Unmasking a silent killer: Prevalence of diagnosed and undiagnosed diabetes mellitus among people living with HIV in rural South Africa.

OBJECTIVES: To document the prevalence of impaired glucose tolerance (IGT) and undiagnosed diabetes mellitus (DM) and to identify factors associated with undiagnosed DM in people living with HIV (PLWH). METHODS: Cross-sectional study performed at Ndlovu Medical Center, Limpopo, South Africa including PLWH aged ≥18 years. Between August and November 2017, 356 HIV-positive participants were included. Information was collected on socio-demographics, DM symptoms and risk factors for DM. IGT and DM were diagnosed using random plasma glucose and/or HbA1c. Factors associated with undiagnosed DM were assessed by comparing participants with newly diagnosed DM to participants without DM. RESULTS: IGT was diagnosed in 172 (48.3%) participants. Twenty-nine (8.1%) participants met the definition of DM, of whom 17 (58.6%) were newly diagnosed. Compared to participants without DM, participants with DM were on average 5 years older, were more likely to have a positive family history for DM, were less physically active and had higher systolic blood pressure, body mass index and waist circumference. Factors associated with undiagnosed DM included age ≥45 years (odds ratio [OR] = 3.59) and physical inactivity (OR = 3.17). CONCLUSIONS: The prevalence of IGT and DM among PLWH is high and more than half of DM cases were undiagnosed. Regular screening for DM in PLWH is recommended, especially in an ageing population with additional cardiovascular disease risk factors.

The Turkish version of the SPPIC validated among informal caregivers with a Turkish immigrant background.

BACKGROUND: This study assesses the internal consistency and known group validity of the Turkish version of the SPPIC, a measurement instrument to assess the self perceived pressure from informal care in family caregivers of people with dementia that was originally in Dutch. METHODS: The feasibility, comprehensibility and appropriateness of the Turkish SPPIC were assessed during a pilot test. Internal consistency was examined based on data from 117 family caregivers with a Turkish immigrant background by calculating Cronbach's alpha and by conducting a single-factor Confirmatory Factor Analysis (CFA). Known group validity was determined to obtain an understanding of the validity of the translated instrument, testing differences in the self-perceived pressure from informal care, depending on frequency of caregiving, living with a person with dementia and level of education. RESULTS: The pilot test showed that the translated SPPIC was considered to be feasible, comprehensible and appropriate. The internal consistency appeared to be strong (Cronbach's alpha: 0.94). The CFA indicated that the factor 'Self-perceived Pressure from Informal Care' explained varying levels of variance in the items of the SPPIC (ranging from .52 to .87). Family caregivers who provided care at least once a week and who shared a home with a person with dementia perceived a greater pressure from informal care (p = 0.007, p = 0.001). CONCLUSIONS: The Turkish translation of the SPPIC can be used in future research and practice to obtain insight into self-perceived pressure from informal care of family caregivers with Turkish immigrant backgrounds. At the same time it is recommended to conduct more research on how the measurement of self-perceived pressure from informal care in this group can be further improved.

Cultural Identity Confusion and Psychopathology: A Mixed-Methods Study Among Refugees and Asylum Seekers in the Netherlands.

Although there is ample empirical evidence that traumatic events, postmigration stress, and acculturation problems have a great impact on the mental health of refugees, so far no studies have included cultural identity after migration in the equation. This mixed-methods study conducted among Afghan and Iraqi refugee and asylum-seeker psychiatric patients aims to fill this gap. Associations between postmigration stress, symptoms of anxiety and depression disorders, and symptoms of posttraumatic stress disorder were significant. When differentiated for the two groups, associations with postmigration stress were no longer significant for Afghan patients, who were predominantly younger and more often single, lower educated, and without resident status compared with Iraqi patients. Qualitative results indicate that, in addition to psychopathology and postmigration stress, acculturation problems contribute to confusion of cultural identity. The findings suggest that reduction of postmigration stress and acculturation problems may clarify cultural identity and as such may contribute to posttraumatic recovery.

Hypertension in a rural community in South Africa: what they know, what they think they know and what they recommend.

