RESUMO
We use language to achieve understanding, and language barriers can have major health consequences for patients with serious illness. While ethnic minorities are more likely to experience social inequalities in health and health care, communicative processes in language-discordant cancer care remain unexplored. This study aimed to investigate communication between patients with cancer and limited Danish proficiency and oncology clinicians, with special emphasis on how linguistic barriers influenced patient involvement and decision-making. 18 participant observations of clinical encounters were conducted. Field notes and transcriptions of audio recordings were analyzed, and three themes were identified: Miscommunication and uncertainty as a basic linguistic condition; Impact of time on patient involvement; Unequally divided roles and (mis)communication responsibilities. The results showed that professional interpreting could not eradicate miscommunication but was crucial for achieving understanding. Organizational factors related to time and professional interpreting limited patient involvement. Without professional interpreting, patients' relatives were assigned massive communication responsibilities. When no Danish-speaking relatives partook, clinicians' ethical dilemmas further increased as did patient safety risks. Language barriers have consequences for everyone who engages in health communication, and the generated knowledge about how linguistic inequality manifests itself in clinical practice can be used to reduce social inequalities in health and health care.
Assuntos
Barreiras de Comunicação , Idioma , Neoplasias , Humanos , Comunicação , Atenção à Saúde , Linguística , Neoplasias/psicologia , Neoplasias/terapia , Pesquisa QualitativaRESUMO
BACKGROUND: Body mass index (BMI) shows strong continuity over childhood and adolescence and high childhood BMI is the strongest predictor of adult obesity. Genetic factors strongly contribute to this continuity, but it is still poorly known how their contribution changes over childhood and adolescence. Thus, we used the genetic twin design to estimate the genetic correlations of BMI from infancy to adulthood and compared them to the genetic correlations of height. METHODS: We pooled individual level data from 25 longitudinal twin cohorts including 38,530 complete twin pairs and having 283,766 longitudinal height and weight measures. The data were analyzed using Cholesky decomposition offering genetic and environmental correlations of BMI and height between all age combinations from 1 to 19 years of age. RESULTS: The genetic correlations of BMI and height were stronger than the trait correlations. For BMI, we found that genetic correlations decreased as the age between the assessments increased, a trend that was especially visible from early to middle childhood. In contrast, for height, the genetic correlations were strong between all ages. Age-to-age correlations between environmental factors shared by co-twins were found for BMI in early childhood but disappeared altogether by middle childhood. For height, shared environmental correlations persisted from infancy to adulthood. CONCLUSIONS: Our results suggest that the genes affecting BMI change over childhood and adolescence leading to decreasing age-to-age genetic correlations. This change is especially visible from early to middle childhood indicating that new genetic factors start to affect BMI in middle childhood. Identifying mediating pathways of these genetic factors can open possibilities for interventions, especially for those children with high genetic predisposition to adult obesity.
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Gêmeos Dizigóticos , Gêmeos Monozigóticos , Adolescente , Adulto , Estatura/genética , Índice de Massa Corporal , Criança , Pré-Escolar , Humanos , Lactente , Obesidade/epidemiologia , Obesidade/genética , Gêmeos Dizigóticos/genética , Gêmeos Monozigóticos/genética , Adulto JovemRESUMO
BACKGROUND: As an alternative to a professional interpreter, children or relatives often act as so-called 'language brokers' in the healthcare sector. Litterature have demonstrated that the cultural context is significant for the potential outcome for child language brokers. For individuals from a collectivistic family pattern, it becomes natural and is often regarded as respectful, to assist older relatives day and night. AIM: Very little is known about young people providing informal translation services in a Scandinavian context. We therefore aimed to capture the lived experiences of bilingual health professionals, students and postgraduates who have experienced interpreting for family members in a healthcare setting. By interviewing bilingual health professionals, we aimed to obtain two perspectives, the translators and the professionals, in one interview. RESULTS: Analysing the conditions, meanings and reasoning, it became possible for us to understand the young translators' situations and how their life conditions affected their reasons for action in certain ways and in certain conditions. The analysis revealed four main themes: (i) the importance of social relations and cultural conditions; (ii) the hidden burden of consequences for participants' health conditions due to the focus on health-related consequences and emotionally difficult situations experienced by the participants; (iii) participants experienced limitations in language skills as a challenge; and (iv) being 'in between' in the encounter with the professional system. CONCLUSION: When family members interpret for the family, the family interpreter is at risk of being excluded by the family or being exposed to and involved in highly sensitive dilemmas that may forever impair normal family relations: health professionals should be aware of this and take professional responsibility.
