|Year : 2019 | Volume
| Issue : 2 | Page : 111-121
Patient Perspectives about Spirituality and Spiritual Care
Margaret I Fitch1, Ruth Bartlett2
1 Bloomberg Faculty of Nursing, University of Toronto, Ontario, Canada
2 Wycliffe College, University of Toronto, Ontario, Canada
|Date of Submission||14-Aug-2018|
|Date of Acceptance||17-Sep-2018|
|Date of Web Publication||31-Jan-2019|
Margaret I Fitch
Bloomberg Faculty of Nursing, University of Toronto, Ontario
Source of Support: None, Conflict of Interest: None
Objective: This study was undertaken to explore the perspectives regarding spirituality and spiritual care held by individuals with advanced disease. The aim was to gain a deeper understanding about their viewpoints surrounding spiritual care and the role of health-care professionals in providing such care. Methods: Sixteen individuals with advanced disease and a prognosis of <12 months underwent an in-depth interview. Transcripts were subjected to a qualitative descriptive analysis to identify salient content and themes. Results: Four overall themes were identified: Spirituality is personal, spiritual distress is about separation, spiritual care is about connecting, and conversations about spirituality must align with the patient's beliefs. Subthemes emphasized the individuality of spiritual expression, the potential for illness impacting spiritual beliefs, and the value of connections to one's spiritual community. Participants thought healthcare providers needed to be able to identify individuals who were experiencing a spiritual struggle, acknowledge the reality of that struggle, and connect the individual with the appropriate resource or person. Conclusions: Patients with advanced disease are likely to express their spirituality in unique ways. Being able to talk about their spiritual beliefs and doubts during illness without judgment was seen as a benefit to them. Healthcare providers ought to be able to identify those patients who require assistance in connecting to appropriate spiritual care resources.
Keywords: Advanced disease, patient perspectives, spiritual care, spirituality
|How to cite this article:|
Fitch MI, Bartlett R. Patient Perspectives about Spirituality and Spiritual Care. Asia Pac J Oncol Nurs 2019;6:111-21
| Introduction|| |
An individual facing advanced disease experiences more than a physical impact. There are social, psychological, spiritual, and practical consequences as well., One consequence that has received less attention relative to the others within health care is spirituality. However, over the past decade, there has been an increasing interest in spirituality as part of supportive care and quality of life priorities, especially for individuals living with advanced disease.,,, Providing spiritual care, or attending to the spiritual needs of patients, is now identified as a core domain in patient care by the World Health Organization, and guidelines and standards on palliative care emphasize the importance of incorporating spiritual care into daily practice.,,
Many studies have documented unmet spiritual needs and illustrated existential suffering, spiritual distress, and spiritual pain in patients with life-threatening illness.,,,,,,,, Harrison et al. reviewed 94 supportive care needs studies and reported between 14% and 54% of cancer patients indicated through survey responses that they had unmet spiritual needs. The spectrum of spirituality encompassed spiritual despair (alienation, loss of self, and dissonance), spiritual work (forgiveness, self-exploration, and search for balance) and spiritual well-being (connection, self-actualization, consonance). When unmet, spiritual needs can have a profound impact on symptoms, social relationships, quality of life, and well-being.,,,,,,,,,, In addition, spiritual concerns can influence decision-making about treatments, as well as coping and adjustment to illness.,,
Despite healthcare professionals acknowledging the importance of spirituality and of providing spiritual care,,, practice patterns vary in relation to engaging in spiritual care.,,,,, Front-line providers report they have difficulty identifying when a patient is experiencing spiritual distress, having relevant discussions about spiritual needs, and knowing when a referral to chaplaincy is appropriate.,,, Personal discomfort, lack of knowledge and skills in spiritual care, lack of role clarity and models of care, training and time, and ever-increasing demands of busy clinical environments have been cited as barriers to engaging in spiritual care.,,,
Concern about the variation in delivering spiritual care emerged in our clinical setting as part of implementing a person-centered approach to patient care. As a primary step before developing and refining services to address this concern, and in accordance with a person-centered approach, we undertook to explore the perspectives of individuals with advanced illness about spirituality and spiritual care. Ultimately, we hoped to gain a deeper understanding about their views surrounding spiritual care and the roles of health care providers within the context of their own conceptualization of spirituality and illness. Although investigations have focused on perspectives regarding spirituality,,, there remains little consensus on the definition of spirituality in illness,, and wide variation in how it is operationalized as spiritual care.,,,,, In addition, few studies describe patient perspectives about spiritual care itself.,,
| Methods|| |
The study utilized a qualitative descriptive design and was conducted at Sunnybrook Health Sciences Centre. Ethics approval was granted by the hospital's Research Ethics Review Board before beginning of data collection.
