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alahdadi N, mirzaei E. (2024). Biosocial study of patients with thalassemia: a foundation data study. refahj. 24(94), : 4 doi:10.32598/refahj.24.94.2594.6
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Introduction
Thalassemia is one of the most common hereditary diseases seen in all races of the world. There are about 26,000 thalassemia patients in Iran (Pour Abuli et al., 2014: 283). Thalassemia brings many problems for the patient, family and health system. Patients with thalassemia are exposed to many physical, psychological, emotional and social problems due to facial changes caused by the disease, jaw and mouth changes, short stature and other complications caused by the disease (Vaazi, 1394: 1635: 10).On the other hand, in the modern world, a person’s daily life and lived experience are formed in interaction with institutions. An institution is an organized system of social relations that includes some common values and processes and was created to respond to some of the basic needs of society. Institutions usually carry out their activities through social organizations. They do it. Based on this, the role of institutions such as family and society is to establish appropriate behaviors to perform basic functions in a society (Mohsani, 1395: 147). Human experience in institutional spaces is full of conflict, discipline and imposed restrictions, modern institutions have the power to control and monitor people and act to discipline and normalize them. From this point of view, power is inevitably applied in an institutional way (Rosenberg et al., 1390). Therefore, patients are not just biological organisms that have suffered a disorder, but they are human beings who think, hope, act, and are supported or suffer in interaction with social institutions (ibid.). :265). Family, society and social institutions face thalassemia disease and its patients in every society according to cultural and social experiences, economic status, age, disease conditions, being supported and not supported in different ways. Pouraboli et al., 2013). Basically, in every society, the cultural rules determine who the patient is and what behavior should be expected from him and the people around him, therefore, the current research is trying to analyze the social life of patients with thalassemia in the face of family and society. It answers this basic question: What experience and interpretation do thalassemia patients have of their attitude, behavior, and the effects and results of family and society’s exposure to them?
Method
Methodology is a way of thinking about a social reality and phenomenon, and method means a set of procedures and techniques for collecting and analyzing data. Therefore, methodology is a general framework that provides the intersection of epistemology and ontology about a field of study. In fact, any methodology can use a range of methods to examine a part of reality (Strauss and Corbin, 1998: 3 quoted by Mohammadpour, 2012).
In this research, according to the nature of the subject and research objectives, qualitative research method and unstructured interview strategy have been used. Understanding the narrative of the patients about their relationship with society, their experiences in this regard and the conditions that determine this pattern of communication forms the basic basis of this research. The data collection tool in this research is an unstructured interview in Khorramshahr city.
Discussion
The general purpose of this research is to analyze the biosocial analysis of thalassemia patients by relying on the foundation data method. The statistical population of thalassemia patients in the category of 20 to 50 in Khorramshahr city was selected as a statistical sample using a non-random sampling method and 15 people with a theoretical saturation criterion. The data obtained from interviews with thalassemia patients were coded and analyzed based on the foundation’s data method, which were coded and categorized in three main categories (social, psychological and biological) according to the theoretical model extracted from the research data and concepts.
The results obtained from the research show that among the social factors, the impact of three factors (social support, social blockage and social frustration), one factor of which is positive and the other two factors are negative, is the most. Answer: Thalassemia patients state that in some cases, their family, friends, neighbors and society treated them appropriately, and they were given emotional and physical support such as empathy, support, and care, but a number of interviewees stated that society treated them has not given any special support, an example of the statements of the patients was that the society considers them to be sick as a problem and that they do not have the ability to perform or assume a position in the society, and they also stated that for the purpose of treatment and treatment, an organ from They did not support and did not see the expected support from the society. Also, the results show that some patients have experienced social despair, are pessimistic, mistrustful of others, or think that the family and society discriminate between them and other people, which was observed even during interviews with some patients in the hospital. They do not trust family members and doctors.
The results of the research are in line with the research of Olivo et al. (2013), Gilbert et al. (2008), Yazdani-Fekr (2018) and Sazkar Amiri (2015) and inconsistent with the research of Ghanizadeh et al. (2006).
The most important psychological factors that are effective on thalassemia patients in facing the society and identified in this interview are: hope, trust and isolation. During the interview, the interviewees stated that they coped well with the disease and got used to it, and like all human beings, they lead their normal lives. They also expressed that they hope that with the help and support of family and society in In the future, they can recover and return to their normal lives. On the other hand, a number of patients are disappointed with the improvement of their condition and cut off their relationship with their family and friends, and have become secluded and isolated. The biological factors identified in this interview are the hereditary nature of this disease and the complications of thalassemia. All the interviewees stated that they had this disease since birth, and some patients stated that they have complications such as headache, dizziness, fever, fatigue, weakness, and growth retardation.
