Data were analyzed from 369 questionnaires out of 2,351 sent between December 2015 and June 2016 to individuals who had received treatment six months previously at one of seven sites throughout Australia, and who had been visited by a PCP. The core of the survey consisted of the 18-item Lothian PROM [--given in Figure 1, MS p. 4], with questions about how the person felt during and after the pastoral visit and how the person would describe himself/herself "now" [--see Related Items of Interest, §I, below]. The instrument was customized to the Australian context by replacing the word chaplain with the term pastoral care practitioner. In addition, recipients were asked demographic questions, their length of stay, and the number of visits by a PCP; and they were given a space to write "...any comments you wish to make about how the PCP's input affected you" [MS p. 6].

Among the findings:

...[A]lmost all (96%) of participants "felt that they were listened to" all the time during the visit(s). The vast majority (94%) of participants felt that their "situation were understood and acknowledged" and 93% felt that their "faith and/or beliefs were valued." Slightly fewer participants (84%) felt that they "were able to talk about what were on their mind" and 64% felt that the PC visit(s) "focused on decisions about their health...." The patient reported outcomes of PC visits included: the patients felt they could be honest with themselves (83%), with a sense of peace (53%), a better perspective of their illness (60%), less anxiety (62%), and felt more in control (63%).... [MS p. 8]

Five factors were found to significantly impact on patient experiences which can provide guidance to PCPs in their encounters with patients. These include: having more PC visits; allowing the patient to talk about what was on their mind during this visit; helping the patient identify something to be hopeful about; focusing on decisions regarding their health care and supporting their belief in God/Higher Being if this was important to them. [MS p. 13]

The feedback from participants suggest that in many cases pastoral services extended beyond the emotional and spiritual care, with the pastoral care workers also taking on the roles of mediators and advocates and assisting with the organization of social support and other practical matters for patients postdischarge in conjunction with other health professionals [MS p. 13].

The patients and their families described the impact of these interactions as deep and lasting. Some described being able to change their attitudes to life or their illness as a result; others described the feelings of calm and comfort; and others articulated feelings of gratefulness and appreciation for the service that stayed with them postdischarge. [MS pp. 13-14].

The authors pay special attention to the responses of non-spiritual/non-religious participants, as only 72% said they believed in God/Higher Being, and only 56% said they saw themselves as spiritual or religious [--and see Items of Related Interest, §VI, below]. Even though there was some indication that patients who believed in God/Higher Being felt somewhat more that "their situation was understood and acknowledged" and that "their faith and/or belief were valued during the chaplain's visit(s)" [MS pp. 10-11],

...in general, participants who reported believing in God/Higher Being did not significantly differ in their experience during a pastoral care visit from those who did not believe in God/Higher Being. The vast majority of participants who did not believe still reported that they were "listened to" (92%), that they were "able to talk about what were on their mind" (80%), which is an important finding and speaks to inclusiveness of the pastoral care service. [MS p. 11, and see also p. 13]

Limits to the study include the six-month time frame (from hospitalization) for gathering the data, opening up the possibility of recall bias, though the authors explain that their "original intention was to recruit family members and an ethical requirement was not to approach family members under six months from the patient's death" [MS p. 14]. Another limitation lies in the low response rate of 21%, before an additional 128 questionnaires were excluded from the final analysis because respondents did not remember receiving a pastoral visit or because of concerns about the accuracy of data supplied by patients' relatives. While low response rates present a risk of skewing in the data, this reader nevertheless appreciated the ambition of the researchers in seeking a large sample size and their explicit caution in drawing conclusions.

This study is notable as well for shining a light on the Lothian PROM which was foundational to the development of the shorter (five-item) Scottish PROM. [See Items of related Interest, §I & §II, below.] Lobb and colleagues point out that "[r]esearch into the effect of [Pastoral Care] specifically on health care outcomes is a small and slowly growing field" [MS p. 3], and their work here makes a contribution on that front.

II.  The 18-item Lothian PROM served as the basis for the subsequent development of the shorter Scottish PROM. The latter asks how often over the last two weeks the person had felt, according to five items: "I could be honest with myself about how I was really feeling," "Anxious," "I had a positive outlook on my situation," "In control of my life," and "A sense of peace." For more on the Scottish PROM, see:

Snowden, A., Lobb, E. A., Schmidt, S., Swing, A. M., Logan, P. and Macfarlane, C. "'What's on your mind?' The only necessary question in spiritual care." Journal for the Study of Spirituality 8, no. 1 (2018): 19-33. [Around the world, chaplains provide specialist spiritual care for people with complex healthcare needs. If the nature of chaplain interventions was better understood then multidisciplinary colleagues could both improve their own skills in spiritual care and better understand when to refer people to chaplains. A survey was constructed to establish what aspects of the chaplain/patient relationship were most important for patients in Scotland and Australia. Outcomes were measured with the Scottish Patient Reported Outcome Measure (Scottish PROM). Results from 610 respondents showed the strongest correlation was between "being able to talk about what is on my mind" and the Scottish PROM (rs(452) = .451, p < .0005). "Being able to talk about what is on my mind" proved more important than being listened to, having faith/beliefs valued, or being understood. Given the importance placed on listening and understanding by clinicians, this original and counterintuitive finding goes some way to explaining the unique role and function of healthcare chaplaincy.] [NOTE: This article is by three of the authors of our featured article this month. The Journal for the Study of Spirituality may be difficult to access outside of Europe/UK.]

