Reprinted with permission from the publisher
Copyright 1993, Cerenex Pharmaceuticals
Quality of Life--A Nursing Challenge Volume 2, Issue 3
The importance of spiritual well-being from a therapeutic viewpoint is still being analyzed. Spiritual well-being is a difficult concept to measure using traditional quantitative research methods. This article examines the research literature and scientific knowledge surrounding spiritual well-being in patients with serious and terminal conditions. Aspects of spiritual well-being are examined and goals for future research are addressed.
Most nurses who have encountered suffering in clinical settings have observed a dimension that exceeds the physical and psychological dimensions of human experience. In this dimension the parameters of well-being and distress are not those of the body and mind. Instead, this dimension is of the human spirit which, connected to a larger "something"--be it God, the Universe, Nature, or Community--transcends the everyday world. In the spiritual dimension, issues of patient well-being are not grounded in relief of pain, anxiety, and other symptoms, but in the person's own answering of existential questions of meaning and purpose.
The nature of the spiritual dimension poses a number of philosophical problems for research scientists. One fundamental problem is the question of the limits of scientific knowledge about spiritual issues, including spiritual well-being. Science is a product and process of the everyday world, and thus an inadequate tool to access knowledge of a dimension that by definition transcends that same world. This is akin to the problem mystics face in describing their experiences. One of the hallmarks of mystical experiences across religions is ineffability--the experiences are too overwhelming or awesome to be described completely; they transcend the limits of language.  or only a "small number of studies" to characterize the state of the science.
That potential for growth in the research area exists, however, is evident in the inclusion of spiritual distress in the developing nursing diagnostic taxonomy. [6,7] The nursing diagnosis of spiritual distress explicitly recognizes a spiritual dimension of well-being that integrates and transcends biological and psychosocial well-being.  Serious consideration of spiritual distress as a nursing diagnosis will inevitably lead to calls for more empirical work, as in the recent evaluation of the diagnosis by Ileliker.  Ileliker concluded that the spiritual realm was an important dimension for nursing care of the whole person, but that the diagnosis was premature because of the traditionally limited perspective in which nursing approached the spiritual realm, inadequate educational preparation for nurses in this area, and inadequate structural support in work settings for spiritual work by nurses.
Because most nursing research is conducted within a quantitative paradigm and is thus dependent on research instruments that adequately operationalize and measure underlying concepts, research on spiritual well-being has been hampered by the lack of such instruments. A survey of the literature in 1985 identified four instruments that attempted to measure, spiritual well-being or needs.  Two of these measures, Hess' Spiritual Needs Survey  and Stoll's Guidelines for Spiritual Assessment, are clinical assessment tools for which no systematic evaluation of usefulness has been made. The other two instruments, developed by Moberg [13,14] and by Ellison and Paloutzian, [15-17] were developed specifically for research.
Moberg's work is earlier and classic in the sense of establishing spiritual well-being as an area for scientific inquiry. Moberg's instrument is an 82-item Likert-type questionnaire that is the product of extensive instrument development work and testing.  Questionnaire items are related to seven factors of spiritual well-being and include Christian faith, self-satisfaction, personal piety, optimism, elitism, religious cynicism, and subjective spiritual well-being. That the instrument is useful only with patients who hold mainstream Christian belief is clear, and thus has limited nursing research with this tool.
Ellison and Paloutzian's spiritual well-being scale (SWBS) is a 20-item Likert-type questionnaire. These authors conceptualized two dimensions of spiritual well-being, each of which underlies a separate sub scale of the instrument. [16,17] The religious well-being sub scale (RWB) measures the sense of well-being that is derived for a person from a relationship with God. The existential well-being sub scale (EWB) measures the sense of well-being related to the person's sense of purpose in and satisfaction with life. While acknowledging that the instrument is dependent on the Western notion of a personal deity, Ellison has argued that the religious well-being sub scale could be interpreted to fit Eastern conceptions of God,  although there are no reports in the literature of this being successfully done.
