In the Path of Suffering: Understanding the Lived Experience of Families in Cancer Care"

Author

Department of Social Sciences, Faculty of Social Sciences, Payam Noor University, Tehran, Iran

10.22034/jeds.2026.69312.1901

Abstract

Introduction: With the emergence of a serious illness such as cancer, family relationships and their supportive role become more prominent. Therefore, the existence of these roles and relationships in a health crisis situation in the family can provide a framework for understanding the family's social capital in the development of palliative care. The aim of this study is to understand and recognize the network of connections and supports that family caregivers use as informal care in the process of caring for cancer patients. Given the evidence of erosion of family social capital in West Azerbaijan Province, paying attention to family care in serious illnesses can help clarify whether family social capital is reliable and has the necessary capacity to strengthen palliative care.
Methodology: In this study, an interpretive phenomenological approach was used to understand the experiences of caregivers. Field data were collected using interview techniques and data saturation criteria from family caregivers and companions of cancer patients referred to Omid Hospital in Urmia.
Results: Analysis of interview data revealed four main themes in the experiences of family caregivers: redefinition of expectations, the cycle of care, burned social capital, and the language of suffering. The stress and transformation of the caregiving role of families in the face of cancer can be considered the core of the family caregiving phenomenon. This concept shows how the stress of cancer causes changes in expectations, creates complex caregiving cycles, and degrades social capital in families.
Conclusions: Discovering and understanding the core and essence of a phenomenon such as caregiving can serve as a framework for understanding families' experiences in dealing with cancer.

