The acceptability of intermittent screening and treatment versus intermittent preventive treatment during pregnancy: results from a qualitative study in Northern Ghana.

BACKGROUND: Affecting mother and child, malaria during pregnancy (MiP) provokes a double morbidity and mortality burden. Within a package of interventions to prevent MiP in endemic areas, the WHO currently recommends intermittent preventive treatment (IPTp). Concerns about anti-malarial resistance have however prompted interest in intermittent screening and treating (IST) as an alternative approach to IPTp. IST involves screening for malaria infection at scheduled antenatal care (ANC) clinic visits and treating malaria cases. In light of the need to comprehensively evaluate new interventions prior to roll out, this article explores the acceptability of IST with artemether-lumefantrine (AL) compared to IPTp with sulphadoxine-pyrimethamine (SP) and in Upper East Region, northern Ghana. METHODS: Data were collected alongside an open-label, randomized, controlled trial of IST-AL and IPTp-SP in Kassena-Nankana District. Thirty pregnant women enrolled in the clinical trial participated in six focus group discussions. Ten in-depth interviews were carried out with clinical trial staff. Observations were also made at the health facilities where the clinical trial took place. RESULTS: Trial participants were generally willing to endure the discomfort of the finger prick necessary for a rapid diagnostic test for malaria and this reflected a wider demand for diagnostic techniques. Reports of side effects were however linked to both trial anti-malarials. Direct complaints about SP were particularly severe with regard to women's experience of vomiting. Although the follow-up treatment doses of AL for IST were not supervised, based on blister inspection and questioning trial, staff were confident about participants' adherence to the treatment course. One case of partial adherence to the AL treatment course was reported. CONCLUSION: Despite the discomfort of the finger prick required to perform the intermittent malaria screening, trial participants generally expressed more positive sentiments towards IST-AL than IPTp-SP. Nonetheless, questions remain about adherence to a multiple dose anti-malarial regimen during pregnancy, particularly in endemic areas where MiP is often non-symptomatic. Any implementation of IST must be accompanied by appropriate health messages on adherence and the necessary training for health staff regarding case management.

Factors likely to affect community acceptance of a malaria vaccine in two districts of Ghana: a qualitative study.

Malaria is a leading cause of morbidity and mortality among children in Ghana. As part of the effort to inform local and national decision-making in preparation for possible malaria vaccine introduction, this qualitative study explored community-level factors that could affect vaccine acceptance in Ghana and provides recommendations for a health communications strategy. The study was conducted in two purposively selected districts: the Ashanti and Upper East Regions. A total of 25 focus group discussions, 107 in-depth interviews, and 21 semi-structured observations at Child Welfare Clinics were conducted. Malaria was acknowledged to be one of the most common health problems among children. While mosquitoes were linked to the cause and bed nets were considered to be the main preventive method, participants acknowledged that no single measure prevented malaria. The communities highly valued vaccines and cited vaccination as the main motivation for taking children to Child Welfare Clinics. Nevertheless, knowledge of specific vaccines and what they do was limited. While communities accepted the idea of minor vaccine side effects, other side effects perceived to be more serious could deter families from taking children for vaccination, especially during vaccination campaigns. Attendance at Child Welfare Clinics after age nine months was limited. Observations at clinics revealed that while two different opportunities for counseling were offered, little attention was given to addressing mothers' specific concerns and to answering questions related to child immunization. Positive community attitudes toward vaccines and the understanding that malaria prevention requires a comprehensive approach would support the introduction of a malaria vaccine. These attitudes are bolstered by a well-established child welfare program and the availability in Ghana of active, flexible structures for conveying health information to communities. At the same time, it would be important to improve the quality of Child Welfare Clinic services, particularly in relation to communication around vaccination.

Prevention and management of malaria during pregnancy: findings from a comparative qualitative study in Ghana, Kenya and Malawi.

