Journal of Qualitative Research in Health Sciences
Journal of Qualitative Research in Health Sciences

The Lived Experience of Patients with Brain Tumors Following a Positive Diagnosis: A Phenomenological Study

Document Type : Original Article

Authors

Alireza Abdi 1
Behzad Imani 2
Shirdel Zandi 2
Mohamadreza Zamani 1

1 Students Research Committee, Hamadan University of Medical Sciences, Hamadan, Iran

2 Department of Operating Room, School of Paramedicine, Hamadan University of Medical Sciences, Hamadan, Iran

10.34172/jqr.1565
Abstract
Introduction: Brain tumors, as a life-threatening diagnosis, often lead to profound psychological and existential crises. Understanding the lived experiences of these patients is crucial for providing holistic care. This study explored the lived experiences of patients with brain tumors following a positive diagnosis.
Methods: This qualitative study employed a descriptive phenomenological approach. Participants were purposefully selected based on their experiences, and data were collected through in-depth, semi-structured interviews with 12 patients at Besat Educational Hospital in Hamadan, Iran. Data analysis was conducted using Colaizzi’s seven-step method to ensure a rigorous and systematic exploration of participants’ experiences.
Results: The analysis revealed four main themes: (1) Emotional Storm (shock, anger, anxiety, sorrow, and depression), (2) Psychophysical Transformations (physical deterioration, identity crisis, and personality changes), (3) Social Disintegration (self-imposed isolation, shifting roles, and social stigma), and (4) Adaptation to the Illness (hope-fear confrontation, seeking life’s meaning, gradual acceptance, and coping strategies).
Conclusion: The findings highlight the severe psychological and social challenges faced by patients with brain tumors following a positive diagnosis. These experiences underscore the need for comprehensive, culturally sensitive interventions that address emotional, psychological, and social dimensions. Healthcare systems should prioritize patient-centered care, including counseling, support groups, and public education to reduce stigma.

