Cancer Qualitative Met a Analysis

7/31/2019 Cancer Qualitative Met a Analysis

1/8

THE EXPERIENCE OF SUFFERING IN CHILDREN WITH CANCER- A META-SYNTHESIS

From ISSUE 5 - February 2004 - www.thesufferingchild.net

Authors:Iris Epstein RN, MN; Patricia Orr RN, BSc( H), BScN.; Bonnie Stevens RN , PhDThe Hospital for Sick Children, Toronto, Ontario, CanadaFaculty of Nursing, University of Toronto, Toronto, Ontario, Canada

Corresponding author

Iris Epstein, RN, MN

Faculty of NursingUniversity of Toronto50 St. GeorgeToronto, OntarioCanadaEmail:[email protected]: 1-905-978-2392

Key words: child, suffering, distress, cancer experiences

ABSTRACTCancer is the leading cause of disease related death among children and adolescents 1.Despite the increase in survival rates, children and their families still face many challenges thatmake life with cancer difficult to bear2,3. Recently, there has been a call to alleviate thesuffering of dying children 4, 5 Suffering has been viewed as a fundamental human response toloss: loss of health, loss of a painfree life, and loss of self 6. According to Morse (2001)suffering is a process and movement between two states: emotional suffering and enduring.On the basis of this conceptualization of suffering, the purpose of this paper is, through aqualitative meta-synthesis of studies on children with cancer, to elucidate the meanings andbehaviors of the experiences of cancer in the context of suffering.


2/8

From THE SUFFERING CHILD - ISSUE 5- February 2004 www.thesufferingchild.net

2

INTRODUCTION

Cancer is the leading cause of disease related death among children and adolescents1.

However, today more children are surviving cancer than in the past2. Despite the increase insurvival rate, children and their families still face many challenges and endure sufferingexperiences that make life with cancer difficult to bear3. Recently, there has been a call in theliterature to alleviate the suffering of dying children 4, 5. However, there is limited discussion inthe literature regarding childrens experiences of suffering during illness and their relatedresponses. Since nurses are at the bedside through out the course of the illness course, theyare often the source of primary-support for those suffering. Thus, understanding suffering andthe patients responses to suffering is at the heart of nursing care

7. However, before suffering

can be alleviated, it must be understood.Suffering has been viewed as a fundamental human response to loss; loss of health, loss of apainfree life, and loss of self 6. Furthermore, Cassel (1982) defined suffering as a struggleoccurring when an impeding destruction of the person is perceived and that it continues untilthe threat of destruction has passed or until the integrity of the person can be restored in some

other manner (p.33). Morse (2001) views suffering as process and movement between twostates; suffering and enduring. Enduring occurs when a threat to self is recognized as real andthe emotional response is suppressed, in order to manage the situation. Contrastingly,suffering is a very emotional state, where the person is filled with sadness. In this paper, thisconceptualization of suffering will be retained as a basis for a meta-synthesis process,examining how children and adolescents with cancer experience suffering and endurance.

METHOD

Meta-synthesis is an essential method for accumulating knowledge from individual qualitativestudies; the objective of meta-synthesis is not to aggregate results, but rather to interpret

results and expand knowledge regarding a particular phenomenon8,,9

. In addition, meta-synthesis profits from the various methodological and theoretical contexts particular to thestudies included 10. Unlike critical reviews or integrative literature reviews written in narrativeform, meta-synthesis allows for both interpretation and meaningful synthesis of the findingsfrom individual research studies10, 11. Paterson et al. (2001) guided the analysis of the datain which the member of the team analyzed each primary research report independently andthen the team came together to compare similarities and differences in interpretation and toarrive at a consensual decision regarding interpretation of the research.Following Paterons method, primary research reports were selected from nursing/caringjournals and allied health and social science literature published from January 1993 to January2003, whose authors used a qualitative or combined qualitative/quantitative method. Research

reports were identified by a search in computerized databases (CINAHL, MEDLINE, PSYCH-INFO Via OVID). Seventeen primary research reports met the following inclusion criteria12-28:(a) participants were children and adolescents with cancer between the ages of 5-21 years old(in this paper children will refer to this age group), and (b) the researcher(s) investigated theexperiences of living with cancer and focused on concepts that explicitly or implicitly includedsuffering and were included in the meta-synthesis.After individual review of each of the 17 reports by two team members (IE, PO) and thendiscussion by all of the team, five different concepts emerged in relation to the phenomenon ofsuffering: initial response, loss of body-loss of life, enduring, struggling for normalcy, andturning point.


