The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study.

OBJECTIVE: When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness. METHOD: We conducted a single-arm pre-post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief. RESULTS: The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention. SIGNIFICANCE OF RESULTS: The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

Perceptions about female urinary incontinence: a systematic review.

INTRODUCTION AND HYPOTHESIS: Perceptions about urinary incontinence (UI) may have a differential impact on treatment-seeking behaviors. Thus, we aimed to systematically review perceptions regarding UI in women of different racial and ethnic populations. METHODS: MEDLINE, EMBASE, Scirus, Google Scholar, Open J-Gate, AgeLine, and Global Health (CABI) were searched from January 1980 to August 2011. We included qualitative studies that described knowledge, perception, or personal views about UI in women. Studies were excluded if they did not specify race/ethnicity of subjects, if they reported on non-UI urinary symptoms, or if they were performed exclusively in men. Three independent reviewers screened all studies. The relevance, appropriateness, transparency, and soundness (RATS) scale for qualitative research was used to assess study quality. Because of the qualitative data, meta-analyses were not performed. RESULTS: Of 3,676 citations, 23 studies met the inclusion criteria. Based on the RATS scale, these were categorized into 11 high-, 2 moderate-, and 10 low-quality studies. Dominant themes fell into two categories, UI management and UI experience, and were similar across racial/ethnic groups. Across multiple studies, women reiterated a preference for discussing UI with other women, even if this was not a physician. Non-white women expressed self-blame and perceived UI as a negative outcome from childbirth or prior sexual experiences. Latina women maintained more secrecy around this issue, even amongst family members. CONCLUSIONS: Women across different racial and ethnic groups share similar UI management strategies and UI experiences. However, perceptions about UI may differ in certain populations. These findings could be useful when considering future educational strategies regarding UI in women.

Scheduled telephone visits in the veterans health administration patient-centered medical home.

BACKGROUND: The Veterans Health Administration (VHA) patient-centered medical home model, Patient Aligned Care Teams (PACT), includes telephone visits to improve care access and efficiency. Scheduled telephone visits can replace in-person care for some focused issues, and more information is needed to understand how this mode can best work for primary care. We conducted a study at the beginning of PACT implementation to elicit stakeholder views on this mode of healthcare delivery, including potential facilitators and barriers. METHODS: We conducted focus groups with primary care patients (n = 3 groups), providers (n = 2 groups) and staff (n = 2 groups). Questions were informed by Donabedian's framework to evaluate and improve healthcare quality. Content analysis and theme matrix techniques were used to explore themes. Content was assigned a positive or negative valuation to indicate whether it was a facilitator or barrier. PACT principles were used as an organizing framework to present stakeholder responses within the context of the VHA patient-centered medical home program. RESULTS: Scheduled telephone visits could potentially improve care quality and efficiency, but stakeholders were cautious. Themes were identified relating to the following PACT principles: comprehensiveness, patient-centeredness, and continuity of care. In sum, scheduled telephone visits were viewed as potentially beneficial for routine care not requiring physical examination, and patients and providers suggested using them to evaluate need for in-person care; however, visits would need to be individualized, with patients able to discontinue if not satisfied. Patients and staff asserted that providers would need to be kept in the loop for continuity of care. Additionally, providers and staff emphasized needing protected time for these calls. CONCLUSION: These findings inform development of scheduled telephone visits as part of patient-centered medical homes by providing evidence about areas that may be leveraged to most effectively implement this mode of care. Presenting this service as enhanced care, with ability to triage need for in-person clinic visits and consequently provide more frequent contact, may most adequately meet different stakeholder expectations. In this way, scheduled telephone visits may serve as both a substitute for in-person care for certain situations and a supplement to in-person interaction.

Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study.

BACKGROUND: Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. METHODS: We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. RESULTS: We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. CONCLUSIONS: Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

What is your understanding of your illness? A communication tool to explore patients' perspectives of living with advanced illness.

