June 2021 Article of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Woggon, F., Arlyck, M., Maddox Hill, S. and Small Stokes, L. "The development of an outcome oriented and research informed spiritual care assessment and documentation form for the electronic health record in an adult hospital setting." Journal of Health Care Chaplaincy (2021): online ahead of print, 5/13/21. 15pp.
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. References are to manuscript [MS] page numbers.]
SUMMARY and COMMENT: This month's article describes how chaplains at an adult, academic, Level 1 trauma center -- the University Medical Center (UMC) in Louisville, KY -- intentionally brought knowledge from research alongside that of clinical expertise in order to develop a documentation process for the Electronic Medical Record (EHR). The authors' goal was "to capture and communicate the unique spiritual experience of patients and the work of chaplains in the context of interdisciplinary care through assessment, a narrative of interventions, and an outcome oriented plan of care" [MS p. 3]. As such, the article proposes a specific form for documentation, but perhaps just as importantly it implicitly models the application of insights from research to inform and shape, if not necessarily drive, a chaplaincy task.
In 2017, UMC was in an institutional position to build a new spiritual care documentation form in the EHR, in place of an older form that the department considered lacking.
The new form would serve the needs of the department and reflect chaplains' clinical practice and the academic context, and it would be informed by research evidence about the assessment process, assessment categories, and specific aspects of spirituality in the context of illness. The form was to integrate an assessment and be outcome oriented, and its use was to be simplified with clear implications for workflow. Furthermore, it was not only to be descriptive about chaplains' care for patients but also prescriptive regarding the process and provision of spiritual care. [MS p. 4]
The expectation was that "the form would increase chaplains' intentionality in structuring their spiritual care approach and therapeutic conversations in order to gather needed information and implement interventions accordingly" [MS p. 4].
The task began with defining spirituality in the context of illness and treatment. The authors turned to the Spirituality & Health literature and settled on a 2009 consensus conference definition [--see Related Items of Interest, §I, below], which was appreciated as "the product of a robust and principled interprofessional discernment process ...by a representative and diverse group of experts in health care and spiritual care," and based upon "a growing body of literature about spirituality in health care" [MS p. 4]. This definition also appealed to the authors for its suggestion of two conceptual themes that would be central to the new UMC documentation process: meaning-making and connectedness. In fact, these two domains were to be so valued by the developers of the UMC form that a subsequent revision of the definition in 2013 by the same consensus project organizers was not adopted because it omitted the theme of connectedness.
Next, the authors created "a Spiritual Needs and Assets Profile (SNAP) that documents need indicators as well as assets or resources regarding patients' meaning-making activity or capability and regarding their experience of connectedness in various ways" [MS p. 5]. The instrument's items were organized around the "two focal points of the definition of spirituality" [MS p. 5] and were identified in their particulars "through clinical expertise and experience and through published research evidence" [MS p. 5]. The items of the final documentation screen are nicely presented in tables on MS p. 5. In addition to check-boxes for various patient needs and assets, a box for a chaplain's free-text summary is an option. For a list of publications from the Spirituality & Health literature that are cited as informing the content of the SNAP, see Related Items of Interest, §VIII, below. (Note: the present SNAP unfortunately shares the same acronym with the Spiritual Needs Assessment for Patients instrument that was created by Dr. Rashmi K. Sharma, at Northwestern University and was the subject of our July 2012 Article-of-the-Month feature.)
The authors caution about its use:
The SNAP is not designed to be used as a checklist with patients but rather provides interpretive lenses for chaplains as they invite and listen to patients' stories about their illness and spiritual condition. It is one of the elements of the documentation form that is not only descriptive but also prescriptive, in that it requires chaplains to listen for certain themes in a patient's story and interpret therapeutic communication through the categories of meaning-making and connectedness. It must be said, however, that the profile is not designed to instill a habit of selective listening. Rather, it was created as a tool for chaplains to listen actively and intentionally to patients' stories and gather meaningful information that can inform care giving and therapeutic interventions. [MS p. 7]
The question of whether SNAP actually avoids operating restrictively in chaplains' minds is beyond the scope of the present article but surely would be a focus of necessary research on the SNAP itself. The authors explicitly address the need for research on the validity and reliability of the SNAP, as well as on the effectiveness of the documentation form as a whole, at the conclusion of the article [--see MS p. 12].
The UMC form revolves around the SNAP, but it contains three other sections, beginning with a General Information section that includes a spiritual screening tool. For the screening, the authors considered but decided against incorporating the Brief RCOPE [--see Related Items of Interest, §II, below], in spite of its establishment in spirituality research, instead opting for the empirically grounded Rush Protocol [--see Related Items of Interest, §III, below], albeit their own customization of it. Whereas the Rush Protocol asks a historical question of whether there has ever been a time that religion/spirituality was important, if the patient has indicated that religion/spirituality are currently not important, the present authors instead ask, "What gives meaning/helps you cope?" This customization seems to speak to the role of the research-based literature in the authors' minds as informing but not necessarily directing their decisions. Changing the content of the Rush Protocol theoretically affects its validity and reliability, but the Protocol's basic ideas are taken as promising for the present purpose. The reasons for this are explained [--see MS p. 8], and customization of instruments is relatively common in the field of Spirituality & Health, but adaptation optimally calls for new psychometric testing. In the event the screening signals that the patient's sense of strength/comfort from religion/spirituality or whatever gives the person meaning is "less than is needed" or "none at all," the SNAP assessment is required --an example of the prescriptive aspect of the documentation process. Other elements of the General Information section include data about religious affiliation and set of checklists (with free-text options) regarding the type of the contact, people involved, referral source, and 15 options for the care provided. [See Table 4 on MS p. 9.]
