Human Experience of Chronic Health Challenges

Transition from Partners to Parents
April 5, 2017
The Human Becoming Theory: The Quality of Life
April 5, 2017

Human Experience of Chronic Health Challenges

Everyday, new findings of medical science research emerge on the horizon, which ultimately have the effect of increasing life expectancy among people. Yet, unexpected events in life arise, leading to lifelong illness for which medical science has not yet discovered any effective treatment. One of the most severe examples of this unfortunate fact is labeled the chronic illness “quadriplegia”, which results in full or partial loss of motor and sensory control of the limbs and the torso. The purpose of this paper is to explore the lived experience of an individual suffering from “quadriplegia”, how the process of transition and lack of awareness affects people with this chronic illness, and what healthcare professionals and persons with such illness can do to improve their quality of life. A pseudonym has been used in the paper to keep the personal information confidential.

Summary of the Story                         

Mr. Kareem immigrated to Canada 12 years ago. He was born to a middle class family in Pakistan in 1961. From the very beginning, he had a passion for teaching, which led him to a masters degree in mathematics in 1983, for a career as a teacher of mathematics. He was fortunate to be placed at a renowned institution of just as he had begun what he expected to at the age of 27, and rewarding existence; he was involved in a serious accident when his motorcycle collided with a truck. He sustained a spinal-cord injury at the sixth cervical disk. Consequently, he lost appreciable motor control over his legs, trunk, and upper limbs. Despite the fact that he was able to move his hand for writing and a number of other activities, life became meaningless for him. To supplement the details of his injury, it would be appropriate to say that he developed into a quadriplegic. This forced him into dependency on others for even his day-to-day activities. It became unbearable for him to face his situation when the doctors could give him no assurance of even partial recovery from his paralysis. He wept like a baby when doctors notified him that he would thenceforth have no mobility other than that provided by a wheelchair. At this point, Mr. Kareem encountered numerous challenges in his community due to the lack of awareness, knowledge, and sympathy among the general public about his chronic illness and body posture subsequent to his spinal-cord injury. Predictably, he stayed home for days and refrained from socializing altogether. However, he was fortunate to have complete support from his family members and some of his friends.

Shortly after his disablement, he visited England feeling optimistic about a possible cure that would result in the resumption of normal life. Although neuro-surgeons were unable to help him, in England, he came across other immobilized people who benefitted from rehabilitation and the use of electric wheel-chairs to the extent that they could perform their day-to-day activities with little trouble. This vision of disabled persons empowering themselves gave him the strength and courage to establish a new life. He went back to Pakistan and rejoined his academy as an instructor. However, he chose to tutor computer science students because he considered it easier and interesting to teach. He remained positively focused on his abilities rather than dwelling on his weaknesses.

In Pakistan, Mr. Kareem employed a person who attended to his needs round the clock to facilitate him in his activities of living in his college and home. In the year 2000, Mr. Kareem and his assistant immigrated to Canada. Although he was entitled to a personal support worker for two hours daily, he did not consider this adequate because he felt it necessary for someone being readily available any moment he required help, especially for bowel and bladder management. There was a time when he felt unbearably frustrated when he needed his caregiver for bowel management or some other physical task of which he was incapable.

He had immigrated, his ardor to teach remained undiminished but found recertification in Canada a lengthy procedure. In order to make a living, Mr. Kareem attempted to find employment in the Ontario Drug Benefit Program, in Accessible Wheel Trans Services department as a telephone operator. However, he was turned down possibly because of his chronic illness meaning his body posture. This setback did not impede his efforts to find gainful employment. He aimed to open a pizza business; but was unsuccessful due to lack of knowledge in this field. Soon after, he joined a financial group dealing in RESPs and RRSPs. He remained with the company for three years. However, not being able to attend monthly meetings of the company he decided to resign and returned to tutoring, which always had given him so much satisfaction. Accordingly, he started tutoring students at his home. Although, it meant a reduced income, finding in it the strength to move on with his life in a purposeful way.