Assuntos
Joelho de Quadrúpedes , Tradução , Adolescente , Animais , Criança , Atenção à Saúde , Emoções , Família , HumanosRESUMO
Sub-Saharan Africa has the highest natural twinning rate in the world. Unfortunately, due to lack of adequate care during pregnancy, labor and postnatally, twin mortality in Sub-Saharan Africa also remains very high. Thus, it has been estimated that one in five twins dies during the childhood years. In spite of this, surprisingly few twin studies have been conducted in the region, making additional epidemiological data much needed. In 2009, we established one of the first twin registries in Sub-Saharan Africa at the Bandim Health Project in Guinea-Bissau. The registry had two main objectives. First, we wanted to describe the twinning rate and mortality patterns among newborn twins, including mortality risk factors and hospitalization patterns. Such studies can help the local clinicians improve twin health by identifying the most vulnerable children. Second, and in light of the rapidly increasing diabetes rates in Africa, we wanted to use the registry to particularly focus on metabolic disorders. Twins are often born with low birth weight, which according to the 'thrifty phenotype hypothesis' could predispose them to metabolic disorders later in life. Yet, no such 'fetal programming' data have previously been available from African twins despite the fact that nutritional patterns and influences from other factors (e.g., infections) could be markedly different here compared to high-income settings. In this article, we summarize the findings and current status of the Guinea-Bissau twin registry.
Assuntos
Doenças em Gêmeos/mortalidade , Mortalidade Infantil/tendências , Doenças Metabólicas/mortalidade , Sistema de Registros/estatística & dados numéricos , Gêmeos/estatística & dados numéricos , Adolescente , Adulto , Criança , Pré-Escolar , Doenças em Gêmeos/epidemiologia , Doenças em Gêmeos/genética , Feminino , Guiné-Bissau/epidemiologia , Humanos , Incidência , Lactente , Recém-Nascido , Masculino , Doenças Metabólicas/epidemiologia , Doenças Metabólicas/genética , Fatores de Risco , Gêmeos/genética , Adulto JovemRESUMO
OBJECTIVE: To examine associations between household-level characteristics and underweight in a post-conflict population. DESIGN: Nutritional status of residents in the Gulu Health and Demographic Surveillance Site was obtained during a community-based cross-sectional study, ~6 years after the civil war. Household-level factors included headship, polygamy, household size, child-to-adult ratio, child crowding, living with a stunted or overweight person, deprived area, distance to health centre and socio-economic status. Multilevel logistic regression models examined associations of household and community factors with underweight, calculating OR, corresponding 95 % CI and intraclass correlation coefficients. Effect modification by gender and age was examined by interaction terms and stratified analyses. SETTING: Rural post-conflict area in northern Uganda. SUBJECTS: In total, 2799 households and 11 312 individuals were included, representing all age groups. RESULTS: Living in a female-headed v. male-headed household was associated (OR; 95 % CI) with higher odds for underweight among adult men (2·18; 1·11, 4·27) and girls <5 years (1·51; 0·97, 2·34), but lower odds among adolescent women aged 13-19 years (0·46; 0·22, 0·97). Higher odds was seen for residents living in deprived areas (1·37; 0·97, 1·94), with increasing distance to health services (P-trend <0·05) and among adult men living alone v. living in an average-sized household of seven members (3·23; 1·22, 8·59). Residents living in polygamous households had lower odds for underweight (0·79; 0·65, 0·97). CONCLUSIONS: The gender- and age-specific associations between household-level factors and underweight are likely to reflect local social capital structures. Adapting to these is crucial before implementing health and nutrition interventions.