BACKGROUND: In endemic regions of sub-Saharan Africa, malaria during pregnancy (MiP) is a major preventable cause of maternal and infant morbidity and mortality. Current recommended MiP prevention and control includes intermittent preventive treatment (IPTp), distribution of insecticide-treated bed nets (ITNs) and appropriate case management. This article explores the social and cultural context to the uptake of these interventions at four sites across Africa. METHODS: A comparative qualitative study was conducted at four sites in three countries: Ghana, Malawi and Kenya. Individual and group interviews were conducted with pregnant women, their relatives, opinion leaders, other community members and health providers. Observations, which focused on behaviours linked to MiP prevention and treatment, were also undertaken at health facilities and in local communities. RESULTS: ITNs were generally recognized as important for malaria prevention. However, their availability and use differed across the sites. In Malawi and Kenya, ITNs were sought-after items, but there were complaints about availability. In central Ghana, women saved ITNs until the birth of the child and they were used seasonally in northern Ghana. In Kenya and central Ghana, pregnant women did not associate IPTp with malaria, whereas, in Malawi and northern Ghana, IPTp was linked to malaria, but not always with prevention. Although IPTp adherence was common at all sites, whether delivered with directly observed treatment or not, a few women did not comply with IPTp often citing previous side effects. Although generally viewed as positive, experiences of malaria testing varied across the four sites: treatment was sometimes administered in spite of a negative diagnosis in Ghana (observed) and Malawi (reported). Despite generally following the advice of healthcare staff, particularly in Kenya, personal experience, and the availability and accessibility of medication--including anti-malarials--influenced MiP treatment. CONCLUSION: Although ITNs were valued as malaria prevention, health messages could address issues that reduce their use during pregnancy in particular contexts. The impact of previous side effects on adherence to IPTp and anti-malarial treatment regimens during pregnancy also requires attention. Overtreatment of MiP highlights the need to monitor the implementation of MiP case management guidelines.

Local illness concepts and their relevance for the prevention and control of malaria during pregnancy in Ghana, Kenya and Malawi: findings from a comparative qualitative study.

BACKGROUND: In sub-Saharan Africa, the burden of morbidity and mortality linked to malaria during pregnancy (MiP) is significant and compounded by its unclear symptoms and links with other health problems during pregnancy. Mindful of the biomedical and social complexity of MiP, this article explores and compares local understandings of MiP and their links with other pregnancy-related health problems. METHODS: A comparative qualitative study was undertaken at four sites in three countries: Ghana, Malawi and Kenya. Individual and group interviews were conducted with pregnant women, their relatives, opinion leaders, other community members and health providers. MiP-related behaviours were also observed at health facilities and in local communities. RESULTS: Across the four sites, local malaria concepts overlapped with biomedically defined malaria. In terms of symptoms, at-risk groups, outcomes and aetiology of malaria during pregnancy, this overlap was however both site-specific and partial. Moreover, the local malaria concepts were not monolithic and their descriptions varied amongst respondents. The symptoms of pregnancy and malaria also overlapped but, for respondents, symptom severity was the distinguishing factor. Malaria was generally, though not universally, perceived as serious for pregnant women. Miscarriage was the most widely known outcome, and links with anaemia, low birth weight and congenital malaria were mentioned. Nonetheless, amongst many potential causes of miscarriage, malaria was not recognized as the most important, but rather interacted with other pregnancy-related problems. CONCLUSIONS: Given the overlap of common pregnancy problems with the symptoms of malaria, and the limited association of malaria with its main outcomes, a comprehensive antenatal care programme is the most appropriate strategy for the provision of health education, prevention and treatment for MiP. Variations in locally shared understandings of MiP must however be taken into account when designing and promoting MiP intervention strategies.

Diversity in defining end of life care: an obstacle or the way forward?

AIM: The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings. METHOD: A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis. RESULTS: Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable. CONCLUSION: The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care.

Factors affecting antenatal care attendance: results from qualitative studies in Ghana, Kenya and Malawi.

BACKGROUND: Antenatal care (ANC) is a key strategy to improve maternal and infant health. However, survey data from sub-Saharan Africa indicate that women often only initiate ANC after the first trimester and do not achieve the recommended number of ANC visits. Drawing on qualitative data, this article comparatively explores the factors that influence ANC attendance across four sub-Saharan African sites in three countries (Ghana, Kenya and Malawi) with varying levels of ANC attendance. METHODS: Data were collected as part of a programme of qualitative research investigating the social and cultural context of malaria in pregnancy. A range of methods was employed interviews, focus groups with diverse respondents and observations in local communities and health facilities. RESULTS: Across the sites, women attended ANC at least once. However, their descriptions of ANC were often vague. General ideas about pregnancy care - checking the foetus' position or monitoring its progress - motivated women to attend ANC; as did, especially in Kenya, obtaining the ANC card to avoid reprimands from health workers. Women's timing of ANC initiation was influenced by reproductive concerns and pregnancy uncertainties, particularly during the first trimester, and how ANC services responded to this uncertainty; age, parity and the associated implications for pregnancy disclosure; interactions with healthcare workers, particularly messages about timing of ANC; and the cost of ANC, including charges levied for ANC procedures - in spite of policies of free ANC - combined with ideas about the compulsory nature of follow-up appointments. CONCLUSION: In these socially and culturally diverse sites, the findings suggest that 'supply' side factors have an important influence on ANC attendance: the design of ANC and particularly how ANC deals with the needs and concerns of women during the first trimester has implications for timing of initiation.