BACKGROUND: Hypertension is one of the most important risk factors for cardiovascular disease and has a high prevalence in South Africa and other low- and middle-income countries. However, awareness of hypertension has been reported to be low. Health programmes can increase awareness of hypertension and its causes, but hinge on the knowledge and perception of the targeted community. Therefore, this study investigated knowledge on and perceptions about hypertension of community members in a rural area in Limpopo, South Africa with the aim to increase awareness of hypertension and cardiovascular disease in the local population. METHODS: Using a mixed methods study approach, 451 participants of the Ndlovu Cohort Study, attending a follow-up visit between August 2017 and January 2018, completed a questionnaire on cardiovascular risk perception. A knowledge score was calculated for all participants. Sixty participants were invited to participate in six focus group discussions, of which 56 participated. Audio recordings were transcribed verbatim, transcripts coded, and thematic analysis of the data undertaken to obtain an understanding of knowledge and perception of hypertension in the community. RESULTS: Most members of the community seemed to have intermediate (74.3%) or good (14.0%) knowledge of hypertension based on the knowledge score, and only 11.8% of the population had poor knowledge. The risk factors of hypertension seemed to be well known in the community. Poverty was identified as a major vulnerability in this community limiting choices for healthy lifestyles such as nutritious foods, recreational physical activity and accessing health care timely. Participants proposed community-based activities as an effective way to reach out to community members for prevention and management of hypertension. CONCLUSION: This study highlights the need for improved health promotion efforts to increase knowledge of hypertension in rural communities, and to address poverty as a major obstacle to healthy life-style choices.

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.

BACKGROUND: In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. METHODS: Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. RESULTS: A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. CONCLUSIONS: Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs.

Using Plain Language and Adding Communication Technology to an Existing Health-Related Questionnaire to Help Generate Accurate Information: Qualitative Study.

BACKGROUND: Low-educated patients are disadvantaged in using questionnaires within the health care setting because most health-related questionnaires do not take the educational background of patients into account. The Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in an attempt to meet the needs of low-educated patients by using plain language and adding communication technology to an existing paper-based questionnaire. For physical therapists to use the DTTSQ as part of their intake procedure, it needs to generate accurate information from all of their patients, independent of educational level. OBJECTIVE: The aim of this study was to get a first impression of the information that is generated by the DTTSQ. To achieve this goal, response processes of physical therapy patients with diverse levels of education were analyzed. METHODS: The qualitative Three-Step Test-Interview method was used to collect observational data on actual response behavior of 24 physical therapy patients with diverse levels of education. The interviews included both think-aloud and retrospective probing techniques. RESULTS: Of the 24 respondents, 20 encountered one or more problems during their response process. The use of plain language and information and communication technology (ICT) appeared to have a positive effect on the comprehensibility of the DTTSQ. However, it also had some negative effects on the interpretation, retrieval, judgment, and response selection within the response processes of the participants in this study. No educational group in this research population stood out from the rest in the kind or number of problems that arose. All respondents recognized themselves in the outcomes of the questionnaire. CONCLUSIONS: The use of plain language and ICT within the DTTSQ had both positive and negative effects on the response processes of its target population. The results of this study emphasize the importance of earlier recommendations to accompany any adaption of any questionnaire to a new mode of delivery by demonstrating the difference and equivalence between the two different modes and to scientifically evaluate the applicability of the newly developed mode of the questionnaire in its intended setting. This is especially important in a digital era in which the use of plain language within health care is increasingly being advocated.

Cultural Identity Among Afghan and Iraqi Traumatized Refugees: Towards a Conceptual Framework for Mental Health Care Professionals.

Cultural identity in relation with mental health is of growing interest in the field of transcultural psychiatry. However, there is a need to clarify the concept of cultural identity in order to make it useful in clinical practice. The purpose of this study is to unravel the complexity and many layers of cultural identity, and to assess how stress and acculturation relate to (changes in) cultural identity. As part of a larger study about cultural identity, trauma, and mental health, 85 patients from Afghanistan and Iraq in treatment for trauma-related disorders were interviewed with a Brief Cultural Interview. The interviews were analysed through qualitative data analysis using the procedures of grounded theory. The analysis resulted in three domains of cultural identity: personal identity, ethnic identity and social identity. Within each domain relationships with stress and acculturation were identified. The results offer insight into the intensity of changes in cultural identity, caused by pre-and post-migration stressors and the process of acculturation. Based on the research findings recommendations are formulated to enhance the cultural competency of mental health workers.

