Exploring the Impact of Dementia in Samoan Culture: A Qualitative Study on Community Perspective.

Purpose: Explore if and how American Samoan cultural norms influence caregivers' knowledge, attitudes, and care choices for person's living with Alzheimer's Dementia (AD).Design: This pilot study used mixed methods.Methods: 1) Quantitative survey: measuring knowledge/attitudes towards AD (n = 80); 2) Qualitative techniques: a) Focus groups (n= 54) with caregivers; b) Semi-structured interviews (n=26) with health professionals; and c) In-depth interviews (n=3) with key informants. Emergent themes were created using data from all methods.Findings: Quantitative analyses revealed 50% of participants identified AD as normal aging, 83% as mental illness. The majority of participants believed elders with AD do not experience pain (70%) and should be cared for solely at home (74%). Qualitative evidence showed dissonance between cultural norms of respect for elders, familial caregiving duty, shame in others observing elders' dementia-related behaviours, and the current language used to describe AD.Conclusions: Our findings show a need for developing and disseminating culturally sensitive terminology for AD to destigmatize and transmute attitudes, knowledge and care choices for elders living with AD.Clinical Evidence: American Samoan terminology for dementia is discordant with its cultural norms, thus shaping caregivers' perceptions of AD and influencing care choices for managing AD symptoms.

Gender Bias Affects Assessment of Frailty and Recommendations for Surgery.

BACKGROUND: Physician gender bias in surgical treatment recommendations is recognized but not well understood. This study hypothesized that gender differences may exist in interpretation of patients' physical behaviors and that these differences may be associated with decision making by providers and surrogate decision makers. METHODS: A pool of Amazon Mechanical Turk workers was solicited to participate in an online assessment. Workers viewed 3 short videos of standardized patients (SPs) trained to exhibit physical characteristics of vigorous, frail, and neither vigorous nor frail (average) behavior and then answered survey questions related to video characteristics and whether they would support the SP's decision to undergo an indicated major lung resection. RESULTS: There were 724 participating workers; their mean age was 42.6 ± 11.8 years, and 386 were women. Men judged the average SP to be younger (P = .025), and women were more likely to recognize weight loss in the frail SP (P = .009). Overall, men and women were equally supportive of lung resection when indicated. The likelihood of supporting a decision to proceed with resection was inversely related to SP distress (P < .001) and was directly related to increasing gait speed (P < .001), energy (P < .001), and strength (P < .001). Male participants were less likely to support resection related to higher energy (P = .02) and strength levels (P = .016). CONCLUSIONS: Gender differences exist in how video portrayal of patient frailty is perceived and affects surgical recommendations. Understanding such differences may aid in educational efforts directed at reducing gender-based biases in treatment recommendations by physicians and surrogate decision makers.

Communication With Older Patients With Cancer Using Geriatric Assessment: A Cluster-Randomized Clinical Trial From the National Cancer Institute Community Oncology Research Program.