Despite this cultural bias, the SWBS has provided some interesting research findings. Initial research focused on people who were not ill. In these studies, spiritual well-being correlated with indicators of self-esteem and assertiveness and negatively correlated with indicators of depression and loneliness. [15,16,18]
Several studies by nurse researchers are examples of the attempt to look at these kinds of relationships in HI persons. Miller compared patients with rheumatoid arthritis to a random sample of healthy adults and replicated the finding that higher scores on the SWBS were related to lower scores on a measure of loneliness in both groups.  Miller found significantly higher scores on the RWB in the chronically ill patients but no difference in the EWB scores between groups. Her conclusion was that the study demonstrated the increased salience or importance of religious well-being for coping with chronic illness, as well as the need for further study. In another study, Kaczorowski gave the SWBS and another instrument that measures levels of anxiety to 114 adults with cancer.  Her results support the theory that people with high levels of spiritual well-being have less anxiety in the face of serious illness.
In another study with mixed results, the researchers attempted to examine the relationships between hope and the variables of spiritual well-being (using the SWBS) and intrinsic versus extrinsic religiousness in women diagnosed with breast cancer.  The notion of intrinsic versus extrinsic religiousness was based on earlier work by Allport  a psychologist, who made the distinction between individuals who have internalized their religious beliefs, which then permeate their everyday lives (intrinsic), and those for whom religion is a label of social utility, an identification with a social group (extrinsic). Researchers found, however, no differences in hope based on intrinsic or extrinsic religiousness. However, hope scores did significantly correlate with the SWBS, which verified the findings of an earlier study of patients with AIDS.  Further analysis revealed that the EWB subscale was the primary contributor to this correlation; in other words, items related to existential well-being had the most effect on hope.
Finally, in a methodological study designed to test the reliability and construct validity of the SWBS, the instrument was used on a population of family members caring for a terminally ill relative.  The researchers demonstrated that the instrument was reliable; in other words, people's answers were consistent within similar conceptual areas. However, they found no evidence in the study that the instrument was valid, i.e., that it actually measured spiritual well-being as it purported to do.
Another body of research literature is focused on the relationship of spiritual factors, defined somewhat differently by different scientists, and the well-being of patients in general. Predominant in this area is the work of Reed, who has been building a middle-range theory of self-transcendence from a life span developmental perspective. ,26-29] Reed's research has included groups of both terminally ill adults and adults older than 80 years of age. An initial study found that terminally ill adults manifested personal religiousness to a greater degree than a comparison group of healthy adults. 
In another study, Reed developed and used a scale to measure spiritual perspective, which was correlated with scores on a general index of well-being in three groups: terminally ill hospitalized adults, non-terminally ill hospitalized adults, and nonhospitalized adults.  Reed's study findings upheld her two hypotheses that the terminally ill hospitalized adults would have a greater spiritual perspective score than the other groups, and that there would be a positive relationship between the spiritual perspective scores of the terminally ill adults and their overall wellbeing. Reed's work thus provides some scientific validation that suffering is more likely to call forth aspects of the spiritual dimension and that this dimension seems to be a source of meaning and coping (a way of maintaining or attaining well-being) for those who access it successfully.
Reed's conclusions are similar to those reached in our analysis of narratives related by hospice patients and hospice nurses.  These narratives contained stories of meaningful experiences through which patients or their family members were able to transcend their suffering. As we reported then, it was clear in the stories and in our clinical observations that these people "were having critical experiences that they felt were bringing them into contact with forces greater than themselves and fundamentally changing the way they experienced suffering." The experiences, although usually brief, seemed to have lasting therapeutic value in regard to improved well-being.