Snowden, A. and Telfer, I. "Patient reported outcome measure of spiritual care as delivered by chaplains." Journal of Health Care Chaplaincy 23, no. 4 (October-December 2017): 131-155. [(Abstract:) Chaplains are employed by health organizations around the world to support patients in recognizing and addressing their spiritual needs. There is currently no generalizable measure of the impact of these interventions and so the clinical and strategic worth of chaplaincy is difficult to articulate. This article introduces the Scottish PROM, an original five-item patient reported outcome measure constructed specifically to address this gap. It describes the validation process from its conceptual grounding in the spiritual care literature through face and content validity cycles. It shows that the Scottish PROM is internally consistent and unidimensional. Responses to the Scottish PROM show strong convergent validity with responses to the Warwick and Edinburgh Mental Well-Being Scale, a generic well-being scale often used as a proxy for spiritual well-being. In summary, the Scottish PROM is fit for purpose. It measures the outcomes of spiritual care as delivered by chaplains in this study. This novel project introduces an essential and original breakthrough; the possibility of generalizable international chaplaincy research.] [NOTE: See especially the table on pp. 23-25 of relevant research and its connection to PROM development.]

III.  For more on PROM development internationally, see the page on the subject from the European Research Institute for Chaplains in Healthcare (ERICH). Also, chaplains may be interested in an editorial: Handzo, G. F., Cobb, M., Holmes, C., Kelly, E. and Sinclair, S., "Outcomes for professional health care chaplaincy: an international call to action," Journal of Health Care Chaplaincy 20, no. 2 (2014): 43-53.

IV.  Patient reported outcomes were a topic for our October 2018 Article-of-the-Month: Sprik, P. J., Walsh, K., Boselli, D. M. and Meadors, P., "Using patient-reported religious/spiritual concerns to identify patients who accept chaplain interventions in an outpatient oncology setting," Supportive Care in Cancer (2018).

V.  Elizabeth A. Lobb, PhD, is Professor of Palliative Care (Allied Health) based at Calvary Health Care Kogarah, and is an Adjunct Professor in the Faculty of Medicine at the University of Notre Dame, Sydney. She is a co-author with Snowden, et al. on "'What's on your mind?' The only necessary question in spiritual care, cited above (§II), but among her other work, beyond the subject of PROMs or spiritual care, the following are just a few examples that may be of interest to chaplains.

Andriessen, K., Mowll, J., Lobb, E., Draper, B., Dudley, M. and Mitchell, P. B."'Don't bother about me.' The grief and mental health of bereaved adolescents." Death Studies 42, no. 10 (November- December 2018): 607-615. [(Abstract:) Death of a relative or friend is a potentially disruptive event in the lives of adolescents. To provide targeted help, it is crucial to understand their grief and mental health experiences. Thematic analysis of 39 semistructured telephone interviews yielded two themes: Grieving apart together and Personal growth. High self-reliance and selective sharing were common. Feelings of guilt and "why" questions seemed more pronounced among the suicide bereaved. There was strong evidence of personal growth, increased maturity, and capacity to deal with personal mental health/suicidality. Despite its devastating effects, experiencing a death can be a catalyst for positive mental health.]

Breen, L. J., O'Connor, M., Hewitt, L. Y. and Lobb, E. A. "The 'specter' of cancer: exploring secondary trauma for health professionals providing cancer support and counseling." Psychological Services 11, no. 1 (February 2014): 60-67. [Health professionals are vulnerable to occupational stress and tend to report high levels of secondary trauma and burnout; this is especially so for those working in "high-death" contexts such as cancer support and palliative care. In this study, 38 health professionals (psychologists, social workers, pastoral carers/chaplains, nurses, group facilitators, and a medical practitioner) who provide grief support and counseling in cancer and palliative care each participated in a semistructured interview. Qualitatively, a grounded theory analysis revealed four themes: (a) the role of health professionals in supporting people who are experiencing grief and loss issues in the context of cancer, (b) ways of working with patients with cancer and their families, (c) the unique qualities of cancer-related loss and grief experiences, and (d) the emotional demands of the work and associated self-care. The provision of psychological services in the context of cancer is colored by the specter of cancer, an unseen yet real phenomenon that contributes to secondary trauma and burnout. The participants' reported secondary trauma has serious repercussions for their well-being and may compromise the care they provide. The findings have implications for the retention and well-being of personnel who provide psychosocial care in cancer and the quality and delivery of services for people with cancer and their families.]

Green, A., Jerzmanowska, N., Green, M. and Lobb, E. A. "'Death is difficult in any language': A qualitative study of palliative care professionals' experiences when providing end-of-life care to patients from culturally and linguistically diverse backgrounds." Palliative Medicine 32, no. 8 (September 2018): 1419-1427. [(Abstract:) BACKGROUND: Ethnic minority patients have unique challenges in accessing health services. These include language difficulties, unfamiliarity with the health system, lower rates of cancer screening and survival, higher rates of reported side effects from cancer treatment and poorer quality of life. Little is known about this patient group when transitioning to palliative care. AIM: To elicit the experiences of palliative care health professionals when providing care for patients from culturally and linguistically diverse backgrounds which differ from mainstream Australian language and culture. DESIGN: An emergent qualitative design, informed by theoretical and procedural direction from grounded theory research. SETTING/PARTICIPANTS: Four focus groups held with palliative care staff ( n = 28) in a single specialist palliative care service in Australia. RESULTS: The following themes emerged: (1) determining the rules of engagement around discussion of diagnosis and prognosis, (2) navigating the challenge of language to patient understanding, (3) understanding migration experiences to establish trust, (4) maintaining the balance between patient safety and comfort care, (5) providing a good death experience through accommodation of beliefs, and (6) navigating the important role of family members while privileging patient preferences. CONCLUSION: Underlying provider perceptions of caring for patients was that death is difficult in any language. Care was conceptualised as considering cultural and linguistic backgrounds within individualistic care. Understanding the migration experience and building trust were key elements of this individualised approach. Acknowledgement of the key role played by families in patient care and safety are strategies to minimise barriers and understand the concerns of this patient group.]

Lobb, E. A., Kristjanson, L. J., Aoun, S. M., Monterosso, L., Halkett, G. B. K. and Davies, A. "Predictors of complicated grief: a systematic review of empirical studies." Death Studies 34, no. 8 (September 2010): 673-698. [(Abstract:) A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional designs, heterogeneous samples, high attrition, demographic differences between cases and controls, differences in length of time since death, and differences in types of death experienced. Notwithstanding these limitations, some consistent findings have emerged. Further research into conceptualizations of CG in terms of attachment theory and constructivist and cognitive-behavioral concepts of finding purpose and meaning after bereavement is warranted.]

Lobb, E. A., Lacey, J., Kearsley, J., Liauw, W., White, L. and Hosie, A. "Living with advanced cancer and an uncertain disease trajectory: an emerging patient population in palliative care?" BMJ Supportive and Palliative Care 5, no. 4 (December 2015): 352-357. [(Abstract:) OBJECTIVE: This study explored how patients diagnosed with advanced cancer cope with an uncertain disease trajectory. SUBJECTS: 27 patients with advanced cancer and with a prognosis of 12 months or more were recruited from the medical/radiation oncology and palliative care service at three metropolitan hospitals. METHODS: A semistructured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data analysis was based on Grounded Theory using the constant comparison method. RESULTS: Results indicate that patients cope by avoidance, remaining positive, maintaining as normal a life as possible, minimising the impact of the disease on their daily lives, comparing themselves favourably with others in a similar situation and focusing on the outcome of treatment to control disease progression. Most did not wish to discuss prognosis or have detailed information on disease progression. CONCLUSIONS: Participants in this study represent an emerging cancer patient population who are receiving palliative therapies. While they have incurable cancer, they self-report as clinically well, they describe a good quality of life and the trajectory of their disease, while unpredictable, may extend over many months to years. Our study suggests that a flexible model of care is needed to support the needs of people who may still be receiving some form of chemotherapy and/or radiotherapy, and remain well. This model may need to take more of an intermittent approach, that is, as required for specific symptom management, rather than patients being linked continuously to a palliative care service for long periods of time.]

Mowll, J., Lobb, E. A. and Wearing, M. "The transformative meanings of viewing or not viewing the body after sudden death." Death Studies 40, no. 1 (2016): 46-53. [(Abstract:) This study investigates the experience of viewing or not viewing the body for 64 relatives bereaved after a sudden and unexpected death. Thematic analyses of in-depth interviews reveal the importance of viewing and the challenges in providing choice. Some participants experienced difficulties including regret and intrusive images. These are discussed alongside the transformative meanings of seeing or not seeing the body for bereaved relatives.]

VI.  Lobb and colleagues note that their finding that only 56% of their study sample saw themselves as spiritual or religious is less than the percentage indicated by recent Australian census data "which shows 70% of Australians declared themselves having religion/faith" [MS pp. 9-10]. By comparison, an April 25, 2018 Pew Research Center report of "Key findings about Americans' Belief in God" noted that 90% of Americans say they believe in some kind of higher power, with 56% professing faith in God as described in the Bible and another 33% saying they believe in another type of higher power or spiritual force.

VII.  Regarding pastoral care to non-religious persons, Chaplain Mary Martha Thiel published three pieces in PlainViews [vol. 13, no. 1], which were cited in the Winter-Spring 2016 ACPE Research Newsletter [vol. 14, no. 2]:

• "Spiritual Care of the Nonreligious"  [--See separate files for Appendix A: HSL Spiritual Assessment and Appendix B: Teaching Verbatim Secular Language.]
• "Teaching Spiritual Care of the Nonreligious"  [--See separate file for Appendix C: Verbatim as Theological Event.]
• "Spiritual Care of American 'Jews of No Religion'"