A third section consists of a Spiritual Care Note, "which provides chaplains the opportunity to enter in free text a narrative description of the spiritual care encounter, any interventions employed, and the outcome" [MS p. 9]. Here, the authors draw especially upon Gordon Hilsman's 2017 work, Spiritual Care in Common Terms: How Chaplains Can Effectively Describe the Spiritual Needs of Patients in Medical Records. (Hilsman, it should be noted, combines his own professional experience with knowledge from research in order to address his subject.) Intriguingly, the authors opted away from a research-based taxonomy developed by Kevin Massey and associates that has been adopted by quite a number of chaplaincy departments but instead decided to use the Massey, et al. taxonomy "for teaching and coaching purposes" [MS p. 10; and see Related Items of Interest, §IV, below.]. They admit to certain disadvantages of the free-text format, among them the "inability to utilize it for data collection," but they comment: "[T]he intent to capture the unique dynamics of a spiritual care encounter and a patient's spiritual experience of their illness was a priority for us over the ability to capture data and to generate reports through standardized selections for interventions" [MS p. 10].
The fourth and last section of the documentation is a Plan of Care for follow-up on issues identified through the SNAP. This section emphasizes outcomes from chaplains' interventions, with each need marked as either "In Progress" or "Completed." This plan of care is shared among all contributing chaplains. However, the authors express a concern:
...[I]t should not constitute a hidden agenda on part of chaplains or other members of the [Interdisciplinary Team] in relationship to patients and those they determine are their closest support. Rather, patients have the right to be aware of their spiritual treatment, just as they have the right to be informed of any other treatments. We believe that the ethical mandate for "informed consent" applies to spiritual care in the same way as it applies to medical or psychological care. [MS p. 11].
The article notes at the outset the importance of documentation for chaplaincy as a profession, citing a 2020 book, Charting Spiritual Care: The Emerging Role of Chaplaincy Records in Global Health Care [--see Related Items of Interest, §VI, below], and it ends with a clear statement: "Less than professional documentation...will likely not contribute much to interdisciplinary communication and care nor to the professional reputation of chaplains" [MS p. 12].
We suggest that an outcome oriented spiritual care documentation form for the EHR, which is informed by research and reflects interdisciplinary consensus about spiritual care as well the clinical expertise of chaplains, can achieve several goals. First and foremost, it can describe to the IDT the unique illness related experience of the patient as a spiritual person with needs and resources, and it can do so through agreed upon interpretive frames and descriptive categories that are informed by evidence. It also can create and support professional intentionality by requiring chaplains to gather and document certain information and formulate outcomes for spiritual care. Finally, an outcome oriented documentation form can assist chaplains to structure initial, therapeutic conversations and can create a workflow for the process of spiritual care.
A few observations from this reader: First, the authors show great awareness of and respect for research, but while their project is proactively informed by empirical investigation, it seems ultimately driven by clinical experience. To one degree or another, this may reflect accurately on the state of research in Spirituality & Health, where the great amount of empirical evidence is increasingly informative but in most instances still appears insufficient to override systematically a chaplain's experienced wisdom. By the same token, the need to create documentation that can be mined easily for empirical analysis must compete with a need to try to capture the richness of chaplaincy encounters, which seems to call for narrative approaches. Hence, the decision for the inclusion of a Spiritual Care Note instead of a standardized format for clinical interventions, even though standardized schema for interventions may be used in the background for teaching and coaching. The authors seem to be working practically and carefully with their priorities, and their compromises may strike other chaplains variously. Second, there is a critical comment on MS p. 5 about the interchangeability of the terms assessment and diagnosis, focusing on a 1993 work by Fitchett, and they want to point out the distinction between the terms. To this reader's understanding, though, Fitchett used the terms together only after qualifying that chaplains' should not consider diagnosis as medicine does (i.e., focusing purely on problems) but in light of both problems and resources. Third, in relation to our authors' comment about the need for informed consent in spiritual care, they astutely note the increasing access that patients have to medical records including chaplains' documentation, especially in the wake of the 21st Century Cures Act [--see MS p. 11]. The effects of patients' access to medical records has been shown to be largely positive but not universally so [--see Related Items of Interest, §V, below], but there has not been study of how patients may experience documentation by chaplains differently from other members of the care team. The full effect on chaplains regarding patient access to documentation remains an open question, though many chaplains' reservations about charting in general have been a longstanding hurdle in the documentation movement. Finally, the article is supplemented by an appendix: "Examples for Outcomes and Interventions Specific to Need Indicators in the Spiritual Needs and Assets Profile (SNAP)." In this reader's opinion, this appendix deserves greater attention, both with regard to its own development and as a resource for making connections between Need Indicators, Possible Outcomes, and Possible Interventions.
Whether or not the documentation form proposed here appears useful to other chaplaincy departments, it is presented with enough clarity to foster constructive discussion about documentation, its process, how research should inform it, and how it should play into research analyses. The article's bibliography of 42 citations provides basic reinforcement of the text and good points of departure for additional reading.
