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Ebrahimi Varzanh L, Fathi E. (2026). The Lived Experience of Caregivers of Butterfly Patients: A Phenomenological Study. refahj. 25(99), : 7 doi:10.32598/refahj.25.99.4663.1
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URL: http://refahj.uswr.ac.ir/article-1-4454-en.html
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Extended Abstract
Introduction
Epidermolysis Bullosa (EB) is a rare genetic disorder characterized by extreme skin fragility and recurrent painful blistering (Fine et al., 2014). The condition varies in type and severity and is often diagnosed belatedly (Dănescu et al., 2015). Primary care for individuals with EB typically falls on family members, especially parents, demanding intensive physical, medical, and psychological support (Wu et al., 2020). This profound responsibility frequently leads to caregiver burnout, emotional distress, and depression (Bruckner et al., 2020; Chateau et al., 2023). Research indicates that mothers, in particular, experience significant declines in their quality of life (Chogani et al., 2021). The caregiving burden model provides a framework for understanding both the objective and subjective dimensions of this strain (Liu et al., 2020). However, there is a notable scarcity of research within the Iranian context examining caregivers’ lived experiences, underscoring the necessity for an in-depth qualitative investigation.
Method
This study adopted an interpretative (hermeneutic) phenomenological approach to explore the lived experiences of caregivers for individuals with EB. Utilizing purposive sampling, eleven caregivers—primarily mothers associated with the “EB Home” NGO—were recruited for semi-structured interviews. The collected data were analyzed following the seven-step method outlined by Diekelmann et al. (1989). To ensure the trustworthiness of the findings, the study adhered to Lincoln and Guba’s (1985) criteria of credibility, transferability, dependability, and confirmability.
Findings
The analysis revealed five central themes characterizing the lived experiences of EB caregivers:
Navigating Social Exclusion Amid Public Ignorance: Caregivers reported that a pervasive lack of public awareness and unfounded fears of contagion fostered stigmatization and social rejection, leading their children to conceal symptoms and withdraw from social spaces. One caregiver stated, “Strangers look at her with contempt and sometimes don’t respond; that’s why I prefer she stays home” (Participant 1). Another noted a direct consequence: “Once she went shopping, the shopkeeper didn’t talk to her, so she decided not to go out again” (Participant 3). Some found that proactive education could mitigate this: “When I explained her condition is not contagious, their behavior improved” (Participant 2).
Enduring Emotional and Psychological Challenges in Family Adaptation: Initial reactions to the diagnosis included shock, grief, anger, helplessness, and fear. Over time, these intense emotions typically evolved toward acceptance and adaptive coping, as reflected in one participant›s account: “At first I felt nothing, then I realized and cried for a while… at night I worried about my child” (Participant 8).
Redefining Family Roles and Caregiving Dynamics: Mothers predominantly assumed the primary caregiver role. The active involvement of fathers was identified as a crucial factor in alleviating maternal stress and maintaining family cohesion.
Utilizing Support Mechanisms and Social Resources: Emotional sustenance, professional counseling, peer networks, and guidance from medical and charitable organizations were emphasized as vital resources that fostered resilience and a sense of community among caregivers.
Confronting Economic and Educational Pressures as Structural Barriers: The financial burden of specialized care and the disruption of educational pathways were highlighted as major structural obstacles that limited social participation and widened the developmental gap with peers.
These themes illustrate the complex interplay of social, emotional, familial, and structural factors that shape the caregiving experience and the well-being of individuals with EB.
Discussion
This study demonstrates that public awareness critically shapes the social experiences of individuals with EB. Visible symptoms often lead to stigmatization and social rejection, thereby reducing community participation and inflicting psychological strain on families. Enhancing public understanding can mitigate negative social interactions and promote inclusion (Zhu et al., 2017). Support from family, counselors, and peer networks is instrumental in fostering disease acceptance and improving quality of life (Lee et al., 2017), with psychological support being key to reducing distress and enhancing family mental health (Law et al., 2019).
Caregivers navigate significant economic and social burdens, which detrimentally affect their quality of life. While mothers bear the brunt of caregiving pressure, active paternal involvement can effectively alleviate this burden (Quitner et al., 1998). Initial parental reactions to diagnosis commonly involve shock and despair, though these often transition toward adaptation as awareness and experience grow (Park et al., 2022). The exorbitant cost of treatment imposes severe financial stress, highlighting an urgent need for enhanced financial aid and improved healthcare coverage (Salmon et al., 2025). Concurrently, patients face persistent educational challenges, necessitating tailored support systems (Adama et al., 2021).