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Características da Família , População Rural/estatística & dados numéricos , Magreza/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Conflitos Armados , Criança , Pré-Escolar , Estudos Transversais , Feminino , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Lactente , Modelos Logísticos , Masculino , Estado Civil , Pessoa de Meia-Idade , Análise Multinível , Estado Nutricional , Fatores Sexuais , Classe Social , Magreza/etiologia , Uganda/epidemiologia , Adulto JovemRESUMO
AIMS: Immigrants, refugees, and their descendants comprise 12% of Denmark's population. Some of these people do not speak or understand Danish well enough to communicate with the staff in a healthcare setting and therefore need interpreter services. Interpretation through video conferencing equipment (video interpretation) is frequently used and creates a forum where the interpreter is not physically present in the medical consultation. The aim of this study was to investigate the attitudes to and experiences with video interpretation among charge nurses in a Danish university hospital. METHODS: An electronic questionnaire was sent to 99 charge nurses. The questionnaire comprised both closed and open-ended questions. The answers were analysed using descriptive statistics and thematic text condensation. RESULTS: Of the 99 charge nurses, 78 (79%) completed the questionnaire. Most charge nurses, 21 (91%) of the daily/monthly users, and 21 (72%) of the monthly/yearly users, said that video interpretation increased the quality of their conversations with patients. A total of 19 (24%) departments had not used video interpretation within the last 12 months. CONCLUSIONS: The more the charge nurses used video interpretation, the more satisfied they were. Most of the charge nurses using video interpretation expressed satisfaction with the technology and found it easy to use. Some charge nurses are still content to allow family or friends to interpret. To reach its full potential, video interpretation technology has to be reliable and easily accessible for any consultation, including at the bedside.
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Atitude do Pessoal de Saúde , Relações Enfermeiro-Paciente , Recursos Humanos de Enfermagem Hospitalar/psicologia , Supervisão de Enfermagem , Tradução , Comunicação por Videoconferência/estatística & dados numéricos , Estudos Transversais , Dinamarca , Hospitais Universitários , Humanos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The human immunodeficiency virus (HIV) continues to be a major cause of maternal and infant mortality and morbidity in sub-Saharan Africa. Prevention of mother-to-child transmission of HIV (PMTCT) strategies have proven effective in decreasing the number of children infected in utero, intrapartum and during the breastfeeding period. This qualitative study explores knowledge and perceptions of HIV amongst pregnant women, healthcare workers' experiences of the national PMTCT services, and barriers to PMTCT, during a period of programme scale-up in urban Guinea-Bissau (2010-11). METHODS: In-depth interviews were undertaken amongst 27 women and 19 key informants at local antenatal clinics and the national maternity ward in Bissau, Guinea-Bissau. RESULTS: Amongst women who had been tested for HIV, awareness and knowledge of HIV and PMTCT remained low. Testing without informed consent was reported in some cases, in particular when the test was performed around the time of delivery. Possible drivers of inadequate counselling included lack of confidentiality, suboptimal healthcare worker training, lack of time, and perceived occupational risk. Demand-side barriers to PMTCT included lack of HIV and PMTCT knowledge, customary and cultural beliefs associated with HIV and ill-health, HIV stigma and discrimination, and fear of partnership dissolution. CONCLUSIONS: Socio-cultural and operational challenges, including HIV testing without informed consent, present significant barriers to the scale-up of PMTCT services in Bissau. Strengthening local capacity for effective counselling and testing in the antenatal setting is paramount. Further research into local customary beliefs relating to HIV is warranted.
