Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity
https://doi.org/10.4081/qrmh.2021.9174
Accepted: 1 April 2021
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. Our objective was to understand why those parents’ interactions with the medical world were so different, ranging from hostile to collaborative, with the themes of identity, spirituality and serenity. A grounded theory design based on the narrative identity framework was used to interview sixteen parents. Three categories emerged: i) Parents in the Almighty category delegate all their power to God or medicine and are the most suffering parents as they do not author their life; ii) Parents in the Me category make every decision on their own causing much anxiety, and they become rebarbative to the medical world; iii) Parents in the Guide category take advice from others, while remaining the authors of their stories and are the most serene parents. Understanding and recognizing these categories can have a major impact on communication with those families.
Benkel I, Molander U. A Qualitative study of the experiences of parents with an adult child who has a severe disease: existential questions will be raised. Inquiry 2017;54:46958017727107. DOI: https://doi.org/10.1177/0046958017727107
Scorgie K, Sobsey D. Transformational outcomes associated with parenting children who have disabilities. Mental Retard 2000;38:195-206. DOI: https://doi.org/10.1352/0047-6765(2000)038<0195:TOAWPC>2.0.CO;2
Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illness 1983;5:168-95. DOI: https://doi.org/10.1111/1467-9566.ep10491512
Sheikhzakaryaee N, Atashzadeh-Shoorideh F, Ahmadi F, Fani M. Psychological limbo as a barrier to spiritual care for parents of children with cancer: a qualitative study. Asian Pacific J Cancer Prev 2018;19:1063-8.
Nicholas DB, Barrera M, Granek L, et al. Parental spirituality in life-threatening pediatric cancer. J Psychosoc Oncol 2017;35:323-34. DOI: https://doi.org/10.1080/07347332.2017.1292573
Wilson C, Cook C. Ambiguous loss and post-traumatic growth: Experiences of mothers whose school-aged children were born extremely prematurely. J Clin Nurs 2018;27:e1627-e39. DOI: https://doi.org/10.1111/jocn.14319
Tuval-Mashiach R, Hasson-Ohayon I, Ilan A. Attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa. Psychol Health 2014;29:613-31. DOI: https://doi.org/10.1080/08870446.2013.879135
Gray DE. Accommodation, resistance and transcendence: three narratives of autism. Social Sci Med (1982) 2001;53:1247-57. DOI: https://doi.org/10.1016/S0277-9536(00)00424-X
Raines DA. Suspended mothering: women's experiences mothering an infant with a genetic anomaly identified at birth. Neonatal Network 1999;18:35-9. DOI: https://doi.org/10.1891/0730-0832.18.5.35
Abdoljabbari M, Sheikhzakaryaee N, Atashzadeh- Shoorideh F. Taking refuge in spirituality, a main strategy of parents of children with cancer: a qualitative study. Asian Pacific J Cancer Prev 2018;19:2575-80.
Anum J, Dasti R. Caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. J Religion Health 2016;55:941-55. DOI: https://doi.org/10.1007/s10943-015-0127-1
Sheldrake P. The New Westminster Dictionary of Christian Spirituality - Paperback. Louisville: Westminster John Knox Press 2013: p.702.
Ricœur P. Time and narrative. University of Chicago Press; 1985.
Bury M. Chronic illness as biographical disruption. Sociol Health Illness 1982;4:167-82. DOI: https://doi.org/10.1111/1467-9566.ep11339939
Castellanos MEP, Barros NF, Coelho SS. Biographical ruptures and flows in the family experience and trajectory of children with cystic fibrosis. Ciencia & Saude Coletiva 2018;23:357-68. DOI: https://doi.org/10.1590/1413-81232018232.16252017
Frank AW. The wounded storyteller: body, illness, and ethics. Second Edition: University of Chicago Press; 2013.