Explanatory factors for first and second-generation non-western women's inadequate prenatal care utilisation: a prospective cohort study.

BACKGROUND: Little research into non-western women's prenatal care utilisation in industrialised western countries has taken generational differences into account. In this study we examined non-western women's prenatal care utilisation and its explanatory factors according to generational status. METHODS: Data from 3300 women participating in a prospective cohort of primary midwifery care clients (i.e. women with no complications or no increased risk for complications during pregnancy, childbirth and the puerperium who receive maternity care by autonomous midwives) in the Netherlands (the DELIVER study) was used. Gestational age at entry and the total number of prenatal visits were aggregated into an index. The extent to which potential factors explained non-western women's prenatal care utilisation was assessed by means of blockwise logistic regression analyses and percentage changes in odds ratios. RESULTS: The unadjusted odds of first and second-generation non-western women making inadequate use of prenatal care were 3.26 and 1.96 times greater than for native Dutch women. For the first generation, sociocultural factors explained 43% of inadequate prenatal care utilisation, socioeconomic factors explained 33% and demographic and pregnancy factors explained 29%. For the second generation, sociocultural factors explained 66% of inadequate prenatal care utilisation. CONCLUSION: Irrespective of generation, strategies to improve utilisation should focus on those with the following sociocultural characteristics (not speaking Dutch at home, no partner or a first-generation non-Dutch partner). For the first generation, strategies should also focus on those with the following demographic, pregnancy and socioeconomic characteristics (aged ≤ 19 or ≥ 36, unplanned pregnancies, poor obstetric histories (extra-uterine pregnancy, molar pregnancy or abortion), a low educational level, below average net household income and no supplementary insurance.

Health changes of refugees from Afghanistan, Iran and Somalia: the role of residence status and experienced living difficulties in the resettlement process.

INTRODUCTION: Worldwide, refugees show a poorer mental and physical health than the populations among which they resettle. Little is known about the factors influencing health after resettlement. We examined the development of mental and physical health of refugees. As experienced living difficulties might decrease with obtaining a residence permit, we expected this to play a central role in health improvement after resettlement. METHODS: A two-wave study conducted in the Netherlands among a cohort of 172 recent (n = 68) and longstanding (n = 104) permit holders from Afghanistan, Iran and Somalia between 2003 and 2011. Multivariate mediation analyses were conducted for the effect of changes in living difficulties on the association between change in status and changes in health. Health outcomes were self-reported general health, number of chronic conditions, PTSD and anxiety/depression. RESULTS: Recent permit holders had larger decreases in PTSD score (-0.402, CI -0.612; -0.192) and anxiety/depression score (-0.298, CI -0.464; -0.132), and larger improvements in self-rated general health between T1 and T2 (0.566, CI 0.183; 0.949) than longstanding permit holders. This association was not significant for changes in number of chronic conditions. Mediation analyses showed that the effect of getting a residence permit on health improvements transited through an improvement in living conditions, in particular employment and the presence of family/social support. CONCLUSION: These results suggest that change in residence permit is beneficial for health mainly because of the change in living difficulties. These results add up to the evidence on the role of social circumstances for refugees upon resettlement, and point at labour participation and social support as key mechanisms for health improvements.

Sexual and gender-based violence in the European asylum and reception sector: a perpetuum mobile?

