“Hope is the Indispensable Life Force”: A Qualitative Study of the Meaning of Hope in the Life Experiences of Lymphoma Patients

Yıl 2024, Cilt: 3 Sayı: 2, 52 - 63, 21.08.2024

Emine Çetiner , Selma Turan Kavradım , Zeynep Özer

https://doi.org/10.59398/ahd.1448419

Öz

Aim
Although hope is considered to be of vital importance for cancer patients, it remains uncertain in lymphoma patients. This study aimed to examine the life experiences of patients with lymphoma and reveal the meaning of hope.
Method
A hermeneutic-phenomenological design was used in this study. 19 lympho¬ma patients who were receiving chemotherapy participated in interviews. Participants were selected through the purposive sampling method, and the interviews were audio-recorded. A phenomenological-hermeneutic approach was used to analyze the data.
Results
Three themes and 12 sub-themes emerged that summarized the life experiences of patients and the meaning of hope. These themes were as follows: ‘Being in existence’, ‘Hope is the indispensable life force’, and ‘There is always hope, but it varies’. Within the scope of the sub-themes, this study showed that there were changes in the physical and emotional well-being of participants and the importance of discovering the moment. This study, which reveals the meaning of hope as a “desire to return to routine, a bridge from now to the future”, emphasized that both the patients affect hope and the factors related to the disease.
Conclusion
This study revealed the changes in the physical and emotional well-being of lymphoma patients, the meaning of hope in their life experiences, and the factors affecting hope. It is thought that the findings obtained will contribute to the provision of psychosocial support and care planning by healthcare professionals to strengthen hope in lymphoma patients and may guide future studies.

Anahtar Kelimeler

chemotherapy, hope, life experience, lymphoma, qualitative research

“Umut Vazgeçilmez Yaşam Gücüdür”: Lenfoma Hastalarının Yaşam Deneyimlerinde Umudun Anlamı Üzerine Nitel Bir Çalışma

Öz

Amaç
Kanser hastaları için umudun hayati bir öneme sahip olduğu düşünülse de, lenfoma hastalarında umut be¬lirsizliğini korumaktadır. Bu çalışma, lenfoma hasta¬larının yaşam deneyimlerini incelemeyi ve umudun anlamını ortaya koymayı amaçlamaktadır.
Yöntem
Bu çalışmada hermeneutik-fenomenolojik bir tasarım kullanılmıştır. Kemoterapi alan 19 lenfoma hastası görüşmelere katılmıştır. Katılımcılar amaçlı örnekleme yöntemi ile seçilmiş ve kayıt altına alınmıştır. Verile¬ri analiz etmek için fenomenolojik-hermeneutik yak¬laşım kullanılmıştır.
Bulgular
Hastaların yaşam deneyimlerini ve umudun anlamını özetleyen üç tema ve 12 alt tema ortaya çıkmıştır. Bu temalar: ‘Var olmak’, ‘Umut vazgeçilmez yaşam gücüdür’ ve ‘Umut her zaman vardır fakat değişken¬lik gösterir’. Alt temalar kapsamında bu çalışma, katılımcıların fiziksel ve duygusal iyilik hallerinde değişimler olduğunu ve anı keşfetmenin önemini göstermiştir. Umudun anlamını ‘tekrar rutine dönme isteği, bugünden geleceğe bir köprü’ olarak ortaya koyan bu çalışma, umudun hastalardan ve hastalıkla ilgili faktörlerden etkilendiğini vurgulamıştır.
Sonuç
Bu çalışma lenfoma hastalarının fiziksel ve duygusal iyilik hallerindeki değişimleri, yaşam deneyimlerinde umudun anlamını ve umudu etkileyen faktörleri orta¬ya çıkarmıştır. Elde edilen bulguların, sağlık çalışanları tarafından lenfoma hastalarında umudun güçlendi¬rilmesine yönelik psikososyal destek sağlama ve bakımı planlamaya katkı sağlayacağı, gelecekteki çalışmalara rehberlik edebileceği düşünülmektedir.

Anahtar Kelimeler

kemoterapi, umut, yaşam deneyimi, lenfoma, nitel araştırma

Etik Beyan

The research process was carried out in accordance with the international standards and principles accepted by the World Medical Association’s Declaration of Helsinki. Ethical approval was obtained from the Clinical Research Ethics Committee before collecting the research data (22.12.2021, 956). In addition, institutional permission was obtained from the hospital where the participants were receiving treatment. Informed verbal and written consent was obtained from the participants, and the names of the participants were coded in the study.