In conclusion, a multifaceted intervention strategy is imperative. This should include public awareness campaigns, robust socio-economic support, and the development of targeted educational programs. Such measures are essential to improve the quality of life for both patients and caregivers and to foster genuine social inclusion. This study calls for further research to continue exploring the complex, multidimensional challenges faced by the EB community.
Introduction
Epidermolysis Bullosa (EB) is a rare genetic disorder characterized by extreme skin fragility and recurrent painful blistering (Fine et al., 2014). The condition varies in type and severity and is often diagnosed belatedly (Dănescu et al., 2015). Primary care for individuals with EB typically falls on family members, especially parents, demanding intensive physical, medical, and psychological support (Wu et al., 2020). This profound responsibility frequently leads to caregiver burnout, emotional distress, and depression (Bruckner et al., 2020; Chateau et al., 2023). Research indicates that mothers, in particular, experience significant declines in their quality of life (Chogani et al., 2021). The caregiving burden model provides a framework for understanding both the objective and subjective dimensions of this strain (Liu et al., 2020). However, there is a notable scarcity of research within the Iranian context examining caregivers’ lived experiences, underscoring the necessity for an in-depth qualitative investigation.
Method
This study adopted an interpretative (hermeneutic) phenomenological approach to explore the lived experiences of caregivers for individuals with EB. Utilizing purposive sampling, eleven caregivers—primarily mothers associated with the “EB Home” NGO—were recruited for semi-structured interviews. The collected data were analyzed following the seven-step method outlined by Diekelmann et al. (1989). To ensure the trustworthiness of the findings, the study adhered to Lincoln and Guba’s (1985) criteria of credibility, transferability, dependability, and confirmability.
Findings
The analysis revealed five central themes characterizing the lived experiences of EB caregivers:
Navigating Social Exclusion Amid Public Ignorance: Caregivers reported that a pervasive lack of public awareness and unfounded fears of contagion fostered stigmatization and social rejection, leading their children to conceal symptoms and withdraw from social spaces. One caregiver stated, “Strangers look at her with contempt and sometimes don’t respond; that’s why I prefer she stays home” (Participant 1). Another noted a direct consequence: “Once she went shopping, the shopkeeper didn’t talk to her, so she decided not to go out again” (Participant 3). Some found that proactive education could mitigate this: “When I explained her condition is not contagious, their behavior improved” (Participant 2).
Enduring Emotional and Psychological Challenges in Family Adaptation: Initial reactions to the diagnosis included shock, grief, anger, helplessness, and fear. Over time, these intense emotions typically evolved toward acceptance and adaptive coping, as reflected in one participant›s account: “At first I felt nothing, then I realized and cried for a while… at night I worried about my child” (Participant 8).
Redefining Family Roles and Caregiving Dynamics: Mothers predominantly assumed the primary caregiver role. The active involvement of fathers was identified as a crucial factor in alleviating maternal stress and maintaining family cohesion.
Utilizing Support Mechanisms and Social Resources: Emotional sustenance, professional counseling, peer networks, and guidance from medical and charitable organizations were emphasized as vital resources that fostered resilience and a sense of community among caregivers.
Confronting Economic and Educational Pressures as Structural Barriers: The financial burden of specialized care and the disruption of educational pathways were highlighted as major structural obstacles that limited social participation and widened the developmental gap with peers.
These themes illustrate the complex interplay of social, emotional, familial, and structural factors that shape the caregiving experience and the well-being of individuals with EB.
Discussion
This study demonstrates that public awareness critically shapes the social experiences of individuals with EB. Visible symptoms often lead to stigmatization and social rejection, thereby reducing community participation and inflicting psychological strain on families. Enhancing public understanding can mitigate negative social interactions and promote inclusion (Zhu et al., 2017). Support from family, counselors, and peer networks is instrumental in fostering disease acceptance and improving quality of life (Lee et al., 2017), with psychological support being key to reducing distress and enhancing family mental health (Law et al., 2019).
Caregivers navigate significant economic and social burdens, which detrimentally affect their quality of life. While mothers bear the brunt of caregiving pressure, active paternal involvement can effectively alleviate this burden (Quitner et al., 1998). Initial parental reactions to diagnosis commonly involve shock and despair, though these often transition toward adaptation as awareness and experience grow (Park et al., 2022). The exorbitant cost of treatment imposes severe financial stress, highlighting an urgent need for enhanced financial aid and improved healthcare coverage (Salmon et al., 2025). Concurrently, patients face persistent educational challenges, necessitating tailored support systems (Adama et al., 2021).
In conclusion, a multifaceted intervention strategy is imperative. This should include public awareness campaigns, robust socio-economic support, and the development of targeted educational programs. Such measures are essential to improve the quality of life for both patients and caregivers and to foster genuine social inclusion. This study calls for further research to continue exploring the complex, multidimensional challenges faced by the EB community.
