Uncertainty of parents due to having children with cancer: A concept analysis


concept analysis

How to Cite

Nurhidayah, I., Nurhaeni, N., Allenidekania, A., Gayatri, D., & Rustina, Y. Uncertainty of parents due to having children with cancer: A concept analysis. Belitung Nursing Journal, 9(3). https://doi.org/10.33546/bnj.2612


Background: Parents of newly diagnosed cancer children often experience significant concerns about the implications of the diagnosis. They find themselves in challenging decision-making situations, navigating through uncertain conditions following the disclosure. Uncertainty is a prevailing issue in healthcare, yet its interpretation and application within the context of health and nursing practice exhibit multiple meanings and variations.  

Objective: This study aimed to clarify the concept of parental uncertainty arising from having children with cancer.                                                             

Methods: The concept analysis followed the steps outlined by Walker and Avant. A thorough literature search was conducted using the Embase, CINAHL, and MEDLINE databases to identify articles published between 1980 and 2022.

Results: The literature search yielded 147 articles from various disciplines, including health, nursing, medicine, psycho-oncology, and management. After analysis, 20 articles were selected for inclusion. This study identified four key attributes of parental uncertainty associated with having a child with cancer: (1) emotional disturbance, (2) unpredictability, (3) insufficient information, and (4) problems with decision-making. The antecedents of parental uncertainty encompassed the complexity of the disease, the diagnostic and treatment processes, the hospital environment, communication, and support from credible authorities. The consequences of parental uncertainty included the pursuit of new information, parental adaptability to their role, and parental distress.

Conclusion: Understanding the four attributes of parental uncertainty, along with their antecedents and consequences, can facilitate the future development and operational translation of the concept of uncertainty in nursing practice. This concept is valuable in the evidence-based provision of nursing care to parents of children with cancer, enabling comprehensive recognition and assessment of parental uncertainty and the implementation of appropriate interventions that are sensitive to parental experiences. Ultimately, this approach promotes the adaptation of both the child and the parent.


Supporting Agencies

Indonesian Education Scholarship for Postgraduate Program, provided by Center for Education Financial Services - The Ministry of Education, Culture, Research and Technology, Republic of Indonesia, in collaboration with Educational Fund Management Institution – Ministry of Finance, Republic of Indonesia


Copyright (c) 2023 Ikeu Nurhidayah, Nani Nurhaeni, Allenidekania Allenidekania, Dewi Gayatri, Yeni Rustina

Creative Commons License

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.


Al Yateem, N., Docherty, C., Altawil, H., Al‐Tamimi, M., & Ahmad, A. (2017). The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty. Scandinavian Journal of Caring Sciences, 31(4), 839-849. https://doi.org/10.1111/scs.12405

Bammer, G., & Smithson, M. (2012). Uncertainty and risk: Multidisciplinary perspectives. London: Earthscan.

Bar-Anan, Y., Wilson, T. D., & Gilbert, D. T. (2009). The feeling of uncertainty intensifies affective reactions. Emotion, 9(1), 123-127. https://doi.org/10.1037/a0014607

Benedetti, G. M. d. S., Garanhani, M. L., & Sales, C. A. (2014). The treatment of childhood cancer: Unveiling the experience of parents. Revista Latino-Americana de Enfermagem, 22, 425-431. https://doi.org/10.1590/0104-1169.3264.2433

Brand, S., Wolfe, J., & Samsel, C. (2017). The impact of cancer and its treatment on the growth and development of the pediatric patient. Current Pediatric Reviews, 13(1), 24-33. https://doi.org/10.2174/1573396313666161116094916

Brashers, D. E. (2001). Communication and uncertainty management. Journal of Communication, 51(3), 477-497. https://doi.org/10.1111/j.1460-2466.2001.tb02892.x

Brashers, D. E., Hsieh, E., Neidig, J. L., & Reynolds, N. R. (2006). Managing uncertainty about illness: Health care providers as credible authorities. In R. M. Dailey & B. A. L. Poire (Eds.), Applied interpersonal communication matters: Family, health, and community relations (pp. 219-240). Peter Lang.