BACKGROUND: Refugees, asylum seekers and undocumented migrants are at risk of sexual and gender-based violence (SGBV) and subsequent ill-health in Europe; yet, European minimum reception standards do not address SGBV. Hence, this paper explores the nature of SGBV occurring in this sector and discusses determinants for 'Desirable Prevention'. METHODS: Applying community-based participatory research, we conducted an SGBV knowledge, attitude and practice survey with residents and professionals in eight European countries. We conducted logistic regression using mixed models to analyse the data in R. RESULTS: Of the 562 respondents, 58.3% reported cases of direct (23.3%) or peer (76.6%) victimization. Our results indicate that when men were involved, it most likely concerned sexual perpetration (adjusted odds ratio [aOR]: 4.09, confidence interval [CI]: 1.2; 13.89) and physical victimization (aOR: 2.57, CI: 1.65; 4), compared with females, who then rather perpetrated emotional violence (aOR: 1.85, CI: 1.08; 3.13) and underwent sexual victimization (aOR: 7.14, CI: 3.33; 16.67). Compared with others, asylum seekers appeared more likely to perpetrate physical (aOR 7.14, CI: 4; 12.5) and endure socio-economic violence (aOR: 10, CI: 1.37; 100), whereas professionals rather bore emotional (aOR: 2.01, CI: 0.98; 4.12) and perpetrated socio-economic violence (aOR: 25.91, CI: 13.41; 50.07). When group perpetration (aOR: 2.13, CI: 1.27; 3.58) or victimization (aOR: 1.84, CI: 1.1; 3.06) occurred, it most likely concerned socio-economic violence. CONCLUSION: Within the European asylum reception sector, residents and professionals of both sexes experience SGBV victimization and perpetration. Given the lack of prevention policies, our findings call for urgent Desirable Prevention programmes addressing determinants socio-ecologically.

Course of post-traumatic stress disorder and health care utilisation among resettled refugees in the Netherlands.

BACKGROUND: Post-traumatic stress disorder (PTSD) is a major health problem among refugees worldwide. After resettlement, the prevalence of PTSD remains high despite the fact that various PTSD treatments are known to be effective. METHODS: We examined the course of PTSD and the role of mental health care utilisation at a 7-year interval (2003-2010) among a cohort of refugees from Iran, Afghanistan, and Somalia after resettlement in the Netherlands. RESULTS: The unchanged high prevalence of PTSD (16.3% in 2003 and 15.2% in 2010) was attributable in part to late onset of PTSD symptoms (half of the respondents with PTSD at T2 were new cases for whom PTSD developed after 2003). The second reason concerned the low use of mental health care services at T1. Whereas the multivariate analyses showed the effectiveness of mental health care, only 21% of respondents with PTSD at T1 had had contact with a mental health care provider at that time. Use of mental health care during the first wave increased the odds of improvement in PTSD symptoms between both measurements (OR 7.58, 95% CI 1.01; 56.85). CONCLUSIONS: The findings of this study suggest there are two possible explanations for the persistently high prevalence of PTSD among refugees. One is the late onset of PTSD and the other is the low utilisation of mental health care. Health care professionals should be aware of these issues, especially given the effectiveness of mental health care for this condition.

Quality of primary care for resettled refugees in the Netherlands with chronic mental and physical health problems: a cross-sectional analysis of medical records and interview data.

BACKGROUND: A high prevalence of mental and physical ill health among refugees resettled in the Netherlands has been reported. With this study we aim to assess the quality of primary healthcare for resettled refugees in the Netherlands with chronic mental and non-communicable health problems, we examined: a) general practitioners' (GP) recognition of common mental disorders (CMD) (depression and anxiety, and post-traumatic stress disorder (PTSD) symptoms); b) patients' awareness of diabetes type II (DMII) and hypertension (HT); and c) GPs' adherence to guidelines for CMD, DMII and HT. METHODS: From 172 refugees resettled in the Netherlands, interview data (2010-2011) and medical records (n = 106), were examined. Inclusion was based on medical record diagnoses for DMII and HT, and on questionnaire-based CMD measures (Hopkins Symptom Checklist for depression and anxiety; Harvard Trauma Questionnaire for PTSD). GP recognition of CMD was calculated as the number of CMD cases registered in the medical record compared with those found in interviews. Patient awareness of HT and DMII was scored as the percentage of subjects diagnosed by the GP who reported their condition during the interview. GPs' adherence to guidelines for CMD, DMII and HT was measured using established indicators. RESULTS: We identified 37 resettled refugees with CMD of which 18 (49%) had been recognised by the GP. We identified 16 refugees with DMII and 14 with HT from the medical record; 24 (80%) were aware of their condition. Thirty-five out of these 53 (66%) resettled refugees with chronic mental and non-communicable disorders received guideline-adherent treatment. CONCLUSION: This study shows that awareness in resettled refugees of GP diagnosed DMII and HT is high, whereas GP recognition of CMD and overall guideline adherence are moderate.

No Evidence for an Association of HIV and Antiviral Treatment With Changes in Framingham Cardiovascular Risk Score in the Ndlovu Cohort Study.