BACKGROUND: Provider communication courses and guidelines stress the use of open-ended questions, such as "what is your understanding of your illness?," to explore patients' perceptions of their illness severity, yet descriptions of patients' responses are largely absent from the current literature. These questions are most often used by clinicians as they deliver bad news to cancer patients or address code status at the end of life, but have not been well studied in other diseases or earlier in the disease course. OBJECTIVES: To explore the responses of patients living with serious illness to the question "what is your understanding of your illness?" and to identify similarities and differences in themes and language used by cancer and non-cancer patients to discuss their illness. DESIGN: We conducted a qualitative analysis of patients' responses to "what is your understanding of your illness?" PARTICIPANTS: Two hundred nine subjects, 69 with cancer, 70 CHF, and 70 COPD, who had an estimated 50 % 2-year survival. Mean age was 66 years. APPROACH: Responses were recorded at the baseline interview of a larger, longitudinal study of patients with advanced life-limiting illness (cancer, CHF, or COPD). After thematic content analysis using open coding, investigators conducted pattern analysis to examine variation associated with diagnosis. RESULTS: We identified five major themes: naming the diagnosis or describing the pathophysiology, illness history, prognosis, symptoms, and causality. Responses varied by diagnosis. Cancer patients' responses more often included specific diagnostic details and prognosis, while non-cancer patients referenced symptoms and causality. CONCLUSIONS: Patients' responses to the open-ended question "what is your understanding of your illness?" can provide the clinician with important information and insight on how they view their illness in a non-acute setting. The identified themes can serve as a foundation for patient-centered communication strategies as we strive to build a mutual understanding of illness with patients.

Adaptive Challenges and Family Support: Patient Self-Management during Treatment for Chronic Hepatitis C.

The authors describe a family's adaptive challenges and adaptive work during a family member's treatment for Chronic Hepatitis C. We audiorecorded index and final clinical visits and interviewed participants (patients and providers) following the visits. We interviewed by telephone and reviewed medical records over the course of treatment. Transcripts were analyzed using directed content analysis. Three themes were identified: family adaptive challenges, patient-described aspects of family members' adaptive challenges, and family adaptive work. There were four subthemes related to family adaptive work. The adaptive leadership framework for chronic illness provided direction for future family intervention.

Regulation and mindful resident care in nursing homes.

Regulatory oversight is intended to improve the health outcomes of nursing home residents, yet evidence suggests that regulations can inhibit mindful staff behaviors that are associated with effective care. We explored the influence of regulations on mindful staff behavior as it relates to resident health outcomes, and offer a theoretical explanation of why regulations sometimes enhance mindfulness and other times inhibit it. We analyzed data from an in-depth, multiple-case study including field notes, interviews, and documents collected in eight nursing homes. We completed a conceptual/thematic description using the concept of mindfulness to reframe the observations. Shared facility mission strongly impacted staff perceptions of the purpose and utility of regulations. In facilities with a resident-centered culture, regulations increased mindful behavior, whereas in facilities with a cost-focused culture, regulations reduced mindful care practices. When managers emphasized the punitive aspects of regulation we observed a decrease in mindful practices in all facilities.

Barriers to and facilitators of clinical practice guideline use in nursing homes.

OBJECTIVES: To identify barriers to and facilitators of the diffusion of clinical practice guidelines (CPGs) and clinical protocols in nursing homes (NHs). DESIGN: Qualitative analysis. SETTING: Four randomly selected community nursing homes. PARTICIPANTS: NH staff, including physicians, nurse practitioners, administrative staff, nurses, and certified nursing assistants (CNAs). MEASUREMENTS: Interviews (n=35) probed the use of CPGs and clinical protocols. Qualitative analysis using Rogers' Diffusion of Innovation stages-of-change model was conducted to produce a conceptual and thematic description. RESULTS: None of the NHs systematically adopted CPGs, and only three of 35 providers were familiar with CPGs. Confusion with other documents and regulations was common. The most frequently cited barriers were provider concerns that CPGs were "checklists" to replace clinical judgment, perceived conflict with resident and family goals, limited facility resources, lack of communication between providers and across shifts, facility policies that overwhelm or conflict with CPGs, and Health Insurance Portability and Accountability Act regulations interpreted to limit CNA access to clinical information. Facilitators included incorporating CPG recommendations into training materials, standing orders, customizable data collection forms, and regulatory reporting activities. CONCLUSION: Clinicians and researchers wishing to increase CPG use in NHs should consider these barriers and facilitators in their quality improvement and intervention development processes.

