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1.  Measuring the Experience and Perception of Suffering 
The Gerontologist  2010;50(6):774-784.
Purpose: Assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals. Design and Methods: Scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimer’s disease (AD) and their family caregivers (N = 105 dyads), married couples in whom 1 partner had osteoarthritis (N = 53 dyads), and African American and Hispanic caregivers of care recipients with AD (N = 121). Care recipients rated their own suffering, whereas caregivers provided ratings of perceived suffering of their respective care recipients. In addition, quality of life, health, and functional status data were collected from all respondents via structured in-person interviews. Results: Three scales showed high levels of internal consistency, test–retest reliability, and convergent and discriminant validity. The scales were able to discriminate differences in suffering as a function of type of disease, demonstrated high intra-person correlations and moderately high inter-person correlations and exhibited predicted patterns of association between each type of suffering and indicators of quality of life, health status, and caregiver outcomes of depression and burden. Implications: Suffering is an important but understudied domain. This article provides valuable tools for assessing the experience and perception of suffering in humans.
doi:10.1093/geront/gnq033
PMCID: PMC3003549  PMID: 20478899
Alzheimer’s disease; Caregiving; Quality of life
2.  Positive and Negative Religious Coping and Well-Being in Women with Breast Cancer 
Journal of Palliative Medicine  2009;12(6):537-545.
Abstract
Background
Although religions is important to many people with cancer, few studies have explored the relationship between religious coping and well-being in a prospective manner, using validated measures, while controlling for important covariates.
Methods
One hundred ninety-eight women with stage I or II and 86 women with stage IV stage breast cancer were recruited. Standardized assessment instruments and structured questions were used to collect data at study entry and 8 to 12 months later. Religious coping was measured with validated measures of positive and negative religious coping. Linear regression models were used to explore the relationships between positive and negative religious coping and overall physical and mental well-being, depression, and life satisfaction.
Results
The percentage of women who used positive religious coping (i.e., partnering with God or looking to God for strength, support, or guidance) “a moderate amount” or “a lot” was 76%. Negative religious coping (i.e., feeling abandoned by or anger at God) was much less prevalent; 15% of women reported feeling abandoned by or angry at God at least “a little.” Positive religious coping was not associated with any measures of well-being. Negative religious coping predicted worse overall mental health, depressive symptoms, and lower life satisfaction after controlling for sociodemographics and other covariates. In addition, changes in negative religious coping from study entry to follow-up predicted changes in these well-being measures over the same time period. Cancer stage did not moderate the relationships between religious coping and well-being.
Conclusions
Negative religious coping methods predict worse mental heath and life satisfaction in women with breast cancer.
doi:10.1089/jpm.2008.0250
PMCID: PMC2789454  PMID: 19508140
3.  Spousal Suffering and Partner’s Depression and Cardiovascular Disease: The Cardiovascular Health Study 
Objectives
To assess the effects of suffering in a spouse on prevalent and incident psychiatric (depression) and physical morbidity (cardiovascular disease, CVD) in their partner, controlling for known risk factors for depression and CVD.
Design
Descriptive longitudinal study.
Participants
1330 older married couples enrolled in the Cardiovascular Health Study (CHS), a large epidemiologic study of the elderly.
Measurements
Predictor variables were physical, psychological, and existential/spiritual indicators of suffering. Primary outcomes were prevalent and incident depression and CVD.
Results
Controlling for known risk factors for depression, we found a dose-response relationship between suffering in a spouse and concurrent depression in their partner as well as a relationship between suffering and the partner’s future risk for depression. With respect to CVD, and controlling for sub-clinical CVD at baseline, husbands whose wives reported high levels of suffering also had higher rates of prevalent CVD, but there were not significant associations between wives suffering and husbands incident CVD. There were no associations between husbands’ suffering and wives’ prevalent or incident CVD.
Conclusion
Exposure to spousal suffering is an independent and unique source of distress in married couples that contributes to psychiatric and physical morbidity. More attention should be paid to the interpersonal effects of suffering in married couples, and to its role in contributing to morbidity.
doi:10.1097/JGP.0b013e318198775b
PMCID: PMC2697395  PMID: 19454851
suffering; depression; cardiovascular disease
4.  Bereavement after Caregiving 
Geriatrics  2008;63(1):20-22.
