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Impact of Organ Donation in Spanish Families: Phenomenological Approach Through Relatives' Lived Experiences
Impact of Organ Donation in Spanish Families: Phenomenological Approach Through Relatives’ Lived Experiences P. Gironésa,*, M. Lillo Crespob, and J.M. Dominguez Santamariab a Hospital Universitari Politécnic La Fe, Valencia, Spain; and bFaculty of Health Sciences, Nursing Department, University of Alicante, Alicante, Spain
ABSTRACT Introduction and Purpose. This study explores the family experience when they are told that their recently deceased relative is in a potential position for organ donation, as well as the connotations that develop from that situation and how those nuances have lasted since then for family members. In Spain, and especially in Valencian region (where this study took place), one of the most productive counties for organ donation nationwide, the family interview is considered to be one of the most important tools that transplant coordinators can use to improve and succeed through the process of a potential organ donation. Methodology and Data Analysis. This is a qualitative study based on a phenomenological approach using Giorgi’s method for data analysis. Members of 11 families who donated their deceased relatives’ organs in La Fe Hospital, Valencia, Spain, from 2009 to 2011, participated through in-depth interviews after signing informed consent agreements. Discussion. Experiences described have shown how the relatives’ overview has been affected by the situation in a way that is very different from the professional staff’s view of reality. The difference in perspectives creates a barrier which can make the professional team less effective in understanding family interests to create a helpful and successful relationship for organ donation. Understanding the experiences of the families involved can help healthcare providers to conduct a more supportive family interview when the topic is organ donation.
T
HIS study explores the family experience when they are told that their recently deceased relative is in a potential position for organ donation, as well as the connotations that develop from that situation and how those nuances have lasted since then for family members. The research team explored family feelings, emotions, and needs to discover what happens when a deceased patient’s family or other social support group is told that their relative is a potential organ donor, specifically in a country such as Spain. In Spain, and especially in the Valencian Region (where this study took place), considered to be one of the most productive counties for organ donation nationwide, the family interview is considered to be one of the most important tools that transplant coordinators can use to improve and succeed through the process of potential organ donation. Some of the core values that should be expressed in a family interview if it is to be an important step toward successful organ donation in Spain are that (a) organ donation is an opportunity for members of populations and communities to
0041-1345/15 http://dx.doi.org/10.1016/j.transproceed.2015.01.001
4
be generous after their physical death, and (b) organ donors often represent the one and only chance for many other patients to survive and/or have substantial improvement in their quality of life. During the interview, families are usually asked in the Spanish clinical contexts to remember what the opinion and perception of their deceased relative was concerning organ donation. The perspective of the now deceased patient should be explored from a qualitative perspective to develop new professional strategies to succeed in the organ donation process. In particular Spain, it is difficult for relatives of recently deceased patients to recall the intent of their loved one, consider organ donation, and to accept their relative’s death. According to Merchant [1], it is said that the more time they Supported by the Society Spanish of Transplant. *Address correspondence to Guillen Gironés, Hospital Universitari Politécnic La Fe, c/BIAR, 6-17a, 46015, Valencia, Spain. E-mail: [email protected] ª 2015 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
Transplantation Proceedings, 47, 4e6 (2015)
IMPACT OF ORGAN DONATION IN SPAIN
5
have to think about the organ donation, the more opportunities they have to accept it. Members of the Spanish population are supposed to be willing to donate organs unless they had previously expressed (in an oral or written way) their desire against it (based on Law 30-1979 for Organ Transplantation and Extraction in the Real Decreto 1723/2012). Finally, is the donor’s family who has the responsibility to express the donor’s wishes [2]; therefore, family authorization is legally necessary before the donation process can begin. Nevertheless, it has been proven that the dramatic circumstances surrounding the decision to donate are not the best ones in which to make a fair decision [3], and sometimes negative feelings may last for a long period after the decision of organ donation. METHOD This phenomenological study approach was conducted with 11 voluntary adult relatives. The verbatim transcripts of these interviews were analyzed using Giorgi’s phenomenological method [4,5] for qualitative data analysis. One representative member of the 11 families who was present at that crucial moment of organ donation in La Fe Hospital, Valencia City, Spain, from 2009 to 2011, participated through in-depth, open interviews conducted in 2013 (at least 2 years after the organ donation process had occurred) after signing informed consent agreements [6,7] for audiotape recording. Interviews lasted 1 hour in all cases and the context chosen for interviews to take place was determined by participants as researchers wanted them to feel comfortable. According to Giorgi’s phenomenological perspective [8], researchers are encouraged to “bracket” their own assumptions pertaining to the phenomenon in question by refraining from positing a static sense of objective reality for oneself and the participants whose experiences are being studied. This allows the researchers to attend to the descriptions of the participants without forcing the meaning of the descriptive units into predefined categories. Through a sort of empathic immersion with the subjects and their descriptions, the researchers get a sense of the ways that the experiences expressed by the participants were actually lived, which is in turn described.
