کیفیت زندگی مادران کودکان ناشنوا: تجربه زیسته با رویکرد پدیدارشناسی (مقاله علمی وزارت علوم)
درجه علمی: نشریه علمی (وزارت علوم)
آرشیو
چکیده
داشتن فرزند دارای ناتوانی ممکن است بر سلامت روانی والدین، به ویژه مادران تأثیر منفی داشته باشد. هدف از پژوهش حاضر، بررسی کیفیت زندگی مادران نوجوانان با آسیب شنوایی بر اساس رویکرد پدیدارشناسی بود. طرح پژوهش حاضر بر اساس رویکرد پدیدارشناسی توصیفی انجام شد. جامعه پژوهش شامل مادران دارای نوجوانان با آسیب شنوایی شهر رشت در سال 1402-1403 بود. نمونه پژوهش شامل 10 نفر از مادران این گروه از نوجوانان می شد که با روش نمونه گیری هدفمند انتخاب شده بودند. ملاک های اصلی برای انتخاب شرکت کنندگان داشتن فرزند با آسیب شنوایی شدید، سن 35 تا 50 سال، سطح سواد والدین از راهنمایی تا کارشناسی و شرکت داوطلبانه در پژوهش بود. برای جمع آوری داده ها از مصاحبه نیمه ساختاریافته استفاده و داده ها با روش کلایزی تحلیل شد. نتایج مصاحبه ها پس از استخراج موضوعی و طبقه بندی، در هشت مقوله اصلی تحت عنوان چرخه هیجان، عوامل مربوط به والدین، ماهیت آسیب شنوایی، مسائل حاد بیرون از خانواده، نگرانی مربوط به تصمیم های مهم دوران جوانی، تجربه موفقیت های کوچک، آموزش و آگاهی و داشتن هدف در زندگی طبقه بندی شدند. همچنین 25 مقوله فرعی استخراج شد. بر اساس یافته های این مطالعه، مادران دارای فرزند با آسیب شنوایی نگرانی های متعددی را تجربه می کنند و ممکن است به کیفیت زندگی آن ها آسیب بزند؛ بنابراین لازم است در برنامه های توان بخشی به ابعاد هیجانی، احساسی و وضعیت روان شناختی این مادران نیز توجه شود.Quality of Life of Mothers of Deaf Children: Lived Experience with a Phenomenological Approach
Having a disabled child may have a negative impact on the mental health of parents, especially mothers. The aim of the present study was to investigate the quality of life of mothers of adolescents with hearing impairment based on a phenomenological approach. The present research design was based on a descriptive phenomenological approach. The research population included mothers of adolescents with hearing impairment in Rasht in 2023-2024. The research sample included 10 mothers of this group of adolescents who were selected through purposive sampling. The main criteria for selecting participants were: having a child with severe hearing impairment, age 35 to 50 years, the parents’ level of education from middle school to bachelor’s degree, and voluntary participation in the study. Semi-structured interviews were used to collect data, and the data were analyzed using the Collaizi method. After thematic extraction and classification, the interview results were classified into eight main categories: emotional cycle, parental factors, nature of the hearing impairment, acute issues outside the family, concerns about important decisions during youth, experiencing small successes, education and awareness, and having a purpose in life. Also, 25 subcategories were extracted. Based on the findings of this study, mothers of adolescents with hearing impairment experience numerous concerns. It may harm their quality of life. Therefore, it is necessary to pay attention to the emotional, sentimental, and psychological aspects of these mothers in rehabilitation programs.
Keywords: hearing impairment, lived experience, phenomenology, quality of life
Extended
Introduction
Hearing impairment, encompassing deafness and hard-of-hearing conditions, represents the most prevalent sensory disability (Hallahan et al., 2023). This impairment can significantly disrupt typical emotional development (Danadel & Ashori, 2025). Typically, the birth of a child with hearing impairment and subsequent concerns about their future may become sufficiently intense to compromise family stability and cohesion (Wu et al., 2024). Mothers in particular require substantial social support to access crucial information about their children's unique needs and health status (Marie et al., 2023). Research consistently demonstrates that parents of children with disabilities experience poorer quality of life compared to parents of typically developing children (Roberts & Fishbach, 2020; Kobosko et al., 2025).
Parenting a child with hearing impairment involves numerous complex challenges. These challenges hold significance both from clinical perspectives (e.g., psychological stressors) and positive dimensions (e.g., personal growth, enhanced spirituality, and parenting fulfillment) (Eghbalnia & Ashori, 2024). As mothers typically shoulder the primary caregiving responsibilities for adolescents with hearing impairment, research has disproportionately overlooked their quality of life as a central focus. A deeper understanding of mothers' lived experiences could substantially improve support services and social provisions for these families.