The results obtained from the bio-social findings of thalassemia patients show that the greatest impact of the social category in the form of emotional support and physical support in the statements of the interviewees was expressed in the form of helping family members and surrounding people or supporting special organizations. Social support means “feeling of peace and security that is instilled in us by others”.
Another category resulting from data coding and analysis is hope. The patients stated in their statements that they are optimistic about the future and hope that they will recover, that’s why they try to cope with the disease and live like a normal person. to continue their own lives, hope means “the ability to walk in paths towards a specific destination and gives a person the necessary motivation to walk in those paths”.
Another category resulting from coding is social blockage. Thalassemia patients stated that in some cases the society considers their disease as a problem and there are a series of obstacles to employment and presence in the society. Social blockage means “blocking the way of advancement and social mobility.” One of the answers that conveys the meaning of social obstruction is as follows: “I couldn’t work even though my field is civil engineering, and that’s because everyone sees thalassemia as a kind of disability in work. In this regard, I and others like me have been oppressed endlessly.” ».Another category is social despair, the interviewees have stated in their statements that their family discriminates against them and they are depressed or mistrustful and pessimistic towards others. Social disappointment is “sadness, a sense of loss, and a painful or disturbing gap between our expectations and reality.”Another category resulting from the coding of the text of the interviews is social isolation, some patients stated that they became isolated and reclusive and cut off their communication with friends, family and society. Social isolation means “absence of complete or almost complete communication between an individual and society”. As discussed in the conversations of thalassemia patients, being sick is only part of the problem of these people, and perhaps more bitter than this problem is being ignored by family members and society by discriminating and creating obstacles to their presence in society.
Ethical considerations
Authors’ contributions
All authors contributed in designing, running, and writing all parts of the research.
Funding
No direct financial support was received from any institution or organization for
the preparation of this article.
Conflicts of interest
This article does not overlap with other published works of the authors.
Following the ethics of research
In this article, all rights related to research ethics have been respected.
Thalassemia is one of the most common hereditary diseases seen in all races of the world. There are about 26,000 thalassemia patients in Iran (Pour Abuli et al., 2014: 283). Thalassemia brings many problems for the patient, family and health system. Patients with thalassemia are exposed to many physical, psychological, emotional and social problems due to facial changes caused by the disease, jaw and mouth changes, short stature and other complications caused by the disease (Vaazi, 1394: 1635: 10).On the other hand, in the modern world, a person’s daily life and lived experience are formed in interaction with institutions. An institution is an organized system of social relations that includes some common values and processes and was created to respond to some of the basic needs of society. Institutions usually carry out their activities through social organizations. They do it. Based on this, the role of institutions such as family and society is to establish appropriate behaviors to perform basic functions in a society (Mohsani, 1395: 147). Human experience in institutional spaces is full of conflict, discipline and imposed restrictions, modern institutions have the power to control and monitor people and act to discipline and normalize them. From this point of view, power is inevitably applied in an institutional way (Rosenberg et al., 1390). Therefore, patients are not just biological organisms that have suffered a disorder, but they are human beings who think, hope, act, and are supported or suffer in interaction with social institutions (ibid.). :265). Family, society and social institutions face thalassemia disease and its patients in every society according to cultural and social experiences, economic status, age, disease conditions, being supported and not supported in different ways. Pouraboli et al., 2013). Basically, in every society, the cultural rules determine who the patient is and what behavior should be expected from him and the people around him, therefore, the current research is trying to analyze the social life of patients with thalassemia in the face of family and society. It answers this basic question: What experience and interpretation do thalassemia patients have of their attitude, behavior, and the effects and results of family and society’s exposure to them?
Method
Methodology is a way of thinking about a social reality and phenomenon, and method means a set of procedures and techniques for collecting and analyzing data. Therefore, methodology is a general framework that provides the intersection of epistemology and ontology about a field of study. In fact, any methodology can use a range of methods to examine a part of reality (Strauss and Corbin, 1998: 3 quoted by Mohammadpour, 2012).
In this research, according to the nature of the subject and research objectives, qualitative research method and unstructured interview strategy have been used. Understanding the narrative of the patients about their relationship with society, their experiences in this regard and the conditions that determine this pattern of communication forms the basic basis of this research. The data collection tool in this research is an unstructured interview in Khorramshahr city.