He was engaged before this incident. However, he refused to be married as he did not want to be a burden on anyone. However, in 1995 being influenced by claims of advancements in neuro-surgeory in China, which rekindled the hope that he might be cured after all, he finally decided to get married, though resolved not to have children. His wife respected his decision. Even today, he keeps himself busy teaching students who help give him a reason to live on, besides the support and understanding of a spouse.

Transition and Health-within-illness

Acceptance of chronic illness has always been a challenge for patients suffering from one. Individuals go through distinct phases before coming to an understanding of their illness as a permanent disability. These consist of the extraordinary and the ordinary phases. During an extraordinary phase, a person is actually in a denial segment and refuses to accept the illness as incurable. In some patients, this phase provokes suicidal ideation, grief or even self abasement, while others find it easier to transform into a new person with a particular disability and move on with their lives (Kralick, 2002). Mr. Kareem falls into the prior category as he expressed similar feelings after the catastrophic event that turned him into a quadriplegic, experiencing great anguish, when doctors informed him that there was no treatment for his infirmity and he must live with it for the rest of his life. He plainly started grieving and did not wish to accept this reality.

After the first segment of grief and sorrow, the patient usually starts accepting the illness or the challenges that come with it. The second phase in the transition process that involves the patient’ s perception of his/her living with chronic illness, which helps him/her to move away from a cyclone of emotions and fear of losing certain physical abilities and looking for new opportunities (Kralick, 2002; Diemert Moch, 1997). This was exactly the case with Mr. Kareem who traveled to England and observed many disabled people living happily engaged in various activities. This not only helped him move out of the grief-and-sorrow phase besides strengthening his judgment to the point that he could think realistically with his disability, focusing more on what he had and could do rather than what he had lost.

The concept of transition and health-within-illness are inseparable in patients with chronic illness (Kralick, 2002; Diemert Moch, 1997). The process of transition involves accepting the reality and looking at new possibilities of life. When a person accepts the transformation, this ultimately leads him to centre his attention to a better utilization of available resources. These persons develop certain abilities to understand their bodies and become the masters of their own fate (Diemert Moch, 1997). Their chronic illness gives them an opportunity to explore ways to cope and live with it. Chronic illness does not usually deter individuals from continuous growth in the quality of everyday life, which is a sign of life (Diemert Moch, 1997). All of these positive changes taking place in a person’s life after devastating accident are the results of a transition process without which it would not be possible.

The process of transition in patients with chronic illness, from denial to acceptance, depends not only on healthcare professionals but also on support from family, friends, and society as a whole. They help individuals deal with the sorrow and grief they experience upon the onset of a disability (Berg & Upchurch, 2007). Mr. Kareem was fortunate that he had the full support of his family and friends. They helped him through the period of grief and uncertainty, giving him the moral support to move on with his life.

In regard to the role of healthcare professionals in the process of transition, they can help lessen the severity of the effects of a chronic illness and transit the patients through the process through their understanding of the patients’ perceptions and their needs and by responding to those needs appropriately. Society also plays a major role in helping the person through the transition. In Mr. Kareem’s case, he was at first petrified that being handicapped would cut him off from society, even in his own country. This also created hurdles to the process of transition in his case. Society should encourage individuals with chronic illness to help turn them into useful citizens once more and integrate them fully. This would help them deal with the distress related to the transition, because such catastrophic events can be problematic for anyone in any society.

Lack of Awareness among the general Public

Another important aspect that emerged from research on social perceptions of chronic illness is that it leads to stigmatization of those in this vulnerable population. Several researchers have found that this stigma is related to lack of knowledge among the general public. As human beings, some people have the tendency to label other people based on their physical appearance or ability (Rao, Choi, Victorson, Bode, Peterman, Heinemann, & Cella, 2009). The authors of the study also found that a large proportion of the participants of the study felt as if they were left out because of their distinct physical appearance, while others felt humiliated because of their limited physical mobility. In every walk of life, from neighbors to strangers, from producers of theaters to those who control the job market, people with chronic illness have been habitually stigmatized. This prejudice stems from the underestimation of their abilities to take on responsibility and fulfill the demands of any occupation they attempt to take up (Roa et al., 2009).