Studies such as Reed's that validate common clinical observations of the therapeutic value of the spiritual dimension are important in building a scientific base for further research. Other studies that have focused on terminally and seriously ill patients have done this as well. For example, Gibbs and Achterberg-Lawlis found that terminally ill, indigent patients with cancer who had strong spiritual values also had significantly lower anxiety about dying and thus a greater level of well-being.  In another study, behaviors related to the spiritual dimension were identified as a major coping strategy for 35 patients with a life threatening condition that necessitated hemodialysis. Likewise, O'Brien demonstrated the importance of religious faith in the adaptation of similar patients (end-stage renal failure) to long-term hemodialysis. Herth found that patients undergoing chemotherapy who indicated strong religious faith had more hope and were better able to cope with the therapy.  This finding is weakened somewhat by the fact that most (90 of the 120) patients in her study indicated that they had strong faith, while the remainder were scattered among four other categories (weak faith, lost faith, without faith, and unsure).
A number of qualitative nurse researchers' findings converge with some of the literature cited above in terms of the importance of the spiritual dimension and well-being. While quantitative researchers have designed studies to test theorized relationships between things such as spiritual well-being and anxiety or hope, qualitative studies begin at a different point. Typically, the investigator begins by looking at a particular clinical phenomenon or situation with the intention of either describing common themes or features in detail or generating a mid-range theory about it. Usually, aspects related to a spiritual dimension are then found by analysis of the textual data by the investigator and used in order to make an account of the findings coherent and complete. This contrasts with research that assumes and imposes a spiritual dimension beforehand.
One example is a study of 30 newly diagnosed patients with cancer.  Based on the classic observations of Weisman and Worden about the "existential plight" a diagnosis of cancer creates, the study was designed, using interviews from a larger study, to describe the process patients with cancer went through to find meaning in their predicaments. Six themes were identified from these data as being significant issues for the patients in their search for meaning (Table 1). Two major factors that ran across themes were support from others and spiritual faith. For these patients, faith was a major factor in their search for meaning and their ability to cope with the diagnosis. Although these patients spoke of faith as a connection to God, their notions of faith were broad. Indeed, 87% of them reported that religion, particularly church attendance, was not important in their lives.
Two qualitative studies also suggested spiritual aspects connected with courage and hope. These aspects were explicit in a phenomenological study by Haase that was aimed at describing components of courage among chronically ill adolescents. Through interviews with nine adolescents, eight major categories were identified as underlying their experiences of courage in the face of chronic illness. One major category was transcendence, which included themes concerning specific hopes, sources of hope, and faith in God. Statements made by the participants relating to the latter two themes included obvious spiritual aspects. For example, sources of hope included faith in God and an intuitive sense of well-being. And faith in God was maintained by prayers from participants and others with whom they were connected in important ways. As experienced by these participants, faith in God was an ongoing process that included a struggle to maintain faith.
| Table 1 .--Themes for Patients in Search of Meaning
In a study by Owen designed to generate a grounded theory of hopeful patients with cancer through interviews with clinical nurse specialists, less explicit spiritual aspects infused several of six themes she reported.  For example, for a theme called Meaning in Life, data were included about not being influenced by the external world in finding meaning. A theme called Peace implied a transcendence of the everyday world of which the cancer was a part through Feelings of acceptance that led to feelings of peace, harmony, and contentment.
Finally, Stiles interviewed hospice nurses and families who had a family member in an outpatient hospice program in the 6 months prior to her study? In contrast to the qualitative studies above, Stiles was looking explicitly for elements of the spiritual relationship between nurse and family. However, she did not impose this expectation on the interviews with 11 hospice nurses and 12 bereaved families identified by these nurses, asking instead a very open-ended question about what the hospice experience had been like. This elicited from both nurses and family members, personal stories of the experience. The data were analyzed with attention to the spiritual dimension of the narratives. The result is a very rich description of the participants' experiences that includes several spiritual themes. Such themes identified by the author were knowledge of the transcendent that emerged in the dialogue between nurses and families, faith in the absolute and in the self, and a nursing quality of being with others rather than doing to others. One conclusion reached by Stiles from her data was that the spiritual relationship between nurse and family members was one that fostered spiritual growth in both. Also, in this study, it is clear that what is included in the spiritual dimension by both participants and researcher is much broader than the traditional notions that are focused on and derived from religion. One limitation of the study is that outpatient hospice programs provide a distinct way of delivering care to the terminally ill and their families within their own homes. This fosters a very different relationship between nurse and patient, as well as nurse and family members, than do other kinds of practice settings.
