The Impact of Interventions Based on Mishel’s Uncertainty in Illness Theory on Caregivers of Children Diagnosed with Cancer: Randomized Controlled Trial

Year 2022, Volume: 32 Issue: 4, 439 - 446, 31.08.2022

Sevil Özkan , Fatma Taş Arslan

https://doi.org/10.54005/geneltip.1128563

Abstract

Aim: To investigate the effects of nursing interventions based on Mishel’s Uncertainty in Illness Theory (MUIT) on uncertainty, hopelessness, coping and adaptation for care givers of children diagnosed with cancer.

Materials and Methods: The study was randomized controlled experimental design study, which had repeated measures (pretest-posttest-follow up) and parallel group (intervention-control), it included measures of uncertainty (PPUS), hopelessness (BHS), coping and adaptation (CAPS). The study was conducted in January-July 2019 with the caregivers of 46 children diagnosed with cancer who followed in paediatric oncology-haematology clinics. Intervention Group (IG) was given 6 modules education and consultancy according to protocol that was developed based on theory. The CONSORT guideline was performed in the study.

Results: PPUS post-test mean score of IG was lower than CG (p<0.05), and perceptions of uncertainty decreased significantly over time depending on the caregivers being in the IG and CG (p<0.05). It was determined that BHS post-test and follow-up mean scores of IG was lower (less hopelessness perception) than the CG (p<0.05). CAPS’ post-test and the follow-up mean scores were similar in IG and CG. Also, Group*time effect on hopelessness, coping and adaptation perception was statistically similar, too.

Conclusion: Nursing interventions based on MUIT can positively support caregivers' uncertainty, hopelessness and coping adaptations.

Keywords

Cancer, Caregiver, Child, Mishel’s Uncertainty in Illness Theory, Nursing intervention

Supporting Institution

Faculty Member Training Program (OYP) at Selçuk University

Project Number

Project number: 2015-ÖYP-018

Thanks

This study would not have been possible without the support from the Pediatric Oncology and Hematology Clinics and outpatient clinics of hospitals, and caregivers of children diagnosed with cancer in the chosen hospitals. We particularly thank the participants.

Mishel'in Hastalıklarda Belirsizlik Teorisine Dayalı Hemşirelik Girişimlerinin Kanser Tanısı Alan Çocukların Bakım Verenlerine Etkisi: Randomize Kontrollü Çalışma

Abstract

Amaç: Mishel'in Hastalıklarda Belirsizlik Teorisi’ne (MHBT) dayalı hemşirelik müdahalelerinin kanser tanısı alan çocukların bakım verenlerinde belirsizlik, umutsuzluk, baş etme ve uyumu üzerine etkisini araştırmaktır.

Gereç ve Yöntem: Bu çalışma tekrarlı ölçümler (ön test-son test-izleme) ve paralel grup (müdahale-kontrol) içeren randomize kontrollü deneysel tasarımda bir çalışma olup; çalışma da belirsizlik (MHBÖ-E/ÇF), umutsuzluk (BUÖ), baş etme ve uyum (BUSÖ) ile ilgili ölçümler vardır. Çalışma Ocak-Temmuz 2019 tarihlerinde, çocuk onkoloji-hematoloji kliniklerinde izlenen kanser tanısı alan 46 çocuğun bakım vereni ile yürütülmüştür. Girişim Grubu'na (GG) teoriye dayalı olarak geliştirilen protokole uygun 6 modül eğitim ve danışmanlık verilmiştir. Çalışmada CONSORT kılavuzu uygulanmıştır.

Bulgular: MHBÖ-E/ÇF son test puan ortalaması GG’de KG'den daha düşüktü (p<0.05) ve bakım verenlerin GG ve KG'de olmasına bağlı olarak belirsizlik algıları zaman içinde anlamlı olarak azaldı (p<0.05). BUÖ son test ve izlem puan ortalamaları GG’nin KG'ye göre daha düşük olduğu (daha az umutsuzluk algısı) belirlendi (p<0.05). BUSÖ son test ve izlem puan ortalamaları GG ve KG'de benzer bulundu. Ayrıca, grup*zamanın umutsuzluk, baş etme ve uyum algısı üzerindeki etkisi de istatistiksel olarak benzerdi.

