Understanding spirituality from the perspectives of Jordanian people diagnosed with end stage renal failure: a phenomenological study

Spirituality has been increasingly acknowledged in nursing literature as an important element of holistic care provision. The literature to date has investigated the meaning of spirituality in Western cultures, predominantly through positivist methodologies. Spirituality in Middle Eastern countries remains under-researched, and this study aims to address this gap and to better understand this concept. The main aim was to understand and interpret patients’ perceptions, experiences, beliefs and practices associated with spirituality by exploring how spirituality is manifest in the lives of Jordanian End Stage Renal Failure (ESRF) patients. A hermeneutic phenomenological approach was adopted informed by the philosophy of Martin Heidegger (Heidegger, 1962). Participants (n=27) were recruited from four different dialysis units: in a public hospital, a private hospital, an educational hospital and a refugees’ hospital in Jordan. Data was collected through in-depth unstructured interviews. Analysis was guided by the tenets of hermeneutic phenomenology, namely: gaining an immediate sense of what was said both during and after each interview, transcribing data verbatim, translating interviews into the English language, intensive reading and re-reading, seeking meaning units by line-to-line coding, developing situated structures (how spirituality was manifest in each text) and developing a general structure from the individual situated structures (how the phenomenon ‘spirituality’ comes into being). The findings uncovered the phenomenon of spirituality and how the Jordanian ESRF patients experienced it during their illness. The nature of this phenomenon appeared to be complex and multifaceted. The three superordinate themes that emerged from analysis and interpretation of the participants’ accounts clustered around Religion, Relationships and Desperation. The study findings show how language, religion and culture were important elements and cannot be ignored in understanding Jordanian ESRF spirituality. The findings reveal that cultural issues such as losing employability, social stigma, social isolation and being tagged negatively are results of suffering from ESRF and are related to the meaningful way in which Jordanian ESRF patients viewed their spirituality. This has important implications for health care professionals. Should they use spirituality in care, there is a need to address wider issues such as stigma that patients face in society which impacts negatively upon individuals’ spirituality. In addition, findings show a specific and crucial characteristic of spirituality was the conflict between acceptance and rejection of the illness, and a sense of patients feeling that they are human and that life has not stopped. It is also evident that spirituality has played an important role in Nafs (inner self). It was part of the transforming process of Nafs from being Nafs Ammarah (evil inside) to Nafs Lawamah (blaming) to ultimately reach tranquil Nafs (peace and comfort). These were the core spiritual needs of participants, who expected that health care providers, family and community should have the essential skills to address these needs. The role of nurses within the dialysis team is essential in enhancing patients’ spirituality through spiritual and religious engagements. However, few participants highlighted the challenges in nurse-patient relationships, for example being in a busy unit, cultural boundaries, nurses’ characteristics, lack of knowledge, lack of awareness, unbalanced power in such relationships, lack of support, lack of respect, and a lack of attention and psychological care. All these elements may affect a nurse’s role in providing spiritual care. This research prompts us to look at the important role pre-dialysis nurses can play in improving and addressing spiritual needs, increasing awareness, and educating patients, family and the public about ESRF in its early stages. It also highlights the important role for religious leaders, Imams, and psychologists in enhancing an individual’s spirituality. The study argues that a “secular” concept of spirituality had no meaning for the participants in the study in the absence of religion. Spirituality is fundamentally part of religion and vice versa. The findings may have consequences for the use of spirituality in multi-cultural settings in Western countries. Additionally, findings highlight an important emphasis on the practice of spirituality, often underestimated in previous literature for Arab-Muslim Jordanian patients. The study findings contribute to the existing gap in knowledge regarding how Arab-Muslim Jordanian ESRF patients experience spirituality during their illness. It provides valuable insights into the importance of spirituality for this patient group and suggests how nurses, educators and policy makers might help address ESRF patients’ spirituality and spiritual needs in order to provide appropriate spiritual care. The study suggests the findings may have relevance beyond the Jordanian context in educating nurses on the importance of appreciating the religious dimension of spirituality. The study recommends further research in order to understand spirituality from the healthcare providers’ perspective.