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Practice pointer - Consultations for people from minority groups
Abstract
This article provides practical suggestions on ways to improve communication with people from minority ethnic and faith groups
... The ability to provide culturally competent care has become a common requirement for palliative care providers due to increased ethnic diversity in many European countries. [36][37][38] However, providers may at times have a lack of insight into how culture shapes understandings of and responses to death and dying, and how to assess psychosocial needs among different ethnic minority groups. [36][37][38][39] Moreover, healthcare providers may be in fear of being insulting or insensitive. ...
... [36][37][38] However, providers may at times have a lack of insight into how culture shapes understandings of and responses to death and dying, and how to assess psychosocial needs among different ethnic minority groups. [36][37][38][39] Moreover, healthcare providers may be in fear of being insulting or insensitive. 36 37 Overall, it has been found that healthcare providers providing palliative care services often do not have the necessary training to provide culturally competent care for patients or understand the complex relationship between culture and health. ...
... 36 37 Overall, it has been found that healthcare providers providing palliative care services often do not have the necessary training to provide culturally competent care for patients or understand the complex relationship between culture and health. [36][37][38][39] Patients and healthcare providers had differing understandings of the amount of social support provided by family members. For example, it has been observed that healthcare providers often assume that South Asian Muslim families would prefer to 'look after their own', whereas when British Muslims where questioned, they felt that the family structure was changing. ...
To explore experiences of social support needs among South Asian Muslim patients with life-limiting illness, living in Scotland, who are parents of young children.
Secondary analysis of data from a multiperspective, longitudinal Scottish study involving in-depth semistructured interviews with patients, their nominated carers and healthcare professionals. Data were analysed using interpretive phenomenological analysis.
Edinburgh, Scotland.
South-Asian Muslim patients with life-limiting illness with children under the age of 18 (n=8), their carer (n=6) and their healthcare professional.
Access and provision of social support in palliative care.
Open-ended qualitative interviews identified four main themes: (1) parental sadness over being unable to provide tangible support; (2) parental desire to continue to provide emotional support; (3) limited availability of informal social support networks; and (4) differing perspectives between healthcare professionals and patients on patient access to social support sources, with a subtheme being the capacity of male carers to provide social support. South-Asian parents at the end of life had limited access to extended-network support. Gender roles appeared as challenging for healthcare providers who at times overestimated the amount of support a female carer could provide and underestimated the amount of support male carers provided. Implications for practice include the need for greater awareness by healthcare providers of the social support needs of ethnic minority and migrant parents with life-limiting illnesses and especially an awareness of the importance of the role of male and female carers. Further research is needed to explore how the timing of migration impacts the need for and availability of tangible and emotional informal social support among ethnic minority parents with life-limiting illness.
... A substantial and growing proportion (∼20% at present) of the German population has a migration background. 1 Provision of a high quality of care regardless of cultural background is challenging both for physicians and policymakers. 2 Currently, migrants often receive poorer care than the indigenous population. [3][4][5][6] In Germany, migrants are frequently poorly informed and underuse preventive healthcare services. ...
... However, high-quality studies on healthcare interventions for migrants are lacking. 2 Patient engagement and empowerment are central issues in current debates on improving healthcare, 8 especially for chronic illnesses and mental disorders. 9 A fundamental strategy to promote patient engagement and Strengths and limitations of this study ▪ High internal and external validity of the study design. ...
Objectives
To evaluate the usefulness of culture-sensitive patient information material compared with standard translated material.
Design
Multicentre, double-blind randomised controlled trial.
Setting
37 primary care practices.
Participants
435 adult primary care patients with a migration background with unipolar depressive disorder or non-specific chronic low back pain were randomised. Patients who were unable to read in the language of their respective migration background were excluded. Sufficient data were obtained from 203 women and 106 men. The largest group was of Russian origin (202 patients), followed by those of Turkish (52), Polish (30) and Italian (25) origin.
Interventions
Intervention group: provision of culture-sensitive adapted material. Control group: provision of standard translated material.
Main outcome measures
Primary outcome: patient-rated usefulness (USE) assessed immediately after patients received the material. Secondary outcomes: patient-rated usefulness after 8 weeks and 6 months, symptoms of depression (PHQ-9), back pain (Back Pain Core Set) and quality of life (WHO-5) assessed at all time points.
