OBJECTIVES:People with HIV (PWH) have an increased risk of cardiovascular disease (CVD), but longitudinal data from middle-income settings remain limited. This study examined the association between HIV, antiretroviral therapy (ART), and pulse wave velocity (PWV), a marker of arterial stiffness and CVD risk. DESIGN:A longitudinal analysis from the Ndlovu Cohort Study, South Africa. METHODS:The study included 705 participants (325 PWH, 81% on ART at baseline, 19% initiating ART at baseline, and 380 HIV-negative people. Demographic data, HIV/ART status, and covariates were collected at baseline, while PWV was measured at 12 and 36 months. Mixed-effects models were used to analyze PWV changes over time, adjusting for age, sex, and systolic blood pressure (SBP). Results were reported as beta coefficients ( β ) with 95% confidence intervals (CIs). RESULTS:At baseline, PWH were older and predominantly female (67%) compared to HIV-negative people. At 12 months, median PWV was higher in PWH (7.3 m/s) than in HIV-negative people (7.0 m/s, P = 0.001). Over 36 months, PWV increased by 0.30 m/s in PWH and 0.20 m/s in HIV-negative people ( P = 0.002). ART-naïve individuals had the largest PWV increase after starting ART (6.8 m/s at 12 months to 7.4 m/s at 36 months, P = 0.001). HIV ( β = 0.65, 95% CI: 0.24-1.06, P = 0.002) and time ( β = 0.31 m/s per year, P < 0.001) were significantly associated with higher PWV. CONCLUSIONS:PWV increased over time, particularly in PWH, with ART initiation linked to rapid increases. These findings highlight the need for early CVD risk monitoring, especially post-ART initiation, in resource-limited settings.
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.
Objective: To describe the development and validation of the Dementia Knowledge Scale (DKS) among family caregivers with a Turkish or Moroccan immigrant background. Methods: The 11 items of the DKS, selected by professionals and people with a Turkish or Moroccan background, were translated and adapted in Turkish and Dutch. The feasibility, comprehensibility and appropriateness of the 2 language versions were examined. Subsequently, both languages were assessed among caregivers from these groups. The internal consistency of both language versions was determined by calculating Cronbach’s α. The known group validity was determined by comparing mean scores between subgroups. Results: Both language versions of the DKS were considered feasible, comprehensible, and appropriate. A total of 117 caregivers with a Turkish background completed the Turkish version of the DKS and 110 with a Moroccan background the Dutch version. The Turkish version showed adequate internal consistency but the Dutch version did not. No differences were found in mean scores between those with a low level of education versus those with a higher level; those who frequently provided care versus those who did so less frequently; and those who lived together with a person with dementia versus those who did not. Conclusions: The DKS is feasible, comprehensible and reliable and can be used among groups with an immigrant background. Practice Implications: The DKS provides insight into various aspects of dementia knowledge, including knowledge about risk factors and symptoms, among caregivers with a Turkish or Moroccan background, and thereby supports the development of tailored education for these groups.
Introduction: Standard-of-care antiretroviral treatment (ART) monitoring in low and middle-income countries consists of annual determination of HIV-RNA viral load with confirmatory viral load testing in case of viral rebound. We evaluated an intensified monitoring strategy of three-monthly viral load testing with additional drug exposure and drug resistance testing in case of viral rebound. Methods: We performed an open-label randomized controlled trial (RCT) at a rural South African healthcare clinic, enrolling adults already receiving or newly initiating first-line ART. During 96 weeks follow-up, intervention participants received three-monthly viral load testing and sequential point-of-care drug exposure testing and DBS-based drug resistance testing in case of rebound above 1000 copies/ml. Control participants received standard-of-care monitoring according to the WHO guidelines. Results: Five hundred one participants were included, of whom 416 (83.0%) were randomized at 24 weeks. Four hundred one participants were available for intention-to-treat analysis. Viral rebound occurred in 9.0% (18/199) of intervention participants and in 11.9% (24/202) of controls (P = 0.445). Time to detection of rebound was 375 days [interquartile range (IQR): 348–515] in intervention participants and 360 days [IQR: 338–464] in controls [hazard ratio: 0.88 (95% confidence interval (95% CI): 0.46–1.66]; P = 0.683]. Duration of viral rebound was 87 days [IQR: 70–110] in intervention participants and 101 days [IQR: 78–213] in controls (P = 0.423). In the control arm, three patients with confirmed failure were switched to second-line ART. In the intervention arm, of three patients with confirmed failure, switch could initially be avoided in two cases. Conclusion: Three-monthly viral load testing did not significantly reduce the duration of viraemia when compared with standard-of-care annual viral load testing, providing randomized trial evidence in support of annual viral load monitoring.