In the discussion I had with my client, the tendencies mentioned above seem predictably to have affected him; he mentioned that he was stigmatized in his own country because of unawareness and ignorance. This was another reason he immigrated to a developed country like Canada, where he would not encounter as many problems as he had faced in his country. He also mentioned that some people believed that he has been punished for his misdeeds. This was not the end of his worries, however, since as an immigrant Mr. Kareem wanted to be a useful member of society by offering his services to the community. He applied for jobs in industries such as in customer care with Accessible Transportation Services as a call operator. However, he was turned down, and Mr. Kareem believed it was because of his physical appearance and disability. In this case, society played a major role in discouraging a disabled person to become a productive member of society by forcing him to rely on social benefits rather than earning his own living. Such disappointments confirm that people underestimated his abilities and strengths to be a functional part of the system.

There is need to create awareness among the general public about the devastating effects of stigma, which results in the development of feelings of rejection and humiliation among this vulnerable population. Rallies, community meetings, and other public awareness programs should be arranged to build a more knowledgeable and compassionate society. A positive attitude is also expected from the general public, such as prioritizing abilities, over disabilities, and finding ways for these people to contribute to society (Pelletier-Hibbert & Sohi, 2001). Understanding the aptitude and capability of this vulnerable population would encourage them to be valuable partners in the development of society. If disabled persons are offered jobs based on their abilities, they would not only make a living but also become a role model for other disabled persons. This social interaction would consequently increase awareness among the public and ultimately remove the stigma that has for so long victimized the disabled.

Quality of Life among Persons with Chronic Illness

In modern society, quality of life is measured statistically on mathematical scales and described in numbers. However, the true picture of “quality of life” can be measured and drawn only by persons involved in the situation. Quality of life varies from person-to-person based on their exposure to the environment, the debilitating extent of their chronic illness they are experiencing, and how they cope with their illness. Several researchers have described quality of life based on persons’ functional approaches to involvement in social activities, happiness, personal well-being, and mental satisfaction (Feigin, Barnetz, & Davidson-Arad, 2008).

Chronic illness affects the “quality of life” of a person in certain ways. In some cases, this changes the physical appearance of people, which makes them look different from others and ultimately causes them to suffer depression. Not being fully capable for day to day activities is a source of frustration and depression. Their deviant physical appearance results in the development of feelings of being left out and lack of socialization, dragging these individuals to the world of isolation and seclusion leading to other complications such as emotional distress, anxiety, and mood alterations (Feigin et al., 2008). Mr. Kareem has been facing similar issues in his life. His definition of quality of life encompasses physical abilities to perform his responsibilities. Not being able to perform his bowel and bladder management on his own, left him dependent, frustrated, and agitated. Another impact of his chronic illness on his quality of life was that he initially gave up on marriage and having children. His chronic illness has impacted his financial status as well; perhaps his disability is in the way of finding a better job, leaving him to depend on social benefits.

The impact of this chronic illness is not limited to the person involved in the situation; it also affects the whole family and friends, emotionally, physically, financially, and socially (Whitney, 2004). So not just the person, but the whole family has to make some changes to their lives in order to fit into the person’s life. Mr. Kareem said he was fortunate enough to have a supportive family and encouraging friends. However, every family member had to make sacrifices to meet his needs. For instance, someone had to be at home or accompany him at all the times to assist him physically and emotionally.

Quality of life among chronically ill people can be improved by understanding their perception and their illness means to them. Whitney (2004) conducted a qualitative study on how to improve quality of life among patients with chronic illness and came up with a few suggestions. Some behavioural changes are needed to improve the quality of life among patients with chronic illness. These are accepting the challenges and limitations caused by the illness: looking for knowledge and developing learning habits; engaging in meaningful activities, and living as the day comes. Improvement in quality of life starts with the acceptance of the illness, which makes a person look around the world and explore what a person can do to meet his new needs. Learning is a life long process. However, this behavior is even more important after losing certain strengths. Studies have proven that individuals with knowledge seeking behavior and learning habits are more successful in improving their quality of life (Whitney, 2004). Another important aspect in improving quality of life is to keep oneself busy in meaningful activities, which comforts and soothes a person. This behavior was observed in Mr. Kareem, who kept himself busy tutoring students at his home for his satisfaction.

