November 2012 Article of the Month
This month's article selection is by Chaplain John Ehman,
University of Pennsylvania Medical Center-Penn Presbyterian, Philadelphia PA.
Grossoehme, D. H., Ragsdale, J. R., Cotton, S., Meyers, M. A., Clancy, J. P., Seid, M. and Joseph, P. M. "Using spirituality after an adult CF diagnosis: cognitive reframing and adherence motivation." Journal of Healthcare Chaplaincy 18, nos. 3-4 (July 2012): 110-120.
SUMMARY and COMMENT: "While the vast majority of persons continue to be diagnosed with [cystic fibrosis] as infants or children, a sizable minority of patients are diagnosed in adulthood, often after a long history of subacute symptoms" [p. 111]. This month's article explores the experience of the roughly 8% of CF patients diagnosed after age 18, looking specifically at how this population may relate their spirituality to their disease and construct spiritual meaning. The lead author, Daniel H. Grossoehme, and the second author, Judith R. Ragsdale, are chaplains at Cincinnati Children's Hospital Medical Center, and are part of an interdisciplinary team at the Grossoehme Lab. [UPDATE, 7/14/19: Daniel Grossoehme moved from Cincinnati Children's Hospital Medical Center, whiere he had established the Grossoehme Lab, to Akron Children's Hospital at the end of 2018.] The research builds upon the authors' previous work describing "how parents of children used spiritual beliefs during the first 12 and 24 months following their child's CF diagnosis" [p. 112, italics added, and see Items of Related Interest, §I (below)] and is "the first report of how spirituality is used in coping with disease by persons diagnosed with CF later in life" [p. 117].
The team employed a grounded theory (qualitative) methodology, interviewing 12 out of 25 eligible patients before judging that saturation of data had been achieved. "The goal of grounded theory is not generalizability, but articulation of a theory capable future testing" [p. 118]. They give a brief but very nice description of their methodology on p. 115, including the importance of using telephone interviews to "yield better data as interviewees may feel less pressure to provide socially desirable responses [on sensitive topics]" [p. 113].
Among the findings:
The participants described their health care as a partnership between themselves, God, and their clinicians. This concept of health care has not previously been reported. ...Participants related spirituality to their physical care of their bodies and Divine contribution to their health was conditional upon their own effort to use common sense, to listen to their pulmonologist, and follow prescribed treatments. Spirituality was used as a coping mechanism by positively reframing the experience.
The themes from the interviews are well illustrated by quotes from the participants [--see pp. 115-116].
The secondary study purpose, that the constructed meaning by these adults would differ from that of adults who were parents of children diagnosed with CF [as indicated from earlier research], was also supported by the findings. Both groups expressed empowerment, but the majority in each group expressed empowerment in different ways. Persons diagnosed with CF as adults found the diagnosis was itself empowering ("Now my life makes sense.") In contrast, parents of newly-diagnosed children felt empowered by reinterpreting the axiom, "God doesn't give you more than you can handle" as, "Since we've been given this, God must think we can handle it." Adults diagnosed with CF as adults generally did not experience God as "active" and "interventionist" as did the parents in our previous report of parents of children diagnosed with CF. Instead, persons diagnosed in adulthood verbalized God's intervention and action as conditional upon their taking an active role in their health care. They focused to a greater extent on the role for personal responsibility in their health than did parents of children diagnosed with CF. [p. 117]
The authors speculate about the clinical implications of these findings:
Adults operating in this divine partnership paradigm may be very receptive to concrete, practical, evidence-based clinical guidance, and may be especially motivated to complete recommended treatments when they believe God has a vested interest in their adherence. Chaplains are uniquely positioned to facilitate such conversations with persons who have CF and their providers. [p. 118]
They conclude by offering three thought-provoking directions for future research:
First, does the belief that God's help is conditional lead people with late-life CF diagnoses to be more adherent than adults diagnosed as children? Second, how does attributing CF to "God's will" and positively reframing their diagnosis compare to health-related quality of life of adults diagnosed as children? Third, do those whose faith is challenged to the point that they question their beliefs have poorer health outcomes (e.g., depression or quality of life) compared to those who do not?
The bibliography of 23 references covers good sources on coping, including 12 authored/co-authored by Ken Pargament, whose work on religious coping is central in the field. For more on the work of Grossoehme and his colleagues, see also the list of publications on the Grossoehme Lab page at the Cincinnati Children's Hospital Medical Center.