Sonuç: MHBT’ne dayalı hemşirelik müdahaleleri, bakım verenlerin belirsizlik, umutsuzluk ve baş etme uyumlarını olumlu yönde destekleyebilmektedir.

Keywords

Bakım veren, Çocuk, Hemşirelik Girişimi, Kanser, Mishel’in Hastalıklarda Belirsizlik Teorisi

Project Number

Project number: 2015-ÖYP-018

References

• 1. Cypress B. Understanding uncertainty among critically ill patients in the Intensive Care Unit using Mishel’s Theory of Uncertainty of Illness. Dimens Crit Care Nurs 2016; 35(1): 42-49. https://doi.org/10.1097/DCC.0000000000000152.
• 2. Perez MN, Traino KA, Bakula DM, et al. Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress. Psycho-Oncol 2020; 29(2): 304-10. https://doi.10.1002/pon.5248.
• 3. Bailey DE, Zhang Y. Merle Mishel: Uncertainty in Illness Theory. In: Alligood MR, ed. Nursing Theories and Their Works. 10th ed. Elsevier, 2021; 445-60.
• 4. Szulczewski L, Mullins LL, Bidwell SL, Eddington AR, Pai AL. Meta-Analysis: Caregiver and youth uncertainty in pediatric chronic illness. J Pediatr Psychol 2017; 42(4): 395-421. https://doi.10.1093/jpepsy/jsw097.
• 5. Eche IJ, Aronowitz T, Shi L, McCabe MA. Parental uncertainty: Parents’ perceptions of health-related quality of life in newly diagnosed children with cancer. Clin J Oncol Nurs 2019; 23(6): 609-18. https://doi.10.1188/19.CJON.609-618.
• 6. Guan T, Qan’ir Y, Song L. Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers. Support Care Cancer 2021; 29(8): 4623-40. https://doi.org/10.1007/s00520-020-05931-x.
• 7. Eche IJ, Aronowitz T. Factors that influence parental uncertainty and health-related quality of life in children with cancer: A framework. Nurs Sci Q 2018; 31(4): 362-8. https://doi.10.1177/0894318418792896.
• 8. Karlsson M, Friberg F, Wallengren C, Öhlén J. Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: A life-world phenomenological study. BMC Palliat Care 2014; 13(1): 28-36. http://www.biomedcentral.com/1472-684X/13/28.
• 9. He S, You L-M, Zheng J, Bi Y-l. Uncertainty and personal growth through positive coping strategies among Chinese parents of children with acute leukemia. Cancer Nurs 2016; 39(3):205-12. https://doi.10.1097/NCC.0000000000000279.
• 10. Bailey DE, Hendrix CC, Steinhauser KE, et al. Randomized trial of an uncertainty self-management telephone intervention for patients awaiting liver transplant. PEC 2017; 100(3): 509-17. http://dx.doi.org/10.1016/j.pec.2016.10.017.
• 11. Gunter MD. Reducing uncertainty in families dealing with childhood cancers: An integrative literature review. Pediatr Nurs 2018; 44(1): 21-37.
• 12. Mitchell ML, Courtney M. Reducing family members’ anxiety and uncertainty in illness around transfer from intensive care: An intervention study. Intensive Crit Care Nurs 2004; 20(4): 223-31. https://doi.org/10.1016/j.iccn.2004.05.008.
• 13. Schulz KF, Altman DG, Moher D, for the CONSORT Group. CONSORT 2010 Statement: Updated guidelines for reporting parallel group randomised trials. BMJ 2010; 340 (9721): c332. https://doi.org/10.1136/bmj.c332.
• 14. Bell M, Biesecker BB, Bodurtha J, Peay HL. Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker Muscular Dystrophy. Clin Genet 2019; 95(6): 677-83. https://doi.10.1111/cge.13528.
• 15. Han PK, Klein WM, Arora NK. Varieties of uncertainty in health care: A conceptual taxonomy. Med Decis Making 2011; 31(6): 828-38. https://doi.10.1177/0272989X11393976.
• 16. Mullins LL, Fedele DA, Chaffin M, et al. A clinic-based interdisciplinary intervention for mothers of children newly diagnosed with cancer: A pilot study. J Pediatr Psychol 2012; 37(10): 1104-15. https://doi.10.1093/jpepsy/jss093.