Results
Usefulness was found to be significantly higher (t=1.708, one-sided p=0.04) in the intervention group (USE-score=65.08, SE=1.43), compared with the control group (61.43, SE=1.63), immediately after patients received the material, in the intention-to-treat analysis, with a mean difference of 3.65 (one-sided 95% lower confidence limit=0.13). No significant differences were found for usefulness at follow-up (p=0.16, p=0.71). No significant effect was found for symptom severity in depression (p=0.95, p=0.66, p=0.58), back pain (p=0.40, p=0.45, p=0.32) or quality of life (p=0.76, p=0.86, p=0.21), either immediately after receiving the material, or at follow-up (8 weeks; 6 months). Patients with a lower level of dominant society immersion benefited substantially and significantly more from the intervention than patients with a high level of immersion (p=0.005).
Conclusion
Cultural adaptation of patient information material provides benefits over high quality translations. Clinicians are encouraged to use culture-sensitive material in their consultations, particularly with low-acculturated patients.
Trial registration number
German Register for Clinical Trials: DRKS00004241, Universal Trial Number: U1111-1135-8043, Results.
... There is little we can do to alleviate the situation the people in the camps suffer-especially the uncertainty that prevents them from concluding the past and facing the future. However, there is much we can do by consciously and truly listening and trying to understand [5,6]. As volunteers, we may have some influence on the lives of others, but we may not be aware of all of the different types of influence that we have [7]. ...
Humanitarian work is enormously rewarding, but also challenging at the same time. Exploring one’s own motives and capabilities, and appropriate mental and physical preparedness for the impermanent nature of working in humanitarian settings can go a long way to mitigate many of the stressors associated with this type of work. This chapter guides humanitarian workers through some of the considerations and steps to effectively prepare for work in the field.
... UK health services were designed to cater for more homogeneous communities, with a few authors' labelling it as a 'White dominated NHS' (Sheikh et al. 2008). Reports of health inequalities, disparities in the quality of care and lower rates of satisfaction with healthcare provision among minority groups illustrated that the NHS was struggling to meet the needs of minority communities particularly where these differed from the majority and disregarding the other contributing factors which might be involved. ...
... In Great Britain, the National Health Service has historically found diffi culty in adapting to meet the health needs of minority populations. 42 Muslims with ostomies represent a high-risk group for poor coping after surgery and should be identifi ed and counseled incorporating the advice presented in this review. ...
Purpose:
To determine factors that influence health-related quality of life (HRQOL) after ostomy surgery in Muslim patients.
Methods:
A systematic literature review of published data was carried out using MeSH terms ("Muslim" OR "Islam") AND ("stoma" OR "ostomy" OR "colostomy" OR "ileostomy") AND "quality of life" AND "outcomes."
Results:
Twelve studies enrolling 913 subjects were deemed suitable for inclusion in the review. HRQOL was found to be particularly impaired in Muslims; this impairment went beyond that experienced by non-Muslim patients. Factors associated with this difference included psychological factors, social isolation, underreporting of complications, and sexual dysfunction leading to breakdown of marital relations as well as diminished religious practices.
Conclusion:
Muslims requiring ostomies should receive preoperative counseling by surgeons and ostomy nurses. These discussions should also include faith leaders and/or hospital chaplains. Ongoing support after surgery can be extended into the community and encompass family doctors and faith leaders. Additional research exploring HRQOL after surgery in Muslims living in Western societies is indicated.
... Among UK Muslim communities, religion is deeply embedded within social and cultural customs and is commonly used as a form of identity. 2 Health inequalities may be driven by religious factors, real or perceived, that impact healthseeking behaviors. Despite a disproportionately higher use of acute medical services, engagement with disease-preventive initiatives such as bowel cancer screening is strikingly poor among UK Muslims when compared with other religious groups who share common health beliefs. ...
