Identifying opportunities for prevention of adverse outcomes following female genital fistula repair: protocol for a mixed-methods study in Uganda.

BACKGROUND: Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence, and other morbidity may occur during fistula development. Women with fistula are stigmatized, limit social and economic engagement, and experience psychiatric morbidity. Improved surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events. This study aims to quantify these adverse risks and inform clinical and counseling interventions to optimize women's health and quality of life following fistula repair through: identifying predictors and characteristics of post-repair fistula breakdown and recurrence (Objective 1) and post-repair incontinence (Objective 2), and to identify feasible and acceptable intervention strategies (Objective 3). METHODS: This mixed-methods study incorporates a prospective cohort of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers in Uganda (Objectives 1-2) followed by qualitative inquiry among key stakeholders (Objective 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to inform feasibility and acceptability of recommendations. DISCUSSION: Participant recruitment is underway. This study is expected to identify key predictors that can directly improve fistula repair and post-repair programs and women's outcomes, optimizing health and quality of life. Furthermore, our study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health. Trial Registration ClinicalTrials.gov Identifier: NCT05437939.

Female genital fistula is a traumatic birth injury which occurs where access to emergency childbirth care is poor. It causes uncontrollable urine leakage and is associated with other physical and psychological symptoms. Due to the urine leakage and its odor, women with fistula are stigmatized which has mental health and economic consequences. Ensuring women's access to fistula surgery and ongoing wellbeing is important for limiting the impact of fistula. After fistula surgery, health risks such as fistula repair breakdown or recurrence or changes to urine leakage can happen, but studies during this time are limited. Our study seeks to measure these health risks and factors influencing these risks quantitatively, and work with patients, community members, and fistula care providers to come up with solutions. We will recruit up to 1000 participants into our study at the time of fistula surgery and follow them for three years. We will collect data on patient sociodemographic characteristics, clinical history, and behavior after fistula repair through patient survey and medical record review. If participants have changes in urine leakage, they will be asked to return to the fistula repair hospital for exam. We will interview about 80 individuals to obtain their ideas for feasible and acceptable intervention options. We expect that this study will help to understand risk factors for poor health following fistula repair and, eventually, improve women's health and quality of life after fistula.

Increased diagnostic yield from negative whole genome-slice panels using automated reanalysis.

We evaluated the diagnostic yield using genome-slice panel reanalysis in the clinical setting using an automated phenotype/gene ranking system. We analyzed whole genome sequencing (WGS) data produced from clinically ordered panels built as bioinformatic slices for 16 clinically diverse, undiagnosed cases referred to the Pediatric Mendelian Genomics Research Center, an NHGRI-funded GREGoR Consortium site. Genome-wide reanalysis was performed using Moon™, a machine-learning-based tool for variant prioritization. In five out of 16 cases, we discovered a potentially clinically significant variant. In four of these cases, the variant was found in a gene not included in the original panel due to phenotypic expansion of a disorder or incomplete initial phenotyping of the patient. In the fifth case, the gene containing the variant was included in the original panel, but being a complex structural rearrangement with intronic breakpoints outside the clinically analyzed regions, it was not initially identified. Automated genome-wide reanalysis of clinical WGS data generated during targeted panels testing yielded a 25% increase in diagnostic findings and a possibly clinically relevant finding in one additional case, underscoring the added value of analyses versus those routinely performed in the clinical setting.

Randomized Controlled Trial of a Mobile Health Intervention to Promote Retention and Adherence to Preexposure Prophylaxis Among Young People at Risk for Human Immunodeficiency Virus: The EPIC Study.

