June 2006 Article of the Month
Nolan, M. T., Hodgin, M. B., Olsen, S. J., Coleman, J., Sauter, P. K., Baker, D., Stanfield, C., Emerling, A. and Hruan, R. H. [School of Nursing, Johns Hopkins University, Baltimore, MD; email@example.com]. "Spiritual issues of family members in a pancreatic cancer chat room." Oncology Nursing Forum 33, no. 2 (March 2006): 239-244.
BACKGROUND and CONTEXT: Patients increasingly use the Internet to learn about diseases and treatments and to connect with other people for insight and support. An April 2006 report by the Pew Internet and American Life Project, The Internet's Growing Role in Life's Major Moments [PDF, 11pp.] notes that 44% of the entire adult American population is online in a typical day (as of December 2005), and a March 2005 survey found that of Internet users who had "dealt...with a major illness or health condition," 23% said the Internet had "played an important role" in their decision-making, and 5% said it had "played a crucial role in their decision-making [--see pp. 1-2 of the report]. Moreover, for those who used the internet for decision-making about a major life event, 28% found professional or expert services helpful, and 34% found advice and support from other people, in general, helpful [--see p. 3 of the report].
In terms of Internet use for spiritual/religious purposes, the Pew Internet and American Life Project's April 2004 report, Faith Online [PDF, 28 pp.] details survey results indicating that 64% of the (then) 128 million "wired Americans" had used the Internet for such purposes [--see p. i of the report]. (Interestingly, 33% of these users described themselves as "spiritual but not religious" [--see p. iii of the report].) What is not well known, however, is just how people use--or wish that they could use--the Internet for spiritual/religious purposes during illness. This month's featured article by Nolan, et al., begins to explore that topic.
This research should spur chaplains to think about how patients seek to use the Internet at health care institutions for spiritual information and even support, and this may be relevant for the structure and content of Pastoral Care Department sites. Most institutions offer sophisticated analyses of site usage, and chaplains may already be trending this data for department sites, but separate studies could also be developed to query patients about their interest in Internet resources for pastoral care (e.g., Would some patients prefer an "Ask-a-Chaplain" section of a Pastoral Care Department web site to a face-to-face pastoral visit?), for spiritual community (e.g., chat rooms), or for specific information. Might a Pastoral Care Department web site help patients to be in contact prior to admission or after discharge, and to what benefit? And, of course, some assessment should be made of the resources necessary in order to make an online avenue for pastoral care practical. The day when Internet access in patients' rooms is as common as a phone connection or a TV may not be far off. (Already, many hospitals provide patients with the opportunity to create their own web pages.) If patients or their family members turn to the Internet in the midst of health crises, what could they find from chaplains to help them?
SUMMARY and COMMENT: The impetus for the present research was a 2005 study [--see Coleman, et al., in Related Items of Interest, below] of users of a Johns Hopkins Hospital pancreatic cancer web site (http://pathology.jhu.edu/pancreas), in which "the authors were surprised to find spiritual issues among the information being exchanged by users of the siteís chat room" [p. 239]. Such surprise was shared by Nolan and her colleagues in their own finding that 19% of the chat room postings analyzed addressed spirituality, "because the site was developed to provide factual information about the disease and its treatment options" [p. 243]. Therefore, "the purpose of the current study was to describe the spiritual issues discussed in those postings and consider how cancer information Web sites might be developed further to provide spiritual support to patients facing life-threatening forms of cancer" [p. 239].
Six-hundred chat room postings from November 2004 were analyzed by a qualitative description method (described on p. 241), which resulted in 14 themes pertaining to spirituality, defined as "a personís beliefs and values regarding the transcendent meaning of life" [p. 241, and also see definitions on p. 240]. These themes, presented in a figure on p. 242, are grouped into four categories:
Each category is addressed in the text, with examples from postings.
Among the findings: "The chat room was used largely by family members of patients with pancreatic cancer" [p. 242], with only 11% of postings coming from patients themselves. The theme of "spiritual convergence" was evidenced in 16% of postings "by statements such as those offering and requesting prayers" [p. 243]. "The greatest number of postings that included spiritual issues...involved requesting prayer or offering prayer for others" [p. 243]. The authors remark about the "intimate conversations with strangers about family membersí hopes, fears, and spiritual issues," [p. 243] and speculate that "perhaps the anonymity of this venue is freeing" [p. 243]. And, 6% of posters returned to the site after their loved one had died, indicating that the chat room "may also serve as bereavement support." "One poster with cancer specifically stated that she was introducing her husband to the chat room so that he could find support there after her death" [p. 243]. Indeed, as a result of this study, a bereavement chat room was added to the pancreatic cancer web site.
The authors suggest that online surveys may provide efficient feedback from Internet users about how sites may help meet spiritual needs, but they offer their own suggestions:
Perhaps spiritual music and selections from scripture and other sacred literature could be added to cancer information Web sites as additional sources of spiritual support to be used by individuals who access the site or to be shared and reflected upon with others in the chat rooms of the sites that have this function. Different modules could be added to Web sites that would support usersí spiritual interaction. For example, a separate prayer intention page could be set up on the site similar to prayer intention books in many churches that allow members of the faith community to join in praying for the needs of others in the community. [p. 243]The mentioning of "prayer intention books" is striking, because such books of blank pages are available in many hospital chapels for patients and family members to offer their thoughts, prayers, and requests for prayers--and what people offer is often profound and deeply heartfelt. It may be that the potential for spiritual sharing via these books might find further realization online through Pastoral Care Department sites. (These chapel books themselves have long seemed to me and to some of my colleagues to be a rich source for study.)
