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1.  Perceptions of childhood immunization in a minority community: qualitative study 
To assess reasons for low uptake of immunization amongst orthodox Jewish families.
Qualitative interviews with 25 orthodox Jewish mothers and 10 local health care workers.
The orthodox Jewish community in North East London.
Main outcome measures
Identification of views on immunization in the orthodox Jewish community.
In a community assumed to be relatively insulated from direct media influence, word of mouth is nevertheless a potent source of rumours about vaccination dangers. The origins of these may lie in media scares that contribute to anxieties about MMR. At the same time, close community cohesion leads to a sense of relative safety in relation to tuberculosis, with consequent low rates of BCG uptake. Thus low uptake of different immunizations arises from enhanced feelings of both safety and danger. Low uptake was not found to be due to the practical difficulties associated with large families, or to perceived insensitive cultural practices of health care providers.
The views and practices of members of this community are not homogeneous and may change over time. It is important that assumptions concerning the role of religious beliefs do not act as an obstacle for providing clear messages concerning immunization, and community norms may be challenged by explicitly using its social networks to communicate more positive messages about immunization. The study provides a useful example of how social networks may reinforce or challenge misinformation about health and risk and the complex nature of decision making about children's health.
PMCID: PMC2376260  PMID: 18463280
2.  Childbirth customs in Orthodox Jewish traditions. 
Canadian Family Physician  1999;45:682-686.
OBJECTIVE: To describe cultural beliefs of Orthodox Jewish families regarding childbirth in order to help family physicians enhance the quality and sensitivity of their care. QUALITY OF EVIDENCE: These findings were based on a review of the literature searched in MEDLINE (1966 to present), HEALTHSTAR (1975 to present), EMBASE (1988 to present), and Social Science Abstracts (1984 to present). Interviews with several members of the Orthodox Jewish community in Edmonton, Alta, and Vancouver, BC, were conducted to determine the accuracy of the information presented and the relevance of the paper to the current state of health care delivery from the recipients' point of view. MAIN MESSAGE: Customs and practices surrounding childbirth in the Orthodox Jewish tradition differ in several practical respects from expectations and practices within the Canadian health care system. The information presented was deemed relevant and accurate by those interviewed, and the subject matter was considered to be important for improving communication between patients and physicians. Improved communication and recognition of these differences can improve the quality of health care provided to these patients. CONCLUSIONS: Misunderstandings rooted in different cultural views of childbirth and the events surrounding it can adversely affect health care provided to women in the Orthodox Jewish community in Canada. A basic understanding of the cultural foundations of potential misunderstandings will help Canadian physicians provide effective health care to Orthodox Jewish women.
PMCID: PMC2328400  PMID: 10099807
3.  Oral Health Disparities and Unmet Dental Needs among Preschool Children in Chelsea, MA: Exploring Mechanisms, Defining Solutions 
Significant disparities exist in children’s receipt of preventive dental care (PDC) in the United States. Many of the children at greatest risk of dental disease do not receive timely PDC; when they do receive dental care, it is often more for relief of dental pain. Chelsea is a low-income, diverse Massachusetts community with high rates of untreated childhood caries. There are various dental resources available in Chelsea, yet many children do not access dental care at levels equivalent to their needs.
Using Chelsea as a case-study, to explore factors contributing to forgone PDC (including the age 1 dental visit) in an in-depth way.
We used a qualitative study design that included semi-structured interviews with parents of preschool children residing in Chelsea, and Chelsea-based providers including pediatricians, dentists, a dental hygienist and early childhood care providers. We examined: a) parents’ dental attitudes and oral health cultural beliefs; b) parents’ and providers’ perspectives on facilitators and barriers to PDC, reasons for unmet needs, and proposed solutions to address the problem. We recorded, transcribed and independently coded all interviews. Using rigorous, iterative qualitative data analyses procedures, we identified emergent themes.
Factors perceived to facilitate receipt of PDC included Head-Start oral health policies, strong pediatric primary care/dental linkages, community outreach and advertising, and parents’ own oral health experiences. Most parents and providers perceived there to be an adequate number of accessible dental services and resources in Chelsea, including for Medicaid enrollees. However, several barriers impeded children from receiving timely PDC, the most frequently cited being insurance related problems for children and adults. Other barriers included limited dental services for children <2 years, perceived poor quality of some dental practices, lack of emphasis on prevention-based dental care, poor care-coordination, and insufficient culturally-appropriate care. Important family-level barriers included parental oral health literacy, cultural factors, limited English proficiency and competing priorities. Several solutions were proposed to address identified barriers.
Even in a community with a considerable number of dental resources, various factors may preclude access to these services by preschool-aged children. Opportunities exist to address modifiable factors through strategic oral health policies, community outreach and improved care coordination between physicians, dentists and early childhood care providers.
PMCID: PMC4299657  PMID: 25614878
Children; Preventive dental care; Oral health; Early childhood caries
4.  Informing a culturally appropriate approach to oral health and dental care for pre-school refugee children: a community participatory study 
BMC Oral Health  2014;14:69.
Pre-school children in families of recently settled refugees often have very high rates of early childhood caries (ECC). ECC is associated with a high level of morbidity and is largely preventable, however effective culturally appropriate models of care are lacking. This study aimed to provide a deeper understanding of the refugee experience related to early oral health by exploring pre-school refugee families (i) understanding of ECC and child oral health, (ii) experiences of accessing dental services and (iii) barriers and enablers for achieving improved oral health. The knowledge gained will be critical to the development of effective early oral health programs in refugee children.
Community based participatory qualitative methodology using focus groups of resettled refugee families and community refugee nurse interviews. A community reference group was established and a bi-lingual community research associate was employed. Transcripts were analysed for thematic content using NVivo software.
There were 44 participants: eight focus groups (nine countries of origin) and five interviews. Emergent themes were (i) the major influence of parents’ previous experience, including their beliefs about deciduous (baby) teeth, traditional feeding practices and poverty; and a consequent lack of understanding of the importance of early oral health and early dental caries, (ii) the burden of resettlement including prioritising, parenting, learning about new foods and how to assimilate into the community, and (iii) refugees’ difficulties in accessing both information and dental services, and the role of schools in addressing these issues. An Opportunities for Change Model was proposed.
The main implication of the study is the demonstration of how enhanced understanding of the refugee experience can inform improvement in early oral prevention and treatment. The community participatory methodology of the study provided a basis for cross-cultural understanding and has already assisted in translating the findings and raising awareness in the provision of targeted refugee oral health services.