BACKGROUND: Young men who have sex with men are among the most vulnerable to human immunodeficiency virus (HIV) infection. Although preexposure prophylaxis (PrEP) has demonstrated effectiveness, adherence and retention have been low among youth. METHODS: We conducted a randomized controlled trial to evaluate the impact of a youth-tailored, bidirectional text-messaging intervention (PrEPmate) on study retention and PrEP adherence. Young individuals at risk for HIV initiating PrEP within Chicago's safety-net system were randomized 2:1 to receive PrEPmate or standard of care (SoC) for 36 weeks. The primary retention outcome was study-visit completion, and the primary adherence outcome was tenofovir diphosphate (TFV-DP) concentrations ≥700 fmol/punch (consistent with ≥4 doses/week) assessed at 4, 12, 24, and 36 weeks. The impact of PrEPmate on retention and adherence was evaluated using generalized estimating equation logistic models with robust standard errors. RESULTS: From April 2015 to March 2016, 121 participants enrolled (mean age 24; 27% black, 36% Latino). Participants who received PrEPmate were more likely to attend study visits (86% PrEPmate vs. 71% SoC, odds ratio [OR] = 2.62, 95% confidence interval [CI] 1.24-5.54) and have TFV-DP levels consistent with ≥4 doses/week (72% PrEPmate vs. 57% SoC, OR = 2.05, 95% CI 1.06-3.94). PrEPmate efficacy did not differ significantly by age, race/ethnicity, education, or insurance. Overall, 88% reported PrEPmate to be very/somewhat helpful, and 92% would recommend PrEPmate to others. CONCLUSIONS: An interactive text-messaging intervention had high acceptability and significantly increased study-visit retention and PrEP adherence among young individuals at risk for HIV acquisition. CLINICAL TRIALS REGISTRATION: NCT02371525.

A Study of Sexual Relationship Power among Young Women Who Inject Drugs and Their Sexual Partners.

BACKGROUND: To date, research applying the Sexual Relationship Power Scale (SRPS) has been limited to sexual risk behaviors. OBJECTIVE: We measured levels of sexual relationship power and examined associations between sexual relationship power and injecting and sexual behaviors that place women at increased risk for blood borne infections. METHODS: Using data from a cross-sectional study of young women who inject drugs (WWID) in San Francisco, USA, logistic regression analysis identified independent associations between SRPS and subscale scores (relationship control [RC] and decision making dominance [DMD]) and injecting and sexual behaviors. RESULTS: Of the 68 young WWID, 24 (34%) reported receptive syringe sharing, 38 (56%) reused/shared a cooker to prepare drugs, and 25 (37%) injected someone else's drug residue during the three-months prior to enrollment. Most (60, 88%) reported condomless sex with main sex-partner, 8 (12%) reported transactional sex, and 36 (53%) had two or more recent sex partners. The median SRPS score was 2.98 (IQR: 2.65, 3.18), 3.23 (IQR: 3.23, 3.57) for RC and 2.40 (IQR: 2.20, 2.60) for DMD. No significant associations were detected between SRPS or DMD and injecting or sexual risk behaviors. After adjusting for gender and years injecting, for every one-point increase in RC, women had a 6.70 lower odds of recent condomless sex (95%CI: 0.92, 50.00, p = 0.06), and a 3.90 lower odds of recent transactional sex (95%CI: 1.22, 12.50, p = 0.02). CONCLUSION: Our study findings suggest that some components of sexual relationship power may play a role in sexual risk, but not in injecting risk.

Social-cultural factors in end-of-life care in Belgium: a scoping of the research literature.

BACKGROUND: As end-of-life (EoL) care expands across Europe and the world, service developments are increasingly studied. The sociocultural context in which such changes take place, however, is often neglected in research. AIM: To explore sociocultural factors in EoL care in Belgium as represented by the literature. DESIGN: A scoping of the empirical research literature following a systematic search procedure with a focus on thematic analysis based on the literature findings. DATA SOURCES: Searches were carried out in eight electronic databases, five journals, reference lists, and grey literature (through September 2010). Articles informing about sociocultural issues in EoL care were included. RESULTS: One hundred and fifteen original studies met the inclusion criteria, the majority (107) published between 2000 and 2010. Four major themes were: Setting; Caregivers; Communication; and Medical EoL Decisions (the largest category). Minority Ethnic Groups was an emerging theme. Gaps included: research in Wallonia and Brussels; the role and experiences of informal caregivers; issues of access to palliative care; and experiences of minority ethnic groups. There was a paucity of in-depth qualitative studies. CONCLUSIONS: Various sociocultural factors influence the provision of EoL care in Belgium. This country provides a unique opportunity to witness how euthanasia is put into practice when legalized, in a context where palliative care is also highly developed and where many health care institutions have Catholic affiliation, providing an important example to others. Attention to how the sociocultural context affects EoL care adds to the current evidence base of service provision, which is essential in the further development of EoL care.