Adama, E. A., Arabiat, D., Foster, M. J., Afrifa-Yamoah, E., R:union:s, K., Vithiatharan, R., & Lin, A. (2021). The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia. International Journal of Inclusive Education, 27(12), 1273–1286. https://doi.org/10.1080/13603116.2021.1888323
Bruckner, A. L., Losow, M., Wisk, J., Patel, N., Reha, A., Lagast, H., ... & Murrell, D. F. (2020). The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers. Orphanet journal of rare diseases, 15, 1-14. https://doi.org/10.1186/s13023-019-1279-y
Chateau, A. V., Blackbeard, D., & Aldous, C. (2023). The impact of epidermolysis bullosa on the family and healthcare practitioners: a scoping review. International Journal of Dermatology, 62(4), 459-475. https://doi.org/10.1111/ijd.16197
Chogani, F., Parvizi, M. M., Murrell, D. F., & Handjani, F. (2021). Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers. International Journal of Women’s Dermatology, 7(5), 721-726. https://doi.org/10.1016/j.ijwd.2021.08.007
Dănescu, S., Has, C., Senila, S., Ungureanu, L., & Cosgarea, R. (2015). Epidemiology of inherited epidermolysis bullosa in Romania and genotype-phenotype correlations in patients with dystrophic epidermolysis bullosa. Journal of the European Academy of Dermatology and Venereology: JEADV, 29(5), 899–903. https://doi.org/10.1111/jdv.12709
Diekelmann, N. L., Allen, D., & Tanner, C. A. (1989). The NLN criteria for appraisal of baccalaureate programs: A critical hermeneutic analysis (Vol. 15, No. 2253). ABRAMS.
Fine, J. D., Bruckner-Tuderman, L., Eady, R. A., Bauer, E. A., Bauer, J. W., Has, C., Heagerty, A., Hintner, H., Hovnanian, A., Jonkman, M. F., Leigh, I., Marinkovich, M. P., Martinez, A. E., McGrath, J. A., Mellerio, J. E., Moss, C., Murrell, D. F., Shimizu, H., Uitto, J., Woodley, D., … Zambruno, G. (2014). Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. Journal of the American Academy of Dermatology, 70(6), 1103–1126. https://doi.org/10.1016/j.jaad.2014.01.903
Law, E., Fisher, E., Eccleston, C., & Palermo, T. M. (2019). Psychological interventions for parents of children and adolescents with chronic illness. The Cochrane database of systematic reviews, 3(3). https://doi.org/10.1002/14651858.CD009660.pub4
Lee, A. A., Piette, J. D., Heisler, M., Janevic, M. R., Langa, K. M., & Rosland, A.-M. (2017). Family members’ experiences supporting adults with chronic illness: A national survey. Families, Systems, & Health, 35(4), 463–473. https://doi.org/10.1037/fsh0000293
Lincoln, Y.S. and Guba, E.G. (1985) Naturalistic Inquiry. SAGE, Thousand Oaks, 289-331. http://dx.doi.org/10.1016/0147-1767(85)90062-8
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International journal of nursing sciences, 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Park, M., Choi, E. K., Lyu, C. J., Han, J. W., & Hahn, S. M. (2022). Family resilience factors affecting family adaptation of children with cancer: A cross-sectional study. European journal of oncology nursing: the official journal of European Oncology Nursing Society, 56, 102078. https://doi.org/10.1016/j.ejon.2021.102078
Quittner, A. L., Opipari, L. C., Espelage, D. L., Carter, B., Eid, N., & Eigen, H. (1998). Role strain in couples with and without a child with a chronic illness: associations with marital satisfaction, intimacy, and daily mood. Health psychology: official journal of the Division of Health Psychology, American Psychological Association, 17(2), 112–124. https://doi.org/10.1037//0278-6133.17.2.112
Salamon, G., Strobl, S., Matschnig, M. S., et al. (2025). The physical, emotional, social, and functional dimensions of epidermolysis bullosa: An interview study on burdens and helpful aspects from a patients’ perspective. Orphanet Journal of Rare Diseases, 20 (3). https://doi.org/10.1186/s13023-024-03475-5
Van Manen, M. (1997). Researching lived experience: Human science for an action sensitive pedagogy (2nd ed.). London, Ontario: The Althouse Press.