Chaney, J. M., Gamwell, K. L., Baraldi, A. N., Ramsey, R. R., Cushing, C. C., Mullins, A. J., Gillaspy, S. R., Jarvis, J. N., & Mullins, L. L. (2016). Parent perceptions of illness uncertainty and child depressive symptoms in juvenile rheumatic diseases: Examining caregiver demand and parent distress as mediators. Journal of Pediatric Psychology, 41(9), 941-951. https://doi.org/10.1093/jpepsy/jsw004

Cohen, M. H. (1993). The unknown and the unknowable-managing sustained uncertainty. Western Journal of Nursing Research, 15(1), 77-96. https://doi.org/10.1177/019394599301500106

Damnjanovic, K., Ilic, S., Pavlovic, I., & Novkovic, V. (2019). Refinement of outcome bias measurement in the parental decision-making context. Europe's Journal of Psychology, 15(1), 41-58. https://doi.org/10.5964%2Fejop.v15i1.1698

Dolbeault, S., Boistard, B., Meuric, J., Copel, L., & Brédart, A. (2011). Screening for distress and supportive care needs during the initial phase of the care process: A qualitative description of a clinical pilot experiment in a French cancer center. Psycho‐Oncology, 20(6), 585-593. https://doi.org/10.1002/pon.1946

Dunn, L. B., Aouizerat, B. E., Cooper, B. A., Dodd, M., Lee, K., West, C., Paul, S. M., Wara, W., Swift, P., & Miaskowski, C. (2012). Trajectories of anxiety in oncology patients and family caregivers during and after radiation therapy. European Journal of Oncology Nursing, 16(1), 1-9. https://doi.org/10.1016/j.ejon.2011.01.003

Eche, I. J., & Aronowitz, T. (2018). Factors that influence parental uncertainty and health-related quality of life in children with cancer: A framework. Nursing Science Quarterly, 31(4), 362-368. https://doi.org/10.1177/089431841879289

Eche, I. J., Aronowitz, T., Shi, L., & McCabe, M. A. (2019). Parental uncertainty: Parents' perceptions of health-related quality of life in newly diagnosed children with cancer. Clinical Journal of Oncology Nursing, 23(6), 609-618. https://doi.org/10.1188/19.CJON.609-618

Fortier, M. A., Batista, M. L., Wahi, A., Kain, A., Strom, S., & Sender, L. S. (2013). Illness uncertainty and quality of life in children with cancer. Journal of Pediatric Hematology/Oncology, 35(5), 366-370. https://doi.org/10.1097/MPH.0b013e318290cfdb

Funtowicz, S. O., & Ravetz, J. R. (1990). Uncertainty and quality in science for policy. Netherlands: Kluwer Academic Publisher.

Gyllén, J., Magnusson, G., & Forsberg, A. (2019). Uncertainty and self‐efficacy in parents of a child with congenital cataract—New implications for clinical practice. Nursing Open, 6(3), 799-807. https://doi.org/10.1002/nop2.256

Han, P. K. J., Klein, W. M. P., & Arora, N. K. (2011). Varieties of uncertainty in health care: A conceptual taxonomy. Medical Decision Making, 31(6), 828-838. https://doi.org/10.1177/0272989X10393976

Hockenberry, M. J., Wilson, D., & Rodgers, C. C. (2017). Wong's essentials of pediatric nursing (10th ed.). St. Louis, Missouri: Elsevier Health Sciences.