PMCID: PMC4061102  PMID: 24923308
Early childhood caries; Refugee experience; Cultural
5.  The influence of socio-cultural interpretations of pregnancy threats on health-seeking behavior among pregnant women in urban Accra, Ghana 
Although antenatal care coverage in Ghana is high, there exist gaps in the continued use of maternity care, especially utilization of skilled assistance during delivery. Many pregnant women seek care from different sources aside the formal health sector. This is due to negative perceptions resulting from poor service quality experiences in health facilities. Moreover, the socio-cultural environment plays a major role for this care-seeking behavior. This paper seeks to examine beliefs, knowledge and perceptions about pregnancy and delivery and care-seeking behavior among pregnant women in urban Accra, Ghana.
A qualitative study with 6 focus group discussions and 13 in-depth interviews were conducted at Taifa-Kwabenya and Madina sub-districts, Accra. Participants included mothers who had delivered within the past 12 months, pregnant women, community members, religious and community leaders, orthodox and non-orthodox healthcare providers. Interviews and discussions were audio-taped, transcribed and coded into larger themes and categories.
Evidence showed perceived threats, which are often given socio-cultural interpretations, increased women’s anxieties, driving them to seek multiple sources of care. Crucially, care-seeking behavior among pregnant women indicated sequential or concurrent use of biomedical care and other forms of care including herbalists, traditional birth attendants, and spiritual care. Use of multiple sources of care in some cases disrupted continued use of skilled provider care. Furthermore, use of multiple forms of care is encouraged by a perception that facility-based care is useful only for antenatal services and emergencies. It also highlights the belief among some participants that care from multiple sources are complementary to each other.
Socio-cultural interpretations of threats to pregnancy mediate pregnant women’s use of available healthcare services. Efforts to encourage continued use of maternity care, especially skilled birth assistance at delivery, should focus on addressing generally perceived dangers to pregnancy. Also, the attractiveness of facility-based care offers important opportunities for building collaborations between orthodox and alternative care providers with the aim of increasing use of skilled obstetric care. Conventional antenatal care should be packaged to provide psychosocial support that helps women deal with pregnancy-related fear.
PMCID: PMC3840661  PMID: 24246028
Pregnancy; Perception; Beliefs; Socio-cultural; Healthcare; Ghana
6.  Professional Uncertainty and Disempowerment Responding to Ethnic Diversity in Health Care: A Qualitative Study 
PLoS Medicine  2007;4(11):e323.
While ethnic disparities in health and health care are increasing, evidence on how to enhance quality of care and reduce inequalities remains limited. Despite growth in the scope and application of guidelines on “cultural competence,” remarkably little is known about how practising health professionals experience and perceive their work with patients from diverse ethnic communities. Using cancer care as a clinical context, we aimed to explore this with a range of health professionals to inform interventions to enhance quality of care.
Methods and Findings
We conducted a qualitative study involving 18 focus groups with a purposeful sample of 106 health professionals of differing disciplines, in primary and secondary care settings, working with patient populations of varying ethnic diversity in the Midlands of the UK. Data were analysed by constant comparison and we undertook processes for validation of analysis. We found that, as they sought to offer appropriate care, health professionals wrestled with considerable uncertainty and apprehension in responding to the needs of patients of ethnicities different from their own. They emphasised their perceived ignorance about cultural difference and were anxious about being culturally inappropriate, causing affront, or appearing discriminatory or racist. Professionals' ability to think and act flexibly or creatively faltered. Although trying to do their best, professionals' uncertainty was disempowering, creating a disabling hesitancy and inertia in their practice. Most professionals sought and applied a knowledge-based cultural expertise approach to patients, though some identified the risk of engendering stereotypical expectations of patients. Professionals' uncertainty and disempowerment had the potential to perpetuate each other, to the detriment of patient care.
This study suggests potential mechanisms by which health professionals may inadvertently contribute to ethnic disparities in health care. It identifies critical opportunities to empower health professionals to respond more effectively. Interventions should help professionals acknowledge their uncertainty and its potential to create inertia in their practice. A shift away from a cultural expertise model toward a greater focus on each patient as an individual may help.
From a qualitative study, Joe Kai and colleagues have identified opportunities to empower health professionals to respond more effectively to challenges in their work with patients from diverse ethnic communities.
Editors' Summary
Communities are increasingly diverse in terms of ethnicity (belonging to a group of people defined by social characteristics such as cultural tradition or national origin) and race (belonging to a group identified by inherited physical characteristics). Although health professionals and governments are striving to ensure that everybody has the same access to health care, there is increasing evidence of ethnic inequalities in health-care outcomes. Some of these inequalities reflect intrinsic differences between groups of people—Ashkenazi Jews, for example, often carry an altered gene that increases their chance of developing aggressive breast cancer. Often, however, these differences reflect inequalities in the health care received by different ethnic groups. To improve this situation, “cultural competence” has been promoted over recent years. Cultural competence is the development of skills by individuals and organizations that allow them to work effectively with people from different cultures. Health professionals are now taught about ethnic differences in health beliefs and practices, religion, and communication styles to help them provide the best service to all their patients.
Why Was This Study Done?
Numerous guidelines aim to improve cultural competency but little is known about how health professionals experience and perceive their work with patients from diverse ethnic groups. Is their behavior influenced by ethnicity in ways that might contribute to health care disparities? For example, do doctors sometimes avoid medical examinations for fear of causing offence because of cultural differences? If more were known about how health professionals handle ethnic diversity (a term used here to include both ethnicity and race) it might be possible to reduce ethnic inequalities in health care. In this qualitative study, the researchers have explored how health professionals involved in cancer care are affected by working with ethnically diverse patients. A qualitative study is one that collects nonquantitative data such as how doctors “feel” about treating people of different ethnic backgrounds; a quantitative study might compare clinical outcomes in different ethnic groups.
What Did the Researchers Do and Find?
The researchers enrolled 106 doctors, nurses, and other health-related professionals from different health-service settings in the Midlands, an ethnically diverse region of the UK. They organized 18 focus groups in which the health professionals described their experiences of caring for people from ethnic minority backgrounds. The participants were encouraged to recall actual cases and to identify what they saw as problems and strengths in their interactions with these patients. The researchers found that the health professionals wrestled with many challenges when providing health care for patients from diverse ethnic backgrounds. These challenges included problems with language and with general communication (for example, deciding when it was acceptable to touch a patient to show empathy). Health professionals also worried they did not know enough about cultural differences. As a result, they said they often felt uncertain of their ability to avoid causing affront or appearing racist. This uncertainty, the researchers report, disempowered the health professionals, sometimes making them hesitate or fail to do what was best for their patient.
What Do These Findings Mean?
These findings reveal that health professionals often experience considerable uncertainty when caring for ethnically diverse patients, even after training in cultural competency. They also show that this uncertainty can lead to hesitancy and inertia, which might contribute to ethnic health care inequalities. Because the study participants were probably already interested in ethnic diversity and health care, interviews with other health professionals (and investigations of patient experiences) are needed to confirm these findings. Nevertheless, the researchers suggest several interventions that might reduce health care inequalities caused by ethnic diversity. For example, health professionals should be encouraged to recognize their uncertainty and should have access to more information and training about ethnic differences. In addition, there should be a shift in emphasis away from relying on knowledge-based cultural information towards taking an “ethnographic” approach. In other words, health professionals should be helped to feel able to ask their patients about what matters most to them as individuals about their illness and treatment.
