Personal narratives are assumed to be primary sources of the essential meaning of lived experiences of dying. In this study, I analyzed the personal diary of Miraç Fidan, a terminally ill adolescent with advanced cancer who kept a diary until her death at the age of 15. Miraç’s Diary, also published as a book, was subjected to hermeneutic phenomenological narrative analysis. Inferences were drawn regarding the following basic elements: (a) The dynamics in which Miraç lived and (2) her perceptions of herself, her immediate environment, and her experiences. Suffering seems to be the main experience dominating Miraç’s life, which I examined with regard to two dimensions: suffering caused by inevitable factors and suffering caused by preventable/changeable factors. The results suggest that if various causes among contextual factors are neutralized, then the quality of the existential experience determined by the inevitable factors would increase.
AlaszewskiA. (2006) Diaries as a source of suffering narratives: A critical commentary. Health, Risk & Society8: 43–58.
2.
AmirZ.NearyD.LukerK. (2008) Cancer survivors’ views of work 3 years post diagnosis: A UK perspective. European Journal of Oncology Nursing12: 190–197.
3.
BalkD. E. (2009) Adolescent development: The backstory to adolescent encounters with death and bereavement. In: BalkD. E.CorrC. A. (eds) Adolescent encounters with death, bereavement, and coping, New York, NY: Springer Publishing Company, pp. 3–20.
4.
BingleyA. F.McDermottE.ThomasC.PayneS.SeymourJ. E.ClarkD. (2006) Making sense of dying: A review of narratives written since 1950 by people facing death from cancer and other diseases. Palliative Medicine20: 183–195.
5.
BrodyH. (1994) “My story is broken; can you help me fix it?” Medical ethics and the joint construction of narrative. Literature and Medicine13: 79–92.
6.
BrownP.de GraafS. (2013) Considering a future which may not exist: The construction of time and expectations amidst advanced-stage cancer. Health, Risk & Society15: 543–560.
7.
CarlanderI.TernestedtB. M.Sahlberg-BlomE.HellströmI.SandbergJ. (2011) Being me and being us in a family living close to death at home. Qualitative Health Research21: 683–695.
8.
CassellE. J. (2014) Pain and suffering. In: JenningsB. (ed.) BioethicsVol. 5, Farmington Hills, MI: Gale, Cengage Learning, pp. 2283–2291.
9.
ChoquetteA.RennickJ. E.LeeV. (2015) Back to school after cancer treatment: Making sense of the adolescent experience. Cancer Nursing39: 393–401.
10.
ClarkeJ. N.FletcherP. (2003) Communication issues faced by parents who have a child diagnosed with cancer. Journal of Pediatric Oncology Nursing20: 175–191.
11.
ClineR. J. W.HarperF. W. K.PennerL. A.PetersonA. M.TaubJ. W.AlbrechtT. L. (2006) Parent communication and child pain and distress during painful pediatric cancer treatments. Social Science & Medicine63: 883–898.
CrossleyM. L. (2003) ‘Let me explain’: Narrative emplotment and one patient’s experience of oral cancer. Social Science & Medicine56: 439–448.
14.
CurtisJ. R.WenrichM. D.CarlineJ. D.ShannonS. E.AmbrozyD. M.RamseyP. G. (2001) Understanding physicians’ skills at providing end-of-life care. Journal of General Internal Medicine16: 41–49.
15.
de BoerA. G.TaskilaT.TammingaS. J.Frings-DresenM. H.FeuersteinM.VerbeekJ. H. (2011) Interventions to enhance return-to-work for cancer patients. Cochrane Database of Systematic Reviews16(2): CD007569,
16.
DeckerC. L. (2007) Social support and adolescent cancer survivors: A review of the literature. Psychooncology16: 1–11.
17.
de GraaffF. M.MistiaenP.DevilléW. L. J. M.FranckeA. L. (2012) Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: A systematic literature review. BMC Palliative Care11: 17.
18.
DennyE. (2009) ‘I never know from one day to another how I will feel”: Pain and uncertainty in women with endometriosis. Qualitative Health Research19: 985–995.
19.
EdwardsM. E. B. (2009) Children’s and young people’s experiences of being in hospital: Disruption, uncertainty, powerlessness and restoring equilibrium. Unpublished doctoral dissertation, University of Central Lancashire, Preston, Lancashire, England.