Destekleyen Kurum

Bulunmamaktadır.

Kaynakça

• Centers for Disease Control and Prevention (CDC).Hematologic Cancer Incidence, Survival, and Prevalence. USCS Data Brief, no. 30. Atlanta, GA: Centers for Disease Control and Prevention, US Department of Health and Human Services; 2022.
• American Cancer Society (ACS). Key Statistics for Hodgkin Lymphoma 2023. Available from: https:// www.cancer.org/.
• Ferlay J, Colombet M, Soerjomataram I, Parkin DM, Piñeros M, Znaor A, Bray F. Cancer statistics for the year 2020: An overview. International Jour¬nal of Cancer. 2021;149(4):778-89.
• Cairo MS, Beishuizen A. Childhood, adolescent and young adult non-Hodgkin lymphoma: current perspectives. Br J Haematol. 2019;185(6):1021- 42.
• Eichenauer DA, Aleman BMP, André M, Federi¬co M, Hutchings M, Illidge T, et al. Hodgkin lymphoma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2018;29(Suppl 4):19-29.
• Fu F, Chen Y-Y, Li Q, Zhu F. Varieties of Hope Among Family Caregivers of Patients With Lymphoma. Qualitative Health Research. 2018;28(13):2048- 58.
• Kang D, Kim S, Kim H, Lee M, Kong SY, Chang YJ, et al. Surveillance of Symptom Burden Using the Patient-Reported Outcome Version of the Com¬mon Terminology Criteria for Adverse Events in Patients With Various Types of Cancers During Chemoradiation Therapy: Real-World Study. JMIR Public Health Surveill. 2023;9:e44105.
• Allart P, Soubeyran P, Cousson-Gélie F. Are psy¬chosocial factors associated with quality of life in patients with haematological cancer? A critical review of the literature. Psychooncology. 2013;22(2):241-9.
• Hall A, Lynagh M, Bryant J, Sanson-Fisher R. Supportive care needs of hematological can¬cer survivors: A critical review of the literature. Critical Reviews in Oncology/Hematology. 2013;88(1):102-16.
• Linendoll N, Saunders T, Burns R, Nyce JD, Wendell KB, Evens AM, Parsons SK. Health-related quality of life in Hodgkin lymphoma: a systematic review. Health Qual Life Outcomes. 2016;14(1):114.
• Sezgin MG, Bektaş H. Symptom Clustering and Its Effect on Functional Status in Lym¬phoma Patients. Florence Nightingale J Nurs. 2020;28(2):143-54.
• Smith SK, Crespi CM, Petersen L, Zimmerman S, Ganz PA. The impact of cancer and quality of life for post-treatment non-Hodgkin lymphoma survi¬vors. Psychooncology. 2010;19(12):1259-67.
• Bolukbas F, Kutluturkan S. Symptoms and symptom clusters in non Hodgkin’s lympho¬ma patients in Turkey. Asian Pac J Cancer Prev. 2014;15(17):7153-8.
• Chircop D, Scerri J. The lived experience of patients with non-Hodgkin’s lymphoma undergoing chemotherapy. Eur J Oncol Nurs. 2018;35:117-21.
• Howell DA, McCaughan D, Smith AG, Patmore R, Roman E. Incurable but treatable: Understanding, uncertainty and impact in chronic blood can¬cers—A qualitative study from the UK’s Haema¬tological Malignancy Research Network. PLOS ONE. 2022;17(2):e0263672.
• Payne JB, Dance KV, Farone M, Phan A, Ho CD, Guti¬errez M, et al. Patient and caregiver perceptions of lymphoma care and research opportunities: A qualitative study. Cancer. 2019;125(22):4096- 104.
• Ruan J, Qian Y, Zhuang Y, Zhou Y. The Illness Experiences of Chinese Patients Living With Lymphoma: A Qualitative Study. Cancer Nurs. 2020;43(4):E229-e38.
• Kitashita M, Suzuki K. Hope and its associated factors in cancer patients undergoing drug therapy: a systematic review. Support Care Cancer. 2023;31(10):597.
• Nierop-van Baalen C, Grypdonck M, van Hecke A, Verhaeghe S. Associated factors of hope in can¬cer patients during treatment: A systematic literature review. J Adv Nurs. 2020;76(7):1520-37.
• Eliott JA, Olver IN. Hope and hoping in the talk of dying cancer patients. Soc Sci Med. 2007;64(1):138-49.
• Eliott JA, Olver IN. Hope, life, and death: a qualita¬tive analysis of dying cancer patients’ talk about hope. Death Stud. 2009;33(7):609-38.
