Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues.

Family members of patients with advanced illness have many questions. Unfortunately, several barriers prevent caregivers from discussing their questions with the physicians caring for the patient. Although question prompt sheets can be helpful in overcoming barriers to communication, few have been developed for family caregivers. The goal of this study, therefore, was to develop and test the acceptability and feasibility of a short question prompt sheet designed to encourage discussions about end-of-life concerns in an outpatient palliative care clinic. Our results demonstrated that caregivers wanted to discuss a variety of questions, primarily questions about medications, symptoms, support services, and what to expect. All caregivers thought that the question prompt sheet was easy to understand and felt comfortable completing it in clinic and the majority reported that the question prompt sheets made it easier for them to ask questions.

Religion, spirituality and the well-being of informal caregivers: a review, critique, and research prospectus.

The purpose of this article is to review and critique the published literature examining the relationships between religion/spirituality and caregiver well-being and to provide directions for future research. A systematic search was conducted using bibliographic databases, reference sections of articles, and by contacting experts in the field. Articles were reviewed for measurement, theoretical, and design limitations. Eighty-three studies were retrieved. Research on religion/spirituality and caregiver well-being is a burgeoning area of investigation; 37% of the articles were published in the last five years. Evidence for the effects of religion/spirituality were unclear; the preponderance (n = 71, 86%) of studies found no or a mixed association (i.e., a combination of positive, negative, or non-significant results) between religion/spirituality and well-being. These ambiguous results are a reflection of the multidimensionality of religion/spirituality and the diversity of well-being outcomes examined. They also partially reflect the frequent use of unrefined measures of religion/spirituality and of atheoretical approaches to studying this topic. Investigators have a fairly large number of studies on religion/spirituality and caregiver well-being on which to build. Future studies should be theory driven and utilize psychometrically sound measures of religion/spirituality. Suggestions are provided to help guide future work.

Development of a case report review instrument.

Case reports are valued components of the medical literature. The assessment of case reports by editors of medical journals and peer reviewers is largely subjective. The purpose of this study was to develop a reliable instrument to evaluate the quality of written case reports. Instrument development involved review of the literature and the materials provided to peer reviewers who review manuscripts, communications with journal editors and discussions of the study team. After multiple amendments, the instrument was pilot tested on both published and unpublished case reports. Further revisions resulted in the final 11-item tool. Four independent reviewers evaluated 28 case reports in their original submission format that had been submitted to five medical journals. The reviewers were blinded to the specific journal that the manuscripts had been submitted and to whether the case reports had been accepted for publication. Inter-rater reliability was assessed using multirater kappa. Inter-rater reliability ranged from 0.03 to 0.90. The four variables with the highest agreement between raters were (i) rationale for writing the case report; (ii) implications of the case report; (iii) adequacy of the literature review; and (iv) overall impression about whether to accept or reject the manuscript (kappas of 0.67, 0.67, 0.90 and 0.67, respectively). Six of the instrument's first 10 variables were highly correlated with the reviewers' decision about whether to accept or reject the case report for publication (item 11) (all p < 0.001). No correlation existed between the reviewers' decision to accept or reject the manuscript and the actual decision that had been made by the various journals. The case report review instrument is the first such tool for objectively evaluating case reports and appears to have reasonable reliability. Medical journals may wish to incorporate the use of this instrument into the decision making about a case report's suitability for publication.

Grief support for informal caregivers of patients with ALS: a national survey.

Providing emotional support to caregivers is integral to comprehensive ALS care. The authors surveyed ALS Association centers and clinics and Muscular Dystrophy Association/ALS centers. Respondents thought that grief and bereavement support was integral to ALS care but thought that the support provided by their centers was often inadequate.

Patient perspectives on spirituality and the patient-physician relationship.

OBJECTIVE: To identify the preferences and concerns of seriously ill patients about discussing religious and spiritual beliefs with physicians. DESIGN: Three focus group discussions with patients who had experienced a recent life-threatening illness. Discussions were audiotaped, transcribed verbatim, and reviewed independently by two investigators to identify discrete comments for grouping into domains. A third investigator adjudicated differences in opinion. Comments were then independently reviewed for relevance and consistency by a health services researcher and a pastoral counselor. SETTING: Academic medical center. PARTICIPANTS: Referred sample of 22 patients hospitalized with a recent life-threatening illness. MEASUREMENTS AND MAIN RESULTS: Almost all of the 562 comments could be grouped into one of five broad domains: 1) religiosity/spirituality, 2) prayer, 3) patient-physician relationship, 4) religious/spiritual conversations, and 5) recommendations to physicians. God, prayer, and spiritual beliefs were often mentioned as sources of comfort, support, and healing. All participants stressed the importance of physician empathy. Willingness to participate in spiritual discussions with doctors was closely tied to the patient-physician relationship. Although divided on the proper context, patients agreed that physicians must have strong interpersonal skills for discussions to be fruitful. Physician-initiated conversation without a strong patient-physician relationship was viewed as inappropriate and as implying a poor prognosis. CONCLUSION: Religion and spirituality are a source of comfort for many patients. Although not necessarily expecting physicians to discuss spirituality, patients want physicians to ask about coping and support mechanisms. This exploratory study suggests that if patients then disclose the importance of spiritual beliefs in their lives, they would like physicians to respect these values.