Keywords

Brain neoplasms
Lived experience
Qualitative research
Phenomenological study
Coping skills
Stress
Psychological
  1. Anderson-Shaw L, Baslet G, Villano JL. Brain neoplasm and the potential impact on self-identity. AJOB Neurosci 2010;1(3):3-7. doi:10.1080/21507740.2010.485122
  2. Cubis L, Ownsworth T, Pinkham MB, Chambers S. The social trajectory of brain tumor: a qualitative metasynthesis. Disabil Rehabil 2018;40(16):1857-69. doi:10.1080/09638288.2017 .1315183
  3. Ostrom QT, Patil N, Cioffi G, Waite K, Kruchko C, Barnholtz- Sloan JS. CBTRUS statistical report: primary brain and other central nervous system tumors diagnosed in the United States in 2013-2017. Neuro Oncol 2020;22(12 Suppl 2): iv1-96. doi:10.1093/neuonc/noaa200
  4. Rothrock JC. Alexander’s Care of the Patient in Surgery-E-Book. St Louis: Elsevier Health Sciences; 2022.
  5. Ghandour F, Squassina A, Karaky R, Diab-Assaf M, Fadda P, Pisanu C. Presenting psychiatric and neurological symptoms and signs of brain tumors before diagnosis: a systematic review. Brain Sci 2021;11(3):301. doi:10.3390/brainsci11030301
  6. Tibbs MD, Huynh-Le MP, Reyes A, Macari AC, Karunamuni R, Tringale KR, et al. Longitudinal analysis of depression and anxiety symptoms as independent predictors of neurocognitive function: prospective trial of brain tumor patients receiving radiotherapy [RT]. Int J Radiat Oncol Biol Phys 2019;105(1): S80. doi:10.1016/j.ijrobp.2019.06.543
  7. Vedelø TW, Sørensen JCH, Delmar C. Patients’ experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: a case study. J Clin Nurs 2018;27(15- 16):3044-55. doi:10.1111/jocn.14372
  8. Zanotto A, Goodall K, Ellison M, McVittie C. ‘Make them wonder how you are still smiling’: the lived experience of coping with a brain tumour. Qual Health Res 2023;33(7):601- 12. doi:10.1177/10497323231167345
  9. Figg WD, Smith EK, Price DK, English BC, Thurman PW, Steinberg SM, et al. Disclosing a diagnosis of cancer: where and how does it occur? J Clin Oncol 2010;28(22):3630-5. doi:10.1200/jco.2009.24.6389
  10. Oystacher T, Blasco D, He E, Huang D, Schear R, McGoldrick D, et al. Understanding stigma as a barrier to accessing cancer treatment in South Africa: implications for public health campaigns. Pan Afr Med J 2018;29:73. doi:10.11604/ pamj.2018.29.73.14399
  11. Imani B, Zandi S, Khazaei S, Mirzaei M. The lived experience of HIV-infected patients in the face of a positive diagnosis of the disease: a phenomenological study. AIDS Res Ther 2021;18(1):95. doi:10.1186/s12981-021-00421-4
  12. Imani B, Mohamad Khan Kermanshahi S, Vanaki Z, Kazemnejad Lili A. Hospital nurses’ lived experiences of intelligent resilience: a phenomenological study. J Clin Nurs 2018;27(9-10):2031-40. doi:10.1111/jocn.14310
  13. Khademhamzehei E, Seidi M, Nazari Velashjerdi MR, Alimoradian A, Mortazavi SS. Mothers’ experiences of factors affecting their sleep in the NICU: a phenomenological study. J Qual Res Health Sci 2024;13(2):71-9. doi:10.34172/ jqr.2024.11
  14. Praveena KR, Sasikumar S. Application of Colaizzi’s method of data analysis in phenomenological research. Med Leg Update 2021;21(2):914-8. doi:10.37506/mlu.v21i2.2800
  15. CohenMiller A, Saban GA, Bayeta R. Rigor in qualitative research. In: The SAGE Handbook of Qualitative Research in the Asian Context. Los Angeles: SAGE Publications; 2022. p. 327-43. doi:10.4135/9781529781731.n24
  16. Hassankhani H, Haririan H, Porter JE. The experience of witnessing resuscitation among patients’ families: a phenomenological study. J Qual Res Health Sci 2024;13(1):1- 7. doi:10.34172/jqr.2024.01
  17. Fitch MI. Exploring experiences of survivors and caregivers regarding lung cancer diagnosis, treatment, and survivorship. J Patient Exp 2020;7(2):193-9. doi:10.1177/2374373519831700
  18. Madhusoodanan S, Ting MB, Farah T, Ugur U. Psychiatric aspects of brain tumors: a review. World J Psychiatry 2015;5(3):273-85. doi:10.5498/wjp.v5.i3.273
  19. Ernster AE, Body A, Deleyrolle P, St Clair J, Sampson D, Bacharz K, et al. Patterns and predictors of anxiety and depression symptom trajectories in patients diagnosed with primary brain tumors. J Neurooncol 2023;164(3):701-10. doi:10.1007/ s11060-023-04469-2
  20. Ownsworth T, Goadby E, Chambers SK. Support after brain tumor means different things: family caregivers’ experiences of support and relationship changes. Front Oncol 2015;5:33. doi:10.3389/fonc.2015.00033
  21. Kasper G, Hart S, Samuel N, Fox C, Das S. Anxiety and depression in patients with intracranial meningioma: a mixed methods analysis. BMC Psychol 2022;10(1):93. doi:10.1186/ s40359-022-00797-6
  22. Kübler-Ross E, Kessler D. The five stages of grief. In: On grief and grieving. Library of Congress Cataloging in Publication Data; 2009. Available from: https://www.simonandschuster. com/books/On-Grief-and-Grieving/Elisabeth-Kubler- Ross/9780743263443
  23. Sutton K, Moore J, Armes J, Briggs E. Perceptions and experiences of the subjective well-being of people with glioblastoma: a longitudinal phenomenological study. Neurooncol Pract. 2023;10(1):79-88. doi:10.1093/nop/npac064
  24. Martins A, Whelan JS, Bennister L, Fern LA, Gerrand C, Onasanya M, et al. Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK. BMJ Open 2019;9(9): e028693. doi:10.1136/ bmjopen-2018-028693
  25. Hasan Shiri F, Mohtashami J, Nasiri M, Manoochehri H, Rohani C. Stigma and related factors in Iranian people with cancer. Asian Pac J Cancer Prev 2018;19(8):2285-90. doi:10.22034/ apjcp.2018.19.8.2285
  26. Masoomi M, Hosseinikolbadi S, Saeed F, Sharifi V, Jalali Nadoushan AH, Shoib S. Stigma as a barrier to suicide prevention efforts in Iran. Front Public Health 2022;10:1026451. doi:10.3389/fpubh.2022.1026451
  27. Farsi Z, Taghva A, Butler SC, Tabesh H, Javanmard Y, Atashi A. Stigmatization toward patients with mental health diagnoses: Tehran’s stakeholders’ perspectives. Iran J Psychiatry Behav Sci 2020;14(3): e93851. doi:10.5812/ijpbs.93851
  28. Raghavapudi H, Singroul P, Kohila V. Brain tumor causes, symptoms, diagnosis and radiotherapy treatment. Curr Med Imaging 2021;17(8):931-42. doi:10.2174/15734056176662 10126160206
  29. Caponnetto P, Schilirò G, Maglia M, Prezzavento GC, Baeken C, Quattropani MC. Psychological and neuropsychological clinical impact in brain cancer patients and evidence-based psychological intervention: a systematic review of the literature. Health Psychol Res 2024;12:91408. doi:10.52965/001c.91408
  30. Cheung AT, Li WH, Ho LL, Ho KY, Chiu SY, Chan CG, et al. Impact of brain tumor and its treatment on the physical and psychological well-being, and quality of life amongst pediatric brain tumor survivors. Eur J Oncol Nurs 2019;41:104-9. doi:10.1016/j.ejon.2019.06.003
  31. Pranka M. Biographical disruption and factors facilitating overcoming it. SHS Web Conf 2018;51:03007. doi:10.1051/ shsconf/20185103007
  32. Boccia ML. Social relationships and relational pain in brain tumor patients and their partners. Front Pain Res (Lausanne) 2022;3:979758. doi:10.3389/fpain.2022.979758
  33. Soofizad G, Rakhshanderou S, Ramezankhani A, Ghaffari M. The concept of social health from an Iranian perspective: a qualitative exploration. Front Public Health 2022;10:797777. doi:10.3389/fpubh.2022.797777
  34. Zanotto A, McVittie C, Goodall K, Ellison M. “It is kind of invisible work”: lived experiences of informal caregivers of people with a brain tumor. Semin Oncol Nurs 2025;41(4):151938. doi:10.1016/j.soncn.2025.151938
  35. Adams RN, Mosher CE, Winger JG, Abonour R, Kroenke K. Cancer-related loneliness mediates the relationships between social constraints and symptoms among cancer patients. J Behav Med 2018;41(2):243-52. doi:10.1007/s10865-017-9892-5
  36. Loughan AR, Reid M, Willis KD, Barrett S, Lo K. The emotional journey of neuro-oncology: primary brain tumor patients share their experience during this life-threatening disease. Neurooncol Pract 2023;10(1):71-8. doi:10.1093/nop/npac067
  37. Loughan AR, Willis KD, Braun SE, Rodin G, Lanoye A, Davies AE, et al. Managing cancer and living meaningfully (CALM) in adults with malignant glioma: a proof-of-concept phase IIa trial. J Neurooncol 2022;157(3):447-56. doi:10.1007/s11060- 022-03988-8
  38. Park CL. Meaning making in the context of disasters. J Clin Psychol 2016;72(12):1234-46. doi:10.1002/jclp.22270
  39. Chieffo DP, Lino F, Ferrarese D, Belella D, Della Pepa GM, Doglietto F. Brain tumor at diagnosis: from cognition and behavior to quality of life. Diagnostics (Basel) 2023;13(3):541. doi:10.3390/diagnostics13030541
  40. Pertz M, Schlegel U, Thoma P. Sociocognitive functioning and psychosocial burden in patients with brain tumors. Cancers (Basel) 2022;14(3):767. doi:10.3390/cancers14030767
  41. Samman RR, Timraz JH, Mosalem Al-Nakhli A, Haidar S, Muhammad Q, Irfan Thalib H, et al. The impact of brain tumors on emotional and behavioral functioning. Cureus 2024;16(12): e75315. doi:10.7759/cureus.75315
  42. Iwanaga K, Chan F, Deiches J, Lee D, Chen X, Wu JR, et al. Constructs of the stress–appraisal–coping theory and positive human traits as predictors of perceived stress in people with multiple sclerosis: implications for rehabilitation professions. J Appl Rehabil Couns 2024;55(3):179-96. doi:10.1891/jarc- 2023-0027
  43. Tavakkol R, Karimi A, Fereidouni A, Amiri A, Nazari Far E. The relationship between physical and mental health and coping strategies in operating room. J Health Sci Surveill Syst 2022;10(3):358-64. doi:10.30476/jhsss.2021.89984.1172
  44. Khosravani M, Karimi A, Khaki S, Parnikh H, Moslemi A, Mostafapour Z, et al. Clinical changes in patterns of moral courage and moral distress among operating room nurses during COVID-19. J Med Chem Sci 2023;7(1):91-103. doi:10.26655/ JMCHEMSCI.2024.1.9
  45. Jenkins RA, Pargament KI. Religion and spirituality as resources for coping with cancer. J Psychosoc Oncol 1995;13(1-2):51-74. doi:10.1300/J077V13N01_04