Eligibility and data collection
Patients with advanced disease and a prognosis of <12 months were eligible for inclusion. Individuals were recruited from the outpatient palliative care clinic, inpatient acute care wards, and the palliative care unit. The most responsible physician spoke to the patient initially about the study and for those who agreed, the research coordinator subsequently contacted the individual to fully explain the study and obtain consent.
Consenting individuals engaged in an in-depth semi-structured interview, in person or over the telephone, conducted by an interviewer with extensive experience in qualitative research. All interviews were audio-taped and transcribed verbatim.
The interview guide was designed for the purposes of the study by a group of physicians (palliative care expert, psycho-oncology expert), hospital chaplains (2), social workers (2), and nurse researcher. All had expertise in the area of spiritual care for individuals with a life-threatening illness. Questions were crafted to gather patient perspectives about spirituality, experiences with spiritual distress and spiritual care, as well as to provide insight regarding how spiritual distress can be identified and acknowledged by front-line staff members. The guide was reviewed after the first several interviews to ensure the questions were clear for participants; no changes were made to the questions.
The transcripts were subjected to a qualitative descriptive analysis. Members of the research team individually read through several transcripts making marginal notes about the content. Through subsequent discussion about the content, the team members reached agreement regarding a list of topics or content categories for coding (i.e., coding framework). The transcripts were then entered into NVivo9 (QSR International) software and coded by one individual using the agreed-upon coding framework. The content in each of the coded categories was subsequently reviewed individually by team members to identify key ideas. Subsequent discussion together about the key ideas resulted in the identification and agreement regarding the final themes reported below.
| Results|| |
Selected demographic information
A total of 23 individuals were approached to participate in the study, of whom 16 underwent an interview. Three declined to participate, two became too unwell, and two died before the interview. All participants were diagnosed with a significant, advanced illness, and a prognosis of <12 months by the palliative care consultant providing regular care to the individual. Participants ranged in age from 58 to 93 and the majority were female. Twelve individuals indicated a Christian background (6 = Roman Catholic, 5 = Protestant, and 1 = Jehovah's Witness), two indicated new age/mysticism associations, one indicated following Buddhism, and one indicated being a non-believer.
Four themes emerged from the analysis of the data. Each will be described below and illustrative quotations for each can be found in [Table 1].
Theme: Spirituality is personal
Participants spoke about spirituality in a range of individual ways illustrating their unique perspectives by describing their personal values, beliefs and faith. All but one (i.e., nonbeliever), spoke clearly, and strongly about their beliefs associated with their respective religious communities and described how they engaged in their religious practices of prayer, meditation, reading of scriptures and other religious material, singing worship songs, and gathering with other members of their community for various events (i.e., services, prayer group, and Bible study). Most described a long-term commitment to their religion and beliefs, a sense of personal relationship, and how supportive it felt to be together with others who held the same beliefs.
In defining spirituality, these participants talked about having a personal connection or relationship. In the case of the Christians and Buddhist, the relationship was with a Higher Being (i.e., God, Buddha) while those who ascribed to a new age/mysticism philosophy spoke about a relationship with the world and environment. For all, the relationship provided an avenue through which they experienced comfort, strength, and hope, particularly in times of difficulty. Some spoke about not fearing death and being able to accept what was happening to them because of their personal relationship and set of beliefs. The two individuals who held new age/mysticism beliefs indicated they gained comfort through spending time in nature and with family.
Participants acknowledged a shift in their spiritual beliefs since their diagnosis and illness. Most had experienced a deepening or a strengthening of their faith and beliefs since they had been facing life-threatening illness and in many cases, an increase in certain practices (i.e., prayer, reading of scriptures). Some found they had become more aware of the world around them and focused on the present: “making sure I am fully here in this moment.” In addition, some participants found they wanted to focus on the positive and not dwell on negative things.