• Nierop-van Baalen C, Grypdonck M, van Hecke A, Verhaeghe S. Hope dies last … A qualitative study into the meaning of hope for people with cancer in the palliative phase. Eur J Cancer Care (Engl). 2016;25(4):570-9.
• Kylmä J, Duggleby W, Cooper D, Molander G. Hope in palliative care: an integrative review. Palliat Sup¬port Care. 2009;7(3):365-77.
• Allemani C, Matsuda T, Di Carlo V, Harewood R, Matz M, Nikšić M, et al. Global surveillance of trends in cancer survival 2000-14 (CONCORD-3): analysis of individual records for 37 513 025 patients diagnosed with one of 18 cancers from 322 population-based registries in 71 countries. Lan¬cet. 2018;391(10125):1023-75.
• Lindseth A, Norberg A. A phenomenological her¬meneutical method for researching lived experience. Scandinavian Journal of Caring Sciences. 2004;18(2):145-53.
• Miles M, Francis K, Chapman Y, Taylor B. Herme¬neutic phenomenology: a methodology of choice for midwives. Int J Nurs Pract. 2013;19(4):409-14.
• Booth A, Hannes K, Harden A, Noyes J, Harris J, Tong A. COREQ (Consolidated Criteria for Report¬ing Qualitative Studies). Guidelines for Reporting Health Research: A User’s Manual2014. p. 214-26.
• Polit DF, Beck CT. Essentials of nursing research: Appraising evidence for nursing practice (8th ed.). Philadelphia: Wolters Kluwer.2014.
• Linneberg M, Korsgaard S. Coding qualitative data: a synthesis guiding the novice. Qualitative Research Journal. 2019.
• QSR. International Pty Ltd. NVivo (Version 10), https://www.qsrinternational.com/nvivo-qualita¬tive-data-analysis-software/home2014.
• Ricoeur P. The hermeneutical function of distanci¬ation. In: Thompson JB, editor. Hermeneutics and the Human Sciences: Essays on Language, Action and Interpretation. Cambridge: Cambridge Univer¬sity Press; p. 93–106. . 2016.
• Dreyer PS, Pedersen BD. Distanciation in Ricoeur’s theory of interpretation: narrations in a study of life experiences of living with chronic illness and home mechanical ventilation. Nursing Inquiry. 2009;16(1):64-73.
• Lincoln Y, & Guba, E. . Naturalistic inquiry, CA: Sage: Thousand Oaks1985.
• Chircop D, Scerri J. Coping with non-Hodgkin’s lymphoma: a qualitative study of patient perceptions and supportive care needs whilst un¬dergoing chemotherapy. Support Care Cancer. 2017;25(8):2429-35.
• Monterosso L, Taylor K, Platt V, Lobb E, Krishna¬samy M, Musiello T, et al. A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma. European Journal of On¬cology Nursing. 2017;28:62-8.
• Nazam F, Husain A, Devi S, Singh R. An interpre¬tive phenomenological analysis of hope in cancer patients: A qualitative study. Indian Journal of Cancer. 2021;Online First.
• Bryant FB, Harrison PR. Chapter 3 - Measures of Hope and Optimism: Assessing Positive Expec¬tations of the Future. In: Boyle GJ, Saklofske DH, Matthews G, editors. Measures of Personality and Social Psychological Constructs. San Diego: Academic Press; 2015. p. 47-73.
• Laranjeira C, Dixe MA, Semeão I, Rijo S, Faria C, Querido A. “Keeping the Light On”: A Qualitative Study on Hope Perceptions at the End of Life in Portuguese Family Dyads. Int J Environ Res Pub¬lic Health. 2022;19(3).
• Broadhurst K, Harrington A. A mixed method the¬matic review: the importance of hope to the dying patient. J Adv Nurs. 2016;72(1):18-32.
• Werner A, Steihaug S. Conveying hope in consul¬tations with patients with life-threatening diseases: the balance between supporting and challenging the patient. Scandinavian Journal of Primary Health Care. 2017;35(2):143-52.
• Visvanathan A, Mead G, Dennis M, Whiteley W, Doubal F, Lawton J. Maintaining hope after a dis¬abling stroke: A longitudinal qualitative study of patients’ experiences, views, information needs and approaches towards making treatment decisions. PLOS ONE. 2019;14(9):e0222500.
• Garssen B, Uwland-Sikkema NF, Visser A. How Spirituality Helps Cancer Patients with the Adjustment to their Disease. Journal of Religion and Health. 2015;54(4):1249-65.