Exploring the Role of Spirituality in Emotional Symptoms Experienced by Cardiac Transplant Patients

Background: Approximately 6.5 million individuals in the United States have heart failure, and about 50% of people diagnosed will die within 5 years of their diagnosis (Benjamin et al., 2018). Heart failure is the primary indication for a cardiac transplant (Alraies & Eckman, 2014). Even though cardiac transplant is an established treatment to prolong the lives of heart failure patients, the demand for hearts is much greater than the supply (McKenna & Clark, 2015; Muhandiramge et al., 2015). Waiting on the transplant list for an extended period of time has adverse effects on both the physical and emotional health of heart failure patients (Mentz et al., 2014). Patients experience fatigue and dyspnea, and significant emotional symptoms, such as anxiety, depression, hopelessness, uncertainty, and/or inability to cope related to their illness. Such emotional symptoms are often more detrimental to their overall health (Sokoreli et al., 2015). In heart failure patients, the current focus of treatment is on physical symptoms (Mentz et al., 2014). One intervention that could provide emotional support for these patients is spirituality. Spirituality contributes significantly to how patients experience and cope with emotional symptoms, and could be essential in bettering their care (Reinert & Koenig, 2013). Spirituality is defined as the aspect of humanity that refers to the way individuals seek and express meaning purpose, and transcendence, and the way they experience connectedness to self, to others, to family, to society, to nature and/or to the significant or sacred (National Consensus Project for Quality Palliative Care, 2018). It is common for patients who face chronic, life- limiting illnesses to face increased episodes of spiritual distress because they are experiencing lower quality of life, and dissatisfaction with their current health status (Selman et al., 2017). Thus, evaluating how spirituality relates to emotional symptoms experienced in heart failure patients on the cardiac transplant list is imperative to see how quality of life for these patients could be improved.

Purpose: The purpose of this study was to explore the role of spirituality relating to emotional symptoms experienced in heart failure patients awaiting cardiac transplant experience during the wait time for a new heart.

Methods: This study was a retrospective review of data. The primary study utilized a qualitative descriptive approach with content analysis of semi- structured patient interviews. Patients interviewed were recruited via blogs and internet support groups for heart failure and cardiac transplant patients. Interview questions were developed using Kolcaba’s Comfort Theory as a framework (Krinsky, Murillo, & Johnson, 2014; Kolcaba, 1994). Interview questions examined in this study included: “What types of emotional symptoms did/do you experience while awaiting transplant?”, “Can you tell me what gives/gave your life meaning while awaiting transplant?”, and “What does spirituality mean to you? How did/does your own spiritualty impact you while awaiting transplant?” Data from the interviews was recorded into a chart for initial exploration and identification of major themes. Following preliminary examination of the data, general themes about spirituality, meaning of life and emotional symptoms were compared across all interviews. From these themes, common relationships were identified between spiritualty and emotional symptoms present in the patients interviewed.

Results: Fourteen patient interviews were used in this study. Analysis is currently in process. Preliminary common themes from the interviews show relationships between spirituality and emotional symptoms experienced in cardiac transplant patients. One relationship identified is the desire to maintain normalcy. Normalcy was achieved by many patients through changing their environment, returning to work, and through person centered care. One patient who was able to return to work during the wait for her transplant said, “It keeps me – my mind off of things. Makes me feel normal, makes me feel like I have a purpose.” Thus, maintaining normalcy was regarded by the patients as an essential component of meaning of life and spirituality through connectedness to the moment and others, and in helping with the burden of emotional symptoms. A second relationship between emotional symptoms and spiritualty is being able to hear success stories from other patients. One patient reflected on his feelings after hearing stories from others and stated, “By seeing that it was them, you’re happy for them and then it reminds you that the organs do come. You just gotta [sic] stay strong and eventually one will be there for you.” Hence, learning about the success of others helped facilitate connectedness to others, as well as allowed the patients to self- reflect on their own personal experiences to find further meaning in their lives and decrease their emotional distress. A final relationship noted is that when religion and spirituality are looked at as independent entities, patients were able to feel more connected to their experience and felt a decrease in emotional symptoms. To further expand on this theme, one patient who identified as having no religion stated, “They had a couple of chaplains [in the hospital] and some of my best conversations were with chaplains. Not in a religious context, but just more of a holistic context, I guess… It was nice, as long as I could talk to someone who was part of the process but not part of the critical medical part of it… Just knowing she was there was nice” Thus, the use of a chaplain for all patients as a non- medical support system, regardless of religion, is useful to promote holistic care, and gives patients resources for learning about how to give their transplant experience meaning in their lives.

Discussion: Preliminary analysis has identified many emotional symptoms patients faced while waiting for a cardiac transplant. In exploring spirituality and meaning of life in relation to these emotional symptoms, three themes were identified. Once data analysis is complete, recommendations will be made for how health care providers can use these themes to increase awareness in current practice. In addition, these themes should be further explored.

Conclusion: Results of this study can be additionally used to guide quantitative research that would assess the impact of spiritual interventions on patients’ emotional symptom burden.