Importance: Older patients with cancer and their caregivers worry about the effects of cancer treatment on aging-related domains (eg, function and cognition). Quality conversations with oncologists about aging-related concerns could improve patient-centered outcomes. A geriatric assessment (GA) can capture evidence-based aging-related conditions associated with poor clinical outcomes (eg, toxic effects) for older patients with cancer. Objective: To determine whether providing a GA summary and GA-guided recommendations to oncologists can improve communication about aging-related concerns. Design, Setting, and Participants: This cluster-randomized clinical trial enrolled 541 participants from 31 community oncology practices within the University of Rochester National Cancer Institute Community Oncology Research Program from October 29, 2014, to April 28, 2017. Patients were aged 70 years or older with an advanced solid malignant tumor or lymphoma who had at least 1 impaired GA domain; patients chose 1 caregiver to participate. The primary outcome was assessed on an intent-to-treat basis. Interventions: Oncology practices were randomized to receive either a tailored GA summary with recommendations for each enrolled patient (intervention) or alerts only for patients meeting criteria for depression or cognitive impairment (usual care). Main Outcomes and Measures: The predetermined primary outcome was patient satisfaction with communication about aging-related concerns (modified Health Care Climate Questionnaire [score range, 0-28; higher scores indicate greater satisfaction]), measured after the first oncology visit after the GA. Secondary outcomes included the number of aging-related concerns discussed during the visit (from content analysis of audiorecordings), quality of life (measured with the Functional Assessment of Cancer Therapy scale for patients and the 12-Item Short Form Health Survey for caregivers), and caregiver satisfaction with communication about aging-related patient concerns. Results: A total of 541 eligible patients (264 women, 276 men, and 1 patient did not provide data; mean [SD] age, 76.6 [5.2] years) and 414 caregivers (310 women, 101 men, and 3 caregivers did not provide data; mean age, 66.5 [12.5] years) were enrolled. Patients in the intervention group were more satisfied after the visit with communication about aging-related concerns (difference in mean score, 1.09 points; 95% CI, 0.05-2.13 points; P = .04); satisfaction with communication about aging-related concerns remained higher in the intervention group over 6 months (difference in mean score, 1.10; 95% CI, 0.04-2.16; P = .04). There were more aging-related conversations in the intervention group's visits (difference, 3.59; 95% CI, 2.22-4.95; P < .001). Caregivers in the intervention group were more satisfied with communication after the visit (difference, 1.05; 95% CI, 0.12-1.98; P = .03). Quality of life outcomes did not differ between groups. Conclusions and Relevance: Including GA in oncology clinical visits for older adults with advanced cancer improves patient-centered and caregiver-centered communication about aging-related concerns. Trial Registration: ClinicalTrials.gov identifier: NCT02107443.

Informal Caregiving in a Medically Underserved Community: Challenges, Construction of Meaning, and the Caregiver-Recipient Dyad.

Little is known about informal caregivers' challenges in medically underserved communities. This qualitative study explores their perceptions/experiences of caregiving in a medically underserved community in Midwest United States. Two focus groups (n = 12) were conducted and themes were extracted and analyzed. Theme 1 included perceived barriers/unmet needs; most prevalent of which were lack of informational resources and support groups. A second unsolicited and unanticipated theme highlighted how caregivers constructed meaning through reappraising challenges to create enriching experiences for themselves, reinforcing their evolving dyadic relationship with care-recipient. Challenging and enriching aspects of caregiving coexisted and were rooted in caregiver-care-recipient dyad. Caregivers used meaning-making as a coping strategy for challenges. Prior research corroborates caregivers' challenges and meaning-making; this study contributes by delineating how both become interrelated. Policy makers can (a) alleviate challenges by increasing informational resources and support groups and (b) provide training to optimize caregivers' meaning-making, thus enhancing their positive experiences.

Patients' perceptions and attitudes on recurrent prostate cancer and hormone therapy: Qualitative comparison between decision-aid and control groups.

OBJECTIVE: To compare patients' attitudes towards recurrent prostate cancer (PCa) and starting hormone therapy (HT) treatment in two groups-Decision-Aid (DA) (intervention) and Standard-of-care (SoC) (Control). METHODS: The present research was conducted at three academic clinics-two in the Midwest and one in the Northeast U.S. Patients with biochemical recurrence of PCa (n=26) and follow-up oncology visits meeting inclusion criteria were randomized to either the SoC or DA intervention group prior to their consultation. Analysts were blinded to group assignment. Semi-structured phone interviews with patients were conducted 1-week post consultation. Interviews were audio-taped and transcribed. Qualitative analytic techniques were used to extract salient themes and conduct a comparative analysis of the two groups. RESULTS: Four salient themes emerged-1) knowledge acquisition, 2) decision-making style, 3) decision-making about timing of HT, and 4) anxiety-coping mechanisms. A comparative analysis showed that patients receiving the DA intervention had a better comprehension of Prostate-specific antigen (PSA), an improved understanding of HT treatment implications, an external locus-of-control, participation in shared decision-making and, support-seeking for anxiety reduction. In contrast, SoC patients displayed worse comprehension of PSA testing and HT treatment implications, internal locus-of-control, unilateral involvement in knowledge-seeking and decision-making, and no support-seeking for anxiety-coping. CONCLUSIONS: The DA was more effective than the SoC group in helping PCa patients understand the full implications of PSA testing and treatment; motivating shared decision-making, and support-seeking for anxiety relief. DA DVD interventions can be a useful patient education tool for bringing higher quality decision-making to prostate cancer care.