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

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

Culture is a priority for research in end-of-life care in Europe: a research agenda.

CONTEXT: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent. OBJECTIVES: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts. METHODS: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques. RESULTS: Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity. CONCLUSION: This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.

Cultural competence in end-of-life care: terms, definitions, and conceptual models from the British literature.

BACKGROUND: Cultural competency is increasingly recommended in policy and practice to improve end-of-life (EoL) care for minority ethnic groups in multicultural societies. It is imperative to critically analyze this approach to understand its underlying concepts. AIM: Our aim was to appraise cultural competency approaches described in the British literature on EoL care and minority ethnic groups. DESIGN: This is a critical review. Articles on cultural competency were identified from a systematic review of the literature on minority ethnic groups and EoL care in the United Kingdom. Terms, definitions, and conceptual models of cultural competency approaches were identified and situated according to purpose, components, and origin. Content analysis of definitions and models was carried out to identify key components. RESULTS: One-hundred thirteen articles on minority ethnic groups and EoL care in the United Kingdom were identified. Over half (n=60) contained a term, definition, or model for cultural competency. In all, 17 terms, 17 definitions, and 8 models were identified. The most frequently used term was "culturally sensitive," though "cultural competence" was defined more often. Definitions contained one or more of the components: "cognitive," "implementation," or "outcome." Models were categorized for teaching or use in patient assessment. Approaches were predominantly of American origin. CONCLUSIONS: The variety of terms, definitions, and models underpinning cultural competency approaches demonstrates a lack of conceptual clarity, and potentially complicates implementation. Further research is needed to compare the use of cultural competency approaches in diverse cultures and settings, and to assess the impact of such approaches on patient outcomes.

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

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

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

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

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

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

End-of-life care across Southern Europe: a critical review of cultural similarities and differences between Italy, Spain and Portugal.

Evidence from a range of sources demonstrates that end-of-life (EoL) care practices and preferences vary across countries; culture is consistently one of the main explanations given for this. In order to understand how cultural factors are used to explain similarities and differences in EoL care between Spain, Italy and Portugal, database and hand searches were performed and cross-cutting core themes identified. Similarities included higher proportions of people who wished to die at home than actually died at home, a persistent trend for partial disclosure in Italy and Spain, low use of advance directives, and low incidence of all medical EoL decisions (with the exception of terminal sedation) compared to northern European countries. The role of religion and the importance of family ties were the two main cultural factors used to explain the similarities. Further research is needed in order to interpret the important differences that were also found.

Social and cultural factors affecting uptake of interventions for malaria in pregnancy in Africa: a systematic review of the qualitative research.

BACKGROUND: Malaria during pregnancy (MiP) results in adverse birth outcomes and poor maternal health. MiP-related morbidity and mortality is most pronounced in sub-Saharan Africa, where recommended MiP interventions include intermittent preventive treatment, insecticide-treated bednets and appropriate case management. Besides their clinical efficacy, the effectiveness of these interventions depends on the attitudes and behaviours of pregnant women and the wider community, which are shaped by social and cultural factors. Although these factors have been studied largely using quantitative methods, qualitative research also offers important insights. This article provides a comprehensive overview of qualitative research on social and cultural factors relevant to uptake of MiP interventions in sub-Saharan Africa. METHODS AND FINDINGS: A systematic search strategy was employed: literature searches were undertaken in several databases (OVID SP, IS Web of Knowledge, MiP Consortium library). MiP-related original research, on social/cultural factors relevant to MiP interventions, in Africa, with findings derived from qualitative methods was included. Non-English language articles were excluded. A meta-ethnographic approach was taken to analysing and synthesizing findings. Thirty-seven studies were identified. Fourteen concentrated on MiP. Others focused on malaria treatment and prevention, antenatal care (ANC), anaemia during pregnancy or reproductive loss. Themes identified included concepts of malaria and risk in pregnancy, attitudes towards interventions, structural factors affecting delivery and uptake, and perceptions of ANC. CONCLUSIONS: Although malaria risk is associated with pregnancy, women's vulnerability is often considered less disease-specific and MiP interpreted in locally defined categories. Furthermore, local discourses and health workers' ideas and comments influence concerns about MiP interventions. Understandings of ANC, health worker-client interactions, household decision-making, gender relations, cost and distance to health facilities affect pregnant women's access to MiP interventions and lack of healthcare infrastructure limits provision of interventions. Further qualitative research is however required: many studies were principally descriptive and an in-depth comparative approach is recommended.

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

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