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December 2019 Article of the Month
Cipriano-Steffens, T. M., Carilli, T., Hlubocky, F., Quinn, M., Fitchett, G. and Polite, B. "'Let go, let God': a qualitative study exploring cancer patients' spirituality and its place in the medical setting." Journal of Religion and Health 59, no. 5 (October 2020): 2341-2363.
SUMMARY and COMMENT: This month's article takes up a long-standing topic in the literature, offering "deeper insight into how patients use their spirituality to cope during illness, including how they see the medical team meeting their spiritual needs" [p. 2341, abstract]. But in addition to the specific results, it does a good job at walking the reader through the researchers' thinking and their methodology, which should stir ideas for chaplain researchers. And, it provides some particularly interesting findings around the themes of the Power of Talk and the Chaplain's Misunderstood Role. The data for this qualitative study are slightly old, with interviews having been conducted between December 2012-December 2013 [--see p. 2343], yet that does not seem an issue for the current purpose. The authors include two people in the field of communications within medicine (Cipriano-Steffens and Carilli), a research scientist in medicine (Quinn), a physician (Polite), a clinical health psychologist (Hlubocky), and an experienced chaplain researcher (Fitchett). In their introduction, the authors give nice insight into how they were led to the present study via their previous work and in light of other research [--see Items of Related Interest, §I, below], from which "came the idea to ask patients if they would be interested in spiritual support from their medical team, and then to describe [what] that type of support would look like to them" [p. 2342]. They intentionally use "the two interrelated constructs of Religion and Spirituality" as a "lens" for exploring their subject, allowing patients to "reflect on ideas related to finding meaning in their illness and its relationship to medicine, healthcare teams, treatment, and support" [p. 2342]. They admirably define religion and spirituality in their Introduction (as not all authors do), and they note: "It is no longer thought that just religious practice provides people a way to cope, but a belief in a Higher Power and the meaning and purpose it gives their lives, understood as one's spirituality" [p. 2342, italics added]. The methodology is especially well explained not just in terms of operation but conceptualization. We chose cognitive interviewing, as it is a well-validated technique for investigating thought processes people use as they sort through information and make decisions.... It is designed to examine what a respondent is actually thinking and feeling when asked certain questions by asking primary questions, followed by probes to test comprehension, retrieval/recall and decision process -- or how they arrived at their answer -- and response process. Such interviews can be exploratory in nature, by focusing on generating ideas about potential problems. Its advantage is that it allows interviewers to explore issues that might have been missed through more tightly scripted interviews. Its main documented weakness is reliance on the social and technical skills of the interviewer to elicit a subject's recall of events. [p. 2343]The interview method was pursued as a "self-reflexive process [that] allows interviewees to 'think out loud'" and permits the researchers to "see how individuals work through their feelings, bridging the connection between their illness and their religious and spiritual beliefs" [p. 2343]. The full interviewer guide is published as an appendix [--see pp. 2358-2362, and see Items of Related Interest, §II, below]. The authors also explain in detail their analytical method of Framework Analysis, which they describe as "a stringent and rigorous type of qualitative research approach, which enables an in-depth exploration and systematic analysis of qualitative text and data" [pp. 2343-2344, and see Items of Related Interest, §III, below]. They offer a helpful walk-through of this "multi-step approach to analysis" that should be thought-provoking to chaplain readers, and they comment: "It is through the process of immersion in the data and considering connections and interconnections between codes, concepts and themes that the data spoke to us, guiding us in finding a 'story' in this work" [--see p. 2344]. A convenience sample of 25 colorectal cancer patients was recruited from "an oncology clinic [at] a medical center serving a diverse population" [p. 2342]. Among the findings: "Our results demonstrate that people with cancer show: (1) the importance of and reliance on their R/S beliefs through an enhanced faith in the power of God --or some similar concept; (2) a need for spiritual healing (increased spirituality, acknowledgement and reflection on the Divine) in their lives; and (3) a desired outlet for such expression and support" [p. 2353]. Also, seven major themes are identified from the interviews, and each is addressed at multi-paragraph length and illustrated by direct patient responses. The themes are:
