The purpose of the present study was to learn about the experiences of parents of children diagnosed with renal failure at different stages of the disease in order to get closer to the process they carry out as caregivers. Semi-structured interviews were conducted with 12 parents and analyzed using interpretative phenomenological analysis method. Data analysis revealed two axes: spatial and temporal. The present article focuses on the temporal axis comprised of diagnosis, coping, and remission. These phases are discussed according to Frank’s illness narratives of chaos, quest, and restitution, representing stages in the sequence people undergo while coping with a disease. However, in the case of incurable diseases, such as end-stage renal disease, when there is no restitution and regression in the medical condition is followed by chaos, we suggest a new narrative structure, the Sisyphean Narrative, to symbolize the recurring nature of struggling with the disease.
BallyJ. M.HoltslanderL.DugglebyW.WrightK.ThomasR.SpurrS.MpofuC. (2014). Understanding parental experiences through their narratives of restitution, chaos, and quest: Improving care for families experiencing childhood cancer. Journal of Family Nursing, 20(3), 287–312. https://doi.org/10.1177%2F1074840714532716
2.
BarakA.LeichtentrittR. D. (2014). Configurations of time in bereaved parents’ narratives. Qualitative Health Research, 24(8), 1090–1101. https://doi.org/10.1177/1049732314541173
3.
BenvenisteS. (2011). The Sisyphean Narrative and the ill dyad: Illness experience of parents coping with their child’s chronic renal disease [Unpublished Master’s thesis, The Academic College of Tel-Aviv Yaffo].
CampbellJ. (1949). The hero with a thousand faces. Bollingen Foundation.
6.
CamusA. (1991). The myth of Sisyphus and other essays (O’BrienJ., Trans.). Vintage International. (Original work published 1942).
7.
ClandininD. J.ConnellyF. M. (2000). Narrative inquiry: Experience and story in qualitative research. Jossey-Bass.
8.
De ClercqE.ElgerB. S.WangmoT. (2017). Missing life stories. The narratives of palliative patients, parents and physicians in pediatric oncology. European Journal of Cancer Care, 26(6), Article e12651. https://doi.org/10.1111/ecc.12651
9.
DiverC.AvisM.GuptaA. (2013). Quest, chaos and restitution: The illness narratives of individuals diagnosed with fibromyalgia syndrome. In RichardsR.CreekJ. (Eds.), Chronicity, care and complexity (pp. 25–40). Inter-Disciplinary Press.
FranceE. F.HuntK.DowC.WykeS. (2013). Do men’s and women’s accounts of surviving a stroke conform to Frank’s narrative genres?Qualitative Health Research, 23(12), 1649–1659. https://doi.org/10.1177/1049732313509895
12.
FrankA. W. (2013). The wounded storyteller: Body, illness, and ethics. University of Chicago Press.
JacobyR.BenvenisteS.GoldzweigG. (2018). Illness as experienced by parents of children with end-stage renal disease: The “ill unit”.Illness, Crisis & Loss. Advance online publication. https://doi.org/10.1177/1054137318800874
16.
KieransC. (2005). Narrating kidney disease: The significance of sensation and time in the emplotment of patient experience. Culture, Medicine and Psychiatry, 29(3), 341–359. https://doi.org/10.1007/s11013-005-9171-8
17.
KleinmanA. (1988). The illness narratives: Suffering, healing, and the human condition. Basic Books.
18.
KnepperK. N.ArringtonM. I. (2016). Parents’ narratives in an online PHPV forum: Toward a typology of caregiver illness narratives. Illness, Crisis & Loss, 26(4), 316–329. https://doi.org/10.1177/1054137316667594
19.
MaciverD.JonesD.NicolM. (2010). Parents’ experiences of caring for a child with chronic pain. Qualitative Health Research, 20(9), 1272–1282. https://doi.org/10.1177/1049732310367499
20.
MazurekE. (2015). Illness narratives: Between personal experience, medical discourse, and cultural practice. Hrvatska revija za rehabilitacijska istrazivanja, 51(1), 48–58.