DATA ANALYSIS
Giorgi’s method of phenomenological analysis is a clearcut process; it gave a structure to the analyses and
justified the decisions made while analyzing the data. A phenomenological study approach of this kind encourages health care workers in the field of organ donation to focus on patients’ experiences. The results reflect a careful description of precisely the features of the experienced phenomenon as they present themselves to the consciousness of the researcher. Each description given by the 11 participants was first read through in its entirety to get a better sense of the entire situation in which the experiences occurred. Then each description was attended to individually as the researcher went through and marked off different units of meaning within the data to make the descriptions more manageable. After every single description was broken down into separate units, each unit was then transformed from the language through which it was given into “psychologically sensitive” meaning units. This process is meant to flush out the horizons of the lived meaning more fully to expand the possibilities inherent to the phenomenon being studied. Finally, after all the descriptions have undergone these steps, general psychological structures are sought. In this study approach, 387 basic units of meaning were summarized into 24 units of psychologically sensitive and essential meaning (Table 1). Those sensitive units suggest that families are in shock after their relative’s death (corresponding to 11 sensitive meaning units) and try to separate it from the organ donation process (13 sensitive meaning units). They are aware of their own mourning. Sometimes they change their own believes and even their death considerations from that crucial moment. Donation is sometimes a type of comfort as well as the “greeting card” that is usually sent to them after their relative’s death. Knowing that their relative’s organs work properly usually relieves them. Families are usually grateful particularly to the transplant coordinators’ sensitivities, although others are uncomfortable during the family interview as they do not perceive it as a personal and neutral process. Having lost a relative usually changes one’s vision about life and death as participants stated. Before accepting the death
Table 1. Twenty-four Sensitive Meaning Units According to Giorgi’s Qualitative Data Analysis Method Relative’s Death Shock Experienced by Family
Organ Donation Process Impact Experienced by Family
1. Family mourning 2. Collaboration (of family members) 3. Feelings (towards their deceased relative) 4. Memories (of their deceased relative) 5. Changes in life (from that moment on) 6. Death (and its meaning) 7. Acceptance (of their relative’s death) 8. Family needs (regarding the situation) 9. Social support (as family support) 10. Affection (towards their deceased relative) 11. Family (as the decision-making unity)
12. Avoidance attitude (towards organ donation) 13. Premonition (towards organ donation) 14. Learning process (regarding donation process itself) 15. Comfort (according to the decision itself, the professional attitude and the process of organ donation) 16. Counseling (from the professional team) 17. Healthcare system (as the context for organ donation) 18. Consequences (of donation) 19. Future (according to the decision itself) 20. Receiver-patients (that will receive their relative’s organs) 21. Helping relationship (from the professional team) 22. Organ donation process (and its phases) 23. Gratitude (in donating) 24. Motivation (to donate)
6
GIRONÉS, LILLO CRESPO, AND DOMINGUEZ SANTAMARIA
in a natural way there is a desire to meet with the deceased relative, disregarding the meaning of life: E-4: “There’ll be one day that he will touch me again.because I will go through the same way.and it won’t be a problem for me. That is the conclusion that I got to.Before I used to think other way, and now life is no longer the same.” Other answers are related to their relative’s organs working inside the receiver-patients’ bodies: E-11: “His eyes looking at.and.his heart has to start beating, for me that is very nice. Because it has been a bad experience, but it is a sort of rewarding at the same time.”
that those who decided not to donate organs did not want to share their experience. Experiences described have shown how the relatives’ overview has been affected by the situation in a way that is very different from the professional staff’s view of reality. The difference in perspectives creates a barrier which can make the professional team less effective in understanding family interests to create a helpful and successful relationship for organ donation. Understanding the experiences of the families involved can help healthcare providers to conduct a more supportive family interview when the topic is organ donation.