Objective: The aim of this paper is to examine the effects of an educational peer-group intervention on knowledge about dementia, perceived ability to talk about it, received support and self-perceived pressure from informal care among family caregivers with a Turkish or Moroccan immigrant background who cared for a person with dementia. Methods: This paper is based on a cluster randomised controlled trial with three measures, including participants who knew or cared for a person with dementia. For the purpose of this study, a selection was made of participants who cared for a person with dementia. Knowledge about dementia, perceived ability to talk about dementia, support received and self-perceived pressure from informal care were assessed inthe intervention and the control condition. Multi-level analyses were conducted to examine the effects. Results: Data for 386 participants was analysed. Improvement in knowledge about dementia over time was significantly greater in the intervention condition than in the control condition. In the intervention condition, there was also a significant increase over time in the support received from home-care staff, which was not found in the control condition. No effects were found on other types of support received, the ability to talk about dementia or the self-perceived pressure from informal care. Conclusion: Offering a culturally sensitive educational peer-group education intervention enhances knowledge about dementia and has a small but positive effect on the support received from home-care staff in these groups. Practice Implications: Offering peer-group-based education about dementia to family caregivers with Turkish or Moroccan immigrant backgrounds is important for multicultural dementia care. (c) 2020 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Background The Turkish translation of the Dutch Talking Touch Screen Questionnaire (TTSQ) has been developed to help physical therapy patients with a Turkish background in the Netherlands to autonomously elucidate their health problems and impairments and set treatment goals, regardless of their level of health literacy. Objective The aim of this study was to evaluate the usability of the Turkish TTSQ for physical therapy patients with a Turkish background with diverse levels of health literacy and experience in using mobile technology. Methods The qualitative Three-Step Test-Interview method was carried out to gain insight into the usability of the Turkish TTSQ. A total of 10 physical therapy patients participated. The interview data were analyzed using a thematic content analysis approach aimed at determining the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating, which was used to provide a rough estimate of the need for additional usability improvements. Results No participant in this study was able to complete the questionnaire without encountering at least one usability problem. A total of 17 different kinds of problems were found. On the basis of their severity score, 3 problems that should be addressed during future development of the tool were “Not using the navigation function of the photo gallery in Question 4 causing the participant to not see all presented response items;” “Touching the text underneath a photo in Question 4 to select an activity instead of touching the photo itself, causing the activity not to be selected;” and “Pushing too hard or tapping too softly on the touch screen causing the touch screen to not respond.” The data on efficiency within this study were not valid and are, therefore, not reported in this study. No participant was completely satisfied or dissatisfied with the overall ease of use of the Turkish TTSQ. Two participants with no prior experience of using tablet computers felt that, regardless of what kinds of improvement might be made, it would just be too difficult for them to learn to work with the device. Conclusions As with the Dutch TTSQ, the Turkish TTSQ needs improvement before it can be released. The results of this study confirm the conclusion of the Dutch TTSQ study that participants with low levels of education and little experience in using mobile technology are less able to operate the TTSQ effectively. Using a Dutch speaking interviewer and Turkish interpreter has had a negative effect on data collection in this study.
Samenvatting Doel Het diagnosticeren en behandelen van psychische klachten bij niet-westerse migranten in de huisartsenpraktijk blijkt moeilijk. Het Brief Cultural Interview (BCI) kan helpen bij het inzicht verkrijgen in relevante culturele factoren. We onderzochten de effecten van en ervaringen met het BCI toegepast door praktijkondersteuners-geestelijke gezondheidszorg (poh’s-ggz). Methode Geclusterd effectonderzoek onder niet-westerse migranten die met psychische klachten bij de huisarts kwamen. In de interventiegroep zaten elf poh’s; vijf poh’s-ggz gaven gebruikelijke zorg. Patiënten beantwoordden bij de start van de behandeling en vier maanden later vragen over vertrouwen in de zorg, waardering van de patiënt-poh-relatie, gevoel van controle, en psychische en fysieke gezondheid. We verzamelden kwalitatieve data over de ervaringen van de poh’s-ggz en patiënten met het BCI. Resultaten In totaal werden 87 patiënten geïncludeerd. In de interventiegroep namen 31 patiënten deel aan de voor- en nameting, en in de controlegroep vijftien. De verschilscores op de uitkomstmaten verschilden niet significant tussen beide groepen. Zeven van de elf poh’s-ggz uit de interventiegroep hebben patiënten geïncludeerd. De geïnterviewde acht poh’s-ggz en negen patiënten waren positief over de meerwaarde van het BCI. Conclusie Het onderzoek heeft beperkte kennis opgeleverd over het gebruik van het BCI door de poh’s-ggz. Het BCI kan worden ingezet voor het bevorderen van cultuursensitief handelen, maar is moeilijker toepasbaar dan gedacht. Verder onderzoek is nodig naar de effecten van het BCI en de implementeerbaarheid in de huisartsenpraktijk.