Additional Information.
Please access these Web sites via the online version of this summary at
Information on cultural competence and health care is available from the US National Center for Cultural Competence (in English and Spanish) and DiversityRx
PROCEED (Professionals Responding to Cancer in Ethnic Diversity) is a multimedia training tool for educators within the health and allied professions developed from the results of this study; a press release on PROCEED is available from the University of Nottingham
Transcultural Health Care Practice: An educational resource for nurses and health care practitioners is available on the web site of the UK Royal College of Nursing
PMCID: PMC2071935  PMID: 18001148
7.  An ethnographic study of Latino preschool children's oral health in rural California: Intersections among family, community, provider and regulatory sectors 
BMC Oral Health  2008;8:8.
Latino children experience a higher prevalence of caries than do children in any other racial/ethnic group in the US. This paper examines the intersections among four societal sectors or contexts of care which contribute to oral health disparities for low-income, preschool Latino1 children in rural California.
Findings are reported from an ethnographic investigation, conducted in 2005–2006, of family, community, professional/dental and policy/regulatory sectors or contexts of care that play central roles in creating or sustaining low income, rural children's poor oral health status. The study community of around 9,000 people, predominantly of Mexican-American origin, was located in California's agricultural Central Valley. Observations in homes, community facilities, and dental offices within the region were supplemented by in-depth interviews with 30 key informants (such as dental professionals, health educators, child welfare agents, clinic administrators and regulatory agents) and 47 primary caregivers (mothers) of children at least one of whom was under 6 years of age.
Caregivers did not always recognize visible signs of caries among their children, nor respond quickly unless children also complained of pain. Fluctuating seasonal eligibility for public health insurance intersected with limited community infrastructure and civic amenities, including lack of public transportation, to create difficulties in access to care. The non-fluoridated municipal water supply is not widely consumed because of fears about pesticide pollution. If the dentist brought children into the clinic for multiple visits, this caused the accompanying parent hardship and occasionally resulted in the loss of his or her job. Few general dentists had received specific training in how to handle young patients. Children's dental fear and poor provider-parent communication were exacerbated by a scarcity of dentists willing to serve rural low-income populations. Stringent state fiscal reimbursement policies further complicated the situation.
Several societal sectors or contexts of care significantly intersected to produce or sustain poor oral health care for children. Parental beliefs and practices, leading for example to delay in seeking care, were compounded by lack of key community or economic resources, and the organization and delivery of professional dental services. In the context of state-mandated policies and procedures, these all worked to militate against children receiving timely care that would considerably reduce oral health disparities among this highly disadvantaged population.
PMCID: PMC2362117  PMID: 18377660
8.  High group A streptococcal carriage in the Orthodox Jewish community of north Hackney. 
BACKGROUND: General practitioners and the microbiologist serving north Hackney in north east London formed the impression, that of throat swabs sent to the laboratory, a disproportionate number of those positive for group A streptococcus appeared to come from Orthodox Jewish patients. AIM: To confirm the clinical impression that the pharyngeal carriage of group A streptococci was higher in the Orthodox Jewish population than in other members of the population in the same locality. DESIGN OF STUDY: A general practice questionnaire survey of all patients aged three years or over attending two practices that are about one kilometre apart, over a five-week period. SETTING: Two general practices in north London, one of which had a significant Orthodox Jewish patient list. METHODS: Throat swabs were taken from eligible patients who were invited to participate by completing a questionnaire and having a throat swab taken. RESULTS: Swabs were taken from 1223 people. After correction for age (child or adult) and history of recent sore throat, the Orthodox Jewish community had a significantly higher carriage rate of group A streptococci than the rest of the population (odds ratio = 5.0 [2.1 to 11.9]). The proportion of adults with group A streptococci with and without sore throats was 6.4% and 2.4% respectively in the Orthodox Jewish group and 0.45% and 1% respectively in the 'others' group. The proportion of children with group A streptococci with and without sore throats was 17.4% and 5.9% respectively and 3.4% and 0% respectively in the others. These differences were not explained by the larger family size and domestic overcrowding in the Orthodox Jewish group. CONCLUSIONS: Orthodox Jews in north London have a higher pharyngeal carriage rate of group A streptococci than the neighbouring population. These results may have implications for the diagnosis and treatment of acute sore throat in Orthodox Jewish patients, especially children.
PMCID: PMC1313922  PMID: 11217620
9.  Access to and utilisation of GP services among Burmese migrants in London: a cross-sectional descriptive study 
An estimated 10,000 Burmese migrants are currently living in London. No studies have been conducted on their access to health services. Furthermore, most studies on migrants in the United Kingdom (UK) have been conducted at the point of service provision, carrying the risk of selection bias. Our cross-sectional study explored access to and utilisation of General Practice (GP) services by Burmese migrants residing in London.
We used a mixed-method approach: a quantitative survey using self-administered questionnaires was complemented by qualitative in-depth interviews for developing the questionnaire and triangulating the findings of the survey. Overall, 137 questionnaires were received (a response rate of 57%) and 11 in-depth interviews conducted. The main outcome variables of the study included GP registration, barriers towards registration, GP consultations, barriers towards consultations, and knowledge on entitlements to health care. Quantitative data were analysed using descriptive statistics, association tests, and a multivariate analysis using logistic regression. The qualitative information was analysed using content analysis.
The respondents were young, of roughly equal gender (51.5% female), well educated, and had a fair level of knowledge on health services in the UK. Although the GP registration rate was relatively high (80%, 109 out of 136), GP service utilisation during the last episode of illness, at 56.8% (54 out of 95), was low. The statistical analysis showed that age being younger than 35 years, lacking prior overseas experience, having an unstable immigration status, having a shorter duration of stay, and resorting to self-medication were the main barriers hindering Burmese migrants from accessing primary health care services. These findings were corroborated by the in-depth interviews.
Our study found that having formal access to primary health care was not sufficient to ensure GP registration and health care utilisation. Some respondents faced difficulties in registering with GP practices. Many of those who have registered prefer to forego GP services in favour of self-medication, partly due to long waiting times and language barriers. To ensure that migrants enjoy the health services they need and to which they are entitled, more proactive steps are required, including those that make health services culturally responsive.
PMCID: PMC2970605  PMID: 20939904
10.  A rapid ethnographic study of breastfeeding in the North and South of Italy 
The past ten years have witnessed a rising trend in the prevalence and duration of breastfeeding in Italy, but breastfeeding rates increase in an unequal way; they are higher in the North of Italy than in the South. The purpose of this study was to describe the experiences, expectations and beliefs of a sample of mothers, and to identify differences, if any, between the North and the South of Italy.