Suggestions for Use of the Article for Student Discussion:
This month's article would seem to be of interest mostly to students who are engaged specifically with the subject of documentation. As part of a group consideration of documentation, however, the article shows well how research knowledge can be brought to bear and suggests how documentation may be the object of study. The group might be asked, "Where are the points along the way when the department at UMC were helped by the insights of research?" and "How was the documentation form made to be conducive to empirical analysis?" What do the chaplains think about using checkboxes vs. free text in documentation? What do they think of the authors' statement that the checkboxes of the SNAP are intended as "interpretive lenses for chaplains as they invite and listen to patients' stories about their illness and spiritual condition" [MS p. 7]? When they have had the chance in the past to use checkbox forms, how often do they remember checking a box for "other" and then explaining? Special attention could be given to the emphasis on narrative in the section on the Spiritual Care Note [MS pp. 9-10]. What do they think of the mixed design of the overall documentation form? The group could focus on the items of the SNAP and whether the organizing themes of meaning-making and connectedness seem central to understanding spirituality in health care, in general. Are students clear about the distinction between a spiritual assessment and a spiritual screen? Are the students comfortable with documentation involving outcome measures connected to a Plan of Care? In the end, do students appreciate the value of documentation as professional practice worth the time and energy it takes to do it, or do they feel it to be a poor use of their time and energy? Do they value other chaplains' documentation? Finally, the authors talk about the historical tendency of chaplains to use "arcane code language or repeat[ed] formulaic descriptions" [MS p. 12] in documentation. Can the students give personal examples of what might fall into such a category?
Related Items of Interest:
I. The evolution of the definition of spirituality from the Consensus Conference for Improving the Quality of Spiritual Care as a Dimension of Palliative Care in 2009 through to the International Consensus Conference on Improving the Spiritual Dimension of Whole Person Care in 2013 is addressed in:
Puchalski, C. M., Vitillo, R., Hull, S. K. and Reller, N. "Improving the spiritual dimension of whole person care: reaching national and international consensus." Journal of Palliative Medicine 17, no. 6 (June 2014): 642-656. [(Abstract:) Two conferences, Creating More Compassionate Systems of Care (November 2012) and On Improving the Spiritual Dimension of Whole Person Care: The Transformational Role of Compassion, Love and Forgiveness in Health Care (January 2013), were convened with the goals of reaching consensus on approaches to the integration of spirituality into health care structures at all levels and development of strategies to create more compassionate systems of care. The conferences built on the work of a 2009 consensus conference, Improving the Quality of Spiritual Care as a Dimension of Palliative Care. Conference organizers in 2012 and 2013 aimed to identify consensus-derived care standards and recommendations for implementing them by building and expanding on the 2009 conference model of interprofessional spiritual care and its recommendations for palliative care. The 2013 conference built on the 2012 conference to produce a set of standards and recommended strategies for integrating spiritual care across the entire health care continuum, not just palliative care. Deliberations were based on evidence that spiritual care is a fundamental component of high-quality compassionate health care and it is most effective when it is recognized and reflected in the attitudes and actions of both patients and health care providers.] [This article was featured as our June 2014 Article-of-the-Month.]
II. The popular Brief RCOPE was developed from a longer RCOPE instrument, which is described in detail by Kenneth I. Pargament, Harold G. Koenig, and Lisa M. Perez in "The many methods of religious coping: development and initial validation of the RCOPE" [Journal of Clinical Psychology 56, no. 4 (April 2000): 519-543]. For a tabular summary of the Brief RCOPE, pairing its 14 items with religious coping methods and key religious functions, click HERE. For a formal and detailed introduction to, and explanation of, the measure, see:
Pargament, K., Feuille, M. and Burdzy, D. "The Brief RCOPE: current psychometric status of a short measure of religious coping." Religions 2, no. 1 (2011): 51-76. [The Brief RCOPE is a 14-item measure of religious coping with major life stressors. As the most commonly used measure of religious coping in the literature, it has helped contribute to the growth of knowledge about the roles religion serves in the process of dealing with crisis, trauma, and transition. This paper reports on the development of the Brief RCOPE and its psychometric status. The scale developed out of Pargament's (1997) program of theory and research on religious coping. The items themselves were generated through interviews with people experiencing major life stressors. Two overarching forms of religious coping, positive and negative, were articulated through factor analysis of the full RCOPE. Positive religious coping methods reflect a secure relationship with a transcendent force, a sense of spiritual connectedness with others, and a benevolent world view. Negative religious coping methods reflect underlying spiritual tensions and struggles within oneself, with others, and with the divine. Empirical studies document the internal consistency of the positive and negative subscales of the Brief RCOPE. Moreover, empirical studies provide support for the construct validity, predictive validity, and incremental validity of the subscales. The Negative Religious Coping subscale, in particular, has emerged as a robust predictor of health-related outcomes. Initial evidence suggests that the Brief RCOPE may be useful as an evaluative tool that is sensitive to the effects of psychological interventions. In short, the Brief RCOPE has demonstrated its utility as an instrument for research and practice in the psychology of religion and spirituality.] [This is an Open Access article.]
III. For more on the Rush Protocol, see the following articles. The one by Blanchard, Dunlap, and Fitchett examines the protocol in particular, and the others include the protocol in comparative analyses.
Bahraini, S., Gifford, W., Graham, I. D., Wazni, L., Bremault-Phillips, S., Hackbusch, R., Demers, C. and Egan, M. "The accuracy of measures in screening adults for spiritual suffering in health care settings: a systematic review." Palliative and Supportive Care 18, no. 1 (2020): 89-102.