Introduction: Loss to follow-up (LTFU) rates from antiretroviral treatment (ART) programmes in low- and middle-income countries (LMIC) are high, leading to poor treatment outcomes and onward transmission of HIV. Knowledge of risk factors is required to address LTFU. In this systematic review, risk factors for LTFU are identified and meta-analyses performed. Methods: PubMed, Embase, Psycinfo and Cochrane were searched for studies that report on potential risk factors for LTFU in adults who initiated ART in LMICs. Meta-analysis was performed for risk factors evaluated by at least five studies. Pooled effect estimates and their 95% confidence intervals (95% CI) were calculated using random effect models with inverse variance weights. Risk of bias was assessed and sensitivity analyses performed. Results: Eighty studies were included describing a total of 1 605 320 patients of which 87.4% from sub-Saharan Africa. The following determinants were significantly associated with an increased risk of LTFU in meta-analysis: male sex, older age, being single, unemployment, lower educational status, advanced WHO stage, low weight, worse functional status, poor adherence, nondisclosure, not receiving cotrimoxazole prophylactic therapy when indicated, receiving care at secondary level and more recent year of initiation. No association was seen for CD4(+)cell count, tuberculosis at baseline, regimen, and geographical setting. Conclusion: There are several sociodemographic, clinical, patient behaviour, treatment-related and system level risk factors for LTFU from ART programs. Knowledge of risk factors should be used to better target retention interventions and develop tools to identify high-risk patients.
OBJECTIVE:Gaining understanding of the health-related quality of life (HRQL) of family caregivers of people with dementia with Turkish or Moroccan immigrant backgrounds and to examine whether an educational peer group intervention can improve HRQL. METHODS:Understanding of HRQL and associated variables was obtained by multiple linear regression analyses. The effects of the intervention on HRQL were assessed in multilevel analyses using data collected before the start (baseline), directly after the intervention (one to two weeks after baseline) and three months after the start of the intervention. The intervention (two interactive group sessions) entailed providing information about dementia and care/support options. RESULTS:At baseline (n = 319), HRQL was moderately and significantly associated with migration background, gender, self-perceived pressure from informal care and the formal and informal support received (p < .05). The intervention had a small effect on emotional wellbeing directly after the intervention (p < .05) and on perceived general health status three months after (p < .05). CONCLUSION:Culturally sensitive peer group education on dementia and care/support options can to some extent enhance HRQL among family caregivers in the short term. PRACTICE IMPLICATIONS:The intervention as described in this study is recommended for supporting family caregivers of people with dementia with Turkish or Moroccan backgrounds.
Background HIV is associated with an increased risk of cardiovascular disease ( CVD ) in high‐income countries. Little is known about the CVD burden in sub‐Saharan Africa, where 70% of the world's HIV ‐positive population lives. This study aims to provide insight into the burden of CVD risk in a rural setting in sub‐Saharan Africa considering HIV infection and antiretroviral therapy ( ART ). Methods and Results A cross‐sectional analysis was conducted of the baseline of the Ndlovu Cohort study including HIV ‐negative and HIV ‐positive participants in rural South Africa between 2014 and 2017. Information was collected on demographics, socioeconomic status, and CVD risk factors. Carotid intima‐media thickness measurement was performed. The influence of HIV and ART on the burden of CVD was determined by comparing HIV ‐positive participants who were ART naive on first‐line or second‐line ART with HIV ‐negative participants. In total, 1927 participants were included, of whom 887 (46%) were HIV positive and 54% women. The median age was 38 years. Overall, 690 participants (79%) were on ART , with 613 (89%) on first‐line and 77 (11%) on second‐line therapy. Participants with HIV had lower values for most of the CVD risk factors but higher C‐reactive protein levels than HIV ‐negative participants. ART ‐naive, HIV ‐positive participants had similar carotid intima‐media thickness compared with HIV ‐negative participants but carotid intima‐media thickness was increased for participants on ART aged 30 years and older compared with HIV ‐negative participants. Conclusions HIV ‐positive participants presented with a favorable CVD risk profile compared with HIV ‐negative participants. However, carotid intima‐media thickness was increased in HIV ‐positive participants on ART , indicating a higher burden of subclinical CVD for the HIV ‐positive population.