Quality of life after the creation of a stoma can be influenced by religious factors. Enterostomal specialist nurses often offer holistic preoperative counseling to discuss religious concerns with Muslim patients, which requires a sound working knowledge of relevant Islamic practices. To assess colorectal surgeon and enterostomal specialist nurse awareness of Islamic practices that influence quality of life in Muslim patients with stomas, a questionnaire comprised of 16 multiplechoice questions was developed and face and content validity established. In addition to the knowledge questionnaire, participant demographic data, including practice setting and geographical location, years in practice, and personal religious affiliation, were included in the data collection instrument. The questionnaires were sent to all members of the World Council of Enterostomal Therapists (WCET) and the Association of Coloproctology of Great Britain and Ireland (ACPGBI) via association-directed emails. Data were collected over a 5-month period; 132 responses (90 enterostomal nurses and 42 surgeons) were received. Among the 90 WCET respondents, 29 (32%) were from the United Kingdom and Europe, 24 (27%) from the United States, and 10 (11%) from Australasia, and 10 (11%) from South East Asia. All 42 ACPGBI respondents were consultant colorectal surgeons from the UK and Ireland. Eight (8) out of 42 surgeons (20%) and 11 out of 85 nurses (11%) did not feel confident to discuss religious practices before surgery. Of the 127 respondents who answered the question, only four (<5%) correctly identified all Islamic prayer positions. Thirty-two (32, 52%) of the 62 enterostomal therapists and 27 (73%) of the 37 surgeons responding did not discuss fasting with Muslim stoma patients. More than one third of all respondents (48 out of 126) did not feel it was necessary to include religious leaders in the counseling process. Awareness of Islamic practices relevant to Muslim persons with ostomies may be suboptimal among colorectal specialists, which may negatively affect patient experiences after stoma surgery. Further research is required to assess the impact of faith-based counseling on postoperative quality of life in Muslim patients.
... A key point to emphasize in medical consultations is that this represents a valid opinion in Islamic Law. If this suggestion is widely accepted, local Islamic leaders could be encouraged to designate alternative periods for fasting, which may help in retaining some of the community spirit that collective fasting during Ramadan engenders [9,10]. ...
Nearly a quarter of the world's population is Muslim, with increasing numbers living in non-equatorial regions. Fasting in Ramadan is one of the five pillars of Islam, but the observance of this tenet is challenging for those living in temperate climates when Ramadan (the annual fasting month for Muslims) falls during the summer months, as will occur over the next decade. This can be especially problematic for people with diabetes, many of whom require treatment with insulin. Clinicians are divided in their views concerning the safety and management of these individuals during the long fasts at the height of summer. However, this need not be the case if clinicians and patients consider following a religious dispensation that has been underutilized in clinical decisions on the safety of fasting; namely, the provision to fast at times outside of the official Ramadan period. This alternative is encouraged when health will be significantly affected by fasting during the prescribed period. If this suggestion is widely accepted, local Islamic leaders could be encouraged to designate alternative periods for fasting, which may help in retaining some of the community spirit that collective fasting during Ramadan engenders.
In recent decades, western Europe has experienced an increase in immigration, especially from eastern European and Southern Mediterranean countries, not only for financial reasons, but also in the quest for better and free health care. Living in a foreign country mainly difficulties affect children, women and individuals with disabilities, resulting in reduced psychological and social well-being related also to the cultural and linguistic barriers. Effective communication plays a pivotal role in clinician - patient relationship, the knowledge of patient's needs and concerns is at the base of therapeutic alliance and it allows a shared plane care involving medical and psychosocial aspects. In some case it could be difficult for sanitary staff working with patients with different culture and language, to build a good relationship base on trust and comprehension. We investigated how different professional figures face this problem. The results show that a different cultural background is essential to help them to understand other life styles. The presence of trans-cultural mediators can help both to overcome the language barriers and to understand different cultural attitudes; the medical staff is more stressed by the transcultural work than other staff members. Lack of communication represents a stressor both for the health professionals and for the patients. Training programs on improving communication skills and on overcoming language barriers are needed in order to improve the approach to foreign patients and families.
Adolescents with ASD show interest in and desire for relationships, yet deficits in social and communication skills characteristic of ASD may impair their ability to seek and maintain relationships. Parents are often responsible for providing education related to sexuality and relationships, and many express the need for support in teaching their children about these topics. To address these needs, the present study enrolled eight adolescents with ASD and their parents in a six-session program designed to provide education on sexuality and relationships. Adolescent participants included six males and two females, all of whom were between the ages of 12 and 16 (M = 13.4, SD = 0.92).To assess the utility of the program, parents were asked to provide information on adolescent behavior, parent–child discussion of topics related to sexuality and relationships, and parent satisfaction with the program. Adolescents completed knowledge questionnaires. Following the program, parents expressed satisfaction with the experience. Parents further reported that they were discussing a greater number of topics with their adolescents.