The present state of the research on spiritual well-being does not allow lot major conclusions, especially as to what nurses can do to meet the needs of patients in this area. It is clear that the spiritual dimension, as usually defined, is an important and potentially therapeutic reason for many patients suffering from serious illness. But it is also clear, as Heliker argued, that nursing's perspective on this dimension remains inadequate and restricted.  It is premature to advance any scientific claim of expertise in this area on which to build programs of assessment or intervention.
From the themes and issues in the literature, however, a few observations can be made. For the present, these will have to stand as tentative conclusions.
First, there is an obvious need for instruments that measure spiritual well-being and other aspects of spirituality more broadly than the ones cited above. This is particularly true given the trends of decreased support for organized religion and toward a multicultural and diverse society. It will not be enough merely to interpret or adapt current measures for religions outside the Judeo-Christian tradition. The whole notion of the spiritual dimension must be reconceptualized more globally and holistically; new measures must be operationalized from that reconceptualization.
Second, the area of spiritual well-being in seriously and terminally ill patients is very complicated. This is apparent in the research findings, whether the phenomenon was approached directly or obliquely through concepts like hope, meaning, faith, or acceptance. No doubt, related findings in disciplines like psychology that scrupulously avoid using the word "spiritual," opting instead for "existential," would add to this complexity. We are reminded of a Hindu folktale in which seven blind beggars encounter an elephant. Each, grabbing hold of one body part only, is convinced of the essential nature of the beast--for the one who pulls the tail, the reality of an elephant is like a big snake; for the one who seizes an ear, an elephant is like a banana leaf; for one who holds the leg, an elephant seems like a big tree; and so on.
There are a number of ways researchers can and will deal with this complexity. For example, in a recent concept analysis of spiritual perspective, hope, acceptance, and self-transcendence, the authors reviewed the literature and identified critical attributes, theoretical definitions, outcomes, and antecedents for each of the four concepts.  The analysis allows for the specification of interrelationships and has practical implications for further research instrument development.
Such an analysis, however, remains distant from lived experience. If, as in the folktale above, people are using different terms to describe the same underlying complex experience, reifying distinctions at this point is probably premature. This argues the need for more descriptive research that focuses on the perspective of the patients involved. In this regard, qualitative methods may add more depth to the research literature.
Third, the evidence in the research literature to support the notion that spiritual well-being and other aspects of spirituality have therapeutic importance in the face of serious illness is not yet well developed. That decreased loneliness or anxiety are found together with increased spiritual well-being or hope or transcendence does not mean that there is a causal link. It can be interpreted just as well in the opposite direction--lot instance, that having less anxiety causes a person to experience more spiritual well-being. Undoubtedly, the interactions are complex. In the arts, for example, the theme that suffering has redemptive value for the spiritual dimension of a human life is common, suggesting an entirely different way of looking at the issue.
A final observation is a cautionary one. Because nursing is an applied science, there is pressure for researchers to move quickly to develop programs of active intervention in their research. Such interventions aim at changing the person in some way. But, given the inherent philosophical problem of scientific research in this dimension, and given the complexity of the area as outlined above, we argue strongly that such impulses should be avoided. Instead, passive interventions that focus on the conditions under which nurses deliver care, particularly aspects of the care environment that may hinder the patient's personal and private asking and answering of existential questions, are a more legitimate object of change.
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