Assuntos
Infecções por HIV/prevenção & controle , Infecções por HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Transmissão Vertical de Doenças Infecciosas/prevenção & controle , Complicações Infecciosas na Gravidez/prevenção & controle , Gestantes/psicologia , Cuidado Pré-Natal/psicologia , Adolescente , Adulto , Feminino , Guiné-Bissau , Infecções por HIV/transmissão , Humanos , Lactente , Gravidez , Pesquisa Qualitativa , Adulto JovemRESUMO
The aim of this study was to explore the everyday life conditions experienced by older migrants and their reasons for specific age- and health-related behaviour during the conduct of everyday life. The study comprised 16 qualitative interviews with migrants aged 56-96 years from Palestine, Lebanon, Iraq and Somalia. The three themes that emerged from the conditions, meanings and reasons analysis illustrated that the older persons were trapped in various ways -without language, in fragmented families and in an unfamiliar structure. We identified these themes as The importance of the life history, Lost in language barriers and Having a national sense of belonging. The main findings emphasise the vulnerability of older migrants in a resettlement country. With an unclear national identity and without the local language, older migrants struggle to develop a clear vision of their role in a minority community in a foreign country. Besides language skills and the need for interpreters, health professionals need to consider issues such as life history, traumas and national belonging when their usual approaches to managing health-related topics have failed.
Assuntos
Migrantes , Idoso , Idoso de 80 Anos ou mais , Barreiras de Comunicação , Dinamarca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oriente MédioRESUMO
OBJECTIVE: To determine the prevalence of adult malnutrition and associated risk factors in a post-conflict area of northern Uganda. METHODS: A cross-sectional community survey was performed from September 2011 to June 2013. All registered residents in Gulu Health and Demographic Surveillance System aged 15 years and older were considered eligible. Trained field assistants collected anthropometric measurements (weight and height) and administered questionnaires with information on sociodemographic characteristics, food security, smoking and alcohol. Nutritional status was classified by body mass index. RESULTS: In total, 2062 men and 2924 women participated and were included in the analyses. The prevalence of underweight was 22.3% for men and 16.0% for women, whereas the prevalence of overweight was 1.5% for men and 7.6% for women. In men, underweight was associated with younger (15-19 years) and older age (>55 years) (P < 0.001), being divorced/separated [odds ratio (OR) = 1.91 (95% confidence interval (CI): 1.21-2.99] and smoking (OR = 2.13, 95% CI: 1.67-2.73). For women, underweight was associated with older age (P < 0.001) and hungry-gap rainy season (May-July) (OR = 1.33, 95% CI: 1.04-1.69). Widowed or divorced/separated women were not more likely to be underweight. No association was found between education, alcohol consumption or food security score and underweight. CONCLUSIONS: Our findings are not in line with the conventional target groups in nutritional programmes and highlight the importance of continuous health and nutritional assessments of all population groups that reflect local social determinants and family structures.
Assuntos
Índice de Massa Corporal , Assistência Alimentar , Disparidades nos Níveis de Saúde , Desnutrição/epidemiologia , Estado Nutricional , Magreza/epidemiologia , Adolescente , Adulto , Fatores Etários , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Estado Civil , Pessoa de Meia-Idade , Razão de Chances , Prevalência , Fatores de Risco , Estações do Ano , Fatores Sexuais , Fumar , Uganda , Adulto JovemRESUMO
BACKGROUND: Twins may be at increased risk of dysglycaemic disorders due to adverse fetal conditions. Data from Africa regarding this association is limited. We studied impaired glucose tolerance (IGT) and other types of dysglycemia among twins and singletons in Guinea-Bissau. METHODS: The study was conducted from February 2011 until March 2012 at the Bandim Health Project, a health and demographic surveillance system site in the capital Bissau. Twins (n = 209) and singletons (n = 182) were recruited from a previously established cohort. Oral glucose tolerance tests (OGTT) were performed, along with anthropometrics and collection of clinical and dietary data. RESULTS: Median age was 16.6 and 14.2 years between twins and singletons, respectively (P = 0.08). Mean birth weight was 2410 vs. 3090 g, respectively (P < 0.001). Twins had higher median fasting- and two hour capillary plasma glucose, 5.4(3.2-8.2) vs. 5.0(3.2-11.5) mmol/L (P < 0.001) and 6.8(3.4-11.3) vs. 6.2(3.2-12.1) mmol/L (P < 0.001), respectively, compared to singletons. The prevalence of IGT was 2.5 % (5/209) vs. 3.5 % (6/182) (RR = 0.73, 95 % CI: 0.20-2.64). 12 % (25/209) of twins had impaired fasting glucose (IFG), compared to 3.5 % (6/182) of singletons (3.63, 1.53-8.62). Dysglycemia (IGT and/or IFG or overt diabetes) was found in 17 % (35/209) vs. 9 % (16/182) (1.90, 1.08-3.37), respectively. CONCLUSIONS: Twins had higher glucose levels in both the fasting and postprandial state. This may indicate a detrimental effect of the twin fetal environment on glucose metabolism later in life, a result contrary to Scandinavian register studies. The IGT burden was low in this young age group and the risk was similar in twins and singletons.
