Lived Experience Of Living With Cancer: A Critical Appraisal Of Research Literature

Research Methodology

Discuss about the Experience Of Living With Cancer Or A Life Threatening Illness.

The number of people diagnosed with cancer is increasing and it is increasing the complexity and burden for the health care system. The prevalence of the cancer in Australia is understood from the fact that a total of 138, 321 cases of cancer has been diagnosed in 2018 and the number of deaths from cancer in 2018 has reached 48, 586. The review of cancer diagnosis in the five year period between 2008 to 2012 revealed that more than 4 lakh people were diagnosed with cancer by the end of 2012 (Cancer Australia 2018). As cancer is a life-threatening illness, the diagnosis of the condition is associated with negative physical and mental health impact on patient. The process of continuous medical attention, hospitalization and painful treatment procedure has adverse psychological impact on patient and family members. The experience of patient living with cancer also differs based on individual circumstances, types of treatment received and improvement or deterioration in symptoms (Bruce et al., 2018). As holistic care requires fulfilling physical, mental, social and spiritual needs of client, it is necessary for nurse to have understanding about experience of people living with life threatening disease such as cancer. Such knowledge helps in the delivery of patient-sensitive care and preventing dissatisfaction with care. With this insight, the main purpose of this report is to critically appraise three research literatures related to lived experience of living with cancer and then reflect on application of this knowledge to nursing practice.

To retrieved relevant research literature related to lived experience of being diagnosed with cancer or a life threatening illness, search for articles has been done from Google scholar PubMed and Medline. The key terms used for search articles were ‘lived experience of living with cancer’, ‘perception of people living with cancer’ or ‘lived experience of people living with life threatening illness. The other search criteria was to include research articles published within 2010 to 2018 only and all articles must be published in English language. The article which gave narration about patient’s perception of being diagnosed with cancer or a life threatening illness was excluded from analysis.

1^st evidence:

The first articles that gives insight about lives experience of living with cancer is the study by (Leal et al. 2015). The article has clear statement regarding aim of the research which was exploring patient’s ongoing experience of living with cancer. The study used qualitative methodology to analyze date obtained from a part of randomized controlled trial. Use of qualitative method is suitable as per the study objective as qualitative approach favors gathering data related to a phenomenon of interest (illness experience). As per the study objective, the research recruited patients with lymphoma who had received treatment within the past 12 month and data regarding lived experience of living with cancer was collected by means of three open ended question. The three open-ended questions enquired patients about reaction after diagnosing of cancer, changes in life after diagnosis and thought about future. The use of open-ended questionnaire is commendable as it helped in in-depth analysis of lived experience of life threatening illness. The credibility of work was enhanced by the use of framework analysis that helped in detailed review of collected narratives and accounts of illness. Any potential bias during sample recruitment and sample analysis was removed by the process of research triangulation and discussion of findings with all research team.

1st Evidence

The review of study findings revealed paradoxical experience of living with cancer. Both negative and positive experience was reported by participants. Some of negative feelings that participants has were that of shock, sadness, disbelief, alienation, fear of periodic checkup and great distress. In addition, positive feelings such as realizing importance of life, being comfortable with one’s mortality and spiritual growth were also reported (Leal et al. 2015). Hence, the study proved that diagnosis of cancer throws a person into unfamiliar emotional experience and the psycho-social transition for some was positive and negative for others. This finding may help nursing staff to understand the emotional turmoil that a patient diagnosed with cancer goes through. The ethical consideration in the research is missing and since the study was part of a randomized controlled trial study, it has structural limitations too.

2^nd evidence:

The study by Sheilds et al. (2015) explored stories of people with living threatening illness by means of narrative inquiry within a social constructionist perspective. The use of narrative approach as a research methodology was appropriate according to the study objective as narrative analysis helps in collecting in-depth data and reconstructing participant’s views and experience. By the use of qualitative methodology, the research was done by conducting in-depth interview with patients diagnosed with cancer, chronic kidney disease and HIV. A total of four interviews were done with patient to collect data and this method of data collected deepened understanding about participant’s lived experience of living with cancer. The data was analyzed by means of narrative analysis and inductive analysis of interview transcript. The strength of data analysis process was that it helped in identifying patterns from narration and making valid conclusion about lived experience.

The exploration of interview transcript revealed that living with life threatening illness helped in achieving delicate balance between focus on living and awareness of death. Uncertainty was also a major part of their lives. Although the research was done with patient diagnosed with cancer, CKD and HIV, the response of cancer patients revealed shock of diagnosis, intensive treatment and living post-treatment as three elements of transitions post diagnosis. Hence, journeys of illness differs different illness types and this narrative account may help in planning holistic long-term care plan for cancer patient (Sheilds et al., 2015). The credibility of the work is enhancing by fulfilling all ethical consideration in research. However, one limitation is that it cannot be generalized as the experience is specific to participant and this may differ on the basis of socio-economic differences too. 