Keywords

Main Subjects

References

اقتدار؛ س، الماسی؛ ل، جاسمی؛ م، اپرناک؛ ف، حبیب‌زاده، ح. (1402)، مراقبین خانوادگی در سرطان: تجربیات، توانمندی‌ها و راهکارها، مجله پرستاری و مامایی، سال 21، شماره 60، صص 195-205. SID https://sid.ir/paper/1097262/fa
باستانی، ع، رزمی، م. (1393)، رتبه‌بندی غیرمستقیم استان‌های ایران برحسب سرمایه اجتماعی، فصلنامه علمی پژوهشی رفاه اجتماعی، سال 14، شماره 55، صص 45-77.  http://refahj.uswr.ac.ir/article
حسینی، م. (1393)، تاثیر سرمایه اجتماعی بر درد در بیماران مبتلا به سرطان پستان، بیماری‌های پستان ایران، سال 7، شماره 2، صص 23-35.  https://refahj.uswr.ac.ir/article-1-1691-fa.html
حسینی، م، موسوی، م، رفیعی، ح، سلطانی‌پوریا، ر. (1393)، تاثیر سرمایه‌اجتماعی بر کیفیت زندگی در بیماران مبتلا به سرطان پستان، رفاه اجتماعی، سال 14، شماره 55، صص 243-269.  http://refahj.uswr.ac.ir/article-1-1691-fa.html
رشیدیان، آ. (1391)، پیمایش شاخص‌های چندگانه سلامت و جمعیت-سیمای سلامت و جمعیت در ایران، تهران، وزارت بهداشت، درمان و آموزش پزشکی.
رفیعی‌جیردهی، ع، حبیب‌زاده خطبه‌سرا، ر. (1393)، سرمایه‌اجتماعی نسل جوان و نسل کهن سال و عوامل موثر بر فرسایش آن، فصلنامه مطالعات توسعه اجتماعی-فرهنگی، سال 2، شماره 4، صص 127-153. SID. https://sid.ir/paper/246602/fa
سالنامه آماری استان آذربایجان‌غربی https://amar.org.ir/
سلیمانی، م. باقی‌نصرآبادی، ع. فاضل، ر. (1394)، دینداری و تاثیر آن در سرمایه اجتماعی خانواده (مورد مطالعه: خانواده‌های ساکن شهر قم)، فصلنامه مدیریت سرمایه اجتماعی، دوره 2، شماره 3، صص 435-452. doi:10.22059JSCM.2015.56532
شارع‌پور، م. (1385)، سرمایه اجتماعی: مفهوم‌سازی، سنجش و دلالت‌های سیاست گذاری، مازندران، انتشارات سازمان مدیریت و برنامه ریزی.
عبدالهی، م. موسوی، م. (1386)، سرمایه اجتماعی در ایران؛ وضعیت موجود، دورنمای آینده و امکان‌شناسی گذار، رفاه اجتماعی، دوره 6، شماره 26، صص 195-233.  SID. https://sid.ir/paper/56673/fa
قاسمی، م. عباس‌زاده، م. گلابی، ف. علیزاده‌اقدم، م. آقایاری‌هیر، ت. (1402)، سرمایه اجتماعی خانواده، حلقه مفقوده در فهم تجارب زیسته زنان در مواجهه با سرطان، فصلنامه علمی برنامه ریزی رفاه و توسعه اجتماعی، سال 15، شماره 54، صص 278-316.  doi.org/10.22054/qjsd.2022.64917.2276
محمدیان، ب. محمدی‌شاهبلاغی، ف. حسینی، م. ارسلانی، ن.  فلاحی‌خشکناب، م. (1401)، تجارب مراقبین خانوادگی در مراقبت از سالمندان مبتلا به سرطان: یک مطالعه کیفی، چهارمین کنگره پژوهشی دانشجویان دانشگاه علوم پزشکی هرمزگان، بندرعباس، دانشگاه علوم پزشکی. https://civilica.com/doc/1663669
 Abebe, A., Arba, A., Paulos, K., Abera, W., Sidamo, T., Shiferaw, S., Woldeyohannes, S. (2022). The lived experience of primary family caregivers of patients on hemodialysis treatment in Southern Ethiopia: a phenomenological study. International Journal of Nephrology and Renovascular Disease, 41-52. doi/epdf/10.2147/IJNRD.S353191
Alase, A. (2017). "The Interpretative Phenomenological Analysis (IPA): A Guide to a Good Qualitative Research Approach". International Journal of Education & Literacy Studies, 5(2), 9-19. doi:10.7575/aiac.ijels.v.5n.2p.9
Almeida, A. C., Pereira, M. G., & Leandro, E. (2013). The influence of family support, parental coping and school support on adherence to type 1 diabetes’ self-care in adolescents. London: UK. doi: 10.5772/53062.
Alvarez, E. C., Kawachi, I., & Romani, J. R. (2017). Family social capital and health–a systematic review and redirection. Sociology of health & illness, 39(1), 5-29. doi.org/10.1111/1467-9566.12506.
Ang, S. H. M. (2022). Exploring the lived experience of Chinese family caregivers caring for end-of-life cancer patients at home: a phenomenological study in Singapore, (Doctoral dissertation, University of Southern Queensland), Toowoomba.
Belgrave, L. L., & Charmaz, K. (2015). George Herbert Mead: Meanings and selves in illness. In The Palgrave handbook of social theory in health, illness and medicine, London: Palgrave Macmillan UK.
Bouchard, E. G., Prince, M. A., McCarty, C., Vincent, P. C., Patel, H., LaValley, S. A., ... & Kelly, K. M. (2023). Understanding social network support, composition, and structure among cancer caregivers. Psycho‐Oncology, 32(3), 408-417. doi.org/10.1002/pon.6087
Carel, H. (2016), Phenomenology of illness. Oxford: Oxford University Press.
Carel, H. (2011). Phenomenology and its application in medicine. Theoretical medicine and bioethics, 32(1), 33-46.
Cersosimo, G. (2019). Interaction and symbolism in health care systems. Italian Sociological Review, 9(2), 305-316. Doi:q0.13136/isr.v9i.282
Cox, A., & Li, S. (2020). The medical consultation through the lenses of language and social interaction theory. Advances in Health Sciences Education, 25(1), 241-257. doi.org/10.1007/s10459-018-09873-2.
Furukawa, H., & Greiner, C. (2020). Developing a social capital scale for family caregivers of people with dementia. Geriatric Nursing, 41(6), 740-746.
Hamano, T., Li, X., Sundquist, J., & Sundquist, K. (2021). Neighborhood social capital and incidence and mortality of prostate cancer: a Swedish cohort study. Aging clinical and experimental research, 33(12), 3333-3342.
Dean, L., Subramanian, S. V., Williams, D. R., Armstrong, K., Charles, C. Z., & Kawachi, I. (2014). The role of social capital in African–American women's use of mammography. Social Science & Medicine, 104, 148-156. doi: 10.1016/j.socscimed.2013.11.057
Gillies, V., & Edwards, R. (2006). A qualitative analysis of parenting and social capital: comparing the work of Coleman and Bourdieu. Qualitative Sociology Review, 2(2), 42-60. DOI: https://doi.org/10.18778/1733-8077.2.2.04
Hellman, A. N. (2016). A hermeneutic phenomenological study of the lived experience of adult female sexual assault survivors, (Doctoral dissertation, East Tennessee State University). https://dc.etsu.edu/
Herdaetha, A., Sudiyanto, A., & Sumanto, R. B. (2020). Social Capital Phenomenology Study among People who Treat a Mental Disorder Caregivers. In The International Conference on Public Health Proceeding, 5(1), 118-127. https://doi.org/10.26911/the7thicph-FP.02.19