Assuntos
Doenças em Gêmeos/epidemiologia , Intolerância à Glucose/epidemiologia , Adolescente , Glicemia , Estudos de Coortes , Doenças em Gêmeos/metabolismo , Feminino , Intolerância à Glucose/metabolismo , Teste de Tolerância a Glucose , Guiné-Bissau/epidemiologia , Humanos , Masculino , Análise Multivariada , Gravidez , Efeitos Tardios da Exposição Pré-Natal , Prevalência , Fatores de RiscoRESUMO
We analyzed birth order differences in means and variances of height and body mass index (BMI) in monozygotic (MZ) and dizygotic (DZ) twins from infancy to old age. The data were derived from the international CODATwins database. The total number of height and BMI measures from 0.5 to 79.5 years of age was 397,466. As expected, first-born twins had greater birth weight than second-born twins. With respect to height, first-born twins were slightly taller than second-born twins in childhood. After adjusting the results for birth weight, the birth order differences decreased and were no longer statistically significant. First-born twins had greater BMI than the second-born twins over childhood and adolescence. After adjusting the results for birth weight, birth order was still associated with BMI until 12 years of age. No interaction effect between birth order and zygosity was found. Only limited evidence was found that birth order influenced variances of height or BMI. The results were similar among boys and girls and also in MZ and DZ twins. Overall, the differences in height and BMI between first- and second-born twins were modest even in early childhood, while adjustment for birth weight reduced the birth order differences but did not remove them for BMI.
Assuntos
Ordem de Nascimento , Estatura/genética , Índice de Massa Corporal , Gravidez de Gêmeos/genética , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Gravidez , Gêmeos Dizigóticos , Gêmeos MonozigóticosRESUMO
BACKGROUND: Knowledge regarding the human papillomavirus (HPV) and HPV vaccine uptake among ethnic minorities is poorly explored in Denmark. The objective of this study was to explore attitudes and knowledge towards HPV vaccination among Arab mothers and their daughters. METHODS: Five Arabic-speaking focus groups with mothers of vaccine-eligible girls and three focus groups with daughters were conducted. The participants were recruited through different social clubs. A phenomenological approach was used to investigate attitudes and knowledge of HPV vaccination. Meaning condensation inspired by Amedeo Giorgi was used to analyse the transcribed material. RESULTS: A total of 23 women and 13 daughters were included in this study. The mothers' knowledge regarding HPV was limited to the fact that HPV can cause cervical cancer. Two focus groups mentioned that HPV is a sexually transmitted disease and none of the mothers knew that HPV also causes genital warts. Both mothers and daughters acknowledged that the daughters have deeper insight into health-related issues. A gap of knowledge between generations was identified, as mothers and daughters obtained health information from different sources: mothers used the Arabic TV channels as a source of knowledge and daughters had a range of sources, e.g. school, internet, and Western TV channels. The consequence of these differences in obtaining knowledge is that mothers and daughters lack a common language to discuss health issues. Mothers were influenced by Arabic society, while daughters had created a hybrid of Arabic and Danish. Each generation had its own reasons for accepting the vaccine. The level of HPV knowledge and awareness did not affect their uptake decision in that all the participating mothers had accepted the vaccine for their daughters. CONCLUSIONS: Educational programs should target both mothers and daughters because mothers have an inadequate knowledge about HPV. This is likely to bridge the gap of knowledge between mothers and daughters, which constitutes a barrier between the generations.