Background: Germany has 16 million people with a migration background. Health care for these patients is part of routine work in family medicine. Nevertheless, there is hardly any research on these patients' experience in family medicine. Methods: Three focus groups with a total of 39 participants Turkish ethnic origin but with different social and migration-generative background were organized in German language. The discussions were audiotaped, transcribed and coded according to Mayring in a content-analytic way. This was done independently by the researchers in a first step; then a categorical system was developed in a consensus process. Intentionally we worked in a multicultural and multi-professional team. Results: Misunderstandings, prejudices and discrimination were often mentioned by the participants (P) as being based on their migration background. Unequal care was experienced by most P. Participants stressed that empathy was often missing in the doctor-patient-relationship - resulting in no trust in the relationship, anxieties, insecurity and doctor hopping. P wished to be seen and treated as individuals with equal rights. Relevant "culture-specific" problems were not mentioned - except when being seen as instrumentalized for discrimination. They wished competence in intercultural communication to be integrated in continuous medical education to reduce discrimination. Conclusions: Different from other countries intercultural communication and competence is not part of continuous medical education in Germany. Intercultural communication should focus on the variability of individuals and not on the construction of "rules" for the appropriate behaviour in contact with people from "different cultures".
This research investigated the systematicity of turn-taking organisation in naturally occurring GP consultations where either a professional or an ad hoc interpreter was involved to mediate language discordant doctor-patient talk-in-interaction. I found that participants systematically organise their turns to speak, following one of the nine types of turn-taking organisation identified in this study disregarding the patient’s native language and culture, the type of interpreter and their interpreting proficiency. The effect turn-taking organisation has on communication varies in different contexts. Teaching doctors about the cause and effect relation between turn-taking and communication outcomes may help them improve their clinical communication.
Background:
Although the collection of patient ethnicity data is a requirement of publicly funded healthcare providers in the UK, recording of ethnicity is sub-optimal for reasons that remain poorly understood.
Aims and objectives:
We sought to understand enablers and barriers to the collection and utilisation of ethnicity data within electronic health records, how these practices have developed and what benefit this information provides to different stakeholder groups.
Methods:
We undertook an in-depth, qualitative case study drawing on interviews and documents obtained from participants working as academics, managers and administrators within the UK.
Results:
Information regarding patient ethnicity was collected and coded as administrative patient data, and/or in narrative form within clinical records. We identified disparities in the classification of ethnicity, approaches to coding and levels of completeness due to differing local, regional and national policies and processes. Most participants could not identify any clinical value of ethnicity information and many did not know if and when data were shared between services or used to support quality of care and research.
Conclusions:
Findings highlighted substantial variations in data classification, and practical challenges in data collection and usage that undermine the integrity of data collected. Future work needs to focus on explaining the uses of these data to frontline clinicians, identifying resources that can support busy professionals to collect standardised data and then, once collected, maximising the utility of these data.
Immigrants’ use of the General Practitioner Scheme
Introduction:
The General Practitioner Scheme (GP Scheme), a Norwegian patient list system, was introduced in 2001. The GP Scheme aimed to improve the quality of services provided by the GPs by enabling legal residents of Norway to establish continuity in doctor-patient relationships and to ensure rational access and efficient referral and use for secondary health services. Growing diversity in the population could present challenges as the health care system is faced with patients with a variety of backgrounds, and who may have different expectations and needs.
For both immigrants and natives, access to health services and the ability to understand and use health information is vital. As the population grows more diverse, accessibility to the national health system needs to be monitored. In Norway the National Insurance Scheme, a universal, centralized, tax-funded health system, insures all long-term residents.
Aim:
The aim of the project is to examine the access for Norwegian immigrants to the General Practitioner Scheme.
Methods:
The project is a Mixed Method project that combines one quantitative study and two qualitative studies.

Interviews with local GPs and cultural mediators from major migrant populations provided data for the qualitative part of the project. Interviews focused on perceptions of migrants’ health literacy and obstacles they face in navigating the health-care system.
Quantitative data for the analysis came from the reimbursement registry for the years 2006 and 2007. That data were linked with data from the population registry and defined for both the largest migrant populations and the total population.
As explanatory factors, we tested the model for age, gender, length of residency, and country of birth.
Results:
Qualitative results indicate that GPs define migrants in terms of socio-cultural differences and reported that migrants often seem helpless, which they attributed to language difficulties and differences in expectations and a systematic failure to coordinate care (Goth, Berg & Akman, 2010). According to cultural mediators, integration in the GP Scheme varied with duration of residence, adequacy of patient- physician communication, country of origin, reason for migration, health literacy, received and perceived information, and language proficiency (Paper II; Goth 2010).
The quantitative results from the interfaced register database show diverse patterns of utilization of an emergency ward depending on the country of birth, the duration of residence, age, and gender. The utilization patterns seem to differ regardless if their birth countries are from nearby or remote countries (Paper III).