Identifying Opportunities for Prevention of Adverse Outcomes Following Female Genital Fistula Repair: Protocol for a Mixed-Methods Study in Uganda.

Background: Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence. Other gynecologic, neurologic and orthopedic morbidity may occur during fistula development. Women with fistula are stigmatized; limit engagement in social, economic, or religious activities; and report high psychiatric morbidity. Improved global surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events, protecting health and quality of life after surgery. This study seeks to identify predictors and characteristics of post-repair fistula breakdown and recurrence (Aim 1) and post-repair incontinence (Aim 2), and to identify feasible and acceptable intervention strategies (Aim 3). Methods: This mixed-methods study incorporates a prospective cohort study of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers and affiliated care sites in Uganda (Aims 1-2) followed by qualitative inquiry among key stakeholders (Aim 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to develop feasible and acceptable intervention concepts for adjustment of identified risk factors. Discussion: Participant recruitment is underway. This study is expected to identify key predictors that can directly improve fistula repair and post-repair programs and women's outcomes, optimizing health and quality of life. Furthermore, our study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health. Trial Registration: ClinicalTrials.gov Identifier: NCT05437939.

Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy.

BACKGROUND: Evidence of low end-of-life (EoL) care service use by minority ethnic groups in the UK has given rise to a body of research and a number of reviews of the literature. This article aims to review and evaluate literature reviews on minority ethnic groups and EoL care in the UK and assess their suitability as an evidence base for policy. METHODS: Systematic review. Searches were carried out in thirteen electronic databases, eight journals, reference lists, and grey literature. Reviews were included if they concerned minority ethnic groups and EoL care in the UK. Reviews were graded for quality and key themes identified. RESULTS: Thirteen reviews (2001-2009) met inclusion criteria. Seven took a systematic approach, of which four scored highly for methodological quality (a mean score of six, median seven). The majority of systematic reviews were therefore of a reasonable methodological quality. Most reviews were restricted by ethnic group, aspect of EoL care, or were broader reviews which reported relevant findings. Six key themes were identified. CONCLUSIONS: A number of reviews were systematic and scored highly for methodological quality. These reviews provide a good reflection of the primary evidence and could be used to inform policy. The complexity and inter-relatedness of factors leading to low service use was recognised and reflected in reviews' recommendations for service improvement. Recommendations made in the UK End-of-Life Care Strategy were limited in comparison, and the Strategy's evidence base concerning minority ethnic groups was found to be narrow. Future policy should be embedded strongly in the evidence base to reflect the current literature and minimise bias.

Simple and effective bacterial-based intratumoral cancer immunotherapy.

BACKGROUND: We describe intratumoral injection of a slow-release emulsion of killed mycobacteria (complete Freund's adjuvant (CFA)) in three preclinical species and in human cancer patients. METHODS: Efficacy and safety were tested in mammary tumors in mice, in mastocytomas in mice and dogs, and in equine melanomas. In mice, survival, tumor growth, and tumor infiltration by six immune cell subsets (by flow cytometry) were investigated and analyzed using Cox proportional hazards, a random slopes model, and a full factorial model, respectively. Tumor growth and histology were investigated in dogs and horses, as well as survival and tumor immunohistochemistry in dogs. Tumor biopsies were taken from human cancer patients on day 5 (all patients) and day 28 (some patients) of treatment and analyzed by histology. CT scans are provided from one patient. RESULTS: Significantly extended survival was observed in mouse P815 and 4T1 tumor models. Complete tumor regressions were observed in all three non-human species (6/186 (3%) of mouse mastocytomas; 3/14 (21%) of canine mastocytomas and 2/11 (18%) of equine melanomas). Evidence of systemic immune responses (regression of non-injected metastases) was also observed. Analysis of immune cells infiltrating mastocytoma tumors in mice showed that early neutrophil infiltration was predictive of treatment benefit. Analysis of the site of mastocytoma regression in dogs weeks or months after treatment demonstrated increased B and T cell infiltrates. Thus, activation of the innate immune system alone may be sufficient for regression of some injected tumors, followed by activation of the acquired immune system which can mediate regression of non-injected metastases. Finally, we report on the use of CFA in 12 human cancer patients. Treatment was well tolerated. CT scans showing tumor regression in a patient with late-stage renal cancer are provided. CONCLUSION: Our data demonstrate that intratumoral injection of CFA has major antitumor effects in a proportion of treated animals and is safe for use in human cancer patients. Further trials in human cancer patients are therefore warranted. Our novel treatment provides a simple and inexpensive cancer immunotherapy, immediately applicable to a wide range of solid tumors, and is suitable to patients in developing countries and advanced care settings.