Suggestions for the Use of the Article for Discussion in CPE:
This article will obviously be of special interest to chaplains working with cystic fibrosis patients, but it should also have wider appeal. Discussion could begin with a focus on CF, perhaps including an invited physician or nurse with that population, but the findings around the ways that the study participants related spirituality to their disease and differences between the courses of meaning-making could open the conversation beyond the CF context. How, for instance, have students encountered a "collaborative" [p. 114] sense of religious coping in patients? The paragraph-length descriptions/illustrations of the major supporting themes of the study [--see pp. 115-116] could even be read out loud in the CPE group to spur discussion. Also, students might discuss the potential role of the chaplain as a "conflict mediator" between patients and physicians with differing paradigms of the relation of God to disease/treatment [--see p. 117]. Some students might further be intrigued by the reference to "Crystal Park's�proposed concept of a 'meaning system'" [p. 117, and see Related Items of Interest, §II (below)].
Related Items of Interest:
I. The previous research by the authors, regarding parents of children diagnosed with CF, is noted as the following:
Grossoehme, D. H., Ragsdale, J. R., Snow, A. and Seid, M. "We were chosen as a family: parents� evolving use of religion when their child has cystic fibrosis." Journal of Religion and Health 51, no. 4 (December 2012): 1347-1358. [NOTE: The title differs slightly from what is given in our featured article's bibliography.] [(Abstract:) Parental coping with new CF diagnoses often includes religion; however, little is known about how the use of religion changes over time. Longitudinal grounded theory method, in which parents were interviewed twice the 2 years after their child�s diagnosis, was used. Parents constructed the meaning that parenting a child with CF is their vocation, in accordance with �God�s plan.� A shift from isolation to an outward focus and reentry into the community was clear. The use of faith evolved over time and continues to be a source of support and hope for parents. Clinical implications of parental religion are discussed.]
Grossoehme, D. H., Ragsdale, J., Wooldridge, J. L., Cotton, S. and Seid, M. "We can handle this: parents' use of religion in the first year following their child's diagnosis with cystic fibrosis." Journal of Health Care Chaplaincy 16, nos. 3-4 (2010): 95-108. [(Abstract:) The diagnosis of a child's life-shortening disease leads many American parents to utilize religious beliefs. Models relating religious constructs to health have been proposed. Still lacking are inductive models based on parent experience. The specific aims of this study were: 1. develop a grounded theory of parental use of religion in the year after diagnosis; 2. describe whether parents understand a relationship between their religious beliefs and their follow-through with their child's at-home treatment regimen. Fifteen parent interviews were analyzed using grounded theory method. Parents used religion to make meaning of their child's cystic fibrosis (CF) diagnosis. Parents imagined God as active, benevolent, and interventionist; found hope in their beliefs; felt supported by God; and related religion to their motivation to adhere to their child's treatment plan. Religious beliefs are clinically significant in working with many parents of children recently diagnosed with CF. Interventions that improve adherence to treatment may be enhanced by including religious aspects.] *
* The article above is immediately followed in the same issue of the journal by: Grossoehme, D. H., Ragsdale, J., Cotton, S., Wooldridge, J. L., Grimes, L. and Seid, M. "Parents' religious coping styles in the first year after their child's cystic fibrosis diagnosis." Journal of Health Care Chaplaincy 16, nos. 3-4 (2010): 109-122. [(Abstract:) Parents of children diagnosed with cystic fibrosis described it as "devastating." Given religion's importance to many Americans, parents may utilize religious coping. Relatively little is known about parents' use of religious coping to handle their child's illness. Interviews with 15 parents about their use of religion in the year following their child's cystic fibrosis diagnosis were coded for religious coping styles. Sixteen styles were identified. Positive religious coping styles were more frequent than negative styles (previously associated with poorer health outcomes), and occurred more frequently than in other studies. Religious coping styles used to make meaning, gain control, or seek comfort/intimacy with God were equally prevalent. The most common styles were: Pleading, Collaboration, Benevolent Religious Reappraisals, and Seeking Spiritual Support. Parents described active rather than passive coping styles. Religious coping involving religious others was rare. Clinical attention to negative religious coping may prevent it becoming chronic and negatively affecting health.]