20.
EgerodI.ChristensenD. (2009) Analysis of patient diaries in Danish ICUs: A narrative approach. Intensive and Critical Care Nursing25: 268–277.
21.
ElçigilA.ConkZ. (2010) Determining the burden of mothers with children who have cancer. Electronic Journal of Dokuz Eylul University School of Nursing3: 175–181.
22.
EvanE. E.KaufmanM.CookA. B.ZeltzerL. K. (2006) Sexual health and self-esteem in adolescents and young adults with cancer. Cancer107(7 Suppl): 1672–1679.
23.
FidanM. (2006) Miraç’ın Günlüğü [Miraç’s diary], Ankara, Turkey: Ankara University Faculty of Medicine, Publication of Children Support Group.
24.
FinsJ. J.GuestR. S.AcresC. A. (2000) Gaining insight into the care of hospitalized dying patients: An interpretative narrative analysis. Journal of Pain and Symptom Management20: 399–407.
25.
Gibson, F., Aldiss, S., Horstman, M., Kumpunen, S. & Richardson, A. (2010). Children and young people's experiences of cancer care: a qualitative research study using participatory methods. International Journal of Nursing Studies, 47, 1397–1407.
26.
GibsonF.RichardsonA.HeyS.HorstmanM.O’LearyC. (2005) Listenıng to children and young people with cancer, London, United Kingdom: Institute of Child Health, King’s College London.
27.
GlassonJ. E. (1995) A descriptive and exploratory pilot study into school re-entrance for adolescents who have received treatment for cancer. Journal of Advanced Nursing22: 753–758.
28.
GrassiL.GiraldiT.MessinaE. G.MagnaniK.ValleE.CarteiG. (2000) Physicians’ attitudes to and problems with truth-telling to cancer patients. Supportive Care in Cancer8: 40–45.
29.
HandschelJ.GellrichN. C.BremerichA.KrüskemperG. (2013) Return to work and quality of life after therapy and rehabilitation in oral cancer. In Vivo27: 401–407.
30.
HarrisM. S. (2009) School reintegration for children and adolescents with cancer: The role of school psychologists. Psychology in the Schools46: 579–592.
31.
HawkesG.HoughtonJ.RoweG. (2009) Risk and worry in everyday life: Comparing diaries and interviews as tools in risk perception research. Health, Risk & Society11: 209–230.
32.
JamesK.Keegan-WellsD.HindsP. S.KellyK. P.BondD.HallB.SpeckhartB. (2002) The care of my child with cancer: Parents’ perceptions of caregiving demands. Journal of Pediatric Oncology Nursing19: 218–228.
33.
JanssenA. L.MacLeodR. D. (2010) What can people approaching death teach us about how to care?Patient Education and Counselling81: 251–256.
34.
JokinenE. (2004) The makings of mother in diary narratives. Qualitative Inquiry10: 339–359.
35.
JonesR. K. (2000) The unsolicited diary as a qualitative research tool for advanced research capacity in the field of health and illness. Qualitative Health Research10: 555–567.
36.
KaunA. (2010) Open-ended online diaries: Capturing life as it is narrated. International Journal of Qualitative Methods9: 133–148.
37.
Keim-MalpassJ.AlbrechtT. A.SteevesR. H.DanhauerS. C. (2013) Young women’s experiences with complementary therapies during cancer described through illness blogs. Western Journal of Nursing Research35: 1309–1324.
38.
KennedyF.HaslamC.MunirF.PryceJ. (2007) Returning to work following cancer: A qualitative exploratory study into the experience of returning to work following cancer. European Journal of Cancer Care16: 17–25.
39.
KimB.GillhamD. M. (2013) The experience of young adult cancer patients described through online narratives. Cancer Nursing36: 377–384.
40.
KruegerR. A.CaseyM. A. (2000) Focus groups: A practical guide for applied research, Thousand Oaks, CA: Sage.
41.
KuhlD. (2002) What dying people want: Practical wisdom for the end of life, New York, NY: Public Affairs.
42.