BACKGROUND: HIV and antiretroviral therapy (ART) have been associated with increased cardiovascular disease (CVD) risk in high-income countries. The authors studied the longitudinal association between HIV and ART and nonlaboratory Framingham Risk Score (FRS) in a middle-income country. METHODS AND RESULTS: This longitudinal analysis of the NCS (Ndlovu Cohort Study), South Africa used baseline to 36-month follow-up data. Demographics, HIV, ART status, and cardiometabolic measures were obtained. FRS was used as a CVD risk measure. Through linear mixed models, FRS trends over time and the association with HIV were studied. Analysis included 1136 participants, with 609 (54%) having HIV, and 495 (81%) taking ART. At baseline, 9.8% of participants had a high FRS. People living with HIV (PLHIV) had a 3.2% lower FRS than HIV-negative participants (P<0.001). FRS increased similarly for both groups over time. Other factors associated with FRS were secondary and higher education (ß value: -0.075, P<0.001; ß value: -0.084, P<0.001) and alcohol consumption (ß value: 0.011, P<0.001). CONCLUSIONS: CVD risk increased for all participants over 36 months, suggesting classic risk factors rather than HIV status or ART to be drivers of CVD risk. People living with HIV had a significantly lower FRS than their HIV-negative counterparts, possibly related to HIV itself or a more frequent interaction with healthcare services. No association of HIV and ART with changes in FRS over 36 months was observed, suggesting the need for research using clinical endpoints to elucidate the effects of HIV and ART on CVD risk. Population-based prevention of CVD risk factors in sub-Saharan Africa is warranted, regardless of HIV status.

Factors affecting the use of prenatal care by non-western women in industrialized western countries: a systematic review.

BACKGROUND: Despite the potential of prenatal care for addressing many pregnancy complications and concurrent health problems, non-western women in industrialized western countries more often make inadequate use of prenatal care than women from the majority population do. This study aimed to give a systematic review of factors affecting non-western women's use of prenatal care (both medical care and prenatal classes) in industrialized western countries. METHODS: Eleven databases (PubMed, Embase, PsycINFO, Cochrane, Sociological Abstracts, Web of Science, Women's Studies International, MIDIRS, CINAHL, Scopus and the NIVEL catalogue) were searched for relevant peer-reviewed articles from between 1995 and July 2012. Qualitative as well as quantitative studies were included. Quality was assessed using the Mixed Methods Appraisal Tool. Factors identified were classified as impeding or facilitating, and categorized according to a conceptual framework, an elaborated version of Andersen's healthcare utilization model. RESULTS: Sixteen articles provided relevant factors that were all categorized. A number of factors (migration, culture, position in host country, social network, expertise of the care provider and personal treatment and communication) were found to include both facilitating and impeding factors for non-western women's utilization of prenatal care. The category demographic, genetic and pregnancy characteristics and the category accessibility of care only included impeding factors.Lack of knowledge of the western healthcare system and poor language proficiency were the most frequently reported impeding factors. Provision of information and care in women's native languages was the most frequently reported facilitating factor. CONCLUSION: The factors found in this review provide specific indications for identifying non-western women who are at risk of not using prenatal care adequately and for developing interventions and appropriate policy aimed at improving their prenatal care utilization.

PHIRE (Public Health Innovation and Research in Europe): methods, structures and evaluation.

INTRODUCTION: Public Health Innovation and Research in Europe (PHIRE), building on previous European collaborative projects, was developed to assess national uptake and impacts of European public health innovations, to describe national public health research programmes, strategies and structures and to develop participation of researchers through the organizational structures of the European Public Health Association (EUPHA). This article describes the methods used. METHODS: PHIRE was led by EUPHA with seven partner organisations over 30 months. It was conceived to engage the organisation of EUPHA--working through its thematic Sections, and through its national public health associations--and assess innovation and research across 30 European countries. Public health research was defined broadly as health research at population and organisational level. There were seven Work Packages (three covering coordination and four for technical aspects) led by partners and coordinated through management meetings. RESULTS: Seven EUPHA Sections identified eight innovations within the projects funded by the Public Health Programme of the European Commission Directorate for Health and Consumers. Country informants, identified through EUPHA thematic Sections, reported on national uptake of the innovations in eight public health projects supported by the European Union Public Health Programme. Four PHIRE partners, each taking a regional sector of Europe, worked with the public health associations and other informants to describe public health research programmes, calls and systems. A classification was created for the national public health research programmes and calls in 2010. The internal and external evaluations were supportive. CONCLUSIONS: PHIRE described public health innovations and research across Europe through national experts. More work is needed to conceptualize and define public health 'innovations' and to develop theories and methods for the assessment of their uptake and impacts at country and cross-country levels. More attention to methods to describe and assess national public health research programmes, strategies and structures--contributing to development of the European Research Area.