Theme: Spiritual distress is about separation
Participants hesitated in describing the idea of spiritual distress as they were more familiar with using the words spiritual doubts or struggle. Overall, participants talked about separation and disconnection as the primary experience of a spiritual struggle. To feel separated from one's relationship with God, separated from one's beliefs or practices related to those beliefs resulted in feelings of upset, despair, hopelessness, and loneliness. Participants spoke of people experiencing spiritual doubts feeling as though “no one can help me,” “an absence of anything positive,” “life is out of control and you can't do anything about it.” Individuals may be experiencing a loss of faith or a sense of disillusionment and doubt about their faith. Some talked about letting themselves drift and finding they feel far away from God and not where they are supposed to be. In essence, they are 'on the wrong path and feeling disconnected' from what had been grounding them. One individual thought “spiritual emptiness” would be a better term to use than “spiritual distress.”
Participants acknowledged they had experienced spiritual struggles during their illness. For most, the period of time they were initially facing the reality that something was wrong with their bodies but they did not know what was happening was a period of distress. Feeling uncertain about what was happening, not having information, and not being able to process what was going on created a sense of turmoil, upheaval, and panic: “everything is such a whirlwind.” Others talked about continually trying to deal with side effects, but feeling very low energy to do so, was overwhelming and brought about a sense of despair. Some talked about repeatedly asking themselves, “Why is this happening to me? Why now?,” but not having answers. Feeling there was no place or person to turn for answers was frightening and left a sense of despair. Finally, a few talked about experiencing a loss of their autonomy as disturbing.
Theme: Spiritual care is about connecting
Participants experienced difficulty describing the concept of spiritual care. For the most part, they initially talked about the support and comfort they felt through their relationship or connection with God or Buddha and “knowing what God wants you to do.” Some added that a visit by a priest or hospital chaplain was a type of spiritual care, especially when they prayed with the person, listened to them, or talked about what was happening to them and their beliefs. The idea of listening without judgment and being gentle was emphasized as being helpful to patients. In addition, visits with friends who share the same beliefs provided a sense of spiritual care.
Although participants struggled to find words to talk about spiritual care, common ideas emerged including “respecting you,” “people listening to you,” “encouraging you,” “taking your burden on themselves and helping to bear that burden,” “helping people find peace and strength in their lives,” and “sharing words of comfort when things are bad.” A few individuals spoke about the desirability of focusing on the positive and on things for which they were thankful. They did not want others to talk about things that were negative and would take away their energy or waste it. One participant expressed spiritual care as being able to talk about their spiritual struggle as it was “a bridge to help you feel not cut off.”
Theme: Conversations about spiritual needs must align with the patient's beliefs
Participants did not readily identify healthcare professionals as providers of spiritual care. However, when the question was posed, participants expressed viewpoints about how healthcare professionals ought to engage in conversations with patients about spiritual matters. They spoke about the importance of healthcare professionals understanding when they were upset, listening to their concerns without judgment, and not imposing their own beliefs on the patients. They wanted the healthcare professionals to respect and support the patients' own beliefs.
Participants thought patients ought to have the opportunity to talk about spiritual needs and had many ideas about how a healthcare provider would open such a conversation [Table 2]. For the most part, approaching the topic directly was not seen as helpful. One needed to be gentle, recognizing that talking about spirituality is personal. Once initiated, the conversation would likely take different pathways depending on how the individuals wanted to pursue the conversation. The healthcare professional's role, first and foremost, is to listen, to help the person explore what is upsetting them and to offer what can be done to help the situation. The important aspect is to align the conversation with the patient's beliefs and support them in those beliefs.
|Table 2: Advice from patients regarding conversations about spiritual needs|
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| Discussion|| |
This study was undertaken to explore perspectives about spirituality and spiritual care held by individuals with advanced illness. We hoped to gain insight into their views about the role of health care professionals in providing spiritual care. Although the participants had no difficulty talking about spirituality or what they thought constitutes a spiritual struggle, the notion of spiritual care presented some challenges for them to describe. Furthermore, they did not readily identify healthcare professionals as providers of spiritual care.