Discussion
The general purpose of this research is to analyze the biosocial analysis of thalassemia patients by relying on the foundation data method. The statistical population of thalassemia patients in the category of 20 to 50 in Khorramshahr city was selected as a statistical sample using a non-random sampling method and 15 people with a theoretical saturation criterion. The data obtained from interviews with thalassemia patients were coded and analyzed based on the foundation’s data method, which were coded and categorized in three main categories (social, psychological and biological) according to the theoretical model extracted from the research data and concepts.
The results obtained from the research show that among the social factors, the impact of three factors (social support, social blockage and social frustration), one factor of which is positive and the other two factors are negative, is the most. Answer: Thalassemia patients state that in some cases, their family, friends, neighbors and society treated them appropriately, and they were given emotional and physical support such as empathy, support, and care, but a number of interviewees stated that society treated them has not given any special support, an example of the statements of the patients was that the society considers them to be sick as a problem and that they do not have the ability to perform or assume a position in the society, and they also stated that for the purpose of treatment and treatment, an organ from They did not support and did not see the expected support from the society. Also, the results show that some patients have experienced social despair, are pessimistic, mistrustful of others, or think that the family and society discriminate between them and other people, which was observed even during interviews with some patients in the hospital. They do not trust family members and doctors.
The results of the research are in line with the research of Olivo et al. (2013), Gilbert et al. (2008), Yazdani-Fekr (2018) and Sazkar Amiri (2015) and inconsistent with the research of Ghanizadeh et al. (2006).
The most important psychological factors that are effective on thalassemia patients in facing the society and identified in this interview are: hope, trust and isolation. During the interview, the interviewees stated that they coped well with the disease and got used to it, and like all human beings, they lead their normal lives. They also expressed that they hope that with the help and support of family and society in In the future, they can recover and return to their normal lives. On the other hand, a number of patients are disappointed with the improvement of their condition and cut off their relationship with their family and friends, and have become secluded and isolated. The biological factors identified in this interview are the hereditary nature of this disease and the complications of thalassemia. All the interviewees stated that they had this disease since birth, and some patients stated that they have complications such as headache, dizziness, fever, fatigue, weakness, and growth retardation.
The results obtained from the bio-social findings of thalassemia patients show that the greatest impact of the social category in the form of emotional support and physical support in the statements of the interviewees was expressed in the form of helping family members and surrounding people or supporting special organizations. Social support means “feeling of peace and security that is instilled in us by others”.
Another category resulting from data coding and analysis is hope. The patients stated in their statements that they are optimistic about the future and hope that they will recover, that’s why they try to cope with the disease and live like a normal person. to continue their own lives, hope means “the ability to walk in paths towards a specific destination and gives a person the necessary motivation to walk in those paths”.
Another category resulting from coding is social blockage. Thalassemia patients stated that in some cases the society considers their disease as a problem and there are a series of obstacles to employment and presence in the society. Social blockage means “blocking the way of advancement and social mobility.” One of the answers that conveys the meaning of social obstruction is as follows: “I couldn’t work even though my field is civil engineering, and that’s because everyone sees thalassemia as a kind of disability in work. In this regard, I and others like me have been oppressed endlessly.” ».Another category is social despair, the interviewees have stated in their statements that their family discriminates against them and they are depressed or mistrustful and pessimistic towards others. Social disappointment is “sadness, a sense of loss, and a painful or disturbing gap between our expectations and reality.”Another category resulting from the coding of the text of the interviews is social isolation, some patients stated that they became isolated and reclusive and cut off their communication with friends, family and society. Social isolation means “absence of complete or almost complete communication between an individual and society”. As discussed in the conversations of thalassemia patients, being sick is only part of the problem of these people, and perhaps more bitter than this problem is being ignored by family members and society by discriminating and creating obstacles to their presence in society.
Ethical considerations
Authors’ contributions
All authors contributed in designing, running, and writing all parts of the research.
Funding
No direct financial support was received from any institution or organization for
the preparation of this article.
Conflicts of interest
This article does not overlap with other published works of the authors.
Following the ethics of research
In this article, all rights related to research ethics have been respected.
Type of Study: orginal |
Received: 2023/06/11 | Accepted: 2024/07/22 | Published: 2024/10/5
Received: 2023/06/11 | Accepted: 2024/07/22 | Published: 2024/10/5
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