Civil society engagement in innovation and research through the European Public Health Association.

BACKGROUND: The European Public Health Association (EUPHA) proposed and led PHIRE (Public Health Innovation and Research in Europe), with co-financing by the European Commission, to assess public health innovation and research at national level in Europe. PHIRE was also designed to promote organizational development and capacity building of EUPHA. We assess the success and limitations of using EUPHA's participative structures. METHODS: In total, 30 European countries were included-27 EU countries, Iceland, Norway and Switzerland. EUPHA thematic section presidents were asked to identify country informants to report, through a web-based questionnaire, on eight public health innovations. National public health associations (EUPHA member organizations) were requested to identify their national public health research programmes and calls, review the health research system, coordinate a stakeholder workshop and provide a national report. The section and national reports were assessed for responses and completeness. RESULTS: Half of the final responding CIs were members of EUPHA sections and the other half gained from other sources. Experts declined to respond for reasons including lack of time, knowledge of the innovation or funding. National public health associations held PHIRE workshops with Ministries of Health in 14 countries; information for 10 countries was gained through discussions within the national association, or country visits by PHIRE partners. Six countries provided no response. Some national associations had too weak organizational structures for the work or insufficient financial resources or criticism of the project. CONCLUSION: EUPHA is the leading civil society organization giving support to public health research in Europe. PHIRE created new knowledge and supported organizational development. EUPHA sections gained expert reports on public health innovations in European countries and national public health associations reported on national public health research systems. Significant advances could be made if the European Commission worked more directly with EUPHA's expert members and with the national public health associations.

Health literacy and pain neuroscience education in an interdisciplinary pain management programme: a qualitative study of patient perspectives.

Introduction: Pain neuroscience education is part of interdisciplinary pain management programs (IPMPs). To date, the role of health literacy on patients' understanding of pain neuroscience education has not sufficiently been examined. Objectives: Drawing on interviews with patients with diverse levels of health literacy, this article explores patient perspectives on pain neuroscience education. Methods: Purposively sampled patients from an IPMP were interviewed twice (waiting list and after 4 weeks). A directed qualitative content analysis was performed with the Integrated Conceptual Model of Health Literacy as an analytic framework. Results: Thirteen patients with chronic musculoskeletal pain were interviewed: 4 men and 9 women aged from 21 to 77 years with diverse educational and mostly low health literacy. One participant dropped out after baseline. Some participants gained access to health information actively; others relied on the expertise of their healthcare providers. Most participants did not seem to receive the information in the pain neuroscience education as intended, experienced difficulties with understanding the message, negatively appraised the information, and were not able to apply this in their daily lives. Health literacy levels likely played a role in this. Conclusions: Pain neuroscience education tailored to patients' health literacy levels, information needs, and learning strategies is needed.

Importance of quality aspects of GP care among ethnic minorities: role of cultural attitudes, language and healthcare system of reference.

AIMS: This study examines the mechanisms responsible for ethnic differences in perceived quality of care in The Netherlands. The specific role of cultural attitudes, language proficiency, and the health system in the country of origin was examined, taking socio-demographic characteristics into account. METHODS: Interview data of 1339 respondents of Moroccan, Turkish, Surinamese and Antillean origin were combined with interview data of Dutch respondents (n = 405) and of Western immigrants (n = 102) in The Netherlands and of a random sample of Dutch privately or publicly insured persons (n = 9675). Data collection took place within the Second Dutch National Survey of General Practice (DNSGP-2, 2001). Items from the QUality Of care Through the patient's Eyes (QUOTE) questionnaire were used to measure expectations, as well as items from the QUOTE-Mi (adapted version for migrant groups). Items on normative orientations were used to measure cultural attitudes. RESULTS: In contrast to our hypothesis, respondents with more egalitarian/modern attitudes attached less importance to quality aspects related to access and quality. Tests on the role of the health system of reference were generally conclusive, showing that respondents accustomed to (parts of) another system have different expectations regarding several aspects of general practitioner healthcare quality, e.g. access to specialist care. CONCLUSIONS: Besides socio-demographic characteristics, culture influences patients' expectations regarding general practitioner care quality. However, the role of culture can be more clearly ascribed to the characteristics of the health system which is held as the reference than to the general attitudes on normative orientations.