Delmar C, Bøje T, Dylmer D, et al. Achieving harmony with oneself: life with a chronic illness. Scandinavian J Caring Sci 2005;19:204-12. DOI: https://doi.org/10.1111/j.1471-6712.2005.00334.x
Kreitzer MJ, Gross CR, Waleekhachonloet OA, et al. The brief serenity scale: a psychometric analysis of a measure of spirituality and well-being. J Holistic Nurs 2009;27:7-16. DOI: https://doi.org/10.1177/0898010108327212
Creswell JW. Qualitative Inquiry and Research Design: Choosing Among Five Traditions. 3 ed. Thousand Oaks, California: Sage; 2017.
Le Breton D. L’interactionnisme symbolique. Paris cedex 14: Presses Universitaires de France; 2012: p. 256. DOI: https://doi.org/10.3917/puf.lebre.2012.03
Anderson M, Tulloch-Reid MK. "How am I gonna cope?": Caregivers of adolescents with diabetes in Jamaica. Chronic Illness 2018:1742395318769373. DOI: https://doi.org/10.1177/1742395318769373
Tripkovic M, Bakija I, Sindik J, et al. Family financial situation, parental marital status and self-harm amongst adolescents in croatia. Acta Clinica Croatica 2017;56:469-77. DOI: https://doi.org/10.20471/acc.2017.56.03.14
Hollway W, Jefferson T. Doing Qualitative Research Differently: A Psychosocial Approach: SAGE Publications; 2012. DOI: https://doi.org/10.4135/9781526402233
Paillé P, Mucchielli A. L'analyse qualitative en sciences humaines et sociales. Armand Colin; 2016. DOI: https://doi.org/10.3917/arco.paill.2016.01
Robinson I. Personal narratives, social careers and medical courses: analysing life trajectories in autobiographies of people with multiple sclerosis. Social Sci Med (1982) 1990;30:1173-86. DOI: https://doi.org/10.1016/0277-9536(90)90257-S
Nicholas DB. Meanings of Maternal caregiving: children with end stage renal disease. Qual Health Res 1999;9:468-78. DOI: https://doi.org/10.1177/104973299129122009
Meldrum ML, Tsao JC, Zeltzer LK. "I can't be what I want to be": children's narratives of chronic pain experiences and treatment outcomes. Pain Med (Malden, Mass) 2009;10:1018-34. DOI: https://doi.org/10.1111/j.1526-4637.2009.00650.x
Comte-Sponville A. L'Esprit de l'athéisme: Introduction à une spiritualité sans Dieu. Albin Michel; 2009.
Jenner A, Scott A. Circulating beliefs, resilient metaphors and faith in biomedicine: hepatitis C patients and interferon combination therapy. Sociol Health Illness 2008;30:197-216. DOI: https://doi.org/10.1111/j.1467-9566.2007.01061.x
Curlin FA, Roach CJ, Gorawara-Bhat R, et al. When patients choose faith over medicine: physician perspectives on religiously related conflict in the medical encounter. Archives Internal Med 2005;165:88-91. DOI: https://doi.org/10.1001/archinte.165.1.88
Kruse BG, Heinemann D, Moody L, et al. Psychometric Properties of the Serenity Scale. J Hospice Palliative Nurs 2005;7:337-44. DOI: https://doi.org/10.1097/00129191-200511000-00014
Wilson S. 'When you have children, you're obliged to live': motherhood, chronic illness and biographical disruption. Sociol Health Illness 2007;29:610-26. DOI: https://doi.org/10.1111/j.1467-9566.2007.01008.x
Arutyunyan T, Odetola F, Swieringa R, Niedner M. Religion and spiritual care in pediatric intensive care unit: parental attitudes regarding physician spiritual and religious inquiry. Am J Hospice Palliative Care 2018;35:28-33. DOI: https://doi.org/10.1177/1049909116682016
Coughlin K, Mackley A, Kwadu R, et al. Characterization of Spirituality in Maternal-Child Caregivers. J Palliat Med 2017;20:994-7. DOI: https://doi.org/10.1089/jpm.2016.0361
Bell SL, Tyrrell J, Phoenix C. Meniere's disease and biographical disruption: Where family transitions collide. Social Sci Med (1982) 2016;166:177-85. DOI: https://doi.org/10.1016/j.socscimed.2016.08.025
PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.
Downloads
Citations