Wu, Y. H., Sun, F. K., & Lee, P. Y. (2020). Family caregivers’ lived experiences of caring for epidermolysis bullosa patients: A phenomenological study. Journal of Clinical Nursing, 29(9-10), 1552–1560. https://doi.org/10.1111/jocn.15209
Zhu, X., Smith, R. A., & Parrott, R. L. (2017). Living with a Rare Health Condition: The Influence of a Support Community and Public Stigma on Communication, Stress, and Available Support. Journal of applied communication research: JACR, 45(2), 179–198. https://doi.org/10.1080/00909882.2017.1288292
Chateau, A. V., Blackbeard, D., & Aldous, C. (2023). The impact of epidermolysis bullosa on the family and healthcare practitioners: a scoping review. International Journal of Dermatology, 62(4), 459-475. https://doi.org/10.1111/ijd.16197
Chogani, F., Parvizi, M. M., Murrell, D. F., & Handjani, F. (2021). Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers. International Journal of Women’s Dermatology, 7(5), 721-726. https://doi.org/10.1016/j.ijwd.2021.08.007
Dănescu, S., Has, C., Senila, S., Ungureanu, L., & Cosgarea, R. (2015). Epidemiology of inherited epidermolysis bullosa in Romania and genotype-phenotype correlations in patients with dystrophic epidermolysis bullosa. Journal of the European Academy of Dermatology and Venereology: JEADV, 29(5), 899–903. https://doi.org/10.1111/jdv.12709
Diekelmann, N. L., Allen, D., & Tanner, C. A. (1989). The NLN criteria for appraisal of baccalaureate programs: A critical hermeneutic analysis (Vol. 15, No. 2253). ABRAMS.
Fine, J. D., Bruckner-Tuderman, L., Eady, R. A., Bauer, E. A., Bauer, J. W., Has, C., Heagerty, A., Hintner, H., Hovnanian, A., Jonkman, M. F., Leigh, I., Marinkovich, M. P., Martinez, A. E., McGrath, J. A., Mellerio, J. E., Moss, C., Murrell, D. F., Shimizu, H., Uitto, J., Woodley, D., … Zambruno, G. (2014). Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification. Journal of the American Academy of Dermatology, 70(6), 1103–1126. https://doi.org/10.1016/j.jaad.2014.01.903
Law, E., Fisher, E., Eccleston, C., & Palermo, T. M. (2019). Psychological interventions for parents of children and adolescents with chronic illness. The Cochrane database of systematic reviews, 3(3). https://doi.org/10.1002/14651858.CD009660.pub4
Lee, A. A., Piette, J. D., Heisler, M., Janevic, M. R., Langa, K. M., & Rosland, A.-M. (2017). Family members’ experiences supporting adults with chronic illness: A national survey. Families, Systems, & Health, 35(4), 463–473. https://doi.org/10.1037/fsh0000293
Lincoln, Y.S. and Guba, E.G. (1985) Naturalistic Inquiry. SAGE, Thousand Oaks, 289-331. http://dx.doi.org/10.1016/0147-1767(85)90062-8
Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International journal of nursing sciences, 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012
Park, M., Choi, E. K., Lyu, C. J., Han, J. W., & Hahn, S. M. (2022). Family resilience factors affecting family adaptation of children with cancer: A cross-sectional study. European journal of oncology nursing: the official journal of European Oncology Nursing Society, 56, 102078. https://doi.org/10.1016/j.ejon.2021.102078
Quittner, A. L., Opipari, L. C., Espelage, D. L., Carter, B., Eid, N., & Eigen, H. (1998). Role strain in couples with and without a child with a chronic illness: associations with marital satisfaction, intimacy, and daily mood. Health psychology: official journal of the Division of Health Psychology, American Psychological Association, 17(2), 112–124. https://doi.org/10.1037//0278-6133.17.2.112
Salamon, G., Strobl, S., Matschnig, M. S., et al. (2025). The physical, emotional, social, and functional dimensions of epidermolysis bullosa: An interview study on burdens and helpful aspects from a patients’ perspective. Orphanet Journal of Rare Diseases, 20 (3). https://doi.org/10.1186/s13023-024-03475-5
Van Manen, M. (1997). Researching lived experience: Human science for an action sensitive pedagogy (2nd ed.). London, Ontario: The Althouse Press.
Wu, Y. H., Sun, F. K., & Lee, P. Y. (2020). Family caregivers’ lived experiences of caring for epidermolysis bullosa patients: A phenomenological study. Journal of Clinical Nursing, 29(9-10), 1552–1560. https://doi.org/10.1111/jocn.15209
Zhu, X., Smith, R. A., & Parrott, R. L. (2017). Living with a Rare Health Condition: The Influence of a Support Community and Public Stigma on Communication, Stress, and Available Support. Journal of applied communication research: JACR, 45(2), 179–198. https://doi.org/10.1080/00909882.2017.1288292
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Received: 2025/04/8 | Accepted: 2025/12/10 | Published: 2026/01/27
Received: 2025/04/8 | Accepted: 2025/12/10 | Published: 2026/01/27
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