"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care.

BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. OBJECTIVE: This study explored US South Asian youths' knowledge of, and attitudes towards hospice care. DESIGN: Qualitative study, using focus group discussions. METHODS: Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion. RESULTS: Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care. CONCLUSIONS: Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.

US South Asian Youths' Perspectives on the Use of Complementary and Alternative Medicine (CAM).

Complementary and alternative medicine (CAM) includes varied medical and healthcare systems, healing practices, and products that are outside of allopathy/biomedicine. The aim of this study was to examine US South Asian youths' beliefs, practices, decision-making, and experiences of using CAM. Ten focus group discussions with 36 participants were conducted. Data were coded deductively and inductively by four coders, working in pairs. Thematic analysis was performed. Disagreements were resolved through consensus. The results showed that CAM was appealing because of its often low cost, ease of access, family traditions to use CAM, and the perception that it was safe to use. Participants exercised pluralistic health choices. Some responses suggested a hierarchy wherein allopathy was used for serious, acute issues, and CAM for much of the remaining issues. The high use of and trust in CAM among young US South Asians raises important issues (e.g., provider support and integration to prevent potential interactions and avoid delaying allopathic treatment). More exploration is needed about the decision-making processes of US South Asian youth, including the perceived benefits/limitations of allopathy and CAM. US healthcare practitioners should familiarize themselves with South Asian social and cultural beliefs about healing to provide culturally-appropriate services and enhance patient care.

Concordance in spousal reports of current contraceptive use in India.

Couple-level reports of contraceptive use are important as wives and husbands may report their use differently. Using matched couple data (N = 63,060) from India's NFHS-4 (2015-16), this study examined concordance in spousal reports of current contraceptive use and its differentials. Reporting of contraceptive use was higher among wives (59.0%) than husbands (25.2%). Concordance was low; 16.5% of couples reported the current use of the same method, while 20.4% reported the current use of any method. Many husbands did not report female sterilization as a means of contraception being used by their wives. Reconstruction of contraceptive use among men, based on the 'ever-use of sterilization' question asked to men, increased concordance by 10%. Multivariate analyses showed that concordance was low in urban and southern India, among younger women and among women with a lower wealth index. Men's control over household decision-making and negative attitudes towards contraception were associated with lower concordance. The findings highlight the importance of using couple-level data to estimate contraceptive prevalence, and the role of education programmes to inculcate positive attitudes towards contraception, fostering gender equality and involving men in family planning efforts. The results also raise the issue of data quality as the survey questions were asked differently to men and women, which might have contributed to the wide observed discordance.

"The Ones that Care Make all the Difference": Perspectives on Student-Faculty Relationships.

Student-faculty (S-F) interactions that are conducive to students' learning can help reduce the retention and graduation gaps in higher education, especially for college students from underrepresented and underprivileged backgrounds. The aim of the study was to explore students' perceptions of their interactions with faculty, and the subjective impact of these interactions on students' academic and personal life. We analyzed qualitative data from a larger study with the goal of providing best practice models to support students experiencing displacement and food insecurity. Through purposive sampling techniques, 53 students from a diverse public university were recruited. Recruitment strategies focused on students who were likely to be facing academic, personal, and/or financial challenges that may affect their academic performance. Students were interviewed three to four times over a four to six-month period, using semi-structured interview guides. Our multidisciplinary team analyzed data thematically in team-based coding sessions using an online software. We identified four themes for faculty practices: (1) Creating Pedagogical Space, (2) Being Inclusive and Aware, (3) Being Engaged and Engaging Students, (4) Doing More Than Teaching. Based on students' perspectives, these practices lead to supportive and responsive S-F relationships that facilitate learning and success. The findings have implications related to how faculty can encourage caring S-F relationships and create conducive learning environments where students can thrive, especially during times of crisis.

U.S. Providers' Perceptions of the Psychosocial Needs of Seriously Ill Patients of South Asian Origin: Implications for Health Social Work.

The number of individuals of South Asian origin receiving health care in the United States is rapidly growing, yet little is known about their psychosocial needs. To better inform the provision of culturally competent social work services for this patient population, researchers sought to describe U.S. health care providers' perceptions of the psychosocial needs of seriously ill patients of South Asian origin. To do so, they conducted a multimethod qualitative descriptive study, collecting data during focus groups and individual interviews of health care providers (N = 57) and analyzing them via directed content analysis. Identified patient needs included addressing financial and legal problems, challenges completing activities of daily living, spiritual or existential concerns, psychosocial experiences of unresolved physical symptoms, and psychological distress. Providers also emphasized the importance of supporting patients' family members to aid in their caregiving abilities and to enhance their quality of life. As social workers in U.S. health care settings encounter a growing number of patients of South Asian origin, a more comprehensive understanding of their psychosocial needs is imperative. Study findings suggest that health social workers should provide psychosocial care that encompasses culture-specific needs and psychosocial care that can be provided in a culturally responsive manner.