3/8


3

1)The initial response:The initial response is comprised of the childs emotional responses to the following situations :the initial cancer diagnosis, the beginning of treatment, the ending of treatment, and therecurrence of cancer. The keywords particular to describing childrens initial responses were:uncertainty, shock, disbelief, feeling depressed, feeling aggressive, irritation, mood swings andthoughts of death and dying. Children often asked why questions. The dynamic of

communication among children, parents and health care professionals affected howinformation was received in the initial stages. Hockenberry-Eaton (1994) reported that theinitial diagnosis was sometimes given abruptly with no further explanation: my mom camehome and said I had cancer and we had to go to the hospitalthat kind of scared me becauseI didnt know what was going on (p.1027).2) Loss of body-loss of life:Cancer and its treatment were associate with children being weak, tired, and generallychanged from their previous normal state. Furthermore, when the cancer affected the body, italso invaded other aspects of the childs life, such as the childs mental and physical abilities,as well as the childs relationships with others and with self. As these were aspects of lifemeaningful to the child, a body with cancer meant a body that was restricted and dependent.Not only was life, as previously known to the children lost in living with pain and cancer, but thechildren also faced thoughts of their possible death.Loss of mental capacity:Symptoms believed to be long term and associated with permanent damage ordisability were often difficult to accept. One 11-year-old cancer survivor talked withregret and sadness about the effect that extensive treatments, namely cranial radiationtreatment, had on her mental abilities. She blamed the treatment for her inability to domath in school14.Loss of parts of the body:Threats to the body included the physical loss of parts of the body. According to Weekes et al.

(1993), the subjective experience of pain associated with needle insertion in treatment wasexacerbated by the childrens concern regarding the removal of their bodily substances (i.e.the removal of spinal fluid in a lumber puncture). In addition, some children had to undergoamputation of a limb. Loss of a body part may also relate to other losses that result independence on others, such as losing the ability to walk.Loss of relationships:The cancer treatments physically separated the children from their peers, as they were notable to attend school or be involved in usual activities: I really longed to go back to school andmost of all to my friends 18(p. 1488). For the child, obvious changes in appearance due totreatment and disease were difficult to live with, especially for girls, I often think that becauseI do not have hair, boys will not take any interest in me (Enskar et al.,1997, p. 8). Loss of

relationships also refers to the loss of the childs relation to self. As one child said: while I wason therapy my mom drove me crazy. She was always on my case about my treatments. If Itried to talk about something else, she got mad and said I was not paying attention to mycondition. Now that my therapy is over, maybe we can talk about something else and she canpay attention to me 19, (p. 666).Loss of time:Waiting was a recurring experience throughout the course of the cancer. Adolescents had towait for test results, for treatment to end, for the cancer to respond to treatment, and fordoctors appointments. Waiting required that life be put on hold and that the child remainsuspended in the present. Not only was time lost, but future life plans were affected by the lossof time as well.


4/8


5/8


5

The children displayed the ability to accept what had changed in their lives and to find a newlevel of normalcy.The theme of getting used to it or not illustrates the struggles children experience duringactive treatment. According to Stewart (2003), children got used to the cancer during thetreatment. Children and adolescents were seeing their everyday lives as routine and ordinarydespite their cancer diagnosis and treatments. Weekes and Kagan (1994) noted that, with

time, children moved toward a normal life. Conversely, Woodgate and Degner (2003) reportedthat getting used to cancer was unrealistic because the suffering was always present. A 16-year-old boy explained: you do not really get used to cancer and its symptomsyou adapt toit. And I do not think theres any way that you can totally prepare because there are no actualguarantees (p. 484).5)Turning Point:A turning point occurs as the children, after diagnosis, face the demands of cancer and theconsequences of the disease for their present life. In addition, the turning point also includesthe childs construction and assigning of meaning to the cancer experience.The children appeared to realize at some point that they are not the same person after theexperience of cancer as they were before diagnosis. However, when therapy ended they wereexpected to go back to their previous life, evidenced by the statement: they say, you donthave cancer anymore, so, well do something with your life

19, p. 1486). Through assigning

meaning to the experience, the theme of turning point also refers to a resulting changedidentity: having cancer has made me not normal, but thats good because it means Im notboring like my friends. Im different. Im special. So I am holding on to cancer for dear life. I donot want it to go away I like being different 19, p. 667).Children saw the end of treatment as an opportunity to improve themselves both physicallyand mentally. They described a desire to extend themselves to help others: having cancer hashelped me change my ways 19,(p. 667). In general, there was a belief that the cancer hadmade them a better person: it made me better and more loving and stuffI do not really

remember if I loved people before

16

,(p.1029) Personal growth also included attaining aphilosophical perspective and increased maturity during the illness experience12, 13, 19, 21

.Moving on and learning from the experiences of cancer represented a turning point: I havebecome more mature due to thissome things they think are important but I think they arenothing 19, (p.667). Developing a positive attitude, becoming more spiritual, and putting thecancer experience into a larger life perspective also represented turning points for the children.

DiscussionMorses6, 29, 30 two states of suffering oppose one another, each demanding that the individualbe treated in different ways. This meta-synthesis further reveals that although not always alinear progression, in general, the suffering experience traverses from the childs initial

response to a changed reality (i.e why did I get the cancer?) to the turning point, wheresome children actually say, I am glad I got it. During this process, the child faces personalchallenges including the loss of body and life as it was once known and the struggle fornormalcy. Children manage to bear such ordeal only through expressing their emotions, butalso through enduring.Individuals who suffer emotionally recognize the meaning of what is lost (Morse 2001). Havingcancer means being different from others and children struggle for normalcy despite thecancer. When children accept their losses, there is a movement to redefine the future. Thistransformation can be named the turning point, as a reformulated self (Morse, 2001) hasevolved through the illness experience.


6/8


6

Understanding the suffering experiences in children with cancer is an essential step for nursesand doctors to recognize and appropriately intervene when caring for these children. Futureresearch could address the influence of culture on the experience of suffering, the use oftechniques that could complement interviews (such as video, cameras, drawing or journaling),and thereby foster trust and assist the children to express their suffering experiences, as wellas the endurance phase of the suffering experiences of children during cancer.

REFERENCES

1. Guyer B, MacDorman MF, Martin JA. Annual summary of vital statistic. Pediatrics.1998;102:1333-1349.

2. Langeveld N, Ubbink M, Smets E. 'I don't have any energy':the experience of fatigue inyoung adult survivors of childhood cancer. European Journal of Oncology Nursing.2000;4:20-28.

3. Woodgate, Degner LF. 'nothing is carved in stone': uncertainty in children with cancer andtheir families. European Journal of Oncology Nursing.2002;6(4):191-202.

4. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children withcancer. The new England Journal of Medecine.2000;342(5):326-333.

5. Kane JR, Primomo M. Alleviating the suffering of seriously ill children,. American Journalof Hospice & Palliative Care.2001;18:161-169.

6. Morse J. Qualitative health research: challenges for the 21st century. qualitative healthresearch.2002;12(1):116-129.

7. Morse J. Toward a praxis theory of suffering. Advance in nursing science.2001;24:47-59.

8. Paterson B, Thorne S, Canam C, Jillings C. Meta-Study of qualitative health research: apractical guide to meta-analysis and meta synthesis. thousand Oaks: sage publication; 2002.

9. Jensen L, Allen M. meta-synthesis of qualitative findings. qualitative health research.1996;6:553-560.

10. Beck C, T. seeing the forest for the trees: A qualitative synthesis project. Journal ofnursing education.2002;42(7):318-323.

11. Noblit GW, Hare RD. Meta-ethnography:synthesizing qualitative studies. Newbury Park,CA.: sage; 1988.

12. Enskar K, Carlsson M, Golsater M, Hamrin E. Symptom distress and life situation inadolescents with cancer. Cancer Nursing.1997;20(1):23-33.


7/8


7

13. Enskar K, Carlsson M, Golsater M, Hamrin E, A. K. Life situation and problems asreported by children with cancer and their parents. journal of pediatric oncology nursing.1997;14(1):18-26.

14. Woodgate RL, Degner LF. Expectation and beliefs about children's cancer symptoms:perspectives of children with cancer and their families. Oncology nursing Forum.

2003;30(3):479-491.

15. Hockenberry-Eaton M, Hinds PS, Alcoser P, et al. Fatigue in children and adolescentswith cancer. journal of pediatric oncology nursing.1998;15(3):172-182.

16. Hockenberry-Eaton M, Minick P. Living with cancer:children with extraordinary courage.Oncology nursing Forum.1994;21(6):1025-1031.

17. Davies B, Whitsett SF, Bruce A, McCarthy P. A Typology of fatigue in children withcancer. journal of pediatric oncology nursing.2002;19(1):12-21.

18. Haase JE, Rostad M. Experiences of completing cancer therapy: children perspectives.Oncology nursing Forum.1994;21(9):1483-1494.

19. Weekes DP, Kagan HK. Adolescents completing cancer therapy:meaning,perception andcoping. Oncology nursing Forum.1994;21(4):663-670.

20. Weekes DP, Kagan HK, James K, Seboni N. the phenomena of hand holding as a copingstrategy in adolescents experiencing treatment-related pain. journal of pediatric oncologynursing.1993;10:19-25.

21. Kameny R, Bearison D. cancer narratives of adoelscents and youth adukt: a qualitativeand quantitative analysis. children's health care.2002;3(2):143-173.

22. Hanna KM, Jacobs P. The use of photography to explore the meaning of health amongadolescents with cancer. Issues in comprehensive pediatric nursing.1993;16:155-164.

23. Cavusoglu H. problems related to the diagnosis and treatment of adolescents withleukemia. Issues in comprehensive pediatric nursing.2000;23:15-26.

24. Young B, Dixon-Woods M, Windridge KC, Heney D. Managing communication with youngpeople who have a potential life threatening chronic illness:qualitative study of patients and

parents. British Medical Journal.2003;326(7384):305-316.

25. Hedstrom M, Haglund K, Skolin I, Von Essen L. Distressing events for children andAdolescents with cancer:child, parent and nurse perceptions. journal of pediatric oncologynursing.2003;20(3):120-132.

26. Stewart JL. "Getting used to it":children finding the ordinary and routine in the uncertaintycontext of cancer. qualitative health research.2003;13(3):394-407.

27. Hicks J, Bartholomew J, Ward-Smith P, C. H. Quality of life among childhood leukemiapatients. Journal of Pediatric Oncology Nursing.2003;20(4):192-200.


8/8


8

28. Drew S. Self reconstruction and biographical revisioning: survival following cancer inchildhood & adolescent. Health.2003;7(2):181-199.

29. Morse J, Penrod J. Qualitative outcome Analysis: evaluating nursing interventions forcomplex clinical phenomena. Journal of nursing scholarship.2000;32:125-130.

30. Morse J, Penrod J. Linking concepts of enduring,uncertainty,suffering and hope. Image:journal of nursing scholarship.1999;31(2):145-150.

Cancer Qualitative Met a Analysis

Documents

Transcript of Cancer Qualitative Met a Analysis