The study was conducted in two regions of Italy, Friuli Venezia Giulia in the Northeast and Basilicata in the South. Two hundred and seventy-nine mothers of infants and children 6 to 23 months of age were interviewed using an 85-item questionnaire including closed and open questions on infant feeding experiences and beliefs, sources of information and support, reasons for intended and actual choices and practices, and some demographic and social variables. Face-to-face interviews were conducted between May 2001 and September 2002. Quantitative and qualitative methods were used for data analysis.
The distribution of the mothers by age, education, employment and parity did not differ from that of the general population of the two regions. The reported rates of initiation and duration of breastfeeding were also similar: 95% started breastfeeding, exclusive breastfeeding was 32% at three and 9% at six months, with 64% and 35% of any breastfeeding, respectively. Some differences were reported in the rates of full breastfeeding, reflecting different ages of introduction of non-nutritive fluids. These, as well as nutritive fluids – including infant formula – and complementary foods, were introduced far too early. Advice on infant feeding was generally provided by health professionals and often was not based on up-to-date recommendations. Mothers were generally aware of the advantages of breastfeeding, but at the same time reported problems that they were not able to solve alone or through social and health system support. Most mothers would welcome the support of a peer counsellor. More mothers in Basilicata than in Friuli Venezia Giulia reported difficulties with breastfeeding related to returning to work and were not familiar with their rights on breastfeeding and maternity leave.
Programmes for the protection, promotion and support of breastfeeding in these and similar regions of Italy should concentrate on better training of health professionals with regards to lactation management, communication, and counselling skills. The addition of trained peer counsellors could reinforce the work done by the health system and, through community involvement, could help change social prejudice in the mid- and long-term. The differences between regions should be taken into account in formulating these programmes to avoid increasing, and possibly to decrease, the current gaps.
PMCID: PMC1570447  PMID: 16952324
11.  Minimising barriers to dental care in older people 
BMC Oral Health  2008;8:7.
Older people are increasingly retaining their natural teeth but at higher risk of oral disease with resultant impact on their quality of life. Socially deprived people are more at risk of oral disease and yet less likely to take up care. Health organisations in England and Wales are exploring new ways to commission and provide dental care services in general and for vulnerable groups in particular. This study was undertaken to investigate barriers to dental care perceived by older people in socially deprived inner city area where uptake of care was low and identify methods for minimising barriers in older people in support of oral health.
A qualitative dual-methodological approach, utilising both focus groups and individual interviews, was used in this research. Participants, older people and carers of older people, were recruited using purposive sampling through day centres and community groups in the inner city boroughs of Lambeth, Southwark and Lewisham in South London. A topic guide was utilised to guide qualitative data collection. Informants' views were recorded on tape and in field notes. The data were transcribed and analysed using Framework Methodology.
Thirty-nine older people and/or their carers participated in focus groups. Active barriers to dental care in older people fell into five main categories: cost, fear, availability, accessibility and characteristics of the dentist. Lack of perception of a need for dental care was a common 'passive barrier' amongst denture wearers in particular. The cost of dental treatment, fear of care and perceived availability of dental services emerged to influence significantly dental attendance. Minimising barriers involves three levels of action to be taken: individual actions (such as persistence in finding available care following identification of need), system changes (including reducing costs, improving information, ensuring appropriate timing and location of care, and good patient management) and societal issues (such as reducing isolation and loneliness). Older people appeared to place greater significance on system and societal change than personal action.
Older people living within the community in an inner city area where NHS dental care is available face barriers to dental care. Improving access to care involves actions at individual, societal and system level. The latter includes appropriate management of older people by clinicians, policy change to address NHS charges; consideration of when, where and how dental care is provided; and clear information for older people and their carers on available local dental services, dental charges and care pathways.
PMCID: PMC2335092  PMID: 18366785
12.  Qualitative study of decisions about infant feeding among women in east end of London 
BMJ : British Medical Journal  1999;318(7175):30-34.
To improve understanding of how first time mothers who belong to a socioeconomic group with particularly low rates of breast feeding decide whether or not to initiate breast feeding.
Qualitative semistructured interviews early in pregnancy and 6-10 weeks after birth.
Women’s homes in east end of London.
21 white, low income women expecting their first baby were interviewed mostly at home, often with their partner or a relative. Two focus groups were conducted.
Women who had regularly seen a relative or friend successfully breast feed and described this experience positively were more confident about and committed to breast feeding. They were also more likely to succeed. Exposure to breast feeding, however, could be either a positive or a negative influence on the decision to breast feed, depending on the context. Women who had seen breast feeding only by a stranger often described this as a negative influence, particularly if other people were present. All women knew that breast feeding has health benefits. Ownership of this knowledge, however, varied according to the woman’s experience of seeing breast feeding.
The decision to initiate breast feeding is influenced more by embodied knowledge gained from seeing breast feeding than by theoretical knowledge about its benefits. Breast feeding involves performing a practical skill, often with others present. The knowledge, confidence, and commitment necessary to breast feed may be more effectively gained through antenatal apprenticeship to a breastfeeding mother than from advice given in consultations or from books.
Key messagesWomen who have seen successful breast feeding as part of their daily lives and perceive this as a positive experience are more likely to initiate breast feedingEmbodied knowledge gained through seeing breast feeding may be more influential than theoretical knowledge about the health benefits for women of lower social classListening to pregnant women talking about breast feeding could help clinicians assess the relative importance of theoretical and embodied knowledge for each womanWomen hoping to breast feed but with little exposure to breast feeding may benefit from an antenatal apprenticeship with a breastfeeding motherIdeally apprenticeship would be with a breastfeeding mother from her social network to minimise the potential barriers of embarrassment and lack of confidence with strangers
PMCID: PMC27674  PMID: 9872883
13.  The Role of HIV-Related Stigma in Utilization of Skilled Childbirth Services in Rural Kenya: A Prospective Mixed-Methods Study 
PLoS Medicine  2012;9(8):e1001295.
Janet Turan and colleagues examined the role of the perception of women in rural Kenya of HIV-related stigma during pregnancy on their subsequent utilization of maternity services.
Childbirth with a skilled attendant is crucial for preventing maternal mortality and is an important opportunity for prevention of mother-to-child transmission of HIV. The Maternity in Migori and AIDS Stigma Study (MAMAS Study) is a prospective mixed-methods investigation conducted in a high HIV prevalence area in rural Kenya, in which we examined the role of women's perceptions of HIV-related stigma during pregnancy in their subsequent utilization of maternity services.