Assuntos
Árabes/psicologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Grupos Minoritários/psicologia , Mães/psicologia , Núcleo Familiar/etnologia , Infecções por Papillomavirus/etnologia , Vacinas contra Papillomavirus/administração & dosagem , Adolescente , Árabes/estatística & dados numéricos , Criança , Dinamarca , Feminino , Grupos Focais , Humanos , Grupos Minoritários/estatística & dados numéricos , Relações Mãe-Filho , Mães/estatística & dados numéricos , Núcleo Familiar/psicologia , Infecções por Papillomavirus/prevenção & controle , Pesquisa QualitativaRESUMO
OBJECTIVES: To assess HIV knowledge, attitudes, sexual practices and sexual and reproductive health (SRH) service delivery in border areas of Tanzania, with a view to support the prioritisation of SRH interventions in border areas. METHODS: The target sample comprised randomly selected people living near the border, aged 15 to 49 years. To gather information, we utilised: (i) a standardised questionnaire (n = 86; 42 men and 44 women) previously used in national household surveys conducted by the Tanzanian government; (ii) focus group discussions (ten male groups, n = 47; ten female groups, n = 51); and (iii) semi-structured interviews with service providers (n = 37). RESULTS: The mean number of sexual partners, frequency of multiple concurrent partnerships and engagement in transactional sex were significantly higher in the border community than in the national population. Knowledge about HIV was comparable with that in the general population. Access to SRH services was limited in the border areas. CONCLUSION: Efforts to reduce HIV transmission and to improve SRH in the border areas should focus on gaps in service delivery rather than education and information activities alone. In addition, multi-sectorial efforts spanning the health, social, legal and private sectors addressing gender imbalances and poverty alleviation are imperative for reducing poverty-driven unsafe transactional sex.
Assuntos
Infecções por HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Serviços de Saúde Reprodutiva , Saúde Reprodutiva , Adolescente , Adulto , Estudos Transversais , Emigração e Imigração , Feminino , Grupos Focais , Infecções por HIV/epidemiologia , Infecções por HIV/terapia , Humanos , Masculino , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Pobreza , Reprodução , Comportamento Sexual , Parceiros Sexuais , Inquéritos e Questionários , Tanzânia , Adulto JovemRESUMO
BACKGROUND: This study was carried out in Guinea-Bissau's capital Bissau among inpatients and outpatients attending for tuberculosis (TB) treatment within the study area of the Bandim Health Project, a Health and Demographic Surveillance Site. Our aim was to assess the variability between 2 physicians in performing the Bandim tuberculosis score (TBscore), a clinical severity score for pulmonary TB (PTB), and to compare it to the Karnofsky performance score (KPS). METHOD: From December 2008 to July 2009 we assessed the TBscore and the KPS of 100 PTB patients at inclusion in the TB cohort and/or at 1 or more follow-up visits; 61 baseline and 130 follow-up double assessments were obtained. RESULTS: The inter-observer variability of the TBscore (5 symptoms and 6 clinical findings) varied from slight to almost perfect agreement. For the TBscore, all 3 severity classes (SC I-III) were observed, while the KPS only yielded 2 of its 3 possible classes. The grading of PTB patients into severity classes showed moderate agreement for both the TBscore (κ(w) = 0.52, 95% confidence interval 0.46-0.56) and the KPS (κ(w) = 0.49, 95% confidence interval 0.33-0.65). The intra-class correlation coefficient (ICC) was larger for the TBscore than for the KPS (0.822 vs 0.632). CONCLUSIONS: The Bandim TBscore had an acceptable inter-observer variability, seemed to be more disease-related, and performed better than the KPS.
