenced John's thoughts about his condition. I wanted to know how he has developed resilience, which gives him adaptive responses to adversity (Cal, S?, Glustak, & Santiago, 2015). His response was “I am glad that I never think more about the negativity of a situation. I am a person who focuses on the positive aspects of a condition and strives to do what I can achieve.” On the other hand, John thinks his condition has changed over time. At times, he considers embracing the suggestions of the medical team about undergoing surgical treatment. However, John is happy with his current condition and wants to retain it. Some of the thoughts that John has are “how could it be? What could happen? What if?”
Fortunately, John is confident and comfortable managing his condition independently. He has the sense of self-management and does most of his duties. For instance, he can wash. The participant further noted that he is not disappointed because he has total control over his health journey. There are however several people who help John to manage his condition.
John’s family has been a vital partner in offering social support. Families play an important role in managing patients with chronic condition (Rosland & Piette, 2010). The family exhibits collaboration in helping John to live a quality and normal life as well as manage his condition. The family caters for all the basic needs of John helping him to lead a normal life. Evidently, the parents have helped to educate John up to the university level. Due to this overwhelming social support, John has never gone to seek for assistance outside his family. On his side, John assists the family when he is able. At the university, John is accorded several privileges due to his condition. For instance, he is allowed to rest even during classes. Also, he is given extensions to complete assignments. His tutors also send John lecture recordings. John is unaware of any organisation that supports people with paralysis.
Outside the academic setting, John has been participating in sports to improve the outcome of his condition. John’s primary leisure activity was playing wheelchairs basketball in a team. The behaviour of John shows that he understood the importance of physiotherapy in restoring some motor functions (Papadakis, McPhee, & Rabow, 2013). However, things have changed since he joined the university. There have been workloads that prevent him from playing wheelchairs basket ball. John also enjoys singing and has participated in the school choir from the year 2010 to 2012. Apart from the involvement in sports and school choir, John’s philosophy about life has further helped him to manage his condition. His philosophy is ““most importantly be aware of what you can and cannot do.” John told me there are ramps and elevators in most places where he visits. As such, he has to replace the bottom part of his clutches, the part that comes into contact with the ground, every month. Even though he has a wheelchair, John prefers to use the clutches because they are comfortable and allows him to move around easily.
Analysis of psychological and social issues raised in the interview
The interview reveals several themes of personal control. I conclude that John’s explanatory style is an optimistic explanatory style. An optimistic explanatory style is a case whereby an individual does not blame the outside forces for negative events (Weiss & Berger, 2010). In the case of John, he did not blame anyone for what happened to him and hoped that things would get better. In fact, he has a positive mindset regarding his condition. As a result, John has a strong sense of self-efficacy. Self-efficacy is a facilitator of psychosocial rehabilitation, health-behaviour change, and health maintenance in individuals with chronic conditions (Martz, 2017). According to the findings of the interview, John has initiated psychosocial rehabilitation and even adopted health-behaviour change. His interactions with people in public help him to gain confidence, learn how to handle his duties and roles in the society. Notably, John walks and washes on his own despite his condition. The findings of the interview further reveal that John has an internal locus of control. Some patients feel they have control over some aspects of their conditions and can control reoccurrence (Dubey, 2012). John believes that he has more control over his condition and can do various things without hindrances. An internal locus of control is associated with positive health outcomes (Berglund, Lytsy, & Westerling, 2014). This aspect is evident in the case of John since he had improved significantly from the time when he was diagnosed with paralysis.
My experience of being the interviewer
As an interviewer, I was delighted to get first-hand information from an individual who has a chronic condition. It was a privilege to interview John who is living with a physical chronic condition. From this interview, I learnt a lot about the management of the physical chronic condition. The participant explained his condition, experience and how he manages his condition. It is notable that health and social care research helps health care provider to frame the problem of understanding a chronically ill patient from different possible viewpoint (Torsi, 2012). Even though it was my first time to conduct such an interview, it was very helpful to me. At first, I was nervous because I did not know the participant who I was interviewing. In addition, preparing for the interview was challenging. The primary challenge was in designing the questions and systematically organising them. In the course of the interview, I learnt that the participant was a lovely person, easy and interesting to converse with. I could have prepared more questions because I felt that my questions were not enough for the 30 minutes interview. However, that was just a small shortcoming, and I enjoyed the rest of the interview.
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Rosland, A., & Piette, J. (2010). Emerging models for mobilizing family support for chronic disease management: a structured review. Chronic illness , 6 (1), 7-21.
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Weiss, T., & Berger, R. (2010). Posttraumatic growth and culturally competent practice: Lessons learned from around the globe. John Wiley & Sons.