Addressing Patient Emotional and Existential Needs During Serious Illness: Results of the Outlook Randomized Controlled Trial.

CONTEXT: Few interventions exist to address patients' existential needs. OBJECTIVES: Determine whether an intervention to address seriously ill patients' existential concerns improves preparation, completion (elements of quality of life [QOL] at end of life), and reduces anxiety and depression. METHODS: A randomized controlled trial comparing outlook intervention, relaxation meditation (RM), and usual care (UC). Measures included primary-a validated measure of QOL at the end of life and secondary-Functional Assessment of Cancer Therapy-General, anxiety (Profile of Mood States), depression (Center for Epidemiological Studies-Depression Scale), and spiritual well-being (Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being). Qualitative interviews assessed outlook intervention acceptability. Enrolled patients were nonhospice eligible veterans with advanced cancer, congestive heart failure, chronic obstructive pulmonary disease, end-stage renal disease, or end-stage liver disease. RESULTS: Patients (n = 221) were randomly assigned 1:1:1 to outlook, RM, and UC. Patients were 96% males, 46% with cancer, 58.4% married, and 43.9% of African American origin. Compared with UC, outlook participants had higher preparation (a validated measure of QOL at the end of life) (mean difference 1.1; 95% CI 0.2, 2.0; P = 0.02) and mean completion (1.6; 95% CI 0.05, 3.1; P = 0.04) at the first but not second postassessment. Compared with RM, outlook participants did not show significant differences over time. Exploratory analyses indicated that in subgroups with cancer and low sense of peace, outlook participants had improved preparation at first and not second postassessment, as compared with UC (mean difference 1.4; 95% CI 0.03, 2.7; P = 0.04) (mean difference = 1.8; 95% CI 0.3, 3.3; P = 0.02), respectively. CONCLUSION: Outlook had an impact on social well-being and preparation compared with UC. The lack of impact on anxiety and depression differs from previous results among hospice patients. Results suggest that outlook is not demonstratively effective in populations not experiencing existential or emotional distress.

MDS coordinator relationships and nursing home care processes.

This study describes how Minimum Data Set (MDS) coordinators' relationship patterns influence nursing home care processes. MDS coordinators interact with nursing home staff to coordinate resident assessment and care planning, but little is known about how they enact this role or influence particular care processes beyond paper compliance. Guided by complexity science and using two nursing home case studies, the authors describe MDS coordinators' relationship patterns by assessing the extent to which they used and fostered good connections, new information flow, and cognitive diversity. MDS coordinators at one site fostered new information flow, good connections, and cognitive diversity, which positively influenced assessment and care planning, whereas those at the other site did little to foster these three relationship parameters, with little influence on care processes. This study revealed that MDS coordinators are an important new source of capacity for the nursing home industry to improve quality of care.

Exit interview-consultation for research validation and dissemination.

Dissemination of research findings to practice and maintenance of rigor and validity in qualitative research are continuing challenges for nurse researchers. Using three nursing home case studies as examples, this article describes how exit interview-consultation was used as (a) a validation strategy and (b) a rapid research dissemination tool that is particularly useful for nursing systems research. Through an exit interview-consultation method, researchers validated inferences made from qualitative and quantitative data collected in three comprehensive nursing home case studies that examined nursing management practices. This exit interview-consultation strategy extends the traditional member-check approach by providing confirmation at the individual and organizational level. The study examined how using the exit interview-consultation strategy can potentially assist nursing home organizations to increase their capacity for improving operations. Benefits from research participation are often indirect; this study's results suggest that exit interview-consultation can provide direct and immediate benefits to organizations and individuals.