The idea of an interview method giving people "the space to 'think out loud'" is revisited in the Discussion section. The authors observe that "there were those who although [they] did not initially support the idea of spiritual needs being addressed through the healthcare team, changed their opinion midway through the interview..." [p. 2354]. For example, regarding those who "felt there should be a division between Medicine and Religion --a line that should not be crossed," ...[m]ost...did change their view once they started to engage in 'spiritual talk,' as though they had never reflected on this concept at length and the more they talked about it, the more it seemed like something that could help patients" [p. 2355]. The authors moreover comment: Allowing [patients] to use the framework of spirituality -- what we will term "spiritual talk" -- to express their fears over both talking about their cancer and the disease itself seemed to give them a sense of peace and release from stress for the first time. Language -- how we express ourselves -- not only conveys a message, belief, opinion, or idea -- but shapes thought. ...Having another listen to their stories and how they use their faith to cope became in itself a powerful coping mechanism. [p. 2354]For chaplain readers, the observation of the effect of the interview on patients should raise awareness about how Spirituality & Health research can itself be a kind of intervention itself [--see Items of Related Interest, §IV, below] as well as about how a chaplain may both facilitate a patient's meaning-making and also risk subtly effecting a dynamic of leading a patient in that process. Our featured researchers are obviously concerned about not leading patients to produce particular data. Their interview methodology is designed to collect data as cleanly as is feasible out of patients' own thinking, yet they "acknowledge the researcher's presence during data gathering can affect the subjects' responses" [p. 2356]. Along similar lines, clinical chaplains might see in the rigor of such research a caution about what it means to try to hear patients' stories as cleanly as possible and to keep our interpretation/analysis from essentially corrupting the data being offered in real time. Just as in this research, there would seem to be important value in chaplaincy practice of giving patients "the space to 'think out loud.'" Two final points: First, the quote from the title, "Let go, let God," curiously does not actually appear in the text of the article, though it does seem to relate closely to the theme of Finding God in Cancer and Healing and a quote from a patient on that theme [--see p. 2348]. Second, apart from a reference in the text (not the bibliography) to a 2018 article by our authors, the latest citation in the bibliography is from 2013. [Note: There are minor typos in the pre-print version of the article, but nothing that should undercut its use and value. A key article in the bibliography on cognitive interviewing, cited as by Willis, G. & Willis, P., is actually written by Beatty, P. C. & Willis, G. B. --see Items of Related Interest, §II, below.] Suggestions for Use of the Article for Student Discussion: This is an engagingly written article that should be useful for any CPE group. The themes are clearly lined out, patient quotes personalize the results, and the methodological elements are written in a way that non-researchers should be able to understand easily, though students versed in or just interested in research will probably be especially drawn to the explanations of the Cognitive Interview and Framework Analysis. This would be a good article to refresh chaplains' thinking on what the religion/spiritual construct actually entails, and why the field often goes with the combined construct over simply choosing either religion or spiritual. Also, with the help of the appended interview guide, this would seem a very good example of research to help students see some similarities but also significant differences between a qualitative researcher's approach to interacting with a patient and a clinical chaplain's approach in a pastoral visit. The seven major themes offer a straightforward structure for discussing the study, but the themes on the Power of Talk and the Chaplain's Misunderstood Role deserve special attention. What does it mean to give patients "the space to 'think out loud'"? And, what do they make of the expectations and assumptions about chaplains? The negative ones are certainly striking, but even some of the positive ones may be problematic. What about patients' views on physicians? Might knowing of such patient views influence how chaplains could work together or in tandem with physicians for patient care? What might be options for "a more synergistic approach" to "bridg[ing] a gap between religion and medicine" [p. 2356] to help patients? Look at the list of interventional examples that patients suggested, such as "a prayer offered at the right time," and the stressful occasions for coping, including moments of being "overwhelmed by thoughts of the deadly disease inside their bodies" [p. 2355]. How does this resonate with students' practice of encountering patients? This study used a sample of cancer patients, but how generalizable do students believe the insights of this research to be? Finally, if the CPE group discussed the November 2019 Article-of-the-Month about miracles, students might brainstorm about the potential dissonance between patients' experience of physicians presenting clinical information about cancer progression and of physicians as God's Helpers for healing. Related Items of Interest: I. Our authors cite the following two studies as especially influencing the development of the present research.