Assuntos
Tuberculose/diagnóstico , Adulto , Estudos de Coortes , Feminino , Humanos , Avaliação de Estado de Karnofsky , Masculino , Variações Dependentes do Observador , Reprodutibilidade dos Testes , Índice de Gravidade de DoençaRESUMO
Twins traditionally retain a special status in many African societies. In Guinea-Bissau, twins are often well regarded yet still suffer from a very high mortality, especially in the perinatal and infant period. At the Bandim Health Project, a health and demographic surveillance site, we have recently established one of the first twin registries in Sub-Saharan Africa. Our short-term aim is to describe twin mortality and morbidity in order to design appropriate health interventions. Our long-term goal is a large-scale database to explore the pathogenesis of prevalent diseases; for example, diabetes mellitus, metabolic syndrome, and infectious diseases such as HIV, tuberculosis, and malaria. A major focus area is also the etiology of low birth weight and how epigenetic processes might modulate the consequences of low birth weight in Sub-Saharan Africa. For this, monozygotic twin studies represent a powerful tool. Though twin studies have been carried out by the Bandim Health Project for more than 30 years, the renewed registry described here was officially established in 2009 and includes both a cohort of newborn twins and a cohort of young and adult twins. Currently more than 1,500 twins are being followed in the two cohorts combined. We believe that the registry holds exciting possibilities and will encourage the establishment of further twin registries across the region.
Assuntos
Doenças em Gêmeos/genética , Sistema de Registros , Gêmeos/genética , Adolescente , Adulto , Criança , Pré-Escolar , Estudos de Coortes , Doenças em Gêmeos/epidemiologia , Guiné-Bissau/epidemiologia , Humanos , Lactente , Adulto JovemRESUMO
BACKGROUND: Concepts such as patient-centred care, patient empowerment and patient participation have challenged our understanding of what it means to be a patient and what role patients play in care pathways. Consequently, patientology as the medical sociological and anthropological study of patients is currently being reconceptualized through perspectives of health as individualized and privatized capital. AIMS: This article explores the potential of such a patientological perspective to enhance our understanding of and tailor care pathways. Particularly, we aim to investigate how such a perspective can contribute to tailoring care pathways to the capacities of individual patients and their relatives. MATERIALS & METHODS: We elaborate on an emerging health capital-theoretic model for patientology and study its potential for optimizing care pathways through two distinct cases of care contexts: communicative challenges in the context of integrative primary care for vulnerable chronically ill multi-morbid patients and the potential of parent involvement in the acute hospitalization of children suspected to be affected by multisystem inflammatory syndrome in children. RESULTS: Our results shed light on the importance of cultural and social capital of patients and their relatives in the design of effective tailored care pathways. We find that a lack of cultural and social capital presents a significant barrier to effective communication between patients and the healthcare professionals involved in their care pathways. We also find that understanding the cultural and social capital of relatives provides an entry point to their effective involvement in the care pathways of their children. DISCUSSION & CONCLUSION: The implications of these findings extend beyond the concrete care contexts studied. This article contributes to our understanding of care pathways through a perspective of health inequalities being based on differences in health capital and demonstrates how the health capital-theoretic patientology model facilitates the systematic development of guidelines for healthcare professionals to assess patients' resources and tailor their care pathways accordingly.
Assuntos
Procedimentos Clínicos , Capital Social , Criança , Humanos , Comunicação , Participação do Paciente , Pessoal de SaúdeRESUMO
Little is known about the combined effect of several risk factors occurring simultaneously, and the perspectives of patients with language barriers or dementia are lacking because these patients are often excluded as research participants. This study aimed at investigating medication safety among older migrants with cognitive disorders who use five or more medications daily from the perspective of older patients and their relatives. Eight semi-structured interviews with patients and relatives were conducted in their homes. The study adopted an inductive hermeneutic phenomenological approach and used both "Analyzing the present" and "Systematic text condensation" as inspiration for the analysis. Three main themes were identified: (i) potential medication safety and threats, (ii) communication and missing medication information and (iii) everyday life with medication. Threats to medication safety included medication perceptions, health perceptions, and cognitive impairment of the patient as well as miscommunication among departments, wrong diagnosis and medication, and unlocked medication cabinets. However, most families expressed having no problems concerning medication, which could be a result of limited engagement of the patient and relatives in the medical treatment and limited medication information provided to the families by healthcare professionals.