• 17. Mullins LL, Molzon ES, Suorsa KI, et al. Models of resilience: Developing psychosocial interventions for parents of children with chronic health conditions. Fam Relat 2015; 64(1): 176-89. https://doi.10.1111/fare.12104.
• 18. Rodgers CC, Stegenga K, Withycombe JS, Sachse K, Kelly KP. Processing information after a child’s cancer diagnosis—How parents learn: A report from the Children’s Oncology Group. J Pediatr Oncol Nurs 2016; 33(6): 447-59. https://doi.10.1177/1043454216668825.
• 19. Ogez D, Péloquin K, Bertout L, et al. Psychosocial intervention programs for parents of children with cancer: A systematic review and critical comparison of programs’ models and development. J Clin Psychol Med Settings 2019; 26(4): 550-74. https://doi.org/10.1007/s10880-019-09612-8.
• 20. Beck J, Greenwood DA, Blanton L, et al. 2017 National standards for diabetes self-management education and support. Diabetes Educ 2018; 44(1): 35-50. https://doi.org/10.1177/0145721712455997.
• 21. Knowles M, Holton E, Swanson R. The Adult Learner: The definitive Classic in Adult Education and Human Resourced Development. 7th ed, Elsevier, Inc. 2011; 18-113.
• 22. Mu P-F, Lee M-Y, Sheng C-C, et al. The experiences of family members in the year following the diagnosis of a child or adolescent with cancer: A qualitative systematic review. JBI Database Syst Rev Implement Rep 2015; 13(5): 293-329. https://doi.10.11124/jbisrir-2015-1698.
• 23. Mishel MH. Parents' perception of uncertainty concerning their hospitalized child. Nurs Res 1983, 32(6), 324-30.
• 24. Mishel M, Epstein D. Uncertainty in Illness Scales Manual. USA: University of North Carolina. 1997; 1-21.
• 25. Özkan S, Arslan FT. Psychometrıc properties of the Turkish version of the Parent Perception of Uncertainty Scale (PPUS) among parents of hospitalized children. Pediatrics, Cogent Medicine 2018; 5 (1544190): 11.
• 26. Beck AT, Weissman A, Lester D, Trexler L. The measurement of pessimism: The Hopelessness Scale. J Consult Clin Psycholgy 1974; 42(6): 861-5.
• 27. Seber G, Dilbaz N, Kaptanoğlu C, Tekin D. Hopelessness Scale: Validity and Reliability [in Turkish]. Kriz Dergisi 1993; 1: 139-42.
• 28. Roy C. Research based on the Roy adaptation model: Last 25 years. Nurs Sci Q 2011; 24(4): 312-20. https://doi.10.1177/0894318411419218. 29. Catal E, Dicle A. A validity and reliability study of the Coping and Adaptation Processing Scale in Turkey. Acute Cardiovascular Care 2012; 1(7): 44.
• 30. Leite ACAB, Garcia‐Vivar C, Neris RR, Alvarenga WDA, Nascimento LC. The experience of hope in families of children and adolescents living with chronic illness: A thematic synhesis of qualitative studies. J Adv Nurs 2019; 75(6): 3246–62. https://doi.org/10.1111/jan.14129.
• 31. Gårdling J, Törnqvist E, Edwinson Månsson M, Hallström I. Parents’ lived experiences during their children’s radiotherapy. J Pediatr Oncol Nurs 2017; 34(2): 140-7. https://doi.10.1177/1043454216646540.
• 32. Sisk BA, Friedrich AB, DuBois J, Mack JW. Characteristics of uncertainty in advanced pediatric cancer conversations. Patient Educ Couns 2021; 104(5): 1066-74. https://doi.org/10.1016/j.pec.2020.10.006.
• 33. Bally JM, Duggleby W, Holtslander L, et al. Keeping hope possible: A grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer. Cancer Nurs 2014; 37(5): 363-72. https://doi.10.1097/NCC.0b013e3182a453aa.
• 34. Simpkin AL, Armstrong KA. Communicating uncertainty: A narrative review and framework for future research. J Gen Intern Med 2019; 34(11): 2586-91. https://doi.10.1007/s11606-019-04860-8.