Methods and Findings
From 2007–2009, 1,777 pregnant women with unknown HIV status completed an interviewer-administered questionnaire assessing their perceptions of HIV-related stigma before being offered HIV testing during their first antenatal care visit. After the visit, a sub-sample of women was selected for follow-up (all women who tested HIV-positive or were not tested for HIV, and a random sample of HIV-negative women, n = 598); 411 (69%) were located and completed another questionnaire postpartum. Additional qualitative in-depth interviews with community health workers, childbearing women, and family members (n = 48) aided our interpretation of the quantitative findings and highlighted ways in which HIV-related stigma may influence birth decisions. Qualitative data revealed that health facility birth is commonly viewed as most appropriate for women with pregnancy complications, such as HIV. Thus, women delivering at health facilities face the risk of being labeled as HIV-positive in the community. Our quantitative data revealed that women with higher perceptions of HIV-related stigma (specifically those who held negative attitudes about persons living with HIV) at baseline were subsequently less likely to deliver in a health facility with a skilled attendant, even after adjusting for other known predictors of health facility delivery (adjusted odds ratio = 0.44, 95% CI 0.22–0.88).
Our findings point to the urgent need for interventions to reduce HIV-related stigma, not only for improving quality of life among persons living with HIV, but also for better health outcomes among all childbearing women and their families.
Please see later in the article for the Editors' Summary.
Editors' Summary
Every year, nearly 350,000 women die from pregnancy- or childbirth-related complications. Almost all these “maternal” deaths occur in developing countries. In sub-Saharan Africa, for example, the maternal mortality ratio (the number of maternal deaths per 100,000 live births) is 500 whereas in industrialized countries it is only 12. Most maternal deaths are caused by hemorrhage (severe bleeding after childbirth), post-delivery infections, obstructed (difficult) labor, and blood pressure disorders during pregnancy. All these conditions can be prevented if women have access to adequate reproductive health services and if trained health care workers are present during delivery. Notably, in sub-Saharan Africa, infection with HIV (the virus that causes AIDS) is an increasingly important contributor to maternal mortality. HIV infection causes maternal mortality directly by increasing the occurrence of pregnancy complications and indirectly by increasing the susceptibility of pregnant women to malaria, tuberculosis, and other “opportunistic” infections—HIV-positive individuals are highly susceptible to other infections because HIV destroys the immune system.
Why Was This Study Done?
Although skilled delivery attendants reduce maternal mortality, there are many barriers to their use in developing countries including cost and the need to travel long distances to health facilities. Fears and experiences of HIV-related stigma and discrimination (prejudice, negative attitudes, abuse, and maltreatment directed at people living with HIV) may also be a barrier to the use of skilled childbirth service. Maternity services are prime locations for HIV testing and for the provision of interventions for the prevention of mother-to-child transmission (PMTCT) of HIV, so pregnant women know that they will have to “deal with” the issue of HIV when visiting these services. In this prospective mixed-methods study, the researchers examine the role of pregnant women's perceptions of HIV-related stigma in their subsequent use of maternity services in Nyanza Province, Kenya, a region where 16% women aged 15–49 are HIV-positive and where only 44.2% of mothers give birth in a health facility. A mixed-methods study combines qualitative data—how people feel about an issue—with quantitative data—numerical data about outcomes.
What Did the Researchers Do and Find?
In the Maternity in Migori and AIDS Stigma (MAMAS) study, pregnant women with unknown HIV status living in rural regions of Nyanza Province answered questions about their perceptions of HIV-related stigma before being offered HIV testing during their first antenatal clinic visit. After delivery, the researchers asked the women who tested HIV positive or were not tested for HIV and a sample of HIV-negative women where they had delivered their baby. They also gathered qualitative information about barriers to maternity and HIV service use by interviewing childbearing women, family members, and community health workers. The qualitative data indicate that labor in a health facility is commonly viewed as being most appropriate for women with pregnancy complications such as HIV infection. Thus, women delivering at health facilities risk being labeled as HIV positive, a label that the community associates with promiscuity. The quantitative data indicate that women with more negative attitudes about HIV-positive people (higher perceptions of HIV-related stigma) at baseline were about half as likely to deliver in a health facility with a skilled attendant as women with more positive attitudes about people living with HIV.
What Do These Findings Mean?
These findings suggest that HIV-related stigma is associated with the low rate of delivery by skilled attendants in rural areas of Nyanza Province and possibly in other rural regions of sub-Saharan Africa. Community mobilization efforts aimed at increasing the use of PMTCT services may be partly responsible for the strong perception that delivery in a health facility is most appropriate for women with HIV and other pregnancy complications and may have inadvertently strengthened the perception that women who give birth in such facilities are likely to be HIV positive. The researchers suggest, therefore, that health messages should stress that delivery in a health facility is recommended for all women, not just HIV-positive women or those with pregnancy complications, and that interventions should be introduced to reduce HIV-related stigma. This combined strategy has the potential to increase the use of maternity services by all women and the use of HIV and PMTCT services, thereby reducing some of the most pressing health problems facing women and their children in sub-Saharan Africa.
Additional Information
Please access these Web sites via the online version of this summary at
The United Nations Children's Fund (UNICEF) provides information on maternal mortality, including the WHO/UNICEF/UNFPA/World Bank 2008 country estimates of maternal mortality; a UNICEF special report tells the stories of seven mothers living with HIV in Lesotho
The World Health Organization provides information on maternal health, including information about Millennium Development Goal 5, which aims to reduce maternal mortality (in several languages); the Millennium Development Goals, which were agreed by world leaders in 2000, are designed to eradicate extreme poverty worldwide by 2015
Immpact is a global research initiative for the evaluation of safe motherhood intervention strategies
Maternal Death: The Avoidable Crisis is a briefing paper published by the independent humanitarian medical aid organization Médecins Sans Frontières (MSF) in March 2012
Information is available from Avert, an international AIDS charity on all aspects of HIV/AIDS, including information on women, HIV and AIDS, on HIV and pregnancy, on HIV and AIDS stigma and discrimination, and on HIV in Kenya (in English and Spanish); Avert also has personal stories from women living with HIV
The Stigma Action Network (SAN) is a collaborative endeavor that aims to comprehensively coordinate efforts to develop and expand program, research, and advocacy strategies for reducing HIV stigma worldwide, including mobilizing stakeholders, delivering program and policy solutions, and maximizing investments in HIV programs and services globally
The People Living with Stigma Index aims to address stigma relating to HIV and advocate on key barriers and issues perpetuating stigma; it has recently published Piecing it together for women and girls, the gender dimensions of HIV-related stigma
The Health Policy Project has prepared a review of the academic and programmatic literature on stigma and discrimination as barriers to achievement of global goals for maternal health and the elimination of new child HIV infections (see under Resources)
More information on the MAMAS study is available from the UCSF Center for AIDS Prevention Studies
PMCID: PMC3424253  PMID: 22927800
14.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
PMCID: PMC3484131  PMID: 23118618
15.  Oral Health Disparities and Periodontal Disease in Asian and Pacific Island Populations 
Ethnicity & disease  2005;15(4 Suppl 5):S5-39-46.