Approximately 20% of bereaved caregivers will experience a variety of psychiatric symptoms including depression and/or complicated grief, a disorder characterized by persistently high levels of distress that impair functioning in important life domains. We identify prebereavement risk factors for poor adjustment after the death of a loved one along with preventive strategies that can be implemented prior to death as well as diagnostic procedures and therapeutic strategies that can be used to identify and treat individuals who develop complicated grief disorder after death.
PMCID: PMC2790185  PMID: 18257616
5.  Positive and Negative Religious Coping and Well-Being in Women with Breast Cancer 
Journal of palliative medicine  2009;12(6):537-545.
Background
Although religions is important to many people with cancer, few studies have explored the relationship between religious coping and well-being in a prospective manner, using validated measures, while controlling for important covariates.
Methods
One hundred ninety-eight women with stage I or II and 86 women with stage IV stage breast cancer were recruited. Standardized assessment instruments and structured questions were used to collect data at study entry and 8 to 12 months later. Religious coping was measured with validated measures of positive and negative religious coping. Linear regression models were used to explore the relationships between positive and negative religious coping and overall physical and mental well-being, depression, and life satisfaction.
Results
The percentage of women who used positive religious coping (i.e., partnering with God or looking to God for strength, support, or guidance) “a moderate amount” or “a lot” was 76%. Negative religious coping (i.e., feeling abandoned by or anger at God) was much less prevalent; 15% of women reported feeling abandoned by or angry at God at least “a little.” Positive religious coping was not associated with any measures of well-being. Negative religious coping predicted worse overall mental health, depressive symptoms, and lower life satisfaction after controlling for sociodemographics and other covariates. In addition, changes in negative religious coping from study entry to follow-up predicted changes in these well-being measures over the same time period. Cancer stage did not moderate the relationships between religious coping and well-being.
Conclusions
Negative religious coping methods predict worse mental heath and life satisfaction in women with breast cancer.
doi:10.1089/jpm.2008.0250
PMCID: PMC2789454  PMID: 19508140
6.  Dementia Patient Suffering and Caregiver Depression 
Cross-sectional and longitudinal analyses were carried out to assess the relationship between dementia patient suffering, caregiver depression, and antidepressant medication use in 1222 dementia patients and their caregivers. We assessed the prevalence of 2 types of patient suffering, emotional and existential distress, and examined their independent associations with caregiver depression and antidepressant medication use when controlling for sociodemographic characteristics of caregivers and patients, cognitive and physical disability of the patient, the frequency of patient memory problems and disruptive behaviors, and the amount of time spent caring for the patient. Multiple linear regression models showed that both aspects of perceived patient suffering independently contribute to caregiver depression (emotional distress: β = 1.24; P < 0.001; existential distress: β = 0.66; P < 0.01) whereas only existential suffering contributes to antidepressant medication use: odds ratio = 1.25 95% confidence interval, 1.10–1.42; P < 0.01. In longitudinal analyses, increases in both types of suffering were associated with increases in caregiver depression (emotional distress: β = 1.02; P < 0.01; existential distress: β = 0.64; P < 0.01). This is the first study to show in a large sample that perceived patient suffering independently contributes to family caregiver depression and medication use. Medical treatment of patients that maintain or improve memory but do not address suffering may have little impact on the caregiver. Alzheimer disease patient suffering should be systematically assessed and treated by clinicians.
doi:10.1097/WAD.0b013e31816653cc
PMCID: PMC2782456  PMID: 18525290
suffering; dementia; caregiving; depression; anti-depressant use
7.  Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research 
Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' well-being. Interventions for caregivers of persons at end-of-life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. While useful, these interventions generally ignore a primary stressor for family caregivers—a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.
doi:10.1016/j.jpainsymman.2006.12.016
PMCID: PMC2195548  PMID: 17616333
Caregivers; intervention studies; suffering; stress
8.  Caregiver intervention research: an opportunity for collaboration between caregiving investigators and African-american faith communities. 