Nurses' perceptions of pain management for older-patients in the Emergency Department: A qualitative study.

OBJECTIVES: 1) Identify themes arising from nurses' perceptions of assessing older-patients' pain; 2) use themes to guide development of optimal interventions to improve quality of pain assessment in the emergency department (ED). METHODS: Nurse interviews (n=20) were conducted until theme saturation. They were transcribed, coded, and analyzed using qualitative methodology. RESULTS: Two major themes-nurse 'challenges' and 'strategies' to overcome challenges, and their subthemes - classified as 'patient-related' or 'system-related,' were salient in nurses' perceptions. Strategies nurses reported for managing challenges were based in their own professional lived experiences. DISCUSSION AND CONCLUSION: A 2×2 framework was developed to conceptualize challenges, strategies, subthemes and their classifications, yielding 4 typologies comprising challenge types matched with appropriate strategy types. While emergent challenges and strategies are corroborated in the literature, the present study is the first to develop a scheme of typologies beneficial for guiding the development of optimal interventions to improve the quality of assessing pain in older-patients. PRACTICE IMPLICATIONS: The typology framework can guide the development of pain assessment tools and the needed combinations for assessing multidimensional pain in older-patients. Using the present findings, a new clinical intervention was shown to significantly improve pain management for older-patients in the ED.

Geriatric Assessment-Guided Care Processes for Older Adults: A Delphi Consensus of Geriatric Oncology Experts.

BACKGROUND: Structured care processes that provide a framework for how oncologists can incorporate geriatric assessment (GA) into clinical practice could improve outcomes for vulnerable older adults with cancer, a growing population at high risk of toxicity from cancer treatment. We sought to obtain consensus from an expert panel on the use of GA in clinical practice and to develop algorithms of GA-guided care processes. METHODS: The Delphi technique, a well-recognized structured and reiterative process to reach consensus, was used. Participants were geriatric oncology experts who attended NIH-funded U13 or Cancer and Aging Research Group conferences. Consensus was defined as an interquartile range of 2 or more units, or 66.7% or greater, selecting a utility/helpfulness rating of 7 or greater on a 10-point Likert scale. For nominal data, consensus was defined as agreement among 66.7% or more of the group. RESULTS: From 33 invited, 30 participants completed all 3 rounds. Most experts (75%) used GA in clinical care, and the remainder were involved in geriatric oncology research. The panel met consensus that "all patients aged 75 years or older and those who are younger with age-related health concerns" should undergo GA and that all domains (function, physical performance, comorbidity/polypharmacy, cognition, nutrition, psychological status, and social support) should be included. Consensus was met for how GA could guide nononcologic interventions and cancer treatment decisions. Algorithms for GA-guided care processes were developed. CONCLUSIONS: This Delphi investigation of geriatric oncology experts demonstrated that GA should be performed for older patients with cancer to guide care processes.

Medical students as hospice volunteers: reflections on an early experiential training program in end-of-life care education.

BACKGROUND: Despite an increase in the content of palliative medicine curricula in medical schools, students are rarely exposed to end-of-life (EOL) care through real-patient experiences during their preclinical education. OBJECTIVE: To evaluate the utility and impact of exposure to EOL care for first year medical students (MS-1s) through a hospice volunteer experience. METHODS: Patients and Families First (PFF), a hospice volunteer training program in EOL care, was piloted on three cohorts of MS-1s as an elective. Fifty-five students received 3 hours of volunteer training, and were then required to conduct at least two consecutive hospice visits on assigned patients to obtain course credit. Students' reflective essays on their experiences were analyzed using qualitative methodology and salient themes were extracted by two investigators independently and then collaboratively. RESULTS: The following five themes were identified from students' reflective essays: perceptions regarding hospice patients; reactions regarding self; normalcy of EOL care at home; impact of witnessing death and dying; and suggestions for improving EOL care education for medical students. CONCLUSION: Hospice volunteering during preclinical years may provide valuable experiential training for MS-1s in caring for seriously ill patients and their families by fostering personal reflection and empathic skills, thereby providing a foundation for future patient encounters during clinical training.

Perceptions, attitudes, and experiences of hematology/oncology fellows toward incorporating geriatrics in their training.