2nd Evidence

3^rd evidence:

Another research study by Li et al. (2015) had a clear objective of gaining a better understanding about experience of couples living with cancer. The research used purposive sampling methods to recruit Chinese couples were at least partner had received a medical diagnosis of cancer. Use of purposive sampling approach was useful as this helped to get target population as per research question. In addition, Li et al. (2015) adopted focus group study design to explore the lived experience of couples living with cancer and the main advantage of this approach was that it favored collecting data from the perspective of participant and exploring new areas of research too. The main interview question was related to perception of living with and managing cancer in both cancer patient and their partners and qualitative data analysis software was used to analyze data. This enhanced the transferability of the work. In addition, taking proper ethical considerations and considerations to improve trustworthiness enhanced the credibility of the work.

The findings of the study gave the insight regarding four themes of communication dynamics, living with changes, negative and positive impacts and network of support. The first theme revealed that communication played an important role in coping with cancer and this guided decision making about treatment option. Secondly, the second themes revealed that coping with various changes in life such as change in marital relationship, life plans and social activities was common among people. The third theme related to negative and positive impact revealed that adverse effect of chemotherapy and caregiver burden was adverse impact of living with cancer and discovering hope and accepting presence of cancer were positive aspects of living with cancer (Li et al. 2015). This finding may be useful for nurse to understand concern and caring needs of people living with cancer. The manner of arrangement of couples in each focus group was a limitation of the study as it complete set were not analyzed.

Based on the review of three research articles related to the lived experience of living with cancer, the similarities in findings of the studies was that all research gave idea about both positive as well negatives aspects of living with cancer. The positive point obtained from literature search was that patients diagnosed with cancer obtain a delicate balance between focused living and dealing with mortality. This is also consistent with the opinion of Stitzenberg et al. (2015). Another common theme was that psychosocial transition is a part of patient’s life as they transition from state of shock and disbelief to state of acceptance and hope post-treatment. However, some contrasting points were also obtained. For instance, Sheilds et al., (2015) showed challenges faced by patient in terms of medical culture and type of support provided. This may differ for individual context. In addition, Li et al. (2015) covered relationship aspect of burden too by conducting research with couples living with cancer. The author argued that diagnosis of cancer improves marital relationship of participants. Traa et al. (2015) also supports the fact that relationship functioning increase in couple after diagnosis of cancer.

From the review of research evidence, I have learned that diagnosis and living with cancer contributes to great stress and emotional trajectory in patients. Cancer has an impact on psychological, spiritual, physical, cultural and socio-economic aspects of well-being. I was able to wide contradictory emotions in participants. From this knowledge, I have learned that psychological well-being is also important for cancer patient to find meaning in their lives. I aim to be attentive to the complex emotional needs of cancer patients during practice and change my attitude to provide sensible care to patients. As I have also found that experience of participants are different based on treatment experience and kind of support received by family members, my goal is to apply my communication skills to listen attentively about patient’s experience after being diagnosed with cancer. This will help to understanding coping skills of patient and empower patient by building their resilience to manage life threatening illness (Jørgensen et al., 2018).

References:

Bruce, A., Sheilds, L., Molzahn, A., Beuthin, R., Schick-Makaroff, K., & Shermak, S. (2014). Stories of liminality: living with life-threatening illness. Journal of holistic nursing, 32(1), 35-43.

Cancer Australia (2018). All cancers in Australia. Retrieved from: https://canceraustralia.gov.au/affected-cancer/what-cancer/cancer-australia-statistics

Jørgensen, C. R., Thomsen, T. G., Ross, L., Dietz, S. M., Therkildsen, S., Groenvold, M., … & Johnsen, A. T. (2018). What facilitates “patient empowerment” in cancer patients during follow-up: A qualitative systematic review of the literature. Qualitative health research, 28(2), 292-304.

Leal, I., Engebretson, J., Cohen, L., Rodriguez, A., Wangyal, T., Lopez, G., & Chaoul, A. (2015). Experiences of paradox: a qualitative analysis of living with cancer using a framework approach. Psycho?Oncology, 24(2), 138-146.

Li, Q., Chiang, V. C. L., Xu, X., Xu, Y., & Loke, A. Y. (2015). The experiences of Chinese couples living with cancer: a focus group study. Cancer nursing, 38(5), 383-394.

Sheilds, L., Molzahn, A., Bruce, A., Makaroff, K. S., Stajduhar, K., Beuthin, R., & Shermak, S. (2015). Contrasting stories of life-threatening illness: A narrative inquiry. International Journal of Nursing Studies, 52(1), 207-215.

Stitzenberg, K. B., Chang, Y., Smith, A. B., & Nielsen, M. E. (2015). Exploring the burden of inpatient readmissions after major cancer surgery. Journal of Clinical Oncology, 33(5), 455.

Traa, M. J., De Vries, J., Bodenmann, G., & Den Oudsten, B. L. (2015). Dyadic coping and relationship functioning in couples coping with cancer: A systematic review. British Journal of Health Psychology, 20(1), 85-114.