Holm, H. J., Opper, S., & Nee, V. (2013). Entrepreneurs under uncertainty: An economic experiment in China. Management Science, 59(7), 1671-1687. https://doi.org/10.1287/mnsc.1120.1670

Kars, M. C., Duijnstee, M. S. H., Pool, A., Van Delden, J. J. M., & Grypdonck, M. H. F. (2008). Being there: Parenting the child with acute lymphoblastic leukaemia. Journal of Clinical Nursing, 17(12), 1553-1562. https://doi.org/10.1111/j.1365-2702.2007.02235.x

Kasper, J., Geiger, F., Freiberger, S., & Schmidt, A. (2008). Decision‐related uncertainties perceived by people with cancer—modelling the subject of shared decision making. Psycho‐Oncology, 17(1), 42-48. https://doi.org/10.1002/pon.1190

Kazak, A. E., Alderfer, M., Rourke, M. T., Simms, S., Streisand, R., & Grossman, J. R. (2004). Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors. Journal of Pediatric Psychology, 29(3), 211-219. https://doi.org/10.1093/jpepsy/jsh022

Kerr, A. M., & Haas, S. M. (2014). Parental uncertainty in illness: Managing uncertainty surrounding an" orphan" illness. Journal of Pediatric Nursing, 29(5), 393-400. https://doi.org/10.1016/j.pedn.2014.01.008

Kerr, A. M., Harrington, N. G., & Scott, A. M. (2019). Communication and the appraisal of uncertainty: Exploring parents’ communication with credible authorities in the context of chronic childhood illness. Health Communication, 34(2), 201-211. https://doi.org/10.1080/10410236.2017.1399508

Knight, F. H. (2013). The economic organization. New Jersey: Transaction Publishers.

Landier, W., Ahern, J., Barakat, L. P., Bhatia, S., Bingen, K. M., Bondurant, P. G., Cohn, S. L., Dobrozsi, S. K., Haugen, M., & Herring, R. A. (2016). Patient/family education for newly diagnosed pediatric oncology patients: Consensus recommendations from a Children’s Oncology Group expert panel. Journal of Pediatric Oncology Nursing, 33(6), 422-431. https://doi.org/10.1177/1043454216655983

Lewandowska, A. (2021). Influence of a child’s cancer on the functioning of their family. Children, 8(7), 592. https://doi.org/10.3390/children8070592

Madeo, A. C., O'Brien, K. E., Bernhardt, B. A., & Biesecker, B. B. (2012). Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions. American Journal of Medical Genetics Part A, 158(8), 1877-1884. https://doi.org/10.1002/ajmg.a.35425

Maduro, R. S. (2016). Understanding the determinants of parental decision-making and harsh parenting behavior [Dissertation, Old Dominion University]. Virginia.

Malin, K. J., & Johnson, T. S. (2019). A concept analysis of parental uncertainty in illness of an infant. MCN: The American Journal of Maternal/Child Nursing, 44(4), 206-211. https://doi.org/10.1097/NMC.0000000000000535

McCormick, K. M. (2002). A concept analysis of uncertainty in illness. Journal of Nursing Scholarship, 34(2), 127-131. https://doi.org/10.1111/j.1547-5069.2002.00127.x

Milliken, F. J. (1987). Three types of perceived uncertainty about the environment: State, effect, and response uncertainty. Academy of Management Review, 12(1), 133-143. https://doi.org/10.5465/amr.1987.4306502

Mishel, M. H. (1988). Uncertainty in Illness. Image: The Journal of Nursing Scholarship, 20(4), 225-232. https://doi.org/10.1111/j.1547-5069.1988.tb00082.x

Motlagh, M. E., Mirzaei-Alavijeh, M., & Hosseini, S. N. (2019). Information needs assessment among parents of children with cancer. Asian Pacific Journal of Cancer Prevention: APJCP, 20(6), 1865-1870. https://doi.org/10.31557%2FAPJCP.2019.20.6.1865

Mullins, L. L., Cushing, C. C., Suorsa, K. I., Tackett, A. P., Molzon, E. S., Mayes, S., McNall-Knapp, R., Mullins, A. J., Gamwell, K. L., & Chaney, J. M. (2016). Parent illness appraisals, parent adjustment, and parent-reported child quality of life in pediatric cancer. Pediatric Hematology and Oncology, 33(5), 314-326. https://doi.org/10.1080/08880018.2016.1198443

Mullins, L. L., Fedele, D. A., Chaffin, M., Hullmann, S. E., Kenner, C., Eddington, A. R., Phipps, S., & McNall-Knapp, R. Y. (2012). A clinic-based interdisciplinary intervention for mothers of children newly diagnosed with cancer: A pilot study. Journal of Pediatric Psychology, 37(10), 1104-1115. https://doi.org/10.1093/jpepsy/jss093