Kyngäs, H., Mikkonen, R., Nousiainen, E. M., Rytilahti, M., Seppänen, P., Vaattovaara, R., & Jamsa, T. (2001). Coping with the onset of cancer: Coping strategies and resources of young people with cancer. European Journal of Cancer Care, 10, 6–11.
43.
LindsethA.NorbergA. (2004) A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences18: 145–153.
44.
LövgrenM.HambergK.TishelmanC. (2010) Clock time and embodied time experienced by patients with inoperable lung cancer. Cancer Nursing33: 55–63.
45.
MackJ. W.HildenJ. M.WattersonJ.MooreC.TurnerB.GrierH. E.WolfeJ. (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. Journal of Clinical Oncology23: 9155–9161.
46.
McLooneJ. K.WakefieldC. E.ButowP.FlemingC.CohnR. J. (2011) Returning to school after adolescent cancer: A qualitative examination of Australian survivors’ and their families’ perspectives. Journal of Adolescent and Young Adult Oncology1: 87–94.
47.
MeierD. E.BackA. L.MorrisonR. S. (2001) The inner life of physicians and care of the seriously ill. JAMA286: 3007–3014.
48.
MishelM. H. (1988) Uncertainty in illness. Journal of Nursing Scholarship20: 225–232.
49.
MolonyS. L. (2010) The meaning of home: A qualitative meta-synthesis. Research in Gerontological Nursing3: 291–307.
50.
MonrouxeL. V. (2009) Solicited audio diaries in longitudinal narrative research: A view from inside. Qualitative Research9: 181–103.
51.
NantonV.DochertyA.MeystreC.DaleJ. (2009) Finding a pathway: Information and uncertainty along the prostate cancer patient journey. British Journal of Health Psychology14: 437–458.
52.
NevilleK. (1998) The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. Journal of Pediatric Oncology Nursing15: 37–46.
53.
NorbergA. L.LindbladF.BomanK. K. (2005) Coping strategies in parents of children with cancer. Social Science & Medicine60: 965–975.
54.
OhlénJ.EkmanI.ZingmarkK.BolmsjöI.BenzeinE. (2014) Conceptual development of “at-homeness” despite illness and disease: A review. International Journal of Qualitative Studies on Health and Well-Being9: 23677,
55.
OkyayuzÜ. (2003) Ölümcül hastalık tanısı almak: Bir yaşam krizi. Kötü haber verilmeli mi? [Being diagnosed with a deadly illness: A life crisis. Should bad news be broken?]. Kriz Dergisi11: 29–35.
56.
PapadatouD. (2009) In the face of death: Professionals who care for the dying and the bereaved, New York, NY: Springer Publishing Company.
57.
PavlenkoA. (2007) Autobiographic narratives as data in applied linguistics. Applied Linguistics28: 163–188.
58.
PeteetJ. R. (2000) Cancer and the meaning of work. General Hospital Psychiatry22: 200–205.
59.
PlowfieldL. A. (1999) Living a nightmare: Family experiences of waiting following neurological crisis. Journal of Neuroscience Nursing31: 231–238.
60.
QuillT. E. (2000) Initiating end-of-life discussions with seriously ill patients: Addressing the “elephant in the room.”. JAMA284: 2502–2507.
61.
RasmussenD. M.ElverdamB. (2007) Cancer survivors’ experience of time—Time disruption and time appropriation. Journal of Advanced Nursing57: 614–622.
62.
RileyT.HaweP. (2005) Researching practice: The methodological case for narrative inquiry. Health Education Research20: 226–236.
63.
SalanderP. (2002) Bad news from the patient’s perspective: An analysis of the written narratives of newly diagnosed cancer patients. Social Science & Medicine55: 721–732.
64.
SandebergM. (2011) Childhood cancer and school. Unpublished doctoral dissertation, Karolinska Institutet, Solna, Stockholm, Sweden.
65.
SerenA. K. H. (2014) Opinions of health employees about the health transformation project. Journal of Health and Nursing Management1: 19–24.
66.
Sheilds, L., Molzahn, A., Bruce, A., Makaroff, K. S., Stajduhar, K., Beuthin R., & Shermak, S. (2014). Contrasting stories of life-threatening illness: A narrative inquiry. International Journal of Nursing Studies, 52, 207–215.
67.