21.
McNeillT. (2004). Fathers’ experience of parenting a child with juvenile rheumatoid arthritis. Qualitative Health Research, 14(4), 526–545. https://doi.org/10.1177/1049732303262374
22.
MishlerE. G. (1984). The discourse of medicine: Dialectics of medical interviews. Ablex Publishing Corporation.
23.
MishlerE. G. (2005). Patient stories, narratives of resistance and the ethics of humane care: A la recherche du temps perdu. Health, 9(4), 431–451. https://doi.org/10.1177/1363459305056412
24.
MoolaF. J. (2012). “This is the best fatal illness that you can have”: Contrasting and comparing the experiences of parenting youth with cystic fibrosis and congenital heart disease. Qualitative Health Research, 22(2), 212–225. https://doi.org/10.1177/1049732311421486
25.
NicholasD. B. (1999). Meanings of maternal caregiving: Children with end stage renal disease. Qualitative Health Research, 9(4), 468–478. https://doi.org/10.1177/104973299129122009
26.
NosekM.KennedyH. P.GudmundsdottirM. (2012). “Chaos, restitution and quest”: One woman’s journey through menopause. Sociology of Health & Illness, 34(7), 994–1009. https://doi.org/10.1111/j.1467-9566.2011.01453.x
27.
ParsonsT. (1951). The social system. New York, NY: Free Press.
28.
RiessmanC. K. (1990). Strategic uses of narrative in the presentation of self and illness. Social Science & Medicine, 30(11), 1195–1200. https://doi.org/10.1016/0277-9536(90)90259-U
29.
RiessmanC. K. (2003). Performing identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research, 3(1), 5–33. https://doi.org/10.1177/146879410300300101
30.
RiessmanC. K. (2012). Analyzing personal narratives. In GubriumJ. F.HolsteinJ. A. (Eds.), Handbook of interview research: Context and method (pp. 695–710). Sage.
RoherS. I. G.GibsonJ.GibsonB. E.GuptaA. A. (2017). Listening through narratives: Using a narrative approach when discussing fertility preservation options with young cancer patients. Current Oncology, 24(1), 10–15. https://doi.org/10.3747/co.24.3419
33.
SmithJ. A.JarmanM.OsbornM. (1999). Doing interpretative phenomenological analysis. In MurrayM.ChamberlainK. (Eds.), Qualitative health psychology: Theories and methods (pp. 218–240). Sage.
34.
SmithJ. A.OsbornM. (2008). Interpretative phenomenological analysis. In SmithJ. A. (Ed.), Qualitative psychology. A practical guide to research methods (2nd ed., pp. 51–80). Sage.
35.
SparkesA. C.SmithB. (2002). Sport, spinal cord injury, embodied masculinities, and the dilemmas of narrative identity. Men and Masculinities, 4(3), 258–285. https://doi.org/10.1177/1097184x02004003003
36.
SparkesA. C.SmithB. (2008). Men, spinal cord injury, memories and the narrative performance of pain. Disability & Society, 23(7), 679–690. https://doi.org/10.1080/09687590802469172
37.
Thomas-MacLeanR. (2004). Understanding breast cancer stories via Frank’s narrative types. Social Science & Medicine, 58(9), 1647–1657. https://doi.org/10.1016/S0277-9536(03)00372-1
38.
TitusB.de SouzaR. (2011). Finding meaning in the loss of a child: Journeys of chaos and quest. Health Communication, 26(5), 450–460. https://doi.org/10.1080/10410236.2011.554167
39.
TwaddleA. (1994). Disease, illness and sickness revisited. In TwaddleA.NordenfeltL. (Eds.), Disease, illness and sickness: Three central concepts in the theory of health (pp. 1–18). Studies on Health and Society.
40.
WhiteheadL. C. (2006). Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis. Social Science & Medicine, 62(9), 2236–2245. https://doi.org/10.1016/j.socscimed.2005.09.008
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