[(Abstract:) OBJECTIVE: Guidelines for palliative and spiritual care emphasize the importance of screening patients for spiritual suffering. The aim of this review was to synthesize the research evidence of the accuracy of measures used to screen adults for spiritual suffering. METHODS: A systematic review of the literature. We searched five scientific databases to identify relevant articles. Two independent reviewers screened, extracted data, and assessed study methodological quality. RESULTS: We identified five articles that yielded information on 24 spiritual screening measures. Among all identified measures, the two-item Meaning/Joy & Self-Described Struggle has the highest sensitivity (82-87%), and the revised Rush protocol had the highest specificity (81-90%). The methodological quality of all included studies was low. SIGNIFICANCE OF RESULTS: While most of the identified spiritual screening measures are brief (comprised 1 to 12 items), few had sufficient accuracy to effectively screen patients for spiritual suffering. We advise clinicians to use their critical appraisal skills and clinical judgment when selecting and using any of the identified measures to screen for spiritual suffering.] [This article was featured ahead of print as our August 2019 Article-of-the-Month.]
Blanchard, J. H., Dunlap, D. A. and Fitchett, G.
"Screening for spiritual distress in the oncology inpatient: a quality improvement pilot project between nurses and chaplains." Journal of Nursing Management 20, no. 8 (December 2012): 1076-1084. [(Abstract:) AIMS: A quality improvement initiative of nursing/chaplain collaboration on the early identification and referral of oncology patients at risk of spiritual distress. BACKGROUND: Research shows that spiritual distress may compromise patient health outcomes. These patients are often under-identified, and chaplaincy staffing is not sufficient to assess every patient. The current nursing admission form with a question of 'Any spiritual practices that may affect your care?' is ineffective in screening for spiritual distress. METHOD(S): Ten nurses on the oncology unit were recruited and trained in a two-question screening tool to be utilized upon admission. RESULTS: Six nurses made referrals; a total of 14 patients. Four (28%) were at risk of spiritual distress and were assessed by the chaplains. CONCLUSIONS: Nurses are interested in the spiritual well-being of their patients and observe spiritual distress. They appreciate terminology/procedures by which they can assess more productively the spiritual needs of their patients and make appropriate chaplain referrals. IMPLICATIONS FOR NURSING MANAGEMENT: The use of a brief spiritual screening protocol can improve nursing referrals to chaplains. The better utilization of chaplains that this enables can improve patient trust and satisfaction with their overall care and potentially reduce the harmful effects of spiritual distress.] [This article was featured as our January 2013 Article-of-the-Month.]
King, S. D. W., Fitchett, G., Murphy, P. E., Pargament, K. I., Harrison, D. A. and Loggers, E. T. "Determining best methods to screen for religious/spiritual distress." Supportive Care in Cancer 25, no. 2 (February 2017): 471-479. [(Abstract:) PURPOSE: This study sought to validate for the first time a brief screening measure for religious/spiritual (R/S) distress given the Commission on Cancer's mandated screening for psychosocial distress including spiritual distress. METHODS: Data were collected in conjunction with an annual survey of adult hematopoietic cell transplantation (HCT) survivors. Six R/S distress screeners were compared to the Brief RCOPE, Negative Religious Coping subscale as the reference standard. We pre-specified validity as a sensitivity score of at least 85 %. As no individual measure attained this, two post hoc analyses were conducted: analysis of participants within 2 years of transplantation and of a simultaneous pairing of items. Data were analyzed from 1449 respondents whose time since HCT was 6 months to 40 years. RESULTS: For the various single-item screening protocols, sensitivity ranged from 27 (spiritual/religious concerns) to 60 % (meaning/joy) in the full sample and 25 (spiritual/religious concerns) to 65 % (meaning/joy) in a subsample of those within 2 years of HCT. The paired items of low meaning/joy and self-described R/S struggle attained a net sensitivity of 82 % in the full sample and of 87 % in those within 2 years of HCT but with low net specificities. CONCLUSIONS: While no single-item screener was acceptable using our pre-specified sensitivity value of 85 %, the simultaneous use of meaning/joy and self-described struggle items among cancer survivors is currently the best choice to briefly screen for R/S distress. Future research should validate this and other approaches in active treatment cancer patients and survivors and determine the best times to screen.] [This article was featured ahead of print as our November 2016 Article-of-the-Month.]
IV. For more on the taxonomy developed by Kevin Massey and colleagues in the Advocate Health System, see:
Massey, K., Barnes, M. J., Villines, D., Goldstein, J. D., Pierson, A. L., Scherer, C., Vander Laan, B. and Summerfelt, W. T. "What do I do? Developing a taxonomy of chaplaincy activities and interventions for spiritual care in intensive care unit palliative care." BMC Palliative Care 14 (2015): 10 [electronic journal article designation]. [(Abstract:) BACKGROUND: Chaplains are increasingly seen as key members of interdisciplinary palliative care teams, yet the specific interventions and hoped for outcomes of their work are poorly understood. This project served to develop a standard terminology inventory for the chaplaincy field, to be called the chaplaincy taxonomy. METHODS: The research team used a mixed methods approach to generate, evaluate and validate items for the taxonomy. We conducted a literature review, retrospective chart review, focus groups, self-observation, experience sampling, concept mapping, and reliability testing. Chaplaincy activities focused primarily on palliative care in an intensive care unit setting in order to capture a broad cross section of chaplaincy activities. RESULTS: Literature and chart review resulted in 438 taxonomy items for testing. Chaplain focus groups generated an additional 100 items and removed 421 items as duplications. Self-Observation, Experience Sampling and Concept Mapping provided validity that the taxonomy items were actual activities that chaplains perform in their spiritual care. Inter-rater reliability for chaplains to identify taxonomy items from vignettes was 0.903. CONCLUSIONS: The 100 item chaplaincy taxonomy provides a strong foundation for a normative inventory of chaplaincy activities and outcomes. A deliberative process is proposed to further expand and refine the taxonomy to create a standard terminological inventory for the field of chaplaincy. A standard terminology could improve the ways inter-disciplinary palliative care teams communicate about chaplaincy activities and outcomes.]