SkottC.ErikssonA. (2005) Clinical caring—The diary of a nurse. Journal of Clinical Nursing14: 916–21.
68.
Smith, S., Davies, S., Wright, D., Chapman, C. & Whiteson, M. (2007). The experiences of teenagers and young adults with cancer–results of 2004 conference survey. European Journal of Oncology Nursing, 11, 362–368.
69.
SolomonS.GreenbergJ.PyszczynskiT. (2004) The cultural animal: Twenty years of terror management theory and research. In: GreenbergJ.KooleS. L.PyszczynskiT. (eds) Handbook of experimental existential psychology, New York, NY: The Guilford Press, pp. 15–36.
70.
SönmezM. O.SevindikF. (2013) The effect of transformation in health on health personnel: To be family health personnel. TAF Preventive Medicine Bulletin12: 43–48.
71.
StevensM. M.DunsmoreJ. C.BennettD. L.YoungA. J. (2009) Adolescents living with life-threatening illness. In: BalkD. E.CorrC. A. (eds) Adolescent encounters with death, bereavement, and coping, New York, NY: Springer Publishing Company, pp. 115–140.
72.
SuzukiL. K.KatoP. M. (2003) Psychosocial support for patients in pediatric oncology: The influences of parents, schools, peers, and technology. Journal of Pediatric Oncology Nursing20: 159–174.
73.
SvenaeusF. (2000a) The body uncanny—Further steps towards a phenomenology of illness. Medicine, Health Care and Philosophy3: 125–137.
74.
SvenaeusF. (2000b) Das unheimliche—Towards a phenomenology of illness. Medicine, Health Care and Philosophy3: 3–16.
75.
TiedtkeC.de RijkA.Dierckxde CasterléB.ChristiaensM. R.DonceelP. (2010) Experiences and concerns about ‘returning to work’ for women breast cancer survivors: A literature review. Psychooncology19: 677–683.
76.
TraskP. C.PatersonA. G.TraskC. L.BaresC. B.BirtJ.MaanC. (2003) Parent and adolescent adjustment to pediatric cancer: Associations with coping, social support, and family function. Journal of Pediatric Oncology Nursing20: 36–47.
77.
van derMolenB. (2000) Relating information needs to the cancer experience. 2. Themes from six cancer narratives. European Journal of Cancer Care9: 48–54.
78.
van LaarhovenH. W. M.SchildermanJ.VerhagenC. A. H. H. V. M.PrinsJ. B. (2011) Time perception of cancer patients without evidence of disease and advanced cancer patients in a palliative, end-of-life-care setting. Cancer Nursing34: 453–463.
79.
van ManenM. (1990) Researching lived experience: Human science for an action sensitive pedagogy, London, ON: State University of New York Press.
80.
WenrichM. D.CurtisJ. R.ShannonS. E.CarlineJ. D.AmbrozyD. M.RamseyP. G. (2001) Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Archives of Internal Medicine161: 868–874.
81.
WilliamsC. M.WilsonC. C.OlsenC. H. (2005) Dying, death, and medical education: Student voices. Journal of Palliative Medicine8: 372–381.
82.
WinslowM.SeymourJ.ClarkD. (2005) Stories of cancer pain: A historical perspective. Journal of Pain and Symptom Management29: 22–31.
83.
WoodgateR. L.DegnerL. F. (2003) A substantive theory of keeping the spirit alive: The spirit within children with cancer and their families. Journal of Pediatric Oncology Nursing20: 103–119.
84.
YalomI. D. (1980) Existential psychotherapy, New York, NY: Basic Books.
85.
YoungerJ. B. (1995) The alienation of the sufferer. Advances in Nursing Science17: 53–72.
86.
ZebrackB. J.MillsJ.WeitzmanT. S. (2007) Health and supportive care needs of young adult cancer patients and survivors. Journal of Cancer Survivorship1: 137–145.
87.
ZhangA. Y.SiminoffL. A. (2003) Silence and cancer: Why do families and patients fail to communicate?Health Communication15: 415–429.
88.
ZingmarkK.NorbergA.SandmanP.-O. (1995) The experience of being at home throughout the life span. Investigation of persons aged from 2 to 102. International Journal of Aging and Human Development41: 47–62.