Horsfall, D., Noonan, K., & Leonard, R. (2012). Bringing our dying home: how caring for someone at end of life builds social capital and develops compassionate communities. Health Sociology Review, 21(4), 373-382.
Hosseini, S. E., Narabadi, A. N., Abbasi, A., Joolaee, S., Sheikhzakaryaee, N., & Shali, M. (2024). Exploring the ethical decision-making experience of caregivers of end stage cancer patients in Iran: a phenomenological study. BMC Medical Ethics, 25(1), 130. doi.org/10.1186/s12910-024-01131-y
Hsieh, C. H. (2008, July). A concept analysis of social capital within a health context. In Nursing Forum, 43(3), 151-159.
Huppatz, K. (2015). Pierre Bourdieu: health lifestyles, the family and social class. In The Palgrave handbook of social theory in health, illness and medicine. London: Palgrave Macmillan UK. Doi/10.1057/9781137355621_24
Joubert, L. B., Wan, A. H., Bhatt, S., & Chan, C. L. (2015). An exploratory study of social capital and cancer survivorship: Meaning and interpersonal relationships among Chinese with cancer. Illness, Crisis & Loss, 23(1), 33-44.doi/abs/10.2190/IL.23.1.d
Kanta Maharana, S. (2009). Phenomenology of Consciousness in Ādi Śamkara and Edmund Husserl. Indo-Pacific Journal of Phenomenology, 9(1), 1-12. doi/pdf/10.1080/20797222.2009.11433987
Karmann, J., Miaux, S., Glover, T., Winters, M., & Kestens, Y. (2025). The sociality of walking: A post-phenomenological study on everyday walking among parents in Québec. SSM-Qualitative Research in Health, 100600.
Kawachi, I., Subramanian, SV., Kim, D. (2007). Social capital and health. New York: Springer; NY.
Kelly, M. P., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of health & illness, 18(2), 241-257. doi/pdfdirect/10.1111/1467-9566.ep10934993
Kim, G. S., & Kim, J. W.(2018). The influence of caring experiences, caring time and chronic illness of family caregivers of cancer patients on their quality of life: focusing on the moderating effects of social capital. Health and Social Welfare Review, 38 (4), 57-97.
Laryionava, K., Pfeil, T. A., Dietrich, M., Reiter-Theil, S., Hiddemann, W., & Winkler, E. C. (2018). The second patient? Family members of cancer patients and their role in end-of-life decision making. BMC palliative care, 17, 1-9. doi.org/10.1186/s12904-018-0288-2
Leonidou, C., & Giannousi, Z. (2018). Experiences of caregivers of patients with metastatic cancer: What can we learn from them to better support them?. European Journal of Oncology Nursing, 32, 25-32.
Lewis, J. M., DiGiacomo, M., Luckett, T., Davidson, P. M., & Currow, D. C. (2013). A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. Journal of pain and symptom management, 45(1), 92-103.
Putnam, R. D. (2000). Bowling alone: The collapse and revival of American community. Simon Schuster.
Lindström, M., & Rosvall, M. (2019). Two theoretical strands of social capital, and total, cardiovascular, cancer and other mortality: A population-based prospective cohort study. SSM-population health, 7, 100337.
Lois, D. (2022). Social networks, family social capital, and child health. Social networks and health inequalities, 109. Doi.org/10.1007/978-3-030-97722-1_7
Mpanje, D., Gibbons, P., McDermott, R., Omia, D. O., & Olungah, C. O. (2022). Social capital undergirds coping strategies: evidence from two informal settlements in Nairobi. Journal of International Humanitarian Action, 7(1), 7. Doi.org/10.1186/s41018-022-00115-0
Najjuka, S. M., Iradukunda, A., Kaggwa, M. M., Sebbowa, A. N., Mirembe, J., Ndyamuhaki, K., ... & Kiguli, S. (2023). The caring experiences of family caregivers for patients with advanced cancer in Uganda: A qualitative study. Plos one, 18(10), e0293109. doi.org/10.1371/journal.pone.0293109
Ng, M. S. N., So, W. K. W., Choi, K. C., Chan, W. C. H., Chan, H. Y. L., & Chan, C. W. H. (2022). Exploring social capital for family caregivers of patients with chronic organ failure: study protocol for a concept mapping study. BMJ open, 12(6), e063691.
Palanisamy, B., Kosalram, K., & Gopichandran, V. (2017). Dimensions of social capital of families with thalassemia in an indigenous population in Tamil Nadu, India–a qualitative study. International journal for equity in health, 16, 1-12. DOI 10.1186/s12939-017-0609-8
Pan, Z., Li, T., Jin, G., & Lu, X. (2024). Caregiving experiences of family caregivers of patients with schizophrenia in a community: a qualitative study in Beijing. BMJ open, 14(4), e081364 doi.org/10.1136/ bmjopen-2023-081364).
OECD (2023), Chronic diseases, www.oecd.org
Ratcliffe, M., & Broome, M. (2012). 17 Existential phenomenology, psychiatric illness, and the death of possibilities. The Cambridge companion to existentialism, 361.
Ray, R. A., & Street, A. F. (2011). The dynamics of socio-connective trust within support networks accessed by informal caregivers. Health:, 15(2), 137-152. DOI: 10.1177/1363459309360786
Svenaeus, F. (2013). Naturalistic and phenomenological theories of health: Distinctions and connections. Royal Institute of Philosophy Supplements, 72, 221-238. Doi:10.1017/s13582461130012x.
Torrejón, M. J., & Martin-Matthews, A. (2022). A qualitative approach to bridging and bonding social capital: Experiences of a cohort of Chilean older people. Social Science & Medicine, 296, 114710.
Wicaksono, R. B., Muhaimin, A., Willems, D. L., & Pols, J. (2024). Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review. Home Health Care Management & Practice, doi/pdf/10.1177/10848223231224779
World health organization (2024), Amplifying the lived experience of people affected by cancer, www.who.int.

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