While oral health disparities exist in many ethnic groups in Hawaii, the challenge of developing research and intervention programs is hampered by the lack of a dental school and adequate state resources.
To use a collaboration model to establish a mentoring relationship with a research-intensive school of dentistry to reduce oral health disparities in Hawaii.
Collaborative interactions with the University of Hawaii School of Medicine (UH) and the University of North Carolina School of Dentistry at Chapel Hill (UNC) included bimonthly teleconferences, on-site planning and mentoring sessions, yearly conferences in Hawaii open to the community using UNC faculty, and on-site skills training sessions. The community was asked to participate in determining priorities for research through focus-group interactions. Two pilot investigations were also conducted.
Both universities have been awarded grants to fund activities to support the combined intellectual and physical resources of multiple private, public, and community organizations to achieve the goal of improving the oral health status of the people of Hawaii. As a result of initial planning, two related grants have been submitted (one approved, one disapproved) to fund pilot studies on the oral health status of mothers and their babies in a rural community. These studies include both UH and UNC investigators.
Health disparities occur among diverse ethnic groups in Hawaii, and links between general health and oral health continue to emerge. In spite of obstacles to designing effective research and intervention programs in Hawaii, UH fostered a collaborative relationship with a premiere dental research institution to develop competence in clinical research, conduct pilot studies, and obtain extramural funding for comprehensive studies. Direct involvement of community representatives in the research process is integral to the success of such studies and will continue to serve as the foundation of our community-based participatory research. The network partners have accomplished their primary goal of developing culturally appropriate methods for assessing determinants of oral health, oral health-related quality of life, and health outcomes in Asians and Pacific Islanders.
PMCID: PMC1469774  PMID: 16315381
Collaborative Research; Asians and Pacific Islanders; Hawaii; Oral Health Disparities; Interdisciplinary Research Network
16.  Pan-London tuberculosis services: a service evaluation 
London has the largest proportion of tuberculosis (TB) cases of any western European capital, with almost half of new cases drug-resistant. Prevalence varies considerably between and within boroughs with research suggesting inadequate control of TB transmission in London. Economic pressures may exacerbate the already considerable challenges for service organisation and delivery within this context. This paper presents selected findings from an evaluation of London’s TB services’ organisation, delivery, professional workforce and skill mix, intended to support development of a strategic framework for a pan-London TB service. These may also interest health service professionals and managers in TB services in the UK, other European cities and countries and in services currently delivered by multiple providers operating independently.
Objectives were: 1) To establish how London’s TB services are structured and delivered in relation to leadership, management, organisation and delivery, coordination, staffing and support; 2) To identify tools/models for calculating skill mix as a basis for identifying skill mix requirements in delivering TB services across London; 3) To inform a strategic framework for the delivery of a pan-London TB service, which may be applicable to other European cities. The multi-method service audit evaluation comprised documentary analysis, semi-structured interviews with TB service users (n = 10), lead TB health professionals and managers (n = 13) representing London’s five sectors and focus groups with TB nurses (n = 8) and non-London network professionals (n = 2).
Findings showed TB services to be mainly hospital-based, with fewer community-based services. Documentary analysis and professionals’ interviews suggested difficulties with early access to services, low suspicion index amongst some GPs and restricted referral routes. Interviews indicated lack of managed accommodation for difficult to treat patients, professional workforce shortages, a need for strategic leadership, nurse-led clinics and structured career paths for TB nurses and few social care/outreach workers to support patients with complex needs.
This paper has identified key issues relating to London’s TB services’ organisation, delivery, professional workforce and skill mix. The majority of these present challenges which need to be addressed as part of the future development of a strategic framework for a pan-London TB service. More consistent strategic planning/co-ordination and sharing of best practice is needed, together with a review of pan-London TB workforce development strategy, encompassing changing professional roles, skills development needs and patient pathways. These findings may be relevant with the development of TB services in other European cities.
PMCID: PMC3507865  PMID: 22805234
17.  Use of the out-of-hours emergency dental service at two south-east London hospitals 
BMC Oral Health  2009;9:19.
Prior to the introduction of the 2006 NHS dental contract in England and Wales, general dental practitioners (GDPs) were responsible for the provision of out-of-hours (OOH) emergency dental services (EDS); however there was great national variation in service provision. Under the contractual arrangements introduced 1st April 2006, local commissioning agencies became formally responsible for the provision of out-of-hours emergency dental services. This study aimed to examine patients' use of an out-of-hours emergency dental service and to determine whether the introduction of the 2006 national NHS dental contract had resulted in a change in service use, with a view to informing future planning and commissioning of care.
A questionnaire was administered to people attending the out-of-hours emergency dental service at two inner city London hospitals over two time periods; four weeks before and six months after the introduction of the dental contract in April 2006. The questionnaire explored: reasons for attending; dental registration status and attendance; method of access; knowledge and use of NHS Direct; satisfaction with the service; future preferences for access and use of out-of-hours dental services. Data were compared to determine any impact of the new contract on how and why people accessed the emergency dental service.
The response rate was 73% of attendees with 981 respondents for the first time period and 546 for the second. There were no significant differences between the two time periods in the gender, age, ethnic distribution or main language of service users accessing the service. Overall, the main dental problem was toothache (72%) and the main reason for choosing this service was due to the inability to access another emergency dental service (42%). Significantly fewer service users attended the out-of-hours emergency dental service during the second period because they could not get an appointment with their own dentist (p = 0.002 from 28% to 20%) and significantly more service users in the second period felt the emergency dental service was easier to get to than their own dentist (P = 0.003 from 8% to 14%). Service users found out about the service from multiple sources, of which family and friends were the most common source (30%). In the second period fewer service users were obtaining information about the service from dental receptionists (P = 0.002 from 14% to 9%) and increased use of NHS Direct for a dental problem was reported (P = 0.002 from 16% to 22%) along with more service users being referred to the service by NHS Direct (P = 0.02 from 19% to 24%). The most common preference for future emergency dental care was face-to-face with a dentist (79%).
This study has provided an insight into how and why people use an out-of-hours emergency dental service and has helped to guide future commissioning of these services. Overall, the service was being used in much the same way both before and after the 2006 dental contract. Significantly more use was being made of NHS Direct after April 2006; however, informal information networks such as friends and family remain an important source of information about accessing emergency dental services.
PMCID: PMC2729730  PMID: 19630986
18.  Feasibility of home management using ACT for childhood malaria episodes in an urban setting 
Over 90% of malaria cases occur in Sub-Saharan Africa, where a child under the age of 5 years dies from this illness every 30 seconds. The majority of families in Sub- Saharan Africa treat malaria at home, but therapy is often incomplete, hence the World Health Organization has adopted the strategy of home management of malaria to solve the problem. The purpose of this study was to determine community perception and the treatment response to episodes of childhood malaria in an urban setting prior to implementation of home management using artemisinin-based combination therapy (ACT).