Injecting-related trust, cooperation, intimacy, and power as key factors influencing risk perception among drug injecting partnerships.

Sharing of injection drug use paraphernalia is a dyadic process linked to the transmission of HIV and hepatitis C virus (HCV). Despite this, limited research exists identifying specific dyadic interpersonal factors driving injecting partners' engagement in needle/syringe and ancillary injecting equipment sharing among young adults. Using semi-structured in-depth interview data collected between 2014 and 2015 from twenty-seven people who inject drugs (PWID), we applied an inductive approach to identify key injection drug-related interpersonal factors and developed a conceptual model integrating the findings based on interdependence theory. Interactions between injecting partners resulted in varying levels of injecting-related trust, cooperation, intimacy, and power. These factors interacted to collectively influence the type and level of risk perceived and enacted by injecting partners. The relationship between these injecting-related interpersonal factors, on the one hand, and risk perception on the other was dynamic and fluctuated between actions that protect the self (person-centered) and those that protect the partnership (partnership-centered). These findings indicate that the interpersonal context exerts substantial influence that shapes risk perception in all types of injecting partnerships. Partnership-focused prevention strategies should consider the dynamics of trust, cooperation, intimacy, and power, in characterizing dyadic risk perceptions and in understanding risky injecting practices among PWID.

Body/Selves and Beyond: Men's Narratives of Sexual Behavior on PrEP.

Although pre-exposure prophylaxis (PrEP) has dramatically impacted HIV prevention, deep engagement with PrEP-takers' own accounts of their sexual behavior is still rare. We report findings from semi-structured interviews with male participants of the US PrEP Demonstration Project. In their narratives, interviewees variously foregrounded their individual selves, interactions with sexual partners, and the biopolitical and historical context of their lives. PrEP served to discursively integrate the multiple selves populating these stories. We argue that medical anthropological notions can help make sense of men's accounts, and PrEP's role in them, advancing a holistic conception of personhood that includes but transcends concern with HIV.

Development and validation of a novel scale for measuring interpersonal factors underlying injection drug using behaviours among injecting partnerships.

BACKGROUND: People who inject drugs with sexual partners or close friends have high rates of syringe/ancillary equipment sharing and HIV and hepatitis C virus (HCV) infection. Although evidence suggests that interpersonal factors underlie these higher risk profiles, there is no quantitative measure of how interpersonal factors operate within injecting relationships. We aimed to develop and validate a quantitative scale to assess levels of injecting drug-related interpersonal factors associated with risky injecting behaviours within injecting partnerships. METHODS: We conducted qualitative interviews with 45 people who inject drugs (PWID) who reported having injecting partners to inform item development, and tested these items in a quantitative study of 140 PWID from San Francisco, USA, to assess internal reliability (Cronbach's alpha) and validity (convergent, and discriminant validity). RESULTS: With results from the qualitative interview data, we developed the Interpersonal Dynamics in Injecting Partnerships (IDIP) scale with 54 final items for 5 subscales of injecting-related interpersonal factors. Exploratory factor analysis revealed 5 factors ("trust", "power", "risk perception", "intimacy", and "cooperation") with eigenvalues of 14.32, 6.18, 3.55, 2.46, and 2.14, explaining 57% of the variance, and indicating good internal reliability (alpha: 0.92-0.68). Strong convergent validity was observed in bivariate logistic regression models where higher levels of trust, intimacy, and cooperation within partnerships were positively associated with partners sharing needles and injecting equipment, whereas higher levels of power and risk perception were negatively associated with partners sharing needles and injecting equipment. CONCLUSIONS: These findings offer strong evidence that the IDIP scale provides a psychometrically sound measure of injecting drug-related interpersonal dynamics. This measurement tool has the potential to facilitate additional investigations into the individual and collective impact of trust, intimacy, power, cooperation, and risk perception on injection drug using behaviours and engagement in HIV and HCV testing and treatment among PWID in a variety of settings.