The article does not mention chaplains or the particular possibility of linking a hospitalís disease-oriented sites to the same hospitalís Department of Pastoral Care or to other chaplaincy resources like those available through associated hospice programs. Still, my own recent search of the very chat room that was the focus of this research (http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT) revealed a number of references to chaplains.
Suggestions for the Use of the Article for Discussion in CPE
This article illustrates how a study may work with data already collected, and it is an example of basic qualitative methodology, but its most practical use with CPE students may be as a discussion-starter for the subject of how the Internet may be part of patents' and families' experience of illness and treatment and whether their spiritual support is so affected. (In this case, students may have more familiarity with chat rooms than do supervisors.) Students may also be challenged to think about the observation that chat rooms can provide a "freeing" anonymity [--see p. 343] and compare this to their own experiences of what makes patients feel safe to delve into deeply personal spiritual matters during pastoral visits (including how the fact that chaplains are usually unconnected to a patient's broader life and social network can facilitate free sharing). The study may even provide an opportunity to involve information technology staff in CPE discussion.
Related Items of Interest:
Bunde, M., Suls, J., Martin, R. and Barnett, K. [University of Iowa]. "Hystersisters online: social support and social comparison among hysterectomy patients on the internet." Annals of Behavioral Medicine 31, no. 3 (June 2006): 271-278. ["On the Web site, information and advice...was sought significantly more than emotional or esteem support (p< .01). For issues involving spiritual or partner matters versus factual issues connected to the hysterectomy, patients expressed greater interest in communicating with a patient who shared their values even if they were not more knowledgeable." (--from the abstract)]
Coleman, J., Olsen, S. J., Sauter, P. K., Baker, D., Hodgin, M. B., Stanfield, C., Emerling, A., Hruban, R. H. and Nolan, M. T. [Johns Hopkins Hospital, School of Nursing, Johns Hopkins University, Baltimore, MD]. "The effect of a Frequently Asked Questions module on a pancreatic cancer Web site patient/family chat room." Cancer Nursing 28, no. 6 (November-December 2005): 460-468. [In this study (which led to the research featured this month), "spiritual support" was a "readily apparent category" (p. 464) after initial thematic analysis of postings to a pancreatic cancer support site. The issue is addressed briefly on p. 465.]
Herman, J., Mock, K., Blackwell, D. and Hulsey, T. [College of Nursing, University of South Carolina, Columbia]. "Use of a pregnancy support web site by low-income African American women." JOGNN - Journal of Obstetric, Gynecologic, & Neonatal Nursing 34, no. 6 (November-December 2005): 713-720. [Nineteen women participated in this study which tracked their use of a Healthy Pregnancy site from December 2001 to August 2003. The bulletin board was the most frequently visited section/page of the site (excluding the home page), followed by the pages for pregnancy growth and development, ask-a-nurse, ultrasound, stories about pregnant women, and spirituality (--see p. 716).]
Klemm, P., Reppert, K. and Visich, L. "A nontraditional cancer support group: the Internet." Computers in Nursing 16, no. 1 (January-February 1998): 31-66. [In spite of this study's early date--in relation to the development of the Internet--the authors found prayer to be one of the key themes in messages posted to an Internet Cancer Center Support Group (in June 1996 and January 1997).]
Lieberman, M. A., Golant, M., Giese-Davis, J., Winzlenberg, A., Benjamin, H., Humphreys, K., Kronenwetter, C., Russo, S. and Spiegel, D. [Department of Psychiatry, University of California at San Francisco]. "Electronic support groups for breast carcinoma: a clinical trial of effectiveness." Cancer 97, no. 4 (February 15, 2003): 920-925. [Thirty-two women, recruited January-May 2000, participated in the study's electronic support groups. Among the findings: "Öafter 16 weeks of intervention, breast carcinoma patients reported decreased depression symptoms (according to the CES-D) and reactions to pain (Reactions), and demonstrated a trend toward increasing in several areas of posttraumatic growth (according to PTGI), expressing somewhat more zest for life (seeing New Possibilities) and deepening their spiritual lives (Spirituality)" (--see p. 924).]
[ADDED 7/6/07]: Shaw, B., Han, J. Y., Kim, E., Gustafson, D., Hawkins, R., Cleary, J., McTavish, F., Pingree, S., Eliason, P. and Lumpkins, C. [The Centre of Excellence in Cancer Communication Research, University of Wisconsin-Madison]. "Effects of prayer and religious expression within computer support groups on women with breast cancer." Psycho-Oncology 16, no. 7 (July 2007): 676-687. [(Abstract:) Research indicates that two common ways breast cancer patients or women with breast cancer cope with their diagnosis and subsequent treatments are participating in computer support groups and turning to religion. This study is the first we are aware of to examine how prayer and religious expression within computer support groups can contribute to improved psychosocial outcomes for this population. Surveys were administered before group access and then 4 months later. Message transcripts were analyzed using a word counting program that noted the percentage of words related to religious expression. Finally, messages were qualitatively reviewed to better understand results generated from the word counting program. As hypothesized, writing a higher percentage of religion words was associated with lower levels of negative emotions and higher levels of health self-efficacy and functional well-being, after controlling for patients' levels of religious beliefs. Given the proposed mechanisms for how these benefits occurred and a review of the support group transcripts, it appeared that several different religious coping methods were used such as putting trust in God about the course of their illness, believing in an afterlife and therefore being less afraid of death, finding blessings in their lives and appraising their cancer experience in a more constructive religious light.]
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