For the most part, the study participants included individuals who had a long commitment and participation within a religious community. They were able to state their spiritual beliefs, drawing on their unique understanding and ways of expressing them, and the importance of those beliefs for informing their daily lives. Spiritual beliefs were embedded in their lives and were clearly part of how they defined themselves and their reasons for feeling of hope and comfort. Their faith was evident in practices (e.g., prayer, scripture reading) and influenced their coping with advanced illness. Their faith clearly gave them strength to cope with what was happening to them.,
Nonetheless, despite their strong convictions, participants indicated experiencing upset and struggles in facing their diagnosis and advanced illness situation. Being able to express their concerns without being judged, talk with someone who truly understood their perspective, and have their doubts acknowledged were seen as beneficial to them. In some instances, participants had ready access to members of their spiritual community and were able to interact with them, while others did not, especially while in the hospital. Feeling “cut off” or isolated can clearly add to the burden, and suffering patients experience during illness., In addition, some individuals require help in recognizing that healthy expression of doubts can lead to strengthening of one's spiritual beliefs.
When confronting spiritual doubts or questions, especially while in a healthcare setting, a challenge for patients is knowing where they can turn for assistance. Those who have access to members of their own community may have a readily available resolution to their concerns. They may feel their own religious communities can fulfill their spiritual needs and do not see the hospital staff to have a role in this regard. But for those who do not have easy access to spiritual support or those who are distressed without recognition that the root of their concern may be a spiritual matter, the role of healthcare providers in offering assistance ought to be considered. Currently, there remains a lack of clear role expectations for healthcare providers regarding spiritual care.
Participants expressed the value of having their concerns acknowledged and having someone who would listen to them without judging. At the same time, they indicated the topic of spirituality was not one to be approached lightly, or in some instances, directly. It is a very personal topic, and individuals have varying degrees of comfort in talking about it. Many of the participants suggested starting the conversation about spiritual concerns with a focus on exploring general topics and allowing the person to reveal what was comfortable for them to discuss. Patients may require a signal or indication from the healthcare provider that it is acceptable to talk about spiritual topics with them. However, the healthcare provider needs to have the knowledge, skill, and comfort to have these conversations.
The deep exploration of existential subjects in a truly authentic manner demands a knowledgeable and skillful individual. Most healthcare professionals would not have this expertise nor do they possess a reasonable level of the comfort with the topic. In addition, such a conversation demands time, patience, and a willingness to be truly present with the individual through difficult personal explorations. The environment of a health care facility, with its focus on time efficiency and task completion, may or may not be conducive to such an exchange. Therefore, the needs of the patients may be best served if the frontline health care provider can recognize when the patient is distressed, isolate whether the issue is of a spiritual nature, and offer to connect the patient with the appropriate expert (i.e., hospital chaplain, patient's own religious leader, another nurse or staff member with similar beliefs) or service.
Implications for practice and research
The results of this study emphasize that the importance of acknowledging that individuals with advanced disease may have concerns that are of a spiritual nature and may be expressed in various ways. It is helpful to patients if frontline healthcare providers can recognize and acknowledge when an individual is struggling with spiritual doubts and orchestrate the necessary connections to resources for assistance. The resources could be an individual within the patient's religious community or one within the healthcare facility. This will require that the health care provider has the requisite knowledge, skill, and comfort level to engage in basic conversations with patients about spirituality. Ensuring staff have the requisite knowledge and comfort in this topic area and finding effective strategies for frontline staff to actually hold these conversations, given the busy nature of the practice environment, are important initiatives for future consideration.
This study focused primarily on individuals with a Christian affiliation and clearly articulated set of beliefs. Future research ought to engage other faith groups as well as non-Believers in similar explorations to uncover how they would approach the topic of spiritual care and the role of health care providers in this matter.
This work is part of a larger project related to identifying screening questions about spiritual distress for patients with advanced disease undertaken at Sunnybrook Health Sciences Centre in Toronto, Ontario.
Financial support and sponsorship
Funding for the project was provided through the Practice-based Research Award Fund of Sunnybrook Health Sciences Centre.
Conflicts of interest
There are no conflicts of interest.
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| Authors|| |
Margaret I. Fitch
[Table 1], [Table 2]