Learning from the Story

The purpose of all nursing interventions from medication, ambulation, to discharge, is to improve the quality of life of people who are facing different health challenges in their lives. People suffering from chronic illness are in a better position to elaborate on their illness, what it means to them, and what they need to cope with it. As nurses, we are obligated to understand patients’ perceptions of their illness and meeting their needs holistically. We need to understand that chronic illness does not only affect a person; as a matter of fact it affects the whole family. Nurses can help these individuals and families to move along their lives by developing an understanding of what is meaningful for a particular client and developing a nursing care plan, while making sure that patient’s as well as the family needs are also included.

Looking back at the story, some concepts are extremely helpful and valuable for nurses to know, such as the importance of positive attitude, the lack of awareness among the general public, and the complexity of the transition of a person after a chronic illness. Positive attitude is required not only from the general public towards these individuals but also from the person involved in the situation. This helps the individual to focus more on his abilities to cope with his illness. The transition phase from denial to acceptance is the key to collecting and using the person’s remaining strengths. People with chronic illness require emotional and psychological support to move through the transition phase. The role of family, friends, and healthcare professionals in the process of transition cannot be denied. Healthcare professionals can help the individuals focus on their strengths, and offer options to live a better life with a lifelong illness. Rallies, public awareness conventions, community healthcare meetings, television shows and commercials can be used to create awareness among the general public. The government should take initiative to save these individuals from being victimized by the general public, by funding towards research and arranging the afore mentioned activities.

Conclusion

Chronic illness brings many challenges to a person and a family. However, those who accept the challenges and try to adopt new changes in their lives are found to be more successful at fighting against those challenges (Kralik, 2002). A continuous physical, emotional, and psychological support is needed from family, friends, and healthcare professionals to get a person to an emotionally stable state. A general public awareness is needed to stop judging this vulnerable population based on their disabilities; rather they should be credited for what they can do with disabilities. They should be given at least a chance to prove their abilities and become a functional member of the society. This action would also encourage other people with such a noxious chronic illness to make a living on their own and improve their quality of life according to their own perception.

 References

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Diemert Moch, S. (1998). Health-within-illness: Concept development through research and practice. Journal of Advance Nursing, 28(3), 305-310. Retrieved from http://web.cinahl. com/cgi-bin/refsvc?jid=203&accno=1998061428

Feigin, R., Barnetz, Z., Davidson-Arad, B. (2008). Quality of life in family members

coping with chronic illness in a relative: An exploratory study. Families, Systems, & Health, 26, 267-281. doi: 10.1037/a0013055

Kralik, D. (2002). The quest for ordinariness: Transition experienced by midlife women

living with chronic illness. Journal of Advance Nursing, 39(2), 146–154. Retrieved from http:// cinahl.com/cgi-bin/refsvc?jid=203&accno=2002115284

Pelletier-Hibbert, M., & Sohi, P. (2001). Sources of uncertainty and coping strategies used by family members of individuals living with end stage renal disease. Nephrology Nursing Journal, 28(4), 411-419. Retrieved from http://search.proquest.com.ezproxy.Library.yor ku.ca/docview/216533483?accountid=15182

Rao, D., Choi, S., Victorson, D., Bode, R., Peterman, A., Heinemann, A., & Cella, D. (2009). Measuring stigma cross neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality Of Life Research, 18, 585–595. doi: 10.1007/s11136-009-9475-1

Whitney, C. (2004). Maintaining the square: How older people with parkinson’s disease sustain quality in their lives. Journal of Gerontological Nursing, 30(1), 28-35. Retrieved from http://search.proquest.com.ezproxy.library.yorku.ca/docview/204148752?accountid=15

 

These articles have been written by Nasir Ahmad BSc. (HONS) Nursing, a graduate from York University Toronto, Ontario, Canada. The writer of these articles authorize Peace In-Home Health Care Services Inc to use these articles on their website as an additional resource for their clients. However, any unauthorized copying or distribution of these articles will be dealt strictly by the laws of the state. Please contact author for any queries at 416-648-2717 or email: 23.ahmad@gmail.com