II. For material on Crystal Park's concept of a "meaning system" (mentioned on p. 117 of our featured article), see:
Park, C. L. "Religion as a meaning-making framework in coping with life stress." Journal of Social Issues 61, no. 4 (December 2005): 707-729. [(Abstract:) This article explores how religion, as a meaning system, influences coping with adversity. First, a model emphasizing the role of meaning making in coping is presented. Next, religion as a meaning system is defined, and theory and research on the role of religion in the coping process are summarized. Results from the author�s study of 169 bereaved college students are then presented to illustrate some of the pathways through which religious meaning can influence the coping process in making meaning following loss. Findings indicate that associations between religion and adjustment vary across time since loss, and that these associations are mediated by meaning-making coping. Finally, implications for individual and societal well-being and suggestions for future research are discussed.]
Park, C. L. "Religiousness/spirituality and health: a meaning systems perspective." Journal of Behavioral Medicine 30, no. 4 (August 2007): 319-328. [(Abstract:) The existence of links between religion and spirituality (R/S) and health appear to be firmly established, but much less is known about how these various aspects of R/S are translated into health outcomes. Within a meaning systems framework, this article reviews and integrates findings regarding the many pathways through which R/S may influence physical health and well-being. In particular, evidence for the pathways of body sanctification, meaning in life, social support, health locus of control, health behaviors, positive and negative affect and stress moderation, treatment adherence, and coping is examined. The article concludes with suggestions for future research.]
Park, C. L. "Testing the meaning making model of coping with loss." Journal of Social and Clinical Psychology 27, no. 9 (November 2008): 970-994. [(Abstract:) The meaning making model of adjusting to highly stressful events is widely accepted among stress and trauma researchers. This model posits that distress arises from discrepancies between appraised and global meaning and that individuals attempt to make meaning by reappraising their situation to reduce the discrepancy and thereby ease their distress. Little research has directly tested these assumptions. The present study tested six specific hypotheses derived from the meaning making model in a sample of 108 college students dealing with a significant loss (primarily bereavement) in the past six months. Results provided uneven support for the meaning making model across the specific hypotheses. These findings suggest that the methodology presently used by many researchers in this area should be reconsidered and that future studies of meaning making might profitably implement improved approaches to conceptualization and assessment.]
Park, C. L. and Folkman, S. "Meaning in the context of stress and coping." General Review of Psychology 1, no. 2 (June 1997): 115-144. [This older article gives a sense of the underpinnings of Park's perspective on meaning making. There is also an extensive bibliography that draws heavily on the psychological coping literature.]
III. A key finding in our featured study is that "people diagnosed with CF late in life related spirituality to health in terms of being engaged in a collaborative partnership between themselves, their partnership, and God" [p. 114, italics added]. The particular observation is a new contribution to the field, but it connects with a larger body of research on coping styles that includes the consideration of collaborative religious coping. See:
Pargament, K. I., Kennell, J., Hathaway, W., Grevengoed, N., Newman, J., and Jones, W. "Religion and the problem-solving process: three styles of coping." Journal for the Scientific Study of Religion 27, no. 1 (1988): 90-104. [While this is an older study that uses a non-hospital population and focuses on competence issues, it is nevertheless the basic articulation of the idea of a collaborative religious coping style, in contrast with self-directing and deferring styles. Kenneth Pargament and his colleagues state: "In this style, the responsibility for the problem-solving process is held jointly by the individual and God. Neither the individual nor God is seen as a passive participant. Instead, both participants are viewed as active contributors working together to solve problems." (p. 92) This article is the basis for the often cited description of collaborative religious coping in Pargament's book, The Psychology of Religion and Coping: Theory, Research, Practice (New York: Guilford Publications, 1997 --especially pp. 180-183).]
Schaefer, C. A. and Gorsuch, R. L. "Situational and personal variations in religious coping." Journal for the Scientific Study of Religion 32, no. 2 (1993): 136-147. [This is another older but helpful article in describing the dynamics of collaborative religious coping, with a special emphasis on how coping styles may be state-dependent as well as trait-dependent. The authors put forward a state measure of religious coping style.]
Weathers, B., Kessler, L., Collier, A., Stopfer, J. E., Domchek, S. and Halbert, C. H.
"Utilization of religious coping strategies among African American women at increased risk for hereditary breast and ovarian cancer." Family and Community Health 32, no. 3 (July/September 2009): 218-227. [This is a recent example of the application of the collaborative/deferring/self-directed coping paradigm to a health care population. (From the abstract:) This observational study evaluated utilization of religious coping strategies among 95 African American women who were at increased risk for having a BRCA1/BRCA2 (BRCA1/2) mutation. Overall, women reported high levels of collaborative coping; however, women with fewer than 2 affected relatives...and those who had a lower perceived risk of having a BRCA1/2 mutation...reported significantly greater collaborative coping....]