Assuntos
Disfunção Cognitiva , Migrantes , Humanos , Pesquisa Qualitativa , Comunicação , Barreiras de ComunicaçãoRESUMO
BACKGROUND: Approximately one-third of patient appointments in Danish health care result in failures, leading to patient risk and sizable resource waste. Existing interventions to alleviate no-shows often target the patients. The underlying reason behind these interventions is a view that attendance or nonattendance is solely the patient's problem. However, these interventions often prove to be ineffective and can perpetuate social biases and health inequalities, leaving behind patients who are more vulnerable or disadvantaged (in terms of social, economical, and linguistic factors, etc). A more holistic understanding of no-shows is needed to optimize processes, reduce waste, and support patients who are vulnerable. OBJECTIVE: This study aims to gain a deep and more comprehensive understanding of the causes, mechanisms, and recurring patterns and elements contributing to nonattendance at Danish hospitals in the Region of Southern Denmark. It emphasizes the patient perspective and analyzes the relational and organizational processes surrounding no-shows in health care. In addition, the study aims to identify effective communicative strategies and organizational processes that can support the development and implementation of successful interventions. METHODS: The study uses mixed quantitative-qualitative methods, encompassing 4 analytical projects focusing on nonattendance patterns, patient knowledge and behavior, the management of hospital appointments, and in situ communication. To address the complexity of no-shows in health care, the study incorporates various data sources. The quantitative data sources include the electronic patient records, Danish central registries, Danish National Patient Registry, and Register of Medicinal Product Statistics. Baseline characteristics of patients at different levels are compared using chi-square tests and Kruskal-Wallis tests. The qualitative studies involve observational data, individual semistructured interviews with patients and practitioners, and video recordings of patient consultations. RESULTS: This paper presents the protocol of the study, which was funded by the Novo Nordisk Foundation in July 2022. Recruitment started in February 2023. It is anticipated that the quantitative data analysis will be completed by the end of September 2023, with the qualitative investigation starting in October 2023. The first study findings are anticipated to be available by the end of 2024. CONCLUSIONS: The existing studies of nonattendance in Danish health care are inadequate in addressing relational and organizational factors leading to hospital no-shows. Interventions have had limited effect, highlighting the Danish health care system's failure to accommodate patients who are vulnerable. Effective interventions require a qualitative approach and robust ethnographic data to supplement the description and categorization of no-shows at hospitals. Obtaining comprehensive knowledge about the causes of missed patient appointments will yield practical benefits, enhancing the safety, coherence, and quality of treatment in health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46227.
RESUMO
AIM: The aim is to identify important factors for immigrants' health and well-being and for their use (or non-use) of primary health care (PHC) and other non-specialised services, and for possible ways that PHC can support healthy ageing of immigrants. BACKGROUND: Older persons are an increasing share of the immigrant population in the global north, frequently in contact with various forms of health services, (PHC services most of all. Consequently, PHC services are in a particularly unique position to support healthy ageing of immigrants. METHODS: The position paper builds on five international, multi-professional and cross-disciplinary small group discussions as well as an international workshop early summer. During the discussions and the workshop, topics were arrived at as to factors related to the health situation of older immigrants, their needs, and health-seeking behaviour, and to how PHC professionals could support healthy ageing in immigrants. Those main topics in turn guided search for relevant research literature and informed the selection of the main research questions of this paper. FINDINGS: Several factors, in addition to culture and cultural differences, are important to for PHC professionals and decision-makers to take into consideration in encounters with older immigrants. The socio-economic position of the older immigrant and close relatives, inter-generational relationships within the immigrant communities, country-specific factors in the host country like health care expenditure, and communication skills in health professionals are all examples of factors playing an important role regarding the health and health-seeking behaviour of older immigrants.