Perceived discrimination outside health care settings and health care utilization of Turkish and Moroccan GP patients in the Netherlands.

BACKGROUND: Problematic interethnic relationships, expressed by feelings of discrimination, may contribute to ethnic variations in health and health care utilization. The impact of daily perceived discrimination on (mental) health has been shown. Less is known about the effect of everyday discrimination on the health care utilization. We examined the relationship between perceived discrimination of Turkish and Moroccan patients on GP health care utilization in the Netherlands and on health services use in the home country. METHODS: Cohort study within the second Dutch National Survey of General Practice (2001). Interviews were conducted with 416 Turkish and 381 Moroccan respondents, and repeated in 2005 among respectively 118 and 102 participants. Linear, logistic and zero-inflated binomial regression models were used for the analyses. RESULTS: Perceived discrimination was associated with non-attendance to the GP. Perceived quality of GP care was not a mediator in this relationship. No evidence was found for substitution of health care utilization in the home country to health care in the host country. GP attenders had higher odds of using health care in the home country than non-attenders. Over time, a lasting discrimination feeling was related to persistent non-attendance at the GP practice. CONCLUSION: Ethnic minority patients who feel discriminated may avoid GP health care. Further research is warranted on magnitude and health effects of such potential underutilization. Information on perceived discrimination within health care settings would increase insight into the profile of non-attenders, and on possible measures to better target interventions at a group at risk of underutilization.

Perspectives on care and communication involving incurably ill Turkish and Moroccan patients, relatives and professionals: a systematic literature review.

BACKGROUND: Our aim was to obtain a clearer picture of the relevant care experiences and care perceptions of incurably ill Turkish and Moroccan patients, their relatives and professional care providers, as well as of communication and decision-making patterns at the end of life. The ultimate objective is to improve palliative care for Turkish and Moroccan immigrants in the Netherlands, by taking account of socio-cultural factors in the guidelines for palliative care. METHODS: A systematic literature review was undertaken. The data sources were seventeen national and international literature databases, four Dutch journals dedicated to palliative care and 37 websites of relevant national and international organizations. All the references found were checked to see whether they met the structured inclusion criteria. Inclusion was limited to publications dealing with primary empirical research on the relationship between socio-cultural factors and the health or care situation of Turkish or Moroccan patients with an oncological or incurable disease. The selection was made by first reading the titles and abstracts and subsequently the full texts. The process of deciding which studies to include was carried out by two reviewers independently. A generic appraisal instrument was applied to assess the methodological quality. RESULTS: Fifty-seven studies were found that reported findings for the countries of origin (mainly Turkey) and the immigrant host countries (mainly the Netherlands). The central themes were experiences and perceptions of family care, professional care, end-of-life care and communication. Family care is considered a duty, even when such care becomes a severe burden for the main female family caregiver in particular. Professional hospital care is preferred by many of the patients and relatives because they are looking for a cure and security. End-of-life care is strongly influenced by the continuing hope for recovery. Relatives are often quite influential in end-of-life decisions, such as the decision to withdraw or withhold treatments. The diagnosis, prognosis and end-of-life decisions are seldom discussed with the patient, and communication about pain and mental problems is often limited. Language barriers and the dominance of the family may exacerbate communication problems. CONCLUSIONS: This review confirms the view that family members of patients with a Turkish or Moroccan background have a central role in care, communication and decision making at the end of life. This, in combination with their continuing hope for the patient's recovery may inhibit open communication between patients, relatives and professionals as partners in palliative care. This implies that organizations and professionals involved in palliative care should take patients' socio-cultural characteristics into account and incorporate cultural sensitivity into care standards and care practices.