Patterns of medical and nursing staff communication in nursing homes: implications and insights from complexity science.

Complexity science teaches that relationships among health care providers are key to our understanding of how quality care emerges. The authors sought to compare the effects of differing patterns of medicine-nursing communication on the quality of information flow, cognitive diversity, self-organization, and innovation in nursing homes. Two facilities participated in 6-month case studies using field observations, shadowing, and depth interviews. In one facility, the dominant pattern of communication was a vertical "chain of command" between care providers, characterized by thin connections and limited information exchange. This pattern limited cognitive diversity and innovation in clinical problem solving. The second facility used an open communication pattern between medical and frontline staff. The authors saw higher levels of information flow, cognitive diversity, innovation, and self-organization, although tempered by staff turnover. The patterns of communication between care providers in nursing facilities have an important impact on their ability to provide quality, innovative care.

Urinary Incontinence and Health-Seeking Behavior Among White, Black, and Latina Women.

OBJECTIVE: Fewer than half of women with urinary incontinence (UI) seek care for their condition. Our objective was to qualitatively assess the themes surrounding treatment-seeking behaviors. METHODS: We conducted 12 focus groups with women and, using purposive sampling, we stratified by racial or ethnic group (white, black, Latina) and by UI frequency. All sessions were transcribed and coded for common themes. Comparative thematic analysis was used to describe similarities and differences among groups. RESULTS: In total, 113 (39 white, 41 black, and 33 Latina) community-dwelling women participated in focus groups. There were no differences in treatment-seeking themes between groups with different UI frequency. However, certain themes emerged when comparing racial/ethnic groups. Women from all groups shared experiences of embarrassment and isolation because of UI, which were impediments to care seeking. White and black women described discussions with close friends or family that led to normalization of symptoms and prevented care seeking. Latina women maintained more secrecy about UI and reported the longest delays in seeking care. Women articulated a higher likelihood of seeking care if they had knowledge of treatment options, but white women were more likely to seek UI-related knowledge compared with black or Latina women. Physician communication barriers were identified in all groups. CONCLUSIONS: Despite similar experiences, there are different perceptions about care seeking among white, black, and Latina women. Culturally relevant educational resources that focus on a range of treatment options may improve knowledge and thus improve care-seeking behaviors in women with UI.

Nurse assistant mental models, sensemaking, care actions, and consequences for nursing home residents.

In a nursing home case study using observation and interview data, the authors described two mental models that guided certified nurse assistants (CNAs) in resident care. The Golden Rule guided CNAs to respond to residents as they would want someone to do for them. Mother wit guided CNAs to treat residents as they would treat their own children. These mental models engendered self-control and affection but also led to actions such as infantilization and misinterpretations about potentially undiagnosed conditions such as depression or pain. Furthermore, the authors found that CNAs were isolated from clinicians; little resident information was exchanged. They suggest ways to alter CNA mental models to give them a better basis for action and strategies for connecting CNAs and clinical professionals to improve information flow about residents. Study results highlight a critical need for registered nurses (RNs) to be involved in frontline care.

"The Golden Rule": Only a starting point for quality care.