BackgroundHypertension 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.MethodsUsing 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.ResultsMost 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.ConclusionThis 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.
BACKGROUND:HIV-self-testing (HIVST) could be a strategy to get more people tested for HIV in resource limited settings. One of the prerequisites of a successful HIVST programme is the availability of an easy to use, valid HIV-test which is robust against field conditions and procedural errors by untrained lay users.METHODS AND FINDINGS:The primary objective of this study was to evaluate the ability of untrained persons to correctly interpret the OraQuick HIV Self-Test results with oral fluid compared with results obtained by trained users using the matched lot OraQuick Rapid HIV-1/2 Antibody Test and blinded to the results of the Self-Test. Sensitivity of the OraQuick HIV Self-Test in untrained users was 101 in 102 (99.02%; 95%CI = 93.88-99.95%)-and specificity- 1,241 in 1,241 (100.0%; 95%CI = 99.62-100.0%). Forty-eight Self-Tests were excluded in the accuracy analysis (due to a result read as invalid, not sure or ambiguous) resulting in a test system failure rate of 3.45% (95% CI 2.56%-4.55%). At least one observation of difficulty or error with one or more of the test steps were seen in 1,193 (84.6%) participants. Age, education and health literacy were independently associated with the sum score of procedural errors and difficulties. Four tests did not provide a valid result as determined by the trained user's interpretation of the Self-Test.CONCLUSIONS:The OraQuick HIV Self-Test provides reliable and repeatable results in a rural field environment in spite of procedural errors.
Objective: Systematic review to identify predictors for dropout during interdisciplinary pain management programmes. Data sources: PubMed, PsycINFO, CINAHL, Embase, and SPORTDiscus were searched from inception to 22 June 2017. Study selection: Screening, data-extraction and quality assessment was carried out independently by 2 researchers. Data synthesis: Eight studies with low methodological quality were included in this review. Out of 63 potential predictors identified in univariate analyses, significant results were found for 18 predictors of dropout in multiple logistic regression analyses in 4 domains, as described by Meichenbaum & Turk: (i) sociodemographic domain (2); (ii) patient domain (8); (iii) disease domain (6); and (iv) treatment domain (2). Conclusion: This systematic review presents an overview of predictors of dropout. The literature with regard to the prediction of dropout has focused mainly on patient characteristics and is still in the stage of model development. Future research should focus on therapist/therapy-related predictors and the interaction between these predictors. This review suggests future research on this topic, in order to generate better outcomes in interdisciplinary pain management programmes.
OBJECTIVES:HIV infection has been associated with an impaired lung function in high-income countries, but the association between HIV infection and pulmonary function in Sub-Saharan Africa remains unclear. This study aims to investigate the relation between HIV infection and pulmonary function in a rural African population. METHODS:A cross-sectional study was conducted among HIV-positive and HIV-negative adults in a rural area in South Africa, as part of the Ndlovu Cohort Study. A respiratory questionnaire and post-bronchodilator spirometry were performed. Multivariable regression analysis was used to investigate whether HIV was independently associated with a decrease in post-bronchodilator FEV1/FVC ratio considering age, sex, body mass index, respiratory risk factors and a history of a pulmonary infection (tuberculosis (TB) or a pneumonia). Possible mediation by a history of pulmonary infection was tested by removing this variable from the final model. RESULTS:Two hundred and one consecutive participants were enrolled in the study in 2016, 84 (41.8%) were HIV-positive (82.1% on ART). The median age was 38 (IQR 29-51) years. Following multivariable analysis HIV was not significantly associated to a decline in post-bronchodilator FEV1/FVC ratio (β -0.017, p 0.18). However, upon removal of a history of a pulmonary infection from the final model HIV was significantly related to post-bronchodilator FEV1/FVC ratio, β -0.026, p 0.03. CONCLUSIONS:Pulmonary function is affected by HIV infection which most likely results from co-infection with TB or other pneumonia. Further research should focus on the influence of a pulmonary infection, most notably TB, on pulmonary function, especially as the incidence of TB is high in HIV infection.