This qualitative exploratory study on the home management of malaria in urban children under 5 years of age used 15 focus group discussions and 20 in-depth interviews in various categories of caregivers of children under 5 years. One hundred and eighteen people participated in the focus group discussions and 20 in the in-depth interviews. The study explored beliefs and knowledge about malaria, mothers’ perception of home management of the disease, health-seeking behavior, prepackaged treatment of malaria using ACT and a rapid diagnostic test, preferred channels for home management of uncomplicated malaria, communication, the role of the community in home management of malaria, and the motivation of drug distributors in the community.
The mothers’ perception of malaria was the outcome of events other than mosquito bites. Home treatment is very common and is guided by the way mothers perceive signs and symptoms of malaria. Frequent change of malarial drugs by the national health policy and financial difficulties were the main problems mothers faced in treating febrile children. Rapid diagnostic testing and prepackaged ACT for simple malaria in children under 5 years would be accepted if it was offered at an affordable price. Tribalism and religious beliefs might hinder the delivery of home management of malaria. The availability of rapid diagnostic testing and ACT all year round is one of the challenges of home management of malaria. Although radio and television featured among the current sources of information within the community, meetings, churches, schools, and other public gatherings were the best venues for social mobilization, while community health workers and community leaders were the best sensitization agents for positive behavior change to adhere to home management of malaria. Monetary incentives should be offered to community drug distributors. This should be deducted from the combined price of ACT and rapid diagnostic testing.
For successful implementation of home management of malaria, there should be proper education, social mobilization of the population, and continuous monitoring and evaluation of field activities to ensure adequate stocks of ACT and rapid diagnostic testing within the framework of the intervention.
PMCID: PMC3273905  PMID: 22328833
malaria; home management; children; urban; rapid diagnostic test; artemisinin-based combination therapy; Cameroon
19.  Listening to those on the frontline: service users’ experiences of London tuberculosis services 
To explore tuberculosis (TB) service users’ experiences and satisfaction with care provision.
Thirty-nine percent of all new UK TB cases occur in London. Prevalence varies considerably between and within boroughs. Overall, research suggests inadequate control of London’s TB transmission; TB has become a health care priority for all London Primary Care Trusts. Service users’ experiences and satisfaction with care provision have not been explored adequately previously.
A qualitative research design, using semi-structured face-to-face interviews was used. Ten service users, purposively selected in key risk groups across London, were interviewed. All interviews were digitally recorded with users’ permission, transcribed verbatim, and analyzed thematically.
Participants were treated in local hospitals for 6–12 months. Treatment was administered by TB nurses to inpatients and outpatients receiving directly observed therapy in consultation with medical staff and home visits for complex cases. Two participants did not realize the importance of compliance. Overall, they were satisfied with many TB services’ aspects, communication, and service organization. Early access, low suspicion index amongst some GPs, and restricted referral routes were identified as service barriers. Other improvement areas were information provision on drug side effects, diet, nutritional status, and a few health professionals’ attitudes. The effects on people varied enormously from minimal impact to psychological shock; TB also affected social and personal aspects of their life. With regard to further support facilities, some positive views on managed accommodation by TB-aware professionals for those with accommodation problems were identified.
This first in-depth study of TB service users’ experiences across London offers valuable insights into service users’ experiences, providing information and recommendations for a strategic framework for TB service organization and delivery. Overall, further research is needed; TB services – local, national, and international – need to be more closely aligned with service users’ complex needs.
PMCID: PMC3140309  PMID: 21792299
qualitative study; interviews; TB; service organization; services improvement
20.  Community response to artemisinin-based combination therapy for childhood malaria: a case study from Dar es Salaam, Tanzania 
Malaria Journal  2010;9:61.
New malaria treatment guidelines in Tanzania have led to the large-scale deployment of artemether-lumefantrine (Coartem®), popularly known as ALu or dawa mseto. Very little is known about how people in malaria endemic areas interpret policy makers' decision to replace existing anti-malarials, such as sulphadoxine-pyrimethamine (SP) with "new" treatment regimens, such as ALu or other formulations of ACT. This study was conducted to examine community level understandings and interpretations of ALu's efficacy and side-effects. The paper specifically examines the perceived efficacy of ALu as articulated by the mothers of young children diagnosed with malaria and prescribed ALu.
Participant observation, six focus group discussions in two large villages, followed by interviews with a random sample of 110 mothers of children less than five years of age, who were diagnosed with malaria and prescribed ALu. Additionally, observations were conducted in two village dispensaries involving interactions between mothers/caretakers and health care providers.
While more than two-thirds of the mothers had an overall negative disposition toward SP, 97.5% of them spoke favourably about ALu, emphasizing it's ability to help their children to rapidly recover from malaria, without undesirable side-effects. 62.5% of the mothers reported that they were spending less money dealing with malaria than previously when their child was treated with SP. 88% of the mothers had waited for 48 hours or more after the onset of fever before taking their child to the dispensary. Mothers' knowledge and reporting of ALu's dosage was, in many cases, inconsistent with the recommended dosage schedule for children.
Deployment of ALu has significantly changed community level perceptions of anti-malarial treatment. However, mothers continue to delay seeking care before accessing ALu, limiting the impact of highly subsidized rollout of the drug. Implementation of ACT-based treatment guidelines must be complemented with educational campaigns to insure that mothers seek prompt help for their children within 24 hours of the onset of fever. Improved communication between health care providers and mothers of sick children can facilitate better adherence to ALu's recommended dosage. Community level interpretations of anti-malarials are multifaceted; integrating knowledge of local beliefs and practices surrounding consumption of anti-malarials into programmatic goals can help to significantly improve malaria control interventions.
PMCID: PMC2842283  PMID: 20187949
21.  The Cultural and Social Context of Oral and Pharyngeal Cancer Risk and Control among Hispanics in New York 
New York City (NYC) has one of the highest incidence and mortality rates of oral and pharyngeal cancer (OPC) for Hispanics of any major U.S. city. This qualitative assessment explores OPC awareness, attitudes, and screening practices among at-risk Hispanics, health care providers, and community leaders in a Hispanic neighborhood of NYC. Four focus groups (N=39) were conducted with at-risk Hispanics. Structured interviews were conducted with ten health care providers (four physicians, four dentists, two dental hygienists) and three key community leaders. Results showed major gaps in OPC awareness across all key stakeholders. Focus group participants expressed difficulty in accessing appropriate health care. Health care providers were not familiar with OPC prevention and early detection practices. Community leaders lacked the knowledge and resources necessary for advocating prevention and early detection for their constituencies. All participants reported cultural, social, and structural barriers to prevention. There is a need for developing a comprehensive, culturally competent health communication program that targets all key stakeholders in the at-risk Hispanic community of NYC.