46.Sprik PJ, Tata B, Kelly B, Fitchett G. Religious/spiritual concerns of patients with brain cancer and their caregivers. Ann Palliat Med 2021;10(1):964-9. doi:10.21037/apm-20-813

  1. Stockdill ML, King A, Johnson M, Karim Z, Cooper D, Armstrong TS. The relationship between social determinants of health and neurocognitive and mood-related symptoms in the primary brain tumor population: a systematic review. Neurooncol Pract 2024;11(3):226-39. doi:10.1093/nop/npae016
  2. Tan JY, Thong JY, Yeo YH, Mbenga K, Saleh S. Gender, racial, and geographical disparities in malignant brain tumor mortality in the USA. Oncology 2024;102(8):703-9. doi:10.1159/000536486
  3. Tatangelo G, McCabe M, Campbell S, Szoeke C. Gender, marital status and longevity. Maturitas 2017;100:64-9. doi:10.1016/j.maturitas.2017.03.002
  4. Litzelman K, Barker E, Catrine K, Puccetti D, Possin P, Witt WP. Socioeconomic disparities in the quality of life in children with cancer or brain tumors: the mediating role of family factors. Psychooncology 2013;22(5):1081-8. doi:10.1002/pon.3113
Journal of Qualitative Research in Health Sciences
Volume 15
Pages 1-9

  • Receive Date 15 March 2025
  • Revise Date 12 June 2025
  • Accept Date 20 September 2025

Home page

Submit Manuscript

Guide for Reviewers

Contact Us