The African-American community in the United States is rapidly aging. Because friends and family who care for these elderly individuals often do so at the expense of their own physical and psychological well-being, there has been extensive interest in the development of interventions to reduce caregiver burden and morbidity. Few interventions, however, have targeted African-American caregivers. Given the importance of religion for many African-American caregivers, we believe that faith communities could be valuable allies to research investigators. The primary objectives of this paper, therefore, are to: 1) summarize the literature on religion and African-American caregivers; 2) provide a rationale for why caregiving investigators and African-American faith communities should collaborate; and 3) present directions for future research. We present evidence to support our assertion that, not only could collaboration result in interventions that improve the well-being of African-American caregivers, collaboration would also benefit both caregiving investigators and faith communities.
PMCID: PMC2569709  PMID: 17019921
9.  Resident Research and Scholarly Activity in Internal Medicine Residency Training Programs 
OBJECTIVES
1) To describe how internal medicine residency programs fulfill the Accreditation Council for Graduate Medical Education (ACGME) scholarly activity training requirement including the current context of resident scholarly work, and 2) to compare findings between university and nonuniversity programs.
DESIGN
Cross-sectional mailed survey.
SETTING
ACGME-accredited internal medicine residency programs.
PARTICIPANTS
Internal medicine residency program directors.
MEASUREMENTS
Data were collected on 1) interpretation of the scholarly activity requirement, 2) support for resident scholarship, 3) scholarly activities of residents, 4) attitudes toward resident research, and 5) program characteristics. University and nonuniversity programs were compared.
MAIN RESULTS
The response rate was 78%. Most residents completed a topic review with presentation (median, 100%) to fulfill the requirement. Residents at nonuniversity programs were more likely to complete case reports (median, 40% vs 25%; P =.04) and present at local or regional meetings (median, 25% vs 20%; P =.01), and were just as likely to conduct hypothesis-driven research (median, 20% vs 20%; P =.75) and present nationally (median, 10% vs 5%; P =.10) as residents at university programs. Nonuniversity programs were more likely to report lack of faculty mentors (61% vs 31%; P <.001) and resident interest (55% vs 40%; P =.01) as major barriers to resident scholarship. Programs support resident scholarship through research curricula (47%), funding (46%), and protected time (32%).
CONCLUSIONS
Internal medicine residents complete a variety of projects to fulfill the scholarly activity requirement. Nonuniversity programs are doing as much as university programs in meeting the requirement and supporting resident scholarship despite reporting significant barriers.
doi:10.1111/j.1525-1497.2005.40270.x
PMCID: PMC1490049  PMID: 15836549
ACGME; resident research; medical education; national survey
10.  Prominent medical journals often provide insufficient information to assess the validity of studies with negative results 
Background
Physicians reading the medical literature attempt to determine whether research studies are valid. However, articles with negative results may not provide sufficient information to allow physicians to properly assess validity.
Methods
We analyzed all original research articles with negative results published in 1997 in the weekly journals BMJ, JAMA, Lancet, and New England Journal of Medicine as well as those published in the 1997 and 1998 issues of the bimonthly Annals of Internal Medicine (N = 234). Our primary objective was to quantify the proportion of studies with negative results that comment on power and present confidence intervals. Secondary outcomes were to quantify the proportion of these studies with a specified effect size and a defined primary outcome. Stratified analyses by study design were also performed.
Results
Only 30% of the articles with negative results comment on power. The reporting of power (range: 15%-52%) and confidence intervals (range: 55–81%) varied significantly among journals. Observational studies of etiology/risk factors addressed power less frequently (15%, 95% CI, 8–21%) than did clinical trials (56%, 95% CI, 46–67%, p < 0.001). While 87% of articles with power calculations specified an effect size the authors sought to detect, a minority gave a rationale for the effect size. Only half of the studies with negative results clearly defined a primary outcome.
Conclusion
Prominent medical journals often provide insufficient information to assess the validity of studies with negative results.
doi:10.1186/1477-5751-1-1
PMCID: PMC131026  PMID: 12437785
11.  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.
doi:10.1111/j.1525-1497.2001.01034.x
PMCID: PMC1495274  PMID: 11679036
religion; spirituality; patient-physician communication

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