Transforming self- the experience of living with another's heart: A systematic review of qualitative evidence on adult heart transplantation

Review question/objective The objective of this review is to identify the meaningfulness of adult life experiences after heart transplantation. The following questions will guide and direct the review: 1. How is a heart recipient's sense of self and body image altered after a heart transplant? 2. How do heart recipients cope with the loss of their own heart and how do they reach acceptance of their donor heart? Background Forty-five years have passed since the South African cardiologist Dr. Christian Barnard and his team transplanted the first human heart on December 3, 1967 into 53-year-old recipient Louis Washkansky. Mr. Washkansky's miraculous survival caught the attention of the world and he lived in the media spotlight with his new heart until succumbing to pneumonia 18 days later.1 Today, heart transplantation is a common intervention for end-stage heart failure offering recipients a second chance for life. By mid-2009, 88,736 heart transplants were reported worldwide, with 3,284 heart transplants performed in the one-year period from 2008 to 2009.2 In Canada, 141 adults received donated hearts in 2010.3 Improvements in medical care and immunosuppressive therapy have vastly increased the mean survival rate to over 80% in the first year with a conservative annual mortality rate of 4%.1 However, the fact that 40% of patients are hospitalized in their first post-transplant year for rejection, infection and other causes1 is indicative of the multiple stresses faced by these patients as they adapt to their new hearts. Throughout history the heart has symbolized the core of self, being synonymous with the powerful emotions of love and passion. The perception of the heart as harboring emotions such as courage and bravery or conversely meanness and hatred is reflected in our language and the many phrases we use daily such as warm hearted, cold hearted, big hearted, sweetheart, heart-breaker, mean-hearted and heartfelt. A leading cardiovascular surgeon and TV celebrity Dr. Oz suggests the heart consists of physical, emotional, psychological and spiritual components as he states, “When the emotional and spiritual heart begins to open, the physical heart often follows.”4(p.xii) This symbolism deeply embedded in culture and society naturally evokes thoughts and questions of how a transplant recipient adapts to receiving the heart of another. Claire Sylvia5 in her memoir A Change of Heart offered public insight into her life as the first heart-lung transplant in New England. She stated, “A transplant is not only a transformation of your identity; for a while it becomes your identity.”5(p.164) French philosopher and heart recipient Jean Luc Nancy describes his personal struggle of assimilating a new heart into his sense of self in his recent short story “L'Intrus.”6 Nancy considers this new organ as the Intruder testifying, “the stranger's coming will not cease being a disturbance and perturbation of intimacy.”6(p.2) He considers the transplant a matter of “metaphysical adventure,”6(p.3) “where life connects with death, where the incommunicable communicates.”6(p.8) Nancy alludes to a power struggle between the organ and the recipient's sense of self, and life-long repercussions of living with the complications and effects of the transplant.6 These personal narratives suggest the “gift of life” may have serious consequences to the recipient's sense of self. A growing body of literature suggests the adjustments made by a recipient of a donor heart may possibly include aspects such as body image and personality as well as those expected in the physical domain.7, 8, 9, 10, 11, 12, 13, 14, 15, 16 Furthermore, although the physical progression to an active lifestyle post-transplant has been addressed, the mounting evidence of psychological deterioration from one to five years postoperatively has yet to be explored and clearly understood.17 Psychological distress has been associated with the physiological rejection following a heart transplant and psychological disorders have been found in 63% of patients.17 However, quantitative methods have been the dominant approach to the measurement of heart recipients' emotional and psychosocial vulnerability with more recent emphasis on quality of life. Consequently, the question of why heart recipients suffer such emotional distress remains unanswered. Moving away from the depersonalized medical model that equates the heart as a mere pump or spare part, the anthropological and sociological literature suggests human tissues have components of “personhood and identity.”18(p.239) A qualitative meta-synthesis would offer insight into the phenomenon of living with another's heart related to body image, self-identity and their ability to cope with the transplantation. Hence, the intent of this review is to provide a voice from these compiled narratives to offer greater clarity and in turn, instigate comprehensive support for these patients as they adapt to their new hearts. Individuals recovering from these transplantations describe coming to terms with a new and sometimes different sense of self. We will use Margaret Newman's19 theoretical framework Health as Expanding Consciousness to clarify this experience and to examine the transplant recipient's evolving sense of self. Newman's theory will provide the framework with which to understand the individuals' experience through the recovery process as they come to terms with living with another's heart. Health as Expanding Consciousness Margaret Newman posited a theory of ‘health as expanding consciousness’ (HEC) (2008) which she clarified as “every person in every situation, no matter how disordered and hopeless it may seem, is part of a process of expanding consciousness - a process of becoming more of oneself, of finding greater meaning in life, and of reaching new heights of connectedness with other people and the world.”19(p.6) Health and illness represent an expansion of consciousness through evolving patterns of environmental interactions - connectedness with individuals, families and communities.20 Illness is viewed as an interruption in pattern, moving from one pattern to another in this conscious transformation.19 Individuals adapting to or recovering from illness experience a movement away from old ways of coping that offered safety and comfort, towards new coping skills that lead to “possibilities of new patterns or interactions and relationships that are indicative of expanding consciousness and therefore increased health.”22(p.199) HEC Praxis and the heart transplant recipient HEC ('health as expanding consciousness') praxis utilizes empathy and meaning through reflection, pattern recognition and insight offering a transformation of self.23 Storytelling allows the patient opportunity to recall some of the most meaningful events in their lives. This narration allows practitioners a view of the individual through their choices and events and provides an opportunity to assist them restore their sense of self interrupted by illness and stress in the heart transplantation process.19 Forced to face their own mortality heart recipients are traumatized as they walk a tight rope teetering on the edge of life and death. According to Pharris this trauma “creates a distorted self-image… like a circus mirror image where negatives seem very large and positives seem very small. The HEC nurse-patient relationship moves through that distorted image to a clear view of the underlying pattern.”19(p.101) Here underlies the premise for this meta-synthesis - the search for the essence of living with another's heart and their unfolding sense of self, according to the only expert - the heart transplant recipient. A preliminary search of Cochrane Database of Systematic Reviews, Joanna Briggs Institute Library of systematic reviews, Medline, CINAHL, PSYCHINFO and PROSPERO has been done and no systematic reviews were located on this topic. Inclusion criteria Types of participants This review will consider studies that include individuals 18 years of age and older who have received a heart or heart-lung transplant or re-transplant Phenomena of interest This review will consider studies that investigate the individual's sense of self, the experience of transformation and adjustment following the loss of their own heart and the receiving of a new heart or heart and lungs. The context of this review is the community of those individuals living with another's heart following heart transplantation Types of studies This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. No date limitation will be imposed upon the search strategies. The databases to be searched include: MEDLINE, CINAHL, PsychInfo, EMBASE, AMED, Google Scholar, Scirus and MEDNAR Search of unpublished literature will include: Dissertation Abstracts, Sociological Abstracts and Conference Proceedings. The keywords to be used will include, but not be limited to: heart transplantation, psychosocial adaptation/coping, adults and qualitative research. Assessment of methodological quality Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Data collection Data will be extracted from papers included in the review using the standardised data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Qualitative research findings will, where possible be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorising these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesised findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. Newman's theory of health as expanding consciousness will provide the framework with which to understand the individuals' experience through the recovery process as they come to terms with living with another's heart. Conflicts of interest None

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