The Golden Rule guides people to choose for others what they would choose for themselves. The Golden Rule is often described as 'putting yourself in someone else's shoes', or 'Do unto others as you would have them do unto you'(Baumrin 2004). The viewpoint held in the Golden Rule is noted in all the major world religions and cultures, suggesting that this may be an important moral truth (Cunningham 1998). The Golden Rule underlies acts of kindness, caring, and altruism that go above and beyond "business as usual" or "usual care" (Huang, 2005). As such, this heuristic or 'rule of thumb' has universal appeal and helps guide our behaviors toward the welfare of others. So why question the Golden Rule? Unless used mindfully, any heuristic can be overly-simplistic and lead to unintended, negative consequences.A heuristic is a rule of thumb that people use to simplify potentially overwhelming or complex events. These rules of thumb are largely unconscious, and occur irrespective of training and educational level (Gilovich, Griffin & Kahneman 2002). Rules of thumb, such as the Golden Rule, allow a person to reduce a complex situation to something manageable-e.g., 'when in doubt, do what I would want done'. Because it is a simplifying tool, however, the Golden Rule may lead to inappropriate actions because important factors may be overlooked.In this article we describe "The Golden Rule" as used by administrators, supervisors, charge nurses, and CNAs in case studies of four nursing homes. By describing use of this rule-of-thumb, we aim to challenge nurses in nursing homes to: 1) be mindful of their use of "The Golden Rule" and its impact on staff and residents; and 2) help staff members think through how and why "The Golden Rule" may impact their relationships with staff and residents.

Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

BACKGROUND: Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms. METHODS: To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description. RESULTS: Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information's substance. CONCLUSIONS: Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.

Categorizing the effect of comorbidity: a qualitative study of individuals' experiences in a low-vision rehabilitation program.

OBJECTIVES: To identify generalizable ways that comorbidity affects older adults' experiences in a health service program directed toward an index condition and to develop a framework to assist clinicians in approaching comorbidity in the design, delivery, and evaluation of such interventions. DESIGN: A qualitative data content analysis of interview transcripts to identify themes related to comorbidity. SETTING: An outpatient low-vision rehabilitation program for macular disease. PARTICIPANTS: In 2007/08, 98 individuals undergoing low-vision rehabilitation and their companions provided 624 semistructured interviews that elicited perceptions about barriers and facilitators of successful program participation. RESULTS: The interviews revealed five broad themes about comorbidity: (i) "good days, bad days," reflecting participants' fluctuating health status during the program because of concurrent medical problems; (ii) "communication barriers." which were sometimes due to participant impairments and sometimes situational; (iii) "overwhelmed," which encompassed pragmatic and emotional concerns of participants and caregivers; (iv) "delays," which referred to the tendency of comorbidities to delay progress in the program and to confer added inconvenience during lengthy appointments; and (v) value of companion involvement in overcoming some barriers imposed by comorbid conditions. CONCLUSION: This study provides a taxonomy and conceptual framework for understanding consequences of comorbidity in the experience of individuals receiving a health service. If confirmed in individuals receiving interventions for other index diseases, the framework suggests actionable items to improve care and facilitate research involving older adults.

The Nature of Staff - Family Interactions in Nursing Homes: Staff Perceptions.

Each year thousands of older adults are admitted to nursing homes. Following admission, nursing home staff and family members must interact and communicate with each other. This study examined relationship and communication patterns between nursing home staff members and family members of nursing home residents, as part of a larger multi-method comparative case study. Here, we report on 6- month case studies of two nursing homes where in-depth interviews, shadowing experiences, and direct observations were completed. Staff members from both nursing homes described staff-family interactions as difficult, problematic and time consuming, yet identified strategies that when implemented consistently, influenced the staff-family interaction positively. Findings suggest explanatory processes in staff-family interactions, while pointing toward promising interventions.

Connection, regulation, and care plan innovation: a case study of four nursing homes.

We describe how connections among nursing home staff impact the care planning process using a complexity science framework. We completed six-month case studies of four nursing homes. Field observations (n = 274), shadowing encounters (n = 69), and in-depth interviews (n = 122) of 390 staff at all levels were conducted. Qualitative analysis produced a conceptual/thematic description and complexity science concepts were used to produce conceptual insights. We observed that greater levels of staff connection were associated with higher care plan specificity and innovation. Connection of the frontline nursing staff was crucial for (1) implementation of the formal care plan and (2) spontaneous informal care planning responsive to changing resident needs. Although regulations could theoretically improve cognitive diversity and information flow in care planning, we observed instances of regulatory oversight resulting in less specific care plans and abandonment of an effective care planning process. Interventions which improve staff connectedness may improve resident outcomes.