Background In the past years, a mobile health (mHealth) app called the Dutch Talking Touch Screen Questionnaire (DTTSQ) was developed in The Netherlands. The aim of development was to enable Dutch physical therapy patients to autonomously complete a health-related questionnaire regardless of their level of literacy and digital skills. Objective The aim of this study was to evaluate the usability (defined as the effectiveness, efficiency, and satisfaction) of the prototype of the DTTSQ for Dutch physical therapy patients with diverse levels of experience in using mobile technology. Methods The qualitative Three-Step Test-Interview method, including both think-aloud and retrospective probing techniques, was used to gain insight into the usability of the DTTSQ. A total of 24 physical therapy patients were included. The interview data were analyzed using a thematic content analysis approach aimed at analyzing the accuracy and completeness with which participants completed the questionnaire (effectiveness), the time it took the participants to complete the questionnaire (efficiency), and the extent to which the participants were satisfied with the ease of use of the questionnaire (satisfaction). The problems encountered by the participants in this study were given a severity rating that was used to provide a rough estimate of the need for additional usability efforts. Results All participants within this study were very satisfied with the ease of use of the DTTSQ. Overall, 9 participants stated that the usability of the app exceeded their expectations. The group of 4 average-/high-experienced participants encountered only 1 problem in total, whereas the 11 little-experienced participants encountered an average of 2 problems per person and the 9 inexperienced participants an average of 3 problems per person. A total of 13 different kind of problems were found during this study. Of these problems, 4 need to be addressed before the DTTSQ will be released because they have the potential to negatively influence future usage of the tool. The other 9 problems were less likely to influence future usage of the tool substantially. Conclusions The usability of the DTTSQ needs to be improved before it can be released. No problems were found with satisfaction or efficiency during the usability test. The effectiveness needs to be improved by (1) making it easier to navigate through screens without the possibility of accidentally skipping one, (2) enabling the possibility to insert an answer by tapping on the text underneath a photograph instead of just touching the photograph itself, and (3) making it easier to correct wrong answers. This study shows the importance of including less skilled participants in a usability study when striving for inclusive design and the importance of measuring not just satisfaction but also efficiency and effectiveness during such studies.
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.
This chapter explains differences between the major migrant groups and the native Dutch population related to self-rated health and its sociodemographic determinants, the use of general practitioner (GP) care and the incidence of diagnoses made by GPs. Recent research into the health of migrant populations in European countries has shown that, compared to the native population, different health problems exist within migrant groups and that their health is worse in respect of certain aspects. Assumptions are made that ethnic minorities have less access to healthcare services than the native Dutch population. The chapter addresses the research questions: How do ethnic minorities rate their own health compared to the native Dutch population? Which sociodemographic variables are associated with ethnic differences in self-rated health? Do migrant groups differ in utilisation of GP care from the native population? Do prevalence and incidence of diagnoses recorded by GPs differ between the migrant groups and the native population?
Background The prevalence of dementia is increasing among people with a Turkish, Moroccan and Surinamese-Creole background. Because informal care is very important in these communities, it is pertinent to see what explanations female family carers have for dementia and whether they can discuss dementia openly within the community and the family. Method Forty-one individual interviews and six focus group interviews ( n = 28) were held with female Turkish, Moroccan and Surinamese Creole family carers who are looking after a close relative with dementia, and who live in The Netherlands. Qualitative analysis has been carried out, supported by the software MaxQda. Results The dominant explanations of dementia given by the female family carers interviewed are in line with what Downs et al. describe as the explanatory models 'dementia as a normal ageing process' and 'dementia as a spiritual experience'. In addition, some female family carers gave explanations that were about an interplay between various factors. Turkish and Moroccan informal caregivers ascribe the causes of dementia relatively often to life events or personality traits, whereas Surinamese Creole caregivers frequently mention physical aspects, such as past dehydration. However, the explanatory model 'dementia as a neuropsychiatric condition', which is dominant in Western cultures, was rarely expressed by the informal caregivers. The female family carers generally talked openly about the dementia with their close family, whereas particularly in the Turkish and Moroccan communities open communication within the broader communities was often hampered, e.g. by feelings of shame. Conclusions Female family carers of Turkish, Moroccan or Surinamese Creole backgrounds often consider dementia as a natural consequence of ageing, as a spiritual experience, and/or as an interplay between various factors. They feel they can talk openly about dementia within their close family, while outside the close family this is often more difficult.