Research Question
What are the lived experiences of mothers of adolescents with hearing impairment regarding their quality of life?
Literature Review
Kobosko et al. (2025) found significant relationships between quality of life and multiple factors - including general health, personality traits, speech understanding, and social factors - in individuals with hearing impairment, particularly cochlear implant users. Complementing these findings, Rosenzweig et al. (2024) demonstrated that maternal acceptance of adolescents with hearing impairment enhances psychological well-being and improves overall quality of life. Further supporting this framework, Aghaziarti and Ashori (2023) identified parental stress as a key predictor of various developmental outcomes in children.
Methodology
This qualitative study employed a phenomenological approach with descriptive strategy to explore the lived experiences of mothers of adolescents with hearing impairment regarding quality of life. Using purposive sampling, we recruited 10 participants (mothers of adolescents with hearing impairment) from Rasht Deaf Center's 2023-2024 service recipients, continuing interviews until theoretical saturation was achieved. Data collection involved 50-80 minute semi-structured in-depth interviews, analyzed manually via Colaizzi's phenomenological method.
Results
The analysis of interview data using Colaizzi's phenomenological method yielded eight core thematic categories with 25 associated subcategories, as detailed in Table 1. These emergent themes systematically capture the lived experiences of mothers regarding their quality of life.
Table 1. Core Themes and Subcategories Emerging from Participants' Lived Experiences
Main categories
Subcategories
The emotional cycle
Feelings of shame and guilt
The concept of God
Psychological problems
Parental factors
Inability to communicate with the child
Challenges in sex education
Lack of cooperation between parents
Weak marital relationships
Excessive care
Collapse of family roles
The nature of the hearing impairment
Medical and rehabilitation costs
Self-care
Abuse by others
Acute issues outside the family
Support from social institutions
Social reaction
Inability to communicate with others
Non-acceptance
Concerns about important decisions youth period
Job opportunities
Family formation
Educating the next generation
Experience small successes
Enjoying the high
Emphasizing the positive moments of the day
Education and awareness
Emotional and communication development
Development of problem-solving skills
Having a purpose in life
Strengthening the spirit in life
Strengthening independence
Thematic analysis of interview data revealed eight primary categories characterizing maternal experiences: (1) emotional cycle, (2) parental factors, (3) nature of the hearing impairment, (4) acute extrafamilial challenges, (5) concerns about critical youth decisions, (6) small-success experiences, (7) education and awareness, and (8) purposeful living. Additionally, 25 supporting subcategories were identified through this phenomenological examination.
Discussion
This phenomenological study explored quality of life among mothers of adolescents with hearing impairment through their lived experiences. The analysis revealed eight primary themes, with the emotional cycle emerging as the first major category - a finding consistent with Aghaziarti et al.'s (2020) research. Within this category, mothers frequently reported experiencing shame and guilt related to their child's hearing impairment (Rosa & Angulo, 2021). The second key theme, parental factors, highlighted communication challenges within families. Findings indicated that many adolescents with hearing impairment develop in environments where conveying emotions, needs, and perspectives to hearing parents remains particularly difficult, creating unique familial dynamics. This finding is consistent with the results of Rosenzweig et al. (2024) that parental acceptance of adolescents with hearing impairment increases their psychological well-being and quality of life. One of the categories perceived by mothers of adolescents with hearing impairment is related to the nature of the hearing impairment. This finding is consistent with the results of Rosa and Angola (2021). The experiences of mothers of adolescents with hearing impairment showed that they were concerned about the heavy burden of rehabilitation and treatment costs for their child (Ashori & Erabi, 2019).
The fourth major theme, acute extrafamilial challenges, aligned with Eghbalnia and Ashori's (2024) findings, reflecting mothers' prevalent worries about social rejection of their children with hearing impairment. The final thematic category, critical youth decisions, echoed Aghbalnia et al.'s (2020) results, encompassing three specific maternal concerns: (1) long-term future uncertainties, (2) marriage prospects, and (3) employment possibilities. Notably, mothers frequently emphasized the importance of secure government employment for their children, valuing both its stable working conditions and associated social support benefits.
Conclusion
The phenomenological analysis revealed that hearing parents of adolescents with hearing impairment experience multifaceted impacts from their child's condition. These findings highlight critical opportunities to develop targeted educational and psychological interventions addressing the identified challenges - particularly those affecting maternal mental health and quality of life. While this study provides valuable insights, its limitations include a participant pool restricted to mothers accessing deaf center services. Future research should incorporate more diverse samples. Practically, we recommend that mental health professionals integrate these evidence-based categories into therapeutic strategies to enhance family support systems and parental wellbeing.
Acknowledgments
We extend our deepest gratitude to the mothers who generously shared their experiences and made this research possible.
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