The aging of the U.S. population continues to highlight emerging issues in providing care generally for older adults and specifically for older adults with cancer. The majority of patients with cancer in the U.S. are currently 65 years of age or older; therefore, training and research in geriatrics and geriatric oncology are viewed to be integral in meeting the needs of this vulnerable population. Yet, the ways to develop and integrate best geriatrics training within the context of hematology/oncology fellowship remain unclear. Toward this end, the current study seeks to evaluate the prior and current geriatric experiences and perspectives of hematology/oncology fellows. To gain insight into these experiences, focus groups of hematology/oncology fellows were conducted. Emergent themes included: 1) perceived lack of formal geriatric oncology didactics among fellows; 2) a considerable amount of variability exists in pre-fellowship geriatric experiences; 3) shared desire to participate in a geriatric oncology-based clinic; 4) differences across training levels in confidence in managing older adults with cancer; and 5) identification of specific criteria on how best to approach older adults with cancer in a particular clinical scenario. The present findings will help guide future studies in evaluating geriatrics among hematology/oncology fellows across institutions. They will also have implications in the development of geriatrics curricula and competencies specific to hematology/oncology training.

Integrating diabetes self-management interventions for mexican-americans into the catholic church setting.

Churches provide an innovative and underutilized setting for diabetes self-management programs for Latinos. This study sought to formulate a conceptual framework for designing church-based programs that are tailored to the needs of the Latino community and that utilize church strengths and resources. To inform this model, we conducted six focus groups with mostly Mexican-American Catholic adults with diabetes and their family members (N = 37) and found that participants were interested in church-based diabetes programs that emphasized information sharing, skills building, and social networking. Our model demonstrates that many of these requested components can be integrated into the current structure and function of the church. However, additional mechanisms to facilitate access to medical care may be necessary to support community members' diabetes care.

Physician eye contact and elder patient perceptions of understanding and adherence.

OBJECTIVE: To Examine physician eye contact (EC), patient understanding and adherence. METHODS: Secondary analysis of National Institute of Aging videotapes (N=52) of physician-elder patients in two visit types: (1) routine (n=20); (2) anxiety-provoking (n=32) was conducted. Self-reports of understanding and adherence were used. History-taking segments were qualitatively and quantitatively analyzed for relationships between EC, understanding and adherence. RESULTS: Qualitative analysis showed: (1) two salient EC elements--frequency, type (brief or sustained)--and verbal synchronicity were commonly invoked; (2) conjoint unfolding of three communication elements--"looking, listening and talking"--may be salient for patient outcomes; (3) despite differing EC patterns in routine and anxiety provoking visits, statistical analyses showed patient understanding and adherence ratings were similar in the sample population comprising two visit types; no significant correlations between EC elements and understanding and adherence were found. CONCLUSIONS: Salience of EC for patient-centered communication is shown in prior research. Present findings broaden the significance of EC by including verbal synchronicity. Methodological limitations may account for no significant correlations between EC and patient outcomes. PRACTICE IMPLICATIONS: Using suggested framework for operationalizing EC elements, including verbally synchronous communication, may facilitate patient-centeredness and have positive implications for patient understanding and adherence.

Patient trust in physicians and shared decision-making among African-Americans with diabetes.

This study explores patient trust in physicians and its relationship to shared decision-making (SDM) among African-Americans with diabetes (types 1 and 2). We conducted a series of focus groups (n = 27) and in-depth interviews (n = 24). Topic guides were developed utilizing theoretical constructs. Each interview was audiotaped and transcribed verbatim. Each transcript was independently coded by two randomly assigned members of the research team; codes and themes were identified in an iterative fashion utilizing Atlas.ti software. The mean age of study participants was 62 years and 85% were female. We found that (1) race as a social construct has the potential to influence key domains of patient trust (interpersonal/relationship aspects and medical skills/technical competence), (2) the relationship between patient trust and shared decision-making is bidirectional in nature, and (3) enhancing patient trust may potentially increase or decrease SDM among African-Americans with diabetes. Mistrust of physicians among African-Americans with diabetes may partially be addressed through (1) patient education efforts, (2) physician training in interpersonal skills and cultural competence, and (3) physician efforts to engage patients in SDM. To help enhance patient outcomes among African-Americans with diabetes, physicians might consider incorporating strategies to simultaneously engender their patients' trust and encourage shared decision-making.

"One Can Learn From Other People's Experiences": Latino adults' preferences for peer-based diabetes interventions.

PURPOSE: To assess Latino adults' preferences for peer-based diabetes self-management interventions and the acceptability of the church setting for these interventions. METHODS: The authors partnered with 2 predominantly Mexican American churches in Chicago and conducted 6 focus groups with 37 adults who had diabetes or had a family member with diabetes. They assessed participant preferences regarding group education and telephone-based one-to-one peer diabetes self-management interventions. Systematic qualitative methods were used to identify the types of programming preferred by participants in the church setting. RESULTS: Participants had a mean (SD) age of 53 (11) years. All participants were Latino, and more than half were born in Mexico (60%). Most participants were female (78%), had finished high school (65%), and had health insurance (57%). Sixty-five percent reported having a diagnosis of diabetes. Many participants believed the group-based and telephone-based one-to-one peer support programs could provide opportunities to share diabetes knowledge. Yet, the majority stated the group education model would offer more opportunity for social interaction and access to people with a range of diabetes experience. Participants noted many concerns regarding the one-to-one intervention, mostly involving the impersonal nature of telephone calls and the inability to form a trusting bond with the telephone partner. However, the telephone-based intervention could be a supplement to the group educational sessions. Participants also stated the church would be a familiar and trusted setting for peer-based diabetes interventions. CONCLUSIONS: Church-based Latinos with diabetes and their family members were interested in peer-based diabetes self-management interventions; however, they preferred group-based to telephone-based one-to-one peer programs.

Nurses' attitudes and experiences surrounding palliative sedation: components for developing policy for nursing professionals.

BACKGROUND: Nurses play an integral role in providing care for patients with end of life (EOL) symptoms refractory to conventional treatments and that may necessitate palliative sedation (PS). A paucity of research on nurses' attitudes, knowledge, and experience with PS exists, despite nurses being instrumental in evaluating its appropriateness and carrying out the care plan. OBJECTIVE: The objective of the study was to elicit nurses' perspectives and conceptualizations of knowledge and skills needed to administer PS in order to inform development of a hospital policy that addresses identified concerns. METHODS: Four focus groups were conducted with nurses likely to have had exposure to PS (oncology, intensive care, and hospice) at an academic medical center. Focus groups were audiotaped, transcribed verbatim, and coded for salient themes. Grounded theory principles were used for the analysis. RESULTS: Among the four focus groups (n=31), 87% were female, 58% between the ages of 36 and 55, and more than 40% reported 10-plus years of providing patient care. Five domains emerged as important in developing a PS policy: 1) ability to define PS; 2) criterion for using PS; 3) skill set for administering PS; 4) policy and procedural guidelines; and 5) education on PS and EOL care. CONCLUSIONS: Nurses identified knowledge, skills, and guidelines as key considerations for implementing PS. Comprehensive policies along with adequate training are needed to expand the availability of PS in acute care hospitals and hospice programs.

Fecal bacteriotherapy for ulcerative colitis: patients are ready, are we?

BACKGROUND: Fecal bacteriotherapy (FB) has been proposed as a safe and effective alternative treatment for a number of gastrointestinal conditions including ulcerative colitis (UC). We performed a qualitative study to explore the attitudes and concerns of adult patients and parents of children with UC regarding FB as a potential treatment. METHODS: We conducted six focus groups for adult patients with UC and parents of children with UC or indeterminate colitis. Participants were asked about their perceptions of and interest in FB as a treatment for UC. Sessions were recorded, transcribed, and reviewed to identify domains, themes, and major concepts. RESULTS: The focus groups included 15 adult patients and seven parents of children with colitis. We identified five major domains pertaining to FB: impressions of treatment, benefits, risks, potential mechanisms, and social concerns. All but one participant expressed interest in FB and several wished it were already available. Participants compared FB to probiotics, felt it was "natural," easier than current therapies, and with donor screening would be safe. Although initial distaste and the "yuck factor" were uniformly mentioned, these concerns were outweighed by perceived benefits. CONCLUSION: This is the first study to examine important ethical and social issues surrounding FB as a treatment for UC. Given adequate supporting research, donor selection, and screening, adult patients and parents of children with UC will consider FB and are eager for it to become available. These findings have important implications for future microbiome-based treatments.

Eye contact in patient-centered communication.

OBJECTIVE: To understand the relationship between eye contact and patient-centered communication (PC) in physician-elder patient interactions. METHODS: Two instruments-Patient-centered Behavior Coding Instrument (PBCI) and Eurocommunication Global Ratings Scale-were used to measure PC in 22 National Institute of Aging videotapes. Eye contact was measured using a refined eye contact scale in NDEPT. Qualitative observational techniques were used to understand how eye contact can implicate communication. RESULTS: 'High' eye contact tapes were found to be 'high' in PC using both instruments. However, the majority of 'low' tapes were also found to be 'high' in PC. Physicians' behavior distinctly differed in two ways: (1) high tapes were characterized by more 'sustained' eye contact episodes; low tapes consisted of a greater number of 'brief' episodes; (2) brief episode tapes showed a greater focus on 'charts', i.e. 'listening' was bereft of 'looking'; sustained episodes showed a focus on 'patients', i.e. 'listening' was accompanied by 'looking' indicating patient-centered communication. CONCLUSIONS: A comprehensive understanding of elder patient-physician interaction needs to include both-'listening' and 'looking'-components of patient-centered communication. PRACTICE IMPLICATIONS: Eye contact serves as a salient factor in the expression of PC, making it imperative to incorporate as a nonverbal dimension in PC instruments.

Race and shared decision-making: perspectives of African-Americans with diabetes.

Shared decision-making (SDM) is an important component of patient-centered healthcare and is positively associated with improved health outcomes (e.g. diabetes and hypertension control). In shared decision-making, patients and physicians engage in bidirectional dialogue about patients' symptoms and treatment options, and select treatment plans that address patient preferences. Existing research shows that African-Americans experience SDM less often than whites, a fact which may contribute to racial disparities in diabetes outcomes. Yet little is known about the reasons for racial disparities in shared decision-making. We explored patient perceptions of how race may influence SDM between African-American patients and their physicians. We conducted in-depth interviews (n=24) and five focus groups (n=27) among a purposeful sample of African-American diabetes patients aged over 21 years, at an urban academic medical center in Chicago. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted iteratively; each transcription was independently coded by two research team members. Although there was heterogeneity in patients' perceptions about the influence of race on SDM, in each of the SDM domains (information-sharing, deliberation/physician recommendations, and decision-making), participants identified a range of race-related issues that may influence SDM. Participants identified physician bias/discrimination and/or cultural discordance as issues that may influence physician-related SDM behaviors (e.g. less likely to share information such as test results and more likely to be domineering with African-American patients). They identified mistrust of white physicians, negative attitudes and internalized racism as patient-related issues that may influence African-American patients' SDM behaviors (e.g. less forthcoming with physicians about health information, more deference to physicians, less likely to adhere to treatment regimens). This study suggests that race-related patient and physician-related barriers may serve as significant barriers to shared decision-making between African-American patients and their physicians. Finding innovative ways to address such communication barriers is an important area of future research.

Palliative Access Through Care at Home: experiences with an urban, geriatric home palliative care program.

The aging of the U.S. population has resulted in a large number of persons with multiple, chronic illnesses and gradual functional decline. Many older adults with these conditions are homebound and have great difficulty accessing medical care. They are also more likely to suffer from unaddressed symptoms and end-of-life care needs. Certain groups, such as African-American patients and patients with dementia, are even less likely to access palliative care and hospice services. Although the informal caregivers attending to such persons may become overwhelmed without adequate support, palliative care, which covers a broad population, is an optimal way to address many of these needs. This article describes a unique, urban, home-based geriatrics palliative care program (Palliative Access Through Care at Home (PATCH)) designed to address some of these unmet needs. After 1 year of providing service, a mixed-methods study consisting of chart review, telephone interviews, and face-to-face interviews was conducted to assess caregiver expectations of and satisfaction with the program. Caregivers for the elderly, mostly African-American patients, more than half of whom had dementia, were overall very satisfied with their experience, despite the large amount of time necessary to provide the care that patients required. Themes extracted during qualitative analysis were the desire to remain at home, the need for easy access to a practitioner specializing in geriatrics and palliative medicine, and the challenges of transitions of care. PATCH was able to address many of these needs and provide high levels of caregiver satisfaction.