Health-Care Providers' Perspectives on Decision-Making Among Seriously Ill Patients of South Asian Origin in the United States.

BACKGROUND: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care. OBJECTIVE: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin. METHOD: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus. RESULTS: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making. CONCLUSIONS: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.

Communication Challenges and Strategies of U.S. Health Professionals Caring for Seriously Ill South Asian Patients and Their Families.

BACKGROUND: While effective communication is important in the care of seriously ill patients, little is known about communication challenges faced by healthcare providers serving U.S. patients of South Asian origin, one of the fastest growing demographic groups in the United States. OBJECTIVE: Researchers sought to examine communication challenges faced by healthcare providers serving seriously ill South Asian patients and their families and present strategies recommended by providers for effective communication. DESIGN: Researchers conducted a thematic analysis of qualitative data obtained through focus groups and individual interviews with 57 healthcare providers, including physicians, social workers, nurses, chaplains, and others drawn from different healthcare settings in one Midwestern city. RESULTS: While acknowledging the considerable diversity within the U.S. South Asian community, participants discussed three types of communication challenges they often encounter when serving this population: ensuring effective interpretation, identifying a spokesperson, and challenges posed by different cultural norms. Participants shared strategies to address these challenges such as proactively inquiring about patients' and families' preferences and encouraging early appointment of a spokesperson. CONCLUSIONS: While providers should avoid stereotyping patients, an awareness of common challenges and adoption of recommended strategies to address these challenges may enhance the provision of culturally responsive person-centered services for seriously ill South Asian patients and their families receiving care in the United States.

Does Volunteering Experience Influence Advance Care Planning in Old Age?

Advance care planning (ACP) increases the likelihood patients will receive end-of-life care that is congruent with their preferences and lowers stress among both patients and caregivers. Previous efforts to increase ACP have mainly focused on information provision in the very late stage of life. This study examines whether a relationship exists between volunteering and ACP, and whether this relationship is associated with social support. The sample comprises 877 individuals who were aged 55+ in 2008, and were deceased before 2010. The sample is derived from seven waves (1998-2010) of data from the Health and Retirement Study. Logistic regression results showed that overall ACP and durable power of attorney for health care (DPAHC) were both higher (OR = 1.61 and 1.71, respectively) for older adults with volunteering experience in the past 10 years than those without such experience. Available social support (relatives and friends living nearby) was not associated with the relationship between volunteering and ACP. Other factors related to ACP included poorer health, death being expected, death due to cancer, older age, and being a racial minority. Involving older people in volunteer work may help to increase ACP. Future research is encouraged to identify reasons for the association between volunteering and ACP.

Exploring Changes in Interagency Collaboration Following AIDS United's Positive Charge: A Five-Site HIV Linkage and Retention in Care Program.

BACKGROUND: Many out-of-care people living with HIV have unmet basic needs and are served by loosely connected agencies. Prior research suggests that increasing agencies' coordination may lead to higher quality and better coordinated care. This study examines four U.S. interagency networks in AIDS United's HIV linkage and retention in care program. This study explores changes in the networks of implementing agencies. METHODS: Each network included a lead agency and collaborators. One administrator and service provider per agency completed an online survey about collaboration prior to and during Positive Charge. We measured how many organizations were connected to one another through density, or the proportion of reported connections out of all possible connections between organizations. Network centralization was measured to investigate whether this network connectivity was due to one or more highly connected organizations or not. To compare collaboration by type, density and centralization were calculated for any collaboration and specific collaboration types: technical assistance, shared resources, information exchange, and boosting access. To characterize the frequency of collaboration, we examined how often organizations interacted by "monthly or greater" versus "less than monthly." RESULTS: Density increased in all networks. Density was highest for information exchange and referring clients. When results were restricted to "monthly or greater," the densities of all networks were lower. CONCLUSIONS: This study suggests that a targeted linkage to care initiative may increase some collaboration types among organizations serving people living with HIV. It also provides insights to policy makers about how such networks may evolve.

Perspectives of HIV agencies on improving HIV prevention, treatment, and care services in the USA.

HIV healthcare services in the USA are made available through a complex funding and delivery system. We present perspectives of HIV agencies on improvements that could lead to an ideal system of HIV prevention, treatment and care. We conducted semi-structured interviews with representatives from 21 HIV agencies offering diverse services in Baltimore, MD. Thematic analysis revealed six key themes: (1) Focusing on HIV prevention, (2) Establishing common entry-points for services, (3) Improving information availability, (4) Streamlining funding streams, (5) Removing competitiveness and (6) Building trust. We recommend that in addition to addressing operational issues regarding service delivery and patient care, initiatives to improve HIV service systems should address underlying social issues such as building trust.

Analysing collaboration among HIV agencies through combining network theory and relational coordination.

Agencies with different foci (e.g. nutrition, social, medical, housing) serve people living with HIV (PLHIV). Serving needs of PLHIV comprehensively requires a high degree of coordination among agencies which often benefits from more frequent communication. We combined Social Network theory and Relational Coordination theory to study coordination among HIV agencies in Baltimore. Social Network theory implies that actors (e.g., HIV agencies) establish linkages amongst themselves in order to access resources (e.g., information). Relational Coordination theory suggests that high quality coordination among agencies or teams relies on the seven dimensions of frequency, timeliness and accuracy of communication, problem-solving communication, knowledge of agencies' work, mutual respect and shared goals. We collected data on frequency of contact from 57 agencies using a roster method. Response options were ordinal ranging from 'not at all' to 'daily'. We analyzed data using social network measures. Next, we selected agencies with which at least one-third of the sample reported monthly or more frequent interaction. This yielded 11 agencies whom we surveyed on seven relational coordination dimensions with questions scored on a Likert scale of 1-5. Network density, defined as the proportion of existing connections to all possible connections, was 20% when considering monthly or higher interaction. Relational coordination scores from individual agencies to others ranged between 1.17 and 5.00 (maximum possible score 5). The average scores for different dimensions across all agencies ranged between 3.30 and 4.00. Shared goals (4.00) and mutual respect (3.91) scores were highest, while scores such as knowledge of each other's work and problem-solving communication were relatively lower. Combining theoretically driven analyses in this manner offers an innovative way to provide a comprehensive picture of inter-agency coordination and the quality of exchange that underlies collaborative ties. These methods together can identify areas that could be targeted to promote closer ties.

Perspectives of Health Care Providers on US South Asians' Attitudes Toward Pain Management at End of Life.

A lack of research on pain management among seriously ill South Asians reveals a critical gap in the knowledge base regarding culturally responsive end-of-life care. This qualitative descriptive study investigated the perspectives of health care providers that have cared for seriously ill older South Asians, on the attitudes of US South Asians toward the management of pain experienced at end of life and the factors that influenced these attitudes. Thematic analysis of interviews and focus group discussions with 57 health care providers indicated that providers perceive South Asian patients and families to be generally reluctant to use medications to treat pain experienced at end of life. Detailed description of patient-related and culturally based reasons for this reluctance is provided along with implications for hospice and palliative care.

Trends in Engagement in Advance Care Planning Behaviors and the Role of Socioeconomic Status.

We investigated the trends in advance care planning (ACP) between 2002 and 2010 and whether socioeconomic status explained such trends. We conducted a pooled regression analysis of Health and Retirement Study data from 6052 proxies of deceased individuals. We studied 3 ACP behaviors, discussing end-of-life (EOL) care preferences, providing written EOL care instructions, and appointing a durable power of attorney for health care (DPAHC). ACP increased by 12% to 23% every 2 years from 2002 to 2010. Higher household income increased the odds of having a DPAHC. Education was not associated with ACP. Socioeconomic status alone appears to play a very limited role in predicting ACP. Engagement in ACP likely depends on a constellation of many social and contextual factors.

The Dog narratives: Benefits of the human-animal bond for women with HIV.

INTRODUCTION: Companion animals play important roles in the lives of people managing the many symptoms associated with a chronic illness such as HIV. This study explored meaningful examples of pets, particularly dogs, and their place in support networks among women living with AIDS/HIV. METHOD: Data were collected via focus group, as part of a larger Photovoice project. Qualitative analysis discovered three key related themes. RESULTS: Emerging themes included pet as spiritual custodian, pet as unconditional source of support, and pet providing a sense of purpose. DISCUSSION: The comments these participants made about their dogs allowed us to explore culturally embedded notions about animal companionship; the ability to know when one is sick, frightened, emotionally upset, or facing a spiritual crisis. The women.

The use of memoranda of understanding in fostering inter-agency collaboration: a qualitative study of health services agencies serving vulnerable populations in Baltimore, USA.

INTRODUCTION: We examined whether mandated collaboration reflected in memoranda of understanding (MOUs) developed by health agencies to meet funder expectations is effective in fostering inter-agency collaboration. METHODS: We conducted 22 semi-structured interviews from late 2010 to early 2012 in Baltimore, USA, with representatives of 17 HIV service agencies, three local health department units, and one agency that closed in 2008 (two interviews). RESULTS: While there was no consensus, most respondents perceived MOUs negatively, mainly because the process of obtaining signed MOUs was time consuming; frontline staff was mostly unaware of MOUs, agencies did not necessarily work with agencies they signed MOUs with and MOUs were rarely evaluated after being signed. A few agencies reported that MOUs could keep agencies focused and set mutual expectations. The local health department acknowledged shortcomings in MOUs but emphasized that MOUs could help agencies plan for referring clients when their own capacity was full. CONCLUSIONS: Although many agencies acknowledged the importance of collaboration, most respondents found that MOUs lacked practical utility. Grant-makers should consult sub-grantees to develop alternative means of fostering collaboration that would be perceived as relevant by both parties.

Traditional expectations versus US realities: first- and second-generation Asian Indian perspectives on end-of-life care.

BACKGROUND: Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US. OBJECTIVE: To examine the perspectives of first- and second-generation South Asians living in the US regarding end-of-life care. DESIGN: Focus group study. Discussions explored participant preferences and experiences with family members facing the end of life. PARTICIPANTS: Twelve first-generation and 11 second-generation self-identified Asian Indians living in the mid-Atlantic region. APPROACH: Content analysis of focus group transcripts. RESULTS: First-generation participants ranged in age from 41 to 76 years and were evenly split by gender. Second-generation participants ranged in age from 23 to 36 years and included seven women and four men. All participants were highly educated, and two thirds were either studying or working in a health care field. All but two subjects were Hindu. Several themes emerged that highlighted cultural differences and challenges for this population in the context of end-of-life care: attitudes toward death and suffering; family duty; and preferences for information disclosure and decision making. Participants described cultural challenges due to the evolution of traditional roles, lack of explicit discussion between patients and family members about preferences and care expectations, and a tension between wanting to meet traditional expectations and the challenges in doing so given US social realities. CONCLUSIONS: Traditional cultural values, such as duty to family, greatly influenced end-of-life care preferences and retained importance across generations. Clinicians caring for Asian Indian patients at the end of life may be better able to assess care preferences after exploring the complex interplay between traditional expectations and specific social realities for each patient. Particular attention should be given to attitudes toward death and suffering, family duty, and preferences for information disclosure and decision making.

Correlates of non-medical prescription drug use among a cohort of injection drug users in Baltimore City.

Despite reports of increasing non-medical prescription drug use, relatively few studies have systematically evaluated the prevalence and correlates of non-medical prescription drug use, particularly in populations that might be especially vulnerable (e.g., injection drug users [IDUs]). We examined factors associated with non-medical prescription drug use among a community-based cohort of current and former IDUs in Baltimore (The ALIVE Study). We conducted a cross-sectional analysis of data from cohort participants that responded to a survey that included questions on non-medical prescription drug use between 2005-06 (n=1320). Non-medical prescription drug use was considered to be use of any of the following: Opiates (Oxycontin, Percocet), Benzodiazepines or Clonidine, purchased on the street and taken orally within the last six months. Data on other covariates of interest (e.g., demographics, substance use, general health) was obtained through a standardized interview. The median age was 46 years; 66% were male, 85% were African-American. Twenty one percent reported any non-medical prescription drug use; 12% reported using more than one drug. Non-medical use of opiates was most common (17%). In multivariate analysis, non-medical prescription drug use was significantly associated with Caucasian race (prevalence ratio [PR]: 1.79), self-reported bodily pain (PR: 1.58), hazardous alcohol use (PR: 1.47), marijuana use (PR: 1.65), non-injection cocaine/heroin use (PR: 1.70), diverted use of buprenorphine (PR: 1.51) or methadone (PR: 2.51), and active injection drug use (PR: 3.50; p<0.05 for all). The association between bodily pain and non-medical prescription drug use was stronger among persons that were not using substances (marijuana, injecting drugs, snorting/smoking heroin, cocaine, using crack) as compared to those using these substances. The high prevalence of non-medical prescription drug use among this population warrants further research and action. Information on the risks of nonmedical prescription drug use especially overdose, should be incorporated into interventions targeted at IDUs.

HIV/AIDS interventions in Bangladesh: what can application of a social exclusion framework tell us?

Bangladesh has maintained a low HIV prevalence (of less than 1%) despite multiple risk factors. However, recent serological surveillance data have reported very high levels of HIV infection among a subgroup of male injecting drug-users (IDUs). This suggests that an HIV/AIDS epidemic could be imminent in Bangladesh. Although biomedical and behavioural change projects are important, they do not address the root causes of observed risky behaviours among 'high-risk' groups. In Bangladesh, these groups include sex workers, IDUs, males who have sex with males, and the transgender population-hijra-who are all excluded groups. Using a social exclusion framework, this paper analyzed existing literature on HIV in Bangladesh to identify social, economic and legal forces that heighten the vulnerability of such excluded groups to HIV/AIDS. It found that poverty and bias against women are major exclusionary factors. The paper presents areas for research and for policy action so that the social exclusion of high-risk groups can be reduced, their rights protected, and an HIV epidemic averted.

Impaired folliculogenesis and ovulation in older reproductive aged women.

The objective of this study was to test the hypothesis that older reproductive aged women ovulate at a smaller follicle diameter and are more likely to produce multiple follicles during their menstrual cycle compared with midreproductive aged women. We performed a comparative study of 16 midreproductive aged women (MRA; 22-34 yr old) and 34 older reproductive aged women (ORA; > or = 45 yr old). Women underwent serial transvaginal ultrasounds to follow follicular growth over 1 menstrual cycle. A subset of women (nine MRA and 19 ORA) had daily blood sampling. Scans were initiated within 1 wk of menses and were performed at least 3 times/wk until evidence of follicular collapse was observed. If there was no evidence of follicle growth beyond 10 mm by 20 d, observations (ultrasounds and blood sampling) were ended. Follicle growth was organized backward from maximum presumed preovulatory diameter. Hormones were standardized to d 0, the day when progesterone levels exceeded 2 ng/ml. Group comparisons were performed using ANOVA with Mann-Whitney post hoc testing and Kruskal-Wallis testing for integrated hormones. The main outcome measures were peak follicle diameter, follicle growth patterns, and circulating LH, FSH estradiol, progesterone, inhibin A, and inhibin B. Six of 34 ORA women never underwent serial ultrasound. An additional 5 ORA women failed to ovulate on the basis of daily blood sampling or had no evidence of follicle growth beyond 10 mm by 20 d. Two of 16 MRA women were excluded: 1 due to severely decreased ovarian reserve at screening and 1 due to failure of follicle growth by cycle d 20. Small follicle counts in the follicular phase of the cycle (beginning of cycle through d -4) were greater in MRA women compared with ORA women (4.7 +/- 0.56 vs. 3.4 +/- 0.34; P = 0.042). Among presumed ovulatory cycles, ORA women demonstrated considerably more variable follicle growth patterns, with larger initial follicle size, but a trend toward smaller peak follicle diameters (15.22 +/- 0.95 vs. 17.85 +/- 0.71 mm; P = 0.07). ORA women were twice as likely to have multiple follicles as younger women (odds ratio, 2.06; 95% confidence interval, 0.93-4.6), but this observed difference was not statistically significant (P = 0.083). Comparisons of LH, FSH, estradiol, and progesterone between ORA (n = 14) and MRA (n = 8) women indicated the expected increase in FSH secretion, most evident in the early follicular phase of the cycle. Estradiol and progesterone concentrations did not differ between these groups. Inhibin B was decreased in ORA women compared with MRA women (P = 0.030). Despite normal-appearing patterns of follicle growth, grossly abnormal hormonal patterns were observed in some of the ORA women's cycles. Other cycles demonstrated a failure of folliculogenesis. These patterns are not observed in MRA women's cycles. ORA women ovulated at a smaller mean follicle diameter and had larger initial follicle diameters than younger women. The overall follicle growth curves of the older women tended to be flatter than those of the younger women. Taken together, the data suggest that follicle growth begins earlier in the cycle of perimenopausal women, but growth progresses more slowly. Ovulation may occur at an earlier stage of growth in association with reproductive aging.