REFERENCES DISCUSSION
The phenomenological study approach and Giorgi’s method of analysis are applicable while investigating the organ donation family’s lived experiences, and they give new knowledge of the experiences of relatives and new views of how to meet their needs and succeed in organ donation interviews, especially for Spanish contexts in which the family is still considered as a social unity and social support is still understood as family support itself. One of the most important limitations was related to the sample selection. In this study, it is proven that people who have decided to share their experience about donation have a positive memory of their deceased relative. That is why it would be really interesting to compare it with those who have not kept such a good memory, although ethical issues should be explored first and according to the culture. Moreover, it would be really interesting to discover what organ donation means for families themselves apart from their deceased relative’s opinion. Nevertheless, it is pertinent to remark
[1] Merchant SJ, Yoshida EM, Lee TK, Richardson P, Karlsbjerg KM, Cheung E. Exploring the psychological effects of deceased organ donation on the families of the organ donors. Clin Transplant 2008;22(3):341e7. [2] Angoitia V. Removal and Transplantation of Organs and Human Tissue Legal Issues. Legal monographs. Madrid: Marcial Pons Ed. Legal and Social; 1996. [3] Gómez P, de Santiago C. The family interview. Techniques and results. In: Matesanz R, coordinator. Coordination and Transplant. The Spanish model. 2nd ed. Madrid, Spain: Aula Médica; 2008:105e19. [4] Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenolog Psychol 1997;28(2):235e60. [5] Giorgi A. A phenomenological perspective on certain qualitative research methods. J Phenomenolog Psychol 1994;25(2): 190e220. [6] Olabuénaga Ruíz JI. Interview in Qualitative Research Methodology. 2a ed. Bilbao: University of Deusto; 1999. [7] Valles M. Qualitative social research techniques. Methodological reflection and professional practice. Madrid, Spain: Synthesis Sociology; 2007. p. 184. 220. [8] Giorgi A. The Descriptive Phenomenological Method in Psychology. Pittsburgh, PA: Duquesne University Press; 2009.
ABSTRACT Introduction and Purpose. This study explores the family experience when they are told that their recently deceased relative is in a potential position for organ donation, as well as the connotations that develop from that situation and how those nuances have lasted since then for family members. In Spain, and especially in Valencian region (where this study took place), one of the most productive counties for organ donation nationwide, the family interview is considered to be one of the most important tools that transplant coordinators can use to improve and succeed through the process of a potential organ donation. Methodology and Data Analysis. This is a qualitative study based on a phenomenological approach using Giorgi’s method for data analysis. Members of 11 families who donated their deceased relatives’ organs in La Fe Hospital, Valencia, Spain, from 2009 to 2011, participated through in-depth interviews after signing informed consent agreements. Discussion. Experiences described have shown how the relatives’ overview has been affected by the situation in a way that is very different from the professional staff’s view of reality. The difference in perspectives creates a barrier which can make the professional team less effective in understanding family interests to create a helpful and successful relationship for organ donation. Understanding the experiences of the families involved can help healthcare providers to conduct a more supportive family interview when the topic is organ donation.