II. Our featured article employs Cognitive Interviewing, and our authors cite a 2005 book by Gordon B. Willis [Cognitive Interviewing: A Tool for Improving Questionnaire Design] and a 2007 article by Paul C. Beatty and Gordon B. Willis ["Research synthesis: the practice of cognitive interviewing," Public Opinion Quarterly 71, no. 2 (Summer 2007): 287-311, available freely online from the journal]. Those two references are indeed key, but also see by Gordon B. Willis, Cognitive Interviewing: A "How To" Guide, online via the UCLA Center for Health Improvement of Minority Elderly (CHIME). See also:
In addition, chaplain readers may be interested in the idea of cognitive interviewing in the following article regarding the popular FACIT-Sp measure:
Hall, S. and Beatty, S. "Assessing spiritual well-being in residents of nursing homes for older people using the FACIT-Sp-12: a cognitive interviewing study." Quality of Life Research 23, no. 6 (August 2014): 1701-1711. [(Abstract:) PURPOSE: To detect any problems with completion of the Functional Assessment of Chronic Illness Therapy Spiritual Well-being Scale (FACIT-Sp-12), to analyse the causes of such problems and to propose solutions to overcome them. METHODS: We audio-recorded face-to-face interviews with 17 older people living in one of three nursing homes in London, UK, while they completed FACIT-Sp-12. We used cognitive interviewing methods to explore residents' responses. Our analysis was based on the Framework approach to qualitative analysis. We developed the framework of themes a priori. These comprised: comprehension of the question; retrieval from memory of relevant information; decision processes; and response processes. RESULTS: Ten residents completed the FACIT-Sp-12 with no missing data. Most problems involved comprehension and/or selecting response options. Twelve residents had problems with comprehension of at least one question, particularly with abstract concepts (e.g. harmony, productivity), or where there were assumptions inherent in the questions (e.g. they had an illness). When residents had problems comprehending the question, they also found it difficult to select a response. Thirteen residents had difficulties selecting responses (e.g. categories did not reflect their views or were not meaningful in the context of the statement). Some chose not to respond, others responded to the question as they understood it. CONCLUSIONS: The FACIT-Sp-12 could provide valuable insights into the spiritual concerns of nursing home residents; however, data may be neither valid nor reliable if they do not comprehend the questions as intended and respond appropriately. Providing clear and detailed instructions, including definitions of abstract concepts, may improve the validity of this measure for this population.] III. Regarding Framework Analysis, chaplains may be interested in the following spirituality studies that used the approach: Piderman, K. M., Egginton, J. S., Ingram, C., Dose, A. M., Yoder, T. J., Lovejoy, L. A., Swanson, S. W., Hogg, J. T., Lapid, M. I., Jatoi, A., Remtema, M. S., Tata, B. S. and Breitkopf, C. R. "I'm still me: inspiration and instruction from individuals with brain cancer." Journal of Health Care Chaplaincy 23, no. 1 (January-March 2017): 15-33. [(Abstract:) Individuals with brain cancer face many challenges, including threats to cognition, personality, and sensory and motor functioning. These can alter one's sense of identity and result in despair. Chaplain-led spiritual interviews were conducted with 19 patients with brain cancer as part of a larger spiritual legacy intervention called "Hear My Voice." The majority was female (58%), married (68%) and had aggressive/advanced tumors (63%). Participants were 22-68 years of age and expressed the following religious affiliations: Protestant (42%), Catholic (21%), Muslim (5%), and none (32%). Framework analysis was applied to reduce and understand the interview data. Primary codes were relationships with: God or the spiritual, others, and self. Brain cancer was reported to deepen and enrich patients' commitment to these relationships. Struggle and grief were also revealed. Results suggest the continued vitality, growth and generativity of these participants and provide insight for chaplains and others on the medical team.] [This was our February 2017 Article-of-the-Month.]
Yang, C. T., Narayanasamy, A. and Chang, S. L.
"Transcultural spirituality: the spiritual journey of hospitalized patients with schizophrenia in Taiwan." Journal of Advanced Nursing 68, no. 2 (February 2012): 358-367. [(Abstract:) AIM: The aim of this study was to explore how hospitalization and the diagnosis of schizophrenia have an impact on Taiwanese patients' spiritual life. BACKGROUND: Psychiatric nurses tend to construe patients' spiritual issues as pathological problems and consequently are reluctant to address patient's spirituality, which results in spirituality being overlooked in mental illness. An individual's spiritual journey is dependent upon their cultural background and beliefs; however, the professional's preconceived ideas suppress the voice of patients with schizophrenia to share their experiences of their spiritual journey. The lack of research exploring spirituality in mental illness in Taiwan means that spiritual care is overlooked in practice. This study sets out to explore spirituality from the perspectives of patients in two mental hospitals in Taiwan. METHODS: Using a qualitative approach, 22 long-term hospitalized patients diagnosed with schizophrenia were interviewed. Several themes from the data were identified using Ritchie and Spencer's (1994) five stages analytical framework. The study was carried out from 2006 to 2008. RESULTS: Patients revealed spiritual distress as a consequence of prolonged hospitalization. They used referents consistent with traditional Chinese philosophical perspectives derived from Taoism and Confucianism to describe various features of their spiritual distress and their longing for spiritual revival, transcendence and to be accepted as normal persons. CONCLUSIONS: In this age of globalization, nurses need to be fully cognisant of the cultural aspects of patients to respond to a mental health patient's spirituality. Clinical and educational guidelines and policies could be developed for spiritual care in Taiwan.]
IV. See the following editorial by a leading research chaplain on the idea that engaging patients in research questions might have a coincidental effect aligned with pastoral interaction:
V. The role of physicians in the spiritual care of patients has been well considered in the health care literature. The following 2015 review gives a good sense of the range of research on the topic.
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If you have suggestions about the form and/or content of the site, e-mail Chaplain John Ehman, Article-of-the-Month Editor, at john.ehman@uphs.upenn.edu
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