263.2
Heart Transplant Recipient Identities: Between ‘a Patient' and ‘an Individual'
HTRs need lifelong medical treatment to control their immune systems. After overcoming heart disease through transplant operation, HTRs tend to think of themselves as individuals, while doctors see them as patients. Therefore, the experience associated with lifelong chronic conditions presents a difficult challenge for HTRs regarding their identity.
Three key theoretical concepts can inform the subjective experience of the lifelong chronic conditions: biographical disruption, narrative-based medicine and identity reconstruction. These concepts address issues of stigmatization of chronic conditions, loss of self, and reconstruction of identity following a heart transplant.
The participants for this study were recruited through ‘snowball’ sampling. Inclusion criteria required individuals age 20 and over who had undergone a heart transplant operation more than one year before the time of the study. Nineteen Japanese HTRs were interviewed by using semi-structured face-to-face interview techniques. All interviews were recorded and transcribed into a simple text. Interview data was thematically analysed.
The results of this study show that HTRs do not simply face an issue of ‘loss of self’, but reconstruct identities between ‘a patient’ and ‘an individual’ through experiences of stigma. HTRs’ identity reconstruction process is primarily influenced by the location of the surgery, its duration, and the presence or lack of fund-raising support from the public. Depending on these conditions, recipients tend to experience stigma, which can be categorized as ‘enacted stigma’ or ‘felt stigma’. Their stigma experiences are attributed to their relationships with doctors, family, friends, and the public. HTRs tend to experience ‘felt stigma’ than ‘enacted stigma’. This indicates that HTRs’ distress may be internalised; apart from the medical support of immune control, they may not receive enough support.