T
HIS study explores the family experience when they are told that their recently deceased relative is in a potential position for organ donation, as well as the connotations that develop from that situation and how those nuances have lasted since then for family members. The research team explored family feelings, emotions, and needs to discover what happens when a deceased patient’s family or other social support group is told that their relative is a potential organ donor, specifically in a country such as Spain. In Spain, and especially in the Valencian Region (where this study took place), considered to be one of the most productive counties for organ donation nationwide, the family interview is considered to be one of the most important tools that transplant coordinators can use to improve and succeed through the process of potential organ donation. Some of the core values that should be expressed in a family interview if it is to be an important step toward successful organ donation in Spain are that (a) organ donation is an opportunity for members of populations and communities to
0041-1345/15 http://dx.doi.org/10.1016/j.transproceed.2015.01.001
4
be generous after their physical death, and (b) organ donors often represent the one and only chance for many other patients to survive and/or have substantial improvement in their quality of life. During the interview, families are usually asked in the Spanish clinical contexts to remember what the opinion and perception of their deceased relative was concerning organ donation. The perspective of the now deceased patient should be explored from a qualitative perspective to develop new professional strategies to succeed in the organ donation process. In particular Spain, it is difficult for relatives of recently deceased patients to recall the intent of their loved one, consider organ donation, and to accept their relative’s death. According to Merchant [1], it is said that the more time they Supported by the Society Spanish of Transplant. *Address correspondence to Guillen Gironés, Hospital Universitari Politécnic La Fe, c/BIAR, 6-17a, 46015, Valencia, Spain. E-mail: [email protected] ª 2015 by Elsevier Inc. All rights reserved. 360 Park Avenue South, New York, NY 10010-1710
Transplantation Proceedings, 47, 4e6 (2015)
IMPACT OF ORGAN DONATION IN SPAIN
5
have to think about the organ donation, the more opportunities they have to accept it. Members of the Spanish population are supposed to be willing to donate organs unless they had previously expressed (in an oral or written way) their desire against it (based on Law 30-1979 for Organ Transplantation and Extraction in the Real Decreto 1723/2012). Finally, is the donor’s family who has the responsibility to express the donor’s wishes [2]; therefore, family authorization is legally necessary before the donation process can begin. Nevertheless, it has been proven that the dramatic circumstances surrounding the decision to donate are not the best ones in which to make a fair decision [3], and sometimes negative feelings may last for a long period after the decision of organ donation. METHOD This phenomenological study approach was conducted with 11 voluntary adult relatives. The verbatim transcripts of these interviews were analyzed using Giorgi’s phenomenological method [4,5] for qualitative data analysis. One representative member of the 11 families who was present at that crucial moment of organ donation in La Fe Hospital, Valencia City, Spain, from 2009 to 2011, participated through in-depth, open interviews conducted in 2013 (at least 2 years after the organ donation process had occurred) after signing informed consent agreements [6,7] for audiotape recording. Interviews lasted 1 hour in all cases and the context chosen for interviews to take place was determined by participants as researchers wanted them to feel comfortable. According to Giorgi’s phenomenological perspective [8], researchers are encouraged to “bracket” their own assumptions pertaining to the phenomenon in question by refraining from positing a static sense of objective reality for oneself and the participants whose experiences are being studied. This allows the researchers to attend to the descriptions of the participants without forcing the meaning of the descriptive units into predefined categories. Through a sort of empathic immersion with the subjects and their descriptions, the researchers get a sense of the ways that the experiences expressed by the participants were actually lived, which is in turn described.
DATA ANALYSIS
Giorgi’s method of phenomenological analysis is a clearcut process; it gave a structure to the analyses and
justified the decisions made while analyzing the data. A phenomenological study approach of this kind encourages health care workers in the field of organ donation to focus on patients’ experiences. The results reflect a careful description of precisely the features of the experienced phenomenon as they present themselves to the consciousness of the researcher. Each description given by the 11 participants was first read through in its entirety to get a better sense of the entire situation in which the experiences occurred. Then each description was attended to individually as the researcher went through and marked off different units of meaning within the data to make the descriptions more manageable. After every single description was broken down into separate units, each unit was then transformed from the language through which it was given into “psychologically sensitive” meaning units. This process is meant to flush out the horizons of the lived meaning more fully to expand the possibilities inherent to the phenomenon being studied. Finally, after all the descriptions have undergone these steps, general psychological structures are