Healthcare Access and PrEP Continuation in San Francisco and Miami After the US PrEP Demo Project.

BACKGROUND: Pre-exposure prophylaxis (PrEP) for prevention of HIV infection has demonstrated efficacy in randomized controlled trials and in demonstration projects. For PrEP implementation to result in significant reductions in HIV incidence for men who have sex with men in the United States, sufficient access to PrEP care and continued engagement outside of demonstration projects is required. METHODS: We report the results of a follow-up survey of 173 former participants from the Miami and San Francisco sites of the US PrEP Demo Project, administered 4-6 months after study completion. RESULTS: Survey respondents continued to frequently access medical care and had a high incidence of sexually transmitted infections after completion of the Demo Project, indicating ongoing sexual risk behavior. Interest in continuing PrEP was high with 70.8% indicating that they were "very interested" in continuing PrEP. Among respondents, 39.9% reported continuation of PrEP after completion of the Demo Project, largely through their primary care providers and frequently at low or no cost. Variability in access and engagement was seen, with participants from the San Francisco site, those with medical insurance, and those with a primary care provider at the end of the Demo Project more likely to successfully obtain PrEP medication. Two respondents reported HIV seroconversion in the period between study completion and the follow-up survey. CONCLUSIONS: Additional effort to increase equitable access to PrEP outside of demonstration projects is needed to realize the potential impact of this evidence-based prevention intervention.

Brief Report: Informing Strategies to Build PrEP Capacity Among San Francisco Bay Area Clinicians.

A large pool of clinicians are needed to meet the growing demand for HIV preexposure prophylaxis. We surveyed a mixed group of HIV specialists and nonspecialists in the San Francisco Bay Area to determine their attitudes toward and training needs regarding prescribing preexposure prophylaxis to persons at increased risk of HIV infection. Willingness to prescribe was associated with experience in caring for HIV-infected patients (adjusted odds ratio 4.76, 95% confidence interval: 1.43 to 15.76, P = 0.01). Desire for further training was associated with concerns about drug resistance (P = 0.04) and side effects (P = 0.04) and was more common among noninfectious disease specialists. Clinicians favored online and in-person training methods.

More than just someone to inject drugs with: Injecting within primary injection partnerships.

BACKGROUND: Studies have shown intimate injection partners engage in higher rates of syringe and injecting equipment sharing. We examined the drug use context and development of injection drug use behaviors within intimate injection partnerships. METHODS: In-depth interviews (n=18) were conducted with both members of nine injecting partnerships in Sydney, Australia. Content analysis identified key domains related to the reasons for injecting with a primary injection partner and development of drug injection patterns. MAIN FINDINGS: Most partnerships (n=5) were also sexual; three were blood-relatives and one a friend dyad. The main drug injected was heroin (66%) with high rates of recent sharing behaviors (88%) reported within dyads. Injecting within a primary injection partnership provided perceived protection against overdose events, helped reduce stress, increased control over when, where, and how drugs were used, and promoted the development of an injecting pattern where responsibilities could be shared. Unique to injecting within primary injection partnerships was the social connection and companionship resulted in a feeling of fulfillment while also blinding one from recognizing risky behavior. CONCLUSIONS: Findings illuminated the tension between protection and risks within primary injection partnerships. Primary injection partnerships provide a potential platform to expand risk reduction strategies.