Sharma, V., Marin, D. B., Zhong, X., Mazumdar, M., Keogh, M., Costello, Z. and Jandorf, L. "Using the taxonomy: a standard vocabulary of chaplain activities." Journal of Health Care Chaplaincy 27, no. 1 (January-March 2021): 43-64. [(Abstract:) At present, the field of chaplaincy does not have a standardized vocabulary for the activities that chaplains conduct in different institutions and settings. This is a hindrance when making comparisons among various chaplain activities across institutions and drawing conclusions from the data reported. Recently a standardized vocabulary, the Advocate Taxonomy, was developed by a group of chaplains and there was consensus agreement that the taxonomy represented the gamut of chaplain activities. However, to date, no data with adults has been presented to support the conclusions reached by the taxonomy development team. This article is the first effort to examine which taxonomy items are most commonly used in the acute care setting. It further explores the differences in the use of the taxonomy items in different settings (ICU vs. Non-ICU), the type of chaplain visit (Initial vs. Follow-up) and the patient's discharge status (Expired vs. discharged alive).]
V. Patients' experience of access to their own medical records is a rich topic that is becoming increasingly pertinent to chaplains' documentation. The following new literature review out of Britain gives some context to the subject in general.
Tapuria, A., Porat, T., Kalra, D., Dsouza, G., Xiaohui, S. and Curcin, V. "Impact of patient access to their electronic health record: systematic review." Informatics for Health and Social Care 46, no. 2 (June 2, 2021): 192-204. [(Abstract:) Patient access to their own electronic health records (EHRs) is likely to become an integral part of healthcare systems worldwide. It has the potential to decrease the healthcare provision costs, improve access to healthcare data, self-care, quality of care, and health and patient-centered outcomes. This systematic literature review is aimed at identifying the impact in terms of benefits and issues that have so far been demonstrated by providing patients access to their own EHRs, via providers' secure patient portals from primary healthcare centers and hospitals. Searches were conducted in PubMed, MEDLINE, CINHAL, and Google scholar. Over 2000 papers were screened and were filtered based on duplicates, then by reading the titles and finally based on their abstracts or full text. In total, 74 papers were retained, analyzed, and summarized. Papers were included if providing patient access to their own EHRs was the primary intervention used in the study and its impact or outcome was evaluated. The search technique used to identify relevant literature for this paper involved input from five experts. While findings from 54 of the 74 papers showed positive outcome or benefits of patient access to their EHRs via patient portals, 10 papers have highlighted concerns, 8 papers have highlighted both and 2 have highlighted absence of negative outcomes. The benefits range from re-assurance, reduced anxiety, positive impact on consultations, better doctor-patient relationship, increased awareness and adherence to medication, and improved patient outcomes (e.g., improving blood pressure and glycemic control in a range of study populations). In addition, patient access to their health information was found to improve self-reported levels of engagement or activation related to self-management, enhanced knowledge, and improve recovery scores, and organizational efficiencies in a tertiary level mental health care facility. However, three studies did not find any statistically significant effect of patient portals on health outcomes. The main concerns have been around security, privacy and confidentiality of the health records, and the anxiety it may cause amongst patients. This literature review identified some benefits, concerns, and attitudes demonstrated by providing patients' access to their own EHRs. This access is often part of government strategies when developing patient-centric self-management elements of a sustainable healthcare system. The findings of this review will give healthcare providers a framework to analyze the benefits offered by promoting patient access to EHRs and decide on the best approach for their own specialties and clinical setup. A robust cost-benefit evaluation of such initiatives along with its impact on major stakeholders within the healthcare system would be essential in understanding the overall impact of such initiatives. Implementation of patient access to their EHRs could help governments to appropriately prioritize the development or adoption of national standards, whilst taking care of local variations and fulfilling the healthcare needs of the population, e.g., UK Government is aiming to make full primary care records available online to every patient. Ultimately, increasing transparency and promoting personal responsibility are key elements of a sustainable healthcare system for future generations.]
VI. The 2020 book,
Charting Spiritual Care: The Emerging Role of Chaplaincy Records in Global Health Care, edited by Simon Peng-Keller and David Neuhold, is available as an open access publication at https://link.springer.com/content/pdf/10.1007%2F978-3-030-47070-8.pdf .
VII. Our authors make passing reference to "the Squire 2.0 reporting format" [MS p. 3], without explanation. SQUIRE stands for Standards for QUality Improvement Reporting Excellence, and official information about this may be found at www.squire-statement.org . Also, the following article may be useful to understanding background and practical aspects of SQUIRE, in general.
Goodman, D., Ogrinc, G., Davies, L., Baker, G.R., Barnsteiner, J., Foster, T. C., Gali, K., Hilden, J., Horwitz, L., Kaplan, H. C., Leis, J., Matulis, J. C., Michie, S., Miltner, R., Neily, J., Nelson, W. A., Niedner, M., Oliver, B., Rutman, L., Thomson, R. and Thor, J. "Explanation and elaboration of the SQUIRE (Standards for Quality Improvement Reporting Excellence) Guidelines, V.2.0: examples of SQUIRE elements in the healthcare improvement literature." BMJ Quality and Safety 25, no. 12 (2016): e7 [electronic journal article designation]. [(Abstract:) Since its publication in 2008, SQUIRE (Standards for Quality Improvement Reporting Excellence) has contributed to the completeness and transparency of reporting of quality improvement work, providing guidance to authors and reviewers of reports on healthcare improvement work. In the interim, enormous growth has occurred in understanding factors that influence the success, and failure, of healthcare improvement efforts. Progress has been particularly strong in three areas: the understanding of the theoretical basis for improvement work; the impact of contextual factors on outcomes; and the development of methodologies for studying improvement work. Consequently, there is now a need to revise the original publication guidelines. To reflect the breadth of knowledge and experience in the field, we solicited input from a wide variety of authors, editors and improvement professionals during the guideline revision process. This Explanation and Elaboration document (E & E) is a companion to the revised SQUIRE guidelines, SQUIRE 2.0. The product of collaboration by an international and interprofessional group of authors, this document provides examples from the published literature, and an explanation of how each reflects the intent of a specific item in SQUIRE. The purpose of the guidelines is to assist authors in writing clearly, precisely and completely about systematic efforts to improve the quality, safety and value of healthcare services. Authors can explore the SQUIRE statement, this E & E and related documents in detail at http://www.squire-statement.org.] [This article is available freely online from the journal.]
VIII. The publications that our authors cite supporting their SNAP items in the domains of meaning-making and connectedness:
Balboni, T. and Balboni, M. "The spiritual event of serious illness." Journal of Pain and Symptom Management 56, no. 5 (November 2018): 816-822. [(Abstract:) Thought leaders in palliative care have long recognized the spiritual implications of illness, including Dame Cicely Saunders' groundbreaking concept of suffering as comprising physical, emotional, social, and spiritual sources of pain. However, despite such recognition, spirituality remains an oft-neglected component of the biopsychosocial spiritual model of caregiving in serious illness. We aim in this article to highlight, through an in-depth account of patients' experiences and attitudes, the concept of illness as a spiritual event.] [This article was featured as our November 2018 Article-of-the-Month.]
Breitbart, W. S. and Poppito, S. R. "Individual Meaning-Centered Psychotherapy for Patients with Advanced Cancer: A Treatment Manual.." Oxford & New York: Oxford University Press, 2014. [(Chapters:) Concepts and Sources of Meaning; Cancer and Meaning: Identity before and after Cancer Diagnosis; Historical Sources of Meaning: Life as a Living Legacy: A Legacy That Has Been Given and a Legacy That One Lives and Will Give; Attitudinal Sources of Meaning: Encountering Life's Limitations; Creative Sources of Meaning: Creativity, Courage, and Responsibility; Experiential Sources of Meaning: Connecting with Life through Love, Beauty, and Humor; and Transitions: Final Reflections and Hopes for the Future.]
Campo, R. A., Wu, L. M., Austin, J., Valdimarsdottir, H. and Rini, C. "Personal resilience resources predict post-stem cell transplant cancer survivors' psychological outcomes through reductions in depressive symptoms and meaning-making." Journal of Psychosocial Oncology 35, no. 6 (November-December 2017): 666-687. [(Abstract:) This longitudinal study examined whether post-transplant cancer survivors (N = 254, 9 months to 3 years after stem cell transplant treatment) with greater personal resilience resources demonstrated better psychological outcomes and whether this could be attributed to reductions in depressive symptoms and/or four meaning-making processes (searching for and finding reasons for one's illness; searching for and finding benefit from illness). Hierarchical linear regression analyses examined associations of survivors' baseline personal resilience resources (composite variable of self-esteem, mastery, and optimism), which occurred an average of 1.7 years after transplant, and 4-month changes in psychological outcomes highly relevant to recovering from this difficult and potentially traumatic treatment: post-traumatic stress disorder (PTSD) symptoms and purpose in life. Boot-strapped analyses tested mediation. Greater personal resilience resources predicted decreases in PTSD stress symptoms (b = -0.07, p = 0.005), mediated by reductions in depressive symptoms (b = -0.01, 95% CI: -0.027, -0.003) and in searching for a reason for one's illness (b = -0.01, 95% CI: -0.034, -0.0003). In addition, greater resilience resources predicted increases in purpose in life (b = 0.10, p < 0.001), mediated by reductions in depressive symptoms (b = 0.02, 95% CI: 0.003, 0.033). Having greater personal resilience resources may promote better psychological adjustment after a difficult cancer treatment, largely because of improvements in depressive symptoms, although decreased use of a potentially maladaptive form of meaning-making (searching for a reason for one's illness) was also important for reducing PTSD symptoms.]
Coward, D. D. and Kahn, D. L. "Resolution of spiritual disequilibrium by women newly diagnosed with breast cancer." Oncology Nursing Forum 31, no. 2 (March-April 2004): E24-31. [(Abstract:) PURPOSE/OBJECTIVES: To describe the experience of restoring and maintaining spiritual equilibrium over a 14-month period by women newly diagnosed with breast cancer. RESEARCH APPROACH: Qualitative approach, longitudinal design. SETTING: Urban breast cancer resource center. PARTICIPANTS: 10 women initially one to five months from diagnosis, 5 of whom attended an eight-week self-transcendence theory-based breast cancer support group. METHODOLOGIC APPROACH: Audiotaped interviews conducted within five months of diagnosis, two to three months later, and one year after that. Narratives were analyzed using Colaizzi's phenomenologic approach. MAIN RESEARCH VARIABLES: Spiritual disequilibrium resolution, breast cancer, self-transcendence. FINDINGS: Spiritual disequilibrium characteristics, as described in several studies of women with breast cancer, were fear of dying and a sense of aloneness in a struggle to maintain self-identity. Disequilibrium triggered all participants to reach outwardly for information and support from other people and faith resources and to reach inwardly to examine life values. Shortly after diagnosis, and continuing throughout the study period, most participants also reached outwardly to support others and conduct breast cancer advocacy work. CONCLUSION: Resolving spiritual disequilibrium for women with newly diagnosed breast cancer means restoring a sense of connection to self, others, and/or a higher power. Self-transcendence views and behaviors evolving over time help women to restore their sense of connectedness, maintain hope for a future, and find renewed purpose and meaning. INTERPRETATION: An initial breast cancer diagnosis may be associated with spiritual disequilibrium that can be as problematic as the physical effects of cancer and cancer treatment. Women restore equilibrium through resolving their sense of disconnectedness and regaining a positive self-identity.]
Emmons, R. A. and McCullough, M. E. (eds.). "The psychology of gratitude." Oxford and New York: Oxford University Press, 2004. [(Chapters:) The Psychology of Gratitude; Gratitude in the History of Ideas; Gratitude in Judaism; The Blessings of Gratitude; Gratitude in Modern Life; The Gratitude of Exchange and the Gratitude of Caring; Parent of the Virtues?; Gratitude, Like Other Positive Emotions, Broadens and Builds; Gratitude and Subjective Well-Being; Gratitude and Gift Exchange; Primate Social Reciprocity and the Origin of Gratitude; The Grateful Heart; Gratitude; Gratitude as Thankfulness and as Gratefulness]
Exline, J. J. and Rose, E. D. "Religious and spiritual struggles." Pp. 380-398 in Paloutzian, R. F. and Park, C. L. (eds.), Handbook of the psychology of religion and spirituality 2nd Edition. London, New York: Guildford Press, 2013. [(Abstract:) In this chapter we frame religious and spiritual struggles (sometimes shortened to struggles) as experiences of conflict or distress that center on religious or spiritual issues. To maintain a tight focus, we attend primarily to struggles that people experience on the individual level. However, it is important to note, consistent with the multilevel interdisciplinary paradigm, that struggle could also be analyzed at the level of dyads, groups, organizations, or cultures. Some of the struggles we consider here can be termed "divine struggles": They focus specifically on people's beliefs, perceptions, or emotions involving God or a higher power. For example, people may fear punishment if they believe that they have offended God, and they may experience anger if they hold God responsible for unjust suffering. Although the religious/ spiritual domain often focuses on beliefs about a deity or transcendent force, it may also be seen as having a dark side: forces of supernatural evil. For example, people may be troubled by events attributed to the devil. Other struggles are intrapersonal, as when people face their own moral failures, and interpersonal, when disagreements or offenses arise in a religious context.]
Exline, J., Grubbs, J. B., Pargament, K. I. and Yali, A. M."The Religious and Spiritual Struggles Scale: development and initial validation." Psychology of Religion and Spirituality 6, no. 3 (August 2014): 208-222. [(Abstract:) Many people experience struggle around religious and spiritual aspects of life, as shown in a steadily growing body of research. A need now exists for more comprehensive, reliable, concise measurement of religious and spiritual (r/s) struggles through a scale that covers multiple domains. This article describes the development and initial validation of a 26-item measure, the Religious and Spiritual Struggles (RSS) Scale. The measure assesses six domains of r/s struggle: divine (negative emotion centered on beliefs about God or a perceived relationship with God), demonic (concern that the devil or evil spirits are attacking an individual or causing negative events), interpersonal (concern about negative experiences with religious people or institutions; interpersonal conflict around religious issues), moral (wrestling with attempts to follow moral principles; worry or guilt about perceived offenses by the self), doubt (feeling troubled by doubts or questions about one's r/s beliefs), and ultimate meaning (concern about not perceiving deep meaning in one's life). Study 1 used factor analytic techniques in two adult samples (Ns = 400 and 483) to refine the item pool for the RSS. Study 2, which sampled 1141 undergraduates, showed very good fit for a six-factor model using confirmatory factor analysis. Study 2 also provided evidence of convergent, discriminant and predictive validity by relating RSS scores to measures of religiousness, r/s struggle and mental health. Several potentially important demographic differences emerged on the RSS. For example, undergraduates without committed romantic relationships and those who self-identified as homosexual reported greater r/s struggles across multiple domains.]
Littooij, E., Dekker, J., Vloothuis, J., Leget, C. J. W. and Widdershoven, G. A. M. "Global meaning in people with stroke: content and changes.." Health Psychology Open 3, no. 2 (July 2016): 2055102916681759 [electronic journal article designation]. [(Abstract:) After a traumatic event like a stroke, people need to find meaning and control again. This study enhances knowledge on one of the driving principles behind meaning-making processes: global meaning. Global meaning refers to individuals' general orienting systems, comprising fundamental beliefs and life goals. Little is known about global meaning in people with stroke and whether global meaning changes after stroke. In this qualitative study, five aspects of global meaning were found: core values, relationships, worldview, identity and inner posture. Continuity in all aspects was reported, but worldview, identity and inner posture were also subjected to change.] [This article is available freely online from the journal.]
Pargament, K. I. "The Psychology of Religious Coping: Theory, Research, Practice." New York and London: Guilford Press, 1997. [(From the jacket:) When faced with a crisis, why do some people turn to religion to help them cope, while others turn away? Is religious belief merely a defense or a form of denial? Is spirituality a help or a hindrance in times of stress? Building a much-needed bridge between two different worlds of thought and practice--religion and psychology--this volume sensitively interweaves theory with first-hand accounts, clinical insight, and scientific research. The book underscores the need for greater sensitivity to religion and spirituality in the context of helping relationships, and suggests a range of ways that faith might be used more fully to help people in crisis.]
Park, C. L. "Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events." Psychological Bulletin 136, no. 2 (March 2010): 257-301. [(Abstract:) Interest in meaning and meaning making in the context of stressful life events continues to grow, but research is hampered by conceptual and methodological limitations. Drawing on current theories, the author first presents an integrated model of meaning making. This model distinguishes between the constructs of global and situational meaning and between "meaning-making efforts" and "meaning made," and it elaborates subconstructs within these constructs. Using this model, the author reviews the empirical research regarding meaning in the context of adjustment to stressful events, outlining what has been established to date and evaluating the strengths and weaknesses of current empirical work. Results suggest that theory on meaning and meaning making has developed apace, but empirical research has failed to keep up with these developments, creating a significant gap between the rich but abstract theories and empirical tests of them. Given current empirical findings, some aspects of the meaning-making model appear to be well supported but others are not, and the quality of meaning-making efforts and meanings made may be at least as important as their quantity. This article concludes with specific suggestions for future research. 334 references.]
Park, C. L. "The meaning making model: a framework for understanding meaning, spirituality, and stress-related growth in health psychology." European Health Psychologist 15, no. 2 (2013): 40-47. [(From the abstract:) Research on the topics of meaning, spirituality, and stress-related growth is proliferating, promising to illuminate these essential but relatively ignored aspects of human health and well-being. However, the sheer amount of information coming from disparate areas requires organization and integration. I propose here that the Meaning Making Model...is a useful theoretical framework for understanding these phenomena and their interrelations within health psychology. In this article, I use this model to frame a brief overview of current theory and research on meaning, spirituality, and growth within health psychology.] [This article is available freely online from the publisher.]
Balboni, T. and Balboni, M. "The spiritual event of serious illness." Journal of Pain and Symptom Management 56, no. 5 (November 2018): 816-822. [See the listing immediately above.]
Exline, J., Grubbs, J. B., Pargament, K. I. and Yali, A. M."The Religious and Spiritual Struggles Scale: development and initial validation." Psychology of Religion and Spirituality 6, no. 3 (August 2014): 208-222. [See the listing immediately above.]
Galloway, A. P. and Henry, M. "Relationship between social connectedness and spirituality and depression and perceived health status of rural residents." Online Journal of Rural Nursing and Health Care 14, no. 2 (2014): 43-79. [(Abstract:) PURPOSE: A number of factors impact an individual’s health, including the social, economic and physical environments surrounding the individual, as well as their personal characteristics and behaviors (World Health Organization, 2012a; United States Health and Human Services, 2011). Social factors, such as social norms, social support, and social interactions are known to have a strong impact on health, but are often omitted when looking at the overall health of an individual. Rural residents are vulnerable to poorer health outcomes because they often lack needed resources and have other risk factors for developing adverse physical and mental health outcomes. Lack of social resources in rural areas may lead to social isolation, which may contribute to poorer health outcomes observed in some of these residents. Little is known, however about the relationship of social determinants of health in rural residents and overall health outcomes. Therefore, the purpose of this research was to examine the relationships between 2 social determinants of health, social connectedness and spirituality, on the level of self-reported depression and perceived health in a rural population. SAMPLE: A convenience sample of rural residents in a western Colorado county. METHOD: Self-reported survey data collection with hierarchical multiple regression analyses. FINDINGS: The more socially connected a person felt, the better they perceived themselves as physically and mentally healthy. Additionally, the more socially connected the individual felt the less depressive symptoms they reported. Spiritual perspective was not found to correlate significantly with either self-reported depression or perceived health. CONCLUSION: We found that social connectedness is an important factor in the overall well-being of rural residents in this small convenience sample. This has significant implications for assessment of the health needs of rural residents and raises awareness of the need to provide opportunities for residents to become more socially active.] [This article is available freely online from the publisher.]
Shields, M., Kestenbaum, A. and Dunn, L. B. "Spiritual AIM and the work of the chaplain: a model for assessing spiritual needs and outcomes in relationship." Palliative and Supportive Care 13, no. 1 (February 2015): 75-89. [(Abstract:) OBJECTIVE: Distinguishing the unique contributions and roles of chaplains as members of healthcare teams requires the fundamental step of articulating and critically evaluating conceptual models that guide practice. However, there is a paucity of well-described spiritual assessment models. Even fewer of the extant models prescribe interventions and describe desired outcomes corresponding to spiritual assessments. METHOD: This article describes the development, theoretical underpinnings, and key components of one model, called the Spiritual Assessment and Intervention Model (Spiritual AIM). Three cases are presented that illustrate Spiritual AIM in practice. Spiritual AIM was developed over the past 20 years to address the limitations of existing models. The model evolved based in part on observing how different people respond to a health crisis and what kinds of spiritual needs appear to emerge most prominently during a health crisis. RESULTS: Spiritual AIM provides a conceptual framework for the chaplain to diagnose an individual's primary unmet spiritual need, devise and implement a plan for addressing this need through embodiment/relationship, and articulate and evaluate the desired and actual outcome of the intervention. Spiritual AIM's multidisciplinary theory is consistent with the goals of professional chaplaincy training and practice, which emphasize the integration of theology, recognition of interpersonal dynamics, cultural humility and competence, ethics, and theories of human development. SIGNIFICANCE OF RESULTS: Further conceptual and empirical work is needed to systematically refine, evaluate, and disseminate well-articulated spiritual assessment models such as Spiritual AIM. This foundational work is vital to advancing chaplaincy as a theoretically grounded and empirically rigorous healthcare profession.]