sought. In this study approach, 387 basic units of meaning were summarized into 24 units of psychologically sensitive and essential meaning (Table 1). Those sensitive units suggest that families are in shock after their relative’s death (corresponding to 11 sensitive meaning units) and try to separate it from the organ donation process (13 sensitive meaning units). They are aware of their own mourning. Sometimes they change their own believes and even their death considerations from that crucial moment. Donation is sometimes a type of comfort as well as the “greeting card” that is usually sent to them after their relative’s death. Knowing that their relative’s organs work properly usually relieves them. Families are usually grateful particularly to the transplant coordinators’ sensitivities, although others are uncomfortable during the family interview as they do not perceive it as a personal and neutral process. Having lost a relative usually changes one’s vision about life and death as participants stated. Before accepting the death
Table 1. Twenty-four Sensitive Meaning Units According to Giorgi’s Qualitative Data Analysis Method Relative’s Death Shock Experienced by Family
Organ Donation Process Impact Experienced by Family
1. Family mourning 2. Collaboration (of family members) 3. Feelings (towards their deceased relative) 4. Memories (of their deceased relative) 5. Changes in life (from that moment on) 6. Death (and its meaning) 7. Acceptance (of their relative’s death) 8. Family needs (regarding the situation) 9. Social support (as family support) 10. Affection (towards their deceased relative) 11. Family (as the decision-making unity)
12. Avoidance attitude (towards organ donation) 13. Premonition (towards organ donation) 14. Learning process (regarding donation process itself) 15. Comfort (according to the decision itself, the professional attitude and the process of organ donation) 16. Counseling (from the professional team) 17. Healthcare system (as the context for organ donation) 18. Consequences (of donation) 19. Future (according to the decision itself) 20. Receiver-patients (that will receive their relative’s organs) 21. Helping relationship (from the professional team) 22. Organ donation process (and its phases) 23. Gratitude (in donating) 24. Motivation (to donate)
6
GIRONÉS, LILLO CRESPO, AND DOMINGUEZ SANTAMARIA
in a natural way there is a desire to meet with the deceased relative, disregarding the meaning of life: E-4: “There’ll be one day that he will touch me again.because I will go through the same way.and it won’t be a problem for me. That is the conclusion that I got to.Before I used to think other way, and now life is no longer the same.” Other answers are related to their relative’s organs working inside the receiver-patients’ bodies: E-11: “His eyes looking at.and.his heart has to start beating, for me that is very nice. Because it has been a bad experience, but it is a sort of rewarding at the same time.”
that those who decided not to donate organs did not want to share their experience. Experiences described have shown how the relatives’ overview has been affected by the situation in a way that is very different from the professional staff’s view of reality. The difference in perspectives creates a barrier which can make the professional team less effective in understanding family interests to create a helpful and successful relationship for organ donation. Understanding the experiences of the families involved can help healthcare providers to conduct a more supportive family interview when the topic is organ donation.
REFERENCES DISCUSSION
The phenomenological study approach and Giorgi’s method of analysis are applicable while investigating the organ donation family’s lived experiences, and they give new knowledge of the experiences of relatives and new views of how to meet their needs and succeed in organ donation interviews, especially for Spanish contexts in which the family is still considered as a social unity and social support is still understood as family support itself. One of the most important limitations was related to the sample selection. In this study, it is proven that people who have decided to share their experience about donation have a positive memory of their deceased relative. That is why it would be really interesting to compare it with those who have not kept such a good memory, although ethical issues should be explored first and according to the culture. Moreover, it would be really interesting to discover what organ donation means for families themselves apart from their deceased relative’s opinion. Nevertheless, it is pertinent to remark
[1] Merchant SJ, Yoshida EM, Lee TK, Richardson P, Karlsbjerg KM, Cheung E. Exploring the psychological effects of deceased organ donation on the families of the organ donors. Clin Transplant 2008;22(3):341e7. [2] Angoitia V. Removal and Transplantation of Organs and Human Tissue Legal Issues. Legal monographs. Madrid: Marcial Pons Ed. Legal and Social; 1996. [3] Gómez P, de Santiago C. The family interview. Techniques and results. In: Matesanz R, coordinator. Coordination and Transplant. The Spanish model. 2nd ed. Madrid, Spain: Aula Médica; 2008:105e19. [4] Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenolog Psychol 1997;28(2):235e60. [5] Giorgi A. A phenomenological perspective on certain qualitative research methods. J Phenomenolog Psychol 1994;25(2): 190e220. [6] Olabuénaga Ruíz JI. Interview in Qualitative Research Methodology. 2a ed. Bilbao: University of Deusto; 1999. [7] Valles M. Qualitative social research techniques. Methodological reflection and professional practice. Madrid, Spain: Synthesis Sociology; 2007. p. 184. 220. [8] Giorgi A. The Descriptive Phenomenological Method in Psychology. Pittsburgh, PA: Duquesne University Press; 2009.