Knowledge, attitudes, and practices concerning malaria in pregnancy: results from a qualitative study in Madang, Papua New Guinea.

BACKGROUND: Malaria is the leading cause of illness and death in Papua New Guinea (PNG). Infection during pregnancy with falciparum or vivax malaria, as occurs in PNG, has health implications for mother and child, causing complications such as maternal anemia, low birth weight and miscarriage. This article explores knowledge, attitudes and practices concerning malaria during pregnancy and it's prevention in Madang, PNG, a high prevalence area. METHODS: As part of a qualitative study in Madang, exploring MiP, participatory techniques (free-listing and sorting) were conducted along with focus group discussions, in-depth interviews (with pregnant women, health staff and other community members) and observations in the local community and health facilities. RESULTS: The main themes explored were attitudes towards and knowledge of MiP, its risks, and prevention. Although there was a general awareness of the term "malaria", it was often conflated with general sickness or with pregnancy-related symptoms. Moreover, many preventive methods for MiP were related to practices of general healthy living. Indeed, varied messages from health staff about the risks of MiP were observed. In addition to ideas about the seriousness and risk of MiP, other factors influenced the uptake of interventions: availability and perceived comfort of sleeping under insecticide-treated mosquito nets were important determinants of usage, and women's heavy workload influenced Chloroquine adherence. CONCLUSION: The non-specific symptoms of MiP and its resultant conflation with symptoms of pregnancy that are perceived as normal have implications for MiP prevention and control. However, in Madang, PNG, this was compounded by the inadequacy of health staff's message about MiP.

Factors affecting attendance at and timing of formal antenatal care: results from a qualitative study in Madang, Papua New Guinea.

BACKGROUND: Appropriate antenatal care (ANC) is key for the health of mother and child. However, in Papua New Guinea (PNG), only a third of women receive any ANC during pregnancy. Drawing on qualitative research, this paper explores the influences on ANC attendance and timing of first visit in the Madang region of Papua New Guinea. METHODS: Data were collected in three sites utilizing several qualitative methods: free-listing and sorting of terms and definitions, focus group discussions, in-depth interviews, observation in health care facilities and case studies of pregnant women. Respondents included pregnant women, their relatives, biomedical and traditional health providers, opinion leaders and community members. RESULTS: Although generally reported to be important, respondents' understanding of the procedures involved in ANC was limited. Factors influencing attendance fell into three main categories: accessibility, attitudes to ANC, and interpersonal issues. Although women saw accessibility (distance and cost) as a barrier, those who lived close to health facilities and could easily afford ANC also demonstrated poor attendance. Attitudes were shaped by previous experiences of ANC, such as waiting times, quality of care, and perceptions of preventative care and medical interventions during pregnancy. Interpersonal factors included relationships with healthcare providers, pregnancy disclosure, and family conflict. A desire to avoid repeat clinic visits, ideas about the strength of the fetus and parity were particularly relevant to the timing of first ANC visit. CONCLUSIONS: This long-term in-depth study (the first of its kind in Madang, PNG) shows how socio-cultural and economic factors influence ANC attendance. These factors must be addressed to encourage timely ANC visits: interventions could focus on ANC delivery in health facilities, for example, by addressing healthcare staff's attitudes towards pregnant women.

A critical review of advance directives in Germany: attitudes, use and healthcare professionals' compliance.

OBJECTIVE: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. METHODS: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes. RESULTS: Thirty-two studies (1996-2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3-62%) and was low amongst the general population (2.5-10%). Fears about ADs' purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients' desired level of bindingness. CONCLUSION: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness. PRACTICAL IMPLICATIONS: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase.

Culture and end of life care: a scoping exercise in seven European countries.

AIM: Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. METHODS: We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. RESULTS: A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. CONCLUSION: This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom.

CONTEXT: Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate. OBJECTIVES: To systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality. METHODS: Searches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified. RESULTS: Forty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies. CONCLUSION: The results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by "culturally competent" EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions.