جامعه شناسی کاربردی (Sep 2024)
Phenomenological Exploration of Organ Donor Families’ Experiences: From Decision-Making to the Consequences of Life Donation
Abstract
Introduction Organ donation is heavily reliant on family decision-making, which represents a critical juncture in the donation process. Families faced with the option of organ donation must make this decision on behalf of their brain-dead loved one, while grappling with the emotional strain of an unexpected death and a limited timeframe. This high-stakes decision can have long-lasting impacts on family members, who must reconcile their choice, whether they feel satisfied with it or compelled to accept it, even if they later have doubts. This study employed a transcendental phenomenological approach to explore the lived experiences of organ donor families regarding the decision-making process and its aftermath. The goal was to gain a deeper, more nuanced understanding of this complex phenomenon and its associated challenges. Specifically, the study aimed to address the following research questions: How have donor families experienced the process of deciding about organ donation? How have donor families conceptualized the outcomes and consequences of organ donation? By delving into the personal narratives and perspectives of organ donor families, this research sought to shed light on the multifaceted human experience at the heart of organ donation, informing efforts to better support families during this difficult time. Materials & Methods This qualitative study utilized a transcendental phenomenological approach to explore the lived experiences of organ donor families. Phenomenological research seeks to capture the essence of a particular experience by gathering detailed accounts from individuals who have directly encountered the phenomenon of interest. Using purposive and criterion-based sampling techniques, the study recruited 17 organ donor families to participate. This sampling approach ensured the inclusion of information-rich cases aligned with the research objectives. Data were collected through in-depth, semi-structured interviews. This interview format allowed for gathering comprehensive, first-hand accounts from participants about their experiences related to organ donation decision-making and its aftermath. The interview data were transcribed and converted into text, which was then systematically coded and interpreted using the analytical method proposed by Moustakas. This phenomenological approach enabled the researchers to identify the core themes and essential meanings underlying the participants' lived experiences. Discussion of Results & Conclusion The findings of this study revealed the complex and emotionally fraught experiences of organ donor families, which coalesced around 3 primary themes and 10 related sub-themes. Organ donor families found themselves in a decision-making purgatory, grappling with internal tensions, time pressure, and excruciating dilemma of reconciling reason and emotion in the face of their loved one's brain death and the subsequent request for organ donation. Some families also contended with a charismatic decision-maker, who wielded significant influence over the final choice. Participants described experiencing both stigmatization and positive reinforcement from their social circles regarding their organ donation decision. Some also felt a sense of intrinsic social exclusion as the gravity of their choice set them apart from others, who had not faced such a weighty decision. Despite the immense challenges, many donor families ultimately derived a profound sense of peace, fulfillment, and even joy from their decision to donate their loved one's organs. They expressed a belief that they had honored their loved one's wishes and made the right choice, even if the process had been agonizing. In conclusion, this study provided a nuanced, empathetic portrayal of the lived experiences of organ donor families. The findings underscored the profound personal and social complexities inherent in the organ donation decision-making process and offered valuable insights to inform supportive interventions and policy considerations. By amplifying the voices of these families, the research aimed to enhance understanding and ultimately improve outcomes for all those impacted by this challenging yet profoundly meaningful experience. The limited timeframe for organ donation not only created a sense of urgency, but also posed a significant challenge for donor families. These families had to make a crucial decision while simultaneously grappling with the profound loss of their loved one, which heightened their stress and emotional pressure. During the decision-making process, donor families faced the difficult task of reconciling the tension between logic and emotion. Logically, they recognized the value of donating organs to those in need, even if the decision was painful. Emotionally, however, their feelings and family relationships took precedence. This internal conflict could make the decision complex and burdensome, evoking a range of intense emotions, including fear, grief, anxiety, and a deep sense of responsibility. Adding to the complexity, the presence of a charismatic individual within the family could play a crucial role in the decision-making process. Such a person might be able to help harmonize and bring family members to a consensus. Donor families also reported receiving both positive and negative social feedback. Some experienced stigmatization or a sense of intrinsic social exclusion as relatives and acquaintances failed to understand or accept their decision to donate. In response, some participants chose to voluntarily distance themselves from those who could not empathize with their actions. Despite these challenges, the majority of participants ultimately expressed happiness and heartfelt satisfaction with the decision they had made to donate their loved one's organs. This suggested that, while the process was fraught with difficulty, the outcome could provide a profound sense of meaning and closure for donor families.
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