Page, M. C., Fedele, D. A., Pai, A. L. H., Anderson, J., Wolfe-Christensen, C., Ryan, J. L., & Mullins, L. L. (2012). The relationship of maternal and child illness uncertainty to child depressive symptomotology: A mediational model. Journal of Pediatric Psychology, 37(1), 97-105. https://doi.org/10.1093/jpepsy/jsr055

Peek, G., & Melnyk, B. M. (2014). A coping intervention for mothers of children diagnosed with cancer: Connecting theory and research. Applied Nursing Research, 27(3), 202-204. https://doi.org/10.1016/j.apnr.2014.05.002

Penrod, J. (2001). Refinement of the concept of uncertainty. Journal of Advanced Nursing, 34(2), 238-245. https://doi.org/10.1046/j.1365-2648.2001.01750.x

Ruland, C. M., Hamilton, G. A., & Schjødt-Osmo, B. (2009). The complexity of symptoms and problems experienced in children with cancer: A review of the literature. Journal of Pain and Symptom Management, 37(3), 403-418. https://doi.org/10.1016/j.jpainsymman.2008.03.009

Sheer, V. C., & Cline, R. J. (1995). Testing a model of perceived information adequacy and uncertainty reduction in physician‐patient interactions. Journal of Applied Communication Research, 23(1), 44-59. https://doi.org/10.1080/00909889509365413

Sloan, C. A. (2015). Hope, uncertainty, and coping among parents of children with cancer [Dissertation, University of San Diego]. CA.

Stewart, J. L., Mishel, M. H., Lynn, M. R., & Terhorst, L. (2010). Test of a conceptual model of uncertainty in children and adolescents with cancer. Research in Nursing & Health, 33(3), 179-191. https://doi.org/10.1002/nur.20374

Tackett, A. P., Cushing, C. C., Suorsa, K. I., Mullins, A. J., Gamwell, K. L., Mayes, S., McNall-Knapp, R., Chaney, J. M., & Mullins, L. L. (2016). Illness uncertainty, global psychological distress, and posttraumatic stress in pediatric cancer: A preliminary examination using a path analysis approach. Journal of Pediatric Psychology, 41(3), 309-318. https://doi.org/10.1093/jpepsy/jsv093

Tas Bora, S., & Buldukoglu, K. (2020). Using the Uncertainty in Illness Theory to provide care for the caregiver: A case report. Journal of Psychiatric Nursing, 11(1), 70-77.

Taylor Piliae, R. E., & Molassiotis, A. (2001). An exploration of the relationships between uncertainty, psychological distress and type of coping strategy among Chinese men after cardiac catheterization. Journal of Advanced Nursing, 33(1), 79-88. https://doi.org/10.1046/j.1365-2648.2001.01640.x

Toma, S.-V., Chiriţă, M., & Şarpe, D. (2012). Risk and uncertainty. Procedia Economics and Finance, 3, 975-980. https://doi.org/10.1016/S2212-5671(12)00260-2

Wakeham, J. (2015). Uncertainty: History of the concept. In J. D. Wright (Ed.), International Encyclopedia of the Social & Behavioral Sciences (2nd ed., Vol. 24, pp. 716-721). https://doi.org/10.1016/B978-0-08-097086-8.03175-5

Walker, L. O., & Avant, K. C. (2014). Strategies for theory construction in nursing (5th ed.). Upper Saddle River, NJ: Pearson/Prentice Hall.

Wright, L. J., Afari, N., & Zautra, A. (2009). The illness uncertainty concept: A review. Current Pain and Headache Reports, 13, 133-138. https://doi.org/10.1007/s11916-009-0023-z

Xie, B., Su, Z., Liu, Y., Wang, M., & Zhang, M. (2017). Health information sources for different types of information used by Chinese patients with cancer and their family caregivers. Health Expectations, 20(4), 665-674. https://doi.org/10.1111/hex.12498