PMCID: PMC2169356  PMID: 17982210
Oral cancer; Hispanics; cancer; culture
22.  'No sister, the breast alone is not enough for my baby' a qualitative assessment of potentials and barriers in the promotion of exclusive breastfeeding in southern Zambia 
Appropriate feeding practices are of fundamental importance for the survival, growth, development and health of infants and young children. The aim of the present study was to collect baseline information on current infant and young child feeding practices, attitudes and knowledge in Mazabuka, Zambia, using a qualitative approach.
The study was conducted in Mazabuka, 130 km south of Lusaka in Zambia in January and February in 2005. Nine focus group discussions with mothers and a total of 18 in-depth interviews with fathers, grandmothers, health staff and traditional birth attendants were performed in both rural and urban areas.
Breastfeeding was reported to be universal, the use of pre-lacteal feeds appeared to be low, colostrum was rarely discarded, and attitudes to and knowledge about exclusive breastfeeding were generally good. However, few practised exclusive breastfeeding. The barriers revealed were: (1) the perception of insufficient milk, (2) the fear of dying or becoming too sick to be able to breastfeed, (3) convention, (4) the perception of 'bad milk' and (5) lack of knowledge on the subject. The health staff and traditional birth attendants were the most important actors in transmitting knowledge about infant feeding to the mothers. Both categories appeared to have updated knowledge on child health and were well respected in the society. Fathers and grandmothers tended to be less knowledgeable on novel subjects such as exclusive breastfeeding and often showed a negative attitude towards it. At the same time they had considerable authority over mothers and children and infant feeding decisions. The rural population was in general less educated and more prone to conventional non-exclusive feeding practices.
The message that exclusive breastfeeding (EBF) is beneficial for child health had reached the health workers and was taught to mothers. However, conventions and expectations from family members in this Zambian community were important barriers in preventing the message of EBF from being translated into practice. The deep-rooted beliefs that prohibit EBF need to be addressed in projects and campaigns promoting EBF.
PMCID: PMC2614965  PMID: 18986539
23.  An oral health literacy intervention for Indigenous adults in a rural setting in Australia 
BMC Public Health  2012;12:461.
Indigenous Australians suffer substantially poorer oral health than their non-Indigenous counterparts and new approaches are needed to address these disparities. Previous work in Port Augusta, South Australia, a regional town with a large Indigenous community, revealed associations between low oral health literacy scores and self-reported oral health outcomes. This study aims to determine if implementation of a functional, context-specific oral health literacy intervention improves oral health literacy-related outcomes measured by use of dental services, and assessment of oral health knowledge, oral health self-care and oral health- related self-efficacy.
This is a randomised controlled trial (RCT) that utilises a delayed intervention design. Participants are Indigenous adults, aged 18 years and older, who plan to reside in Port Augusta or a nearby community for the next two years. The intervention group will receive the intervention from the outset of the study while the control group will be offered the intervention 12 months following their enrolment in the study. The intervention consists of a series of five culturally sensitive, oral health education workshops delivered over a 12 month period by Indigenous project officers. Workshops consist of presentations, hands-on activities, interactive displays, group discussions and role plays. The themes addressed in the workshops are underpinned by oral health literacy concepts, and incorporate oral health-related self-efficacy, oral health-related fatalism, oral health knowledge, access to dental care and rights and entitlements as a patient. Data will be collected through a self-report questionnaire at baseline, at 12 months and at 24 months. The primary outcome measure is oral health literacy. Secondary outcome measures include oral health knowledge, oral health self-care, use of dental services, oral health-related self-efficacy and oral health-related fatalism.
This study uses a functional, context-specific oral health literacy intervention to improve oral health literacy-related outcomes amongst rural-dwelling Indigenous adults. Outcomes of this study will have implications for policy and planning by providing evidence for the effectiveness of such interventions as well as provide a model for working with Indigenous communities.
PMCID: PMC3416720  PMID: 22716205
24.  Pregnancy-Related Health Information-Seeking Behaviors Among Rural Pregnant Women in India: Validating the Wilson Model in the Indian Context 
Objectives: Understanding health information-seeking behaviors and barriers to care and access among pregnant women can potentially moderate the consistent negative associations between poverty, low levels of literacy, and negative maternal and child health outcomes in India. Our seminal study explores health information needs, health information-seeking behaviors, and perceived information support of low-income pregnant women in rural India. Methods: Using the Wilson Model of health information-seeking framework, we designed a culturally tailored guided interview to assess information-seeking behaviors and barriers to information seeking among pregnant women. We used a local informant and health care worker to recruit 14 expectant women for two focus group interviews lasting 45 minutes to an hour each. Thirteen other related individuals including husbands, mothers, mothers-in-law, and health care providers were also recruited by hospital counselors for in-depth interviews regarding their pregnant wives/daughters and daughters-in-law. Interviews were transcribed and analyzed by coding the data into thematic categories. Results: The data were coded manually and emerging themes included pregnancy-related knowledge and misconceptions and personal, societal, and structural barriers, as well as risk perceptions and self-efficacy. Lack of access to health care and pregnancy-related health information led participants to rely heavily on information and misconceptions about pregnancy gleaned from elder women, friends, and mothers-in-law and husbands. Doctors and para-medical staff were only consulted during complications. All women faced personal, societal, and structural level barriers, including feelings of shame and embarrassment, fear of repercussion for discussing their pregnancies with their doctors, and inadequate time with their doctors. Conclusion: Lack of access and adequate health care information were of primary concern to pregnant women and their families. Policy Implications: Our study can help inform policies and multi-sectoral approaches that are being taken by the Indian government to reduce maternal and child morbidity and burdens.
PMCID: PMC4144280  PMID: 25191141
health information-seeking; Wilson model; pregnancy; pre-natal care
25.  Chapter Oral Health Advocates: A Nationwide Model for Pediatrician Peer Education and Advocacy about Oral Health 
Objective. (1) To describe an innovative program training US pediatricians to be Chapter Oral Health Advocates (COHAs). (2) To provide insight into COHAs' experiences disseminating oral health knowledge to fellow pediatricians. Patients and Methods. Interviews with 40 COHAs who responded to an email request, from a total of 64 (62% response). Transcripts were analyzed for common themes about COHA activities, facilitators, and barriers. Results. COHAs reported positive experiences at the AAP oral health training program. A subset of academic COHAs focused on legislative activity and another on resident education about oral health. Residents had an easier time adopting oral health activities while practicing pediatricians cited time constraints. COHAs provided insights into policy, barriers, and facilitators for incorporating oral health into practice. Conclusions. This report identifies factors influencing pediatricians' adoption of oral health care into practice. COHAs reported successes in training peers on integrating oral health into pediatric practice, identified opportunities and challenges to oral health implementation in primary care, and reported issues about the state of children's oral health in their communities. With ongoing support, the COHA program has a potential to improve access to preventive oral health services in the Medical Home and to increase referrals to a Dental Home.
PMCID: PMC3818849  PMID: 24228032

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