Discussion:
The findings indicate that there are large variations in usage patterns both between and within the different immigrants. Duration of residence has substantial influence on the probability of contacting an emergency ward (EW). Different minority populations have different average durations of residence likely to account for some of the differences found in EW use between populations. Many migrants have difficulty understanding or using the GP Scheme and fail to comprehend the information about it provided for them by national authorities (Goth, 2009).
Not all individuals are equally well informed about the organizational structure of the health sector. Immigrants who have recently arrived in Norway are likely to be least informed about how basic services are provided and which practice they are enrolled in. These factors might contribute to seeking help at the emergency ward. Adapting information about the healthcare system to migrants, and other challenged population segments, could address these problems.
Weaknesses of the quantitative part of the study include its reliance on country of birth for the criterion of ethnicity and the inability to account for residents of Oslo not utilizing health services during the years 2006 and 2007. Weakness of the qualitative part is the restrain from audio-visual recording devices during the interviews.
This study illuminates patterns in the use of GP versus emergency ward services by migrants, provides a deeper understanding of the factors affecting these patterns, and points to avenues of further investigation.
Sexuality education (SE) is hotly contested in the West and there is much abstinence-only education; however, it remains controversial in a variety of contexts, including in Iran. The lack of consensus about children's SE in Muslim societies obliges us to explore different aspects of this topic systematically. The qualitative research presented here was about how Iranian parents perceived children's sexuality. Data from parents of 26 children were collected during four focus group sessions. Informants were selected from Area 5 in West Tehran. This area included 72 primary schools for girls and 82 for boys. The sessions were facilitated by using a semi-structured focus group guide. Content analysis was adopted using combined free and analytical coding to reduce data, to extract meanings, and to categorize domains. One of the three main domains identified, family management of child sexuality, is comprised of the following: (1) understanding of child sexuality, (2) family rules, (3) parent-child interactions, and (4) opposite sex interactions. Parental misinformation, accumulated myths, and ignorance about children's sexual development were evident. Strict family rules and a lack of consistent policy and instruction for SE were also identified. Parents said they were neither well-prepared nor competent to educate their children about sexuality. In fact, a majority of mothers raised "incompetence" as an important determinant in their own parent-child interactions. Societal changes as well as children's socialization patterns have forced parents to accept their children's opposite sex friendships as a reality. Results suggest a community need for developing comprehensive and culturally sensitive SE for schools and parental use.
There is now a considerable body of evidence revealing that a number of ethnic minority groups in the UK and other economically developed countries experience disproportionate levels of morbidity and mortality compared with the majority white European-origin population. Across these countries, health-promoting approaches are increasingly viewed as the long-term strategies most likely to prove clinically effective and cost-effective for preventing disease and improving health outcomes in those with established disease.
To identify, appraise and interpret research on the approaches employed to maximise the cross-cultural appropriateness and effectiveness of health promotion interventions for smoking cessation, increasing physical activity and improving healthy eating for African-, Chinese- and South Asian-origin populations.
Two national conferences; seven databases of UK guidelines and international systematic reviews of health promotion interventions aimed at the general population, including the Clinical Evidence, National Institute for Health and Clinical Excellence and Scottish Intercollegiate Guidelines Network databases (1950-2009); 11 databases of research on adapted health promotion interventions for ethnic minority populations, including BIOSIS, EMBASE and MEDLINE (1950-2009); and in-depth qualitative interviews with a purposive sample of researchers and health promoters.
Theoretically based, mixed-methods, phased programme of research that involved user engagement, systematic reviews and qualitative interviews, which were integrated through a realist synthesis. Following a launch conference, two reviewers independently identified and extracted data from guidelines and systematic reviews on the effectiveness of interventions for the general population and any guidance offered in relation to how to interpret this evidence for ethnic minority populations. Data were thematically analysed. Reviewers then independently identified and critically appraised studies of adapted interventions and summarised data to assess feasibility, acceptability, equity, clinical effectiveness and cost-effectiveness. Interviews were transcribed, coded and thematically analysed. The quantitative and qualitative data were then synthesised using a realist framework to understand better how adapted interventions work and to assess implementation considerations and prioritise future research. Our preliminary findings were refined through discussion and debate at an end-of-study national user engagement conference.
Initial user engagement emphasised the importance of extending this work beyond individual-centred behavioural interventions to also include examination of community- and ecological-level interventions; however, individual-centred behavioural approaches dominated the 15 relevant guidelines and 111 systematic reviews we identified. The most consistent evidence of effectiveness was for pharmacological interventions for smoking cessation. This body of work, however, provided scant evidence on the effectiveness of these interventions for ethnic minority groups. We identified 173 reports of adapted health promotion interventions, the majority of which focused on US-based African Americans. This body of evidence was used to develop a 46-item Typology of Adaptation and a Programme Theory of Adapted Health Promotion Interventions. Only nine empirical studies directly compared the effectiveness of culturally adapted interventions with standard health promotion interventions, these failing to yield any consistent evidence; no studies reported on cost-effectiveness. The 26 qualitative interviews highlighted the need to extend thinking on ethnicity from conventional dimensions to more contextual considerations. The realist synthesis enabled the production of a decision-making tool (RESET) to support future research.
The lack of robust evidence of effectiveness for physical activity and healthy-eating interventions in the general population identified at the outset limited the comparative synthesis work we could undertake in the latter phases. Furthermore, the majority of studies undertaking an adapted intervention were conducted within African American populations; this raises important questions about the generalisability of findings to, for example, a UK context and other ethnic minority groups. Lastly, given our focus on three health areas and three populations, we have inevitably excluded many studies of adapted interventions for other health topics and other ethnic minority populations.
There is currently a lack of evidence on how best to deliver smoking cessation, physical activity and healthy eating-related health promotion interventions to ethnic minority populations. Although culturally adapting interventions can increase salience, acceptability and uptake, there is as yet insufficient evidence on the clinical effectiveness or cost-effectiveness of these adapted approaches. More head-to-head comparisons of adapted compared with standard interventions are warranted. The Typology of Adaptation, Programme Theory of Adapted Health Promotion Interventions and RESET tool should help researchers to develop more considered approaches to adapting interventions than has hitherto been the case.
The National Institute for Health Research Health Technology Assessment programme.
A great deal of immigrants of very sick children treated in our country are unable to elaborate an effective coping strategy and a methodology of resilience. Their culture and communication difficulties do not allow them to build a strong self help system. Herein, we report five stories of mothers and children who were cared for in our Children's Hospital. Anger; this is quite a common emotion among many immigrant parents of sick children with high risk diseases who have been treated in our hospital for long periods of time. They live together in community housing with families from other countries, and of different religions and habits. Anger affects their personal and social well-being. Self-blame is a common expression of their condition, and they are unable to make helpful self sacrifices. They feel anger as a result of what has happened to them, and they do not have the abilities they need to activate a good defence mechanism. Resilience is completely unknown to them. In most cases, their relatives do not intend to help them. These mothers are far from their families and habits, they are alone with their child, they suffer but their relatives push them to go back home and to renounce to the hope of cure given by the physicians. They experience a loss in their self-monitoring ability to build a coping strategy and resilience. In these cases their display of anger is often exaggerated. The anger of the immigrants is an additional problem for physicians and other caregivers working in hospitals which treat immigrant children.
As death has become less common in our daily lives, it has become harder to consider our own mortality or that of those close to us. Lack of openness about death has negative consequences for the quality of care provided to the dying and bereaved. Eradicating ignorance about what can be achieved with modern palliative care and encouraging dialogue about end of life care issues are important means of changing attitudes. Awareness of our own mortality is a human characteristic. Arguably, life would have little meaning without our knowledge and experience of inevitable loss, death, and bereavement. But while in some ways our society is obsessed with death—with reports of violent, sudden, and unexpected death paraded across our media every day—it is still very difficult to talk about this one shared certainty in terms that relate to our own deaths or those of people close to us. Across the past century there has been a movement away from using the “sacred canopy” of religion1 to make sense of death and to embrace its presence in life. Instead, the defence of health, youth, and vigour against the enemy of death has become a “lifelong labour”2 for many. On the rare occasions when death and dying are discussed, the language used is most often rooted in the discourse of individualism and control of personal destiny. This perspective does not fit well with the needs and daily experiences of people approaching the end of life, such as those in advanced old age, who may find they wish or need to entrust their care to others. Nor does it reflect the finely balanced dilemmas patients, families, and clinicians face in dealing with the physical, ethical, emotional, and existential problems of serious illness. The increasingly rare designation of any illness as terminal complicates matters and perhaps explains why complaints about lack of preparation and communication surrounding death are common among the bereaved.3Consequences of not talking about and planning for deathStrategic plans for end of life care in England4 and Scotland5 argue that a lack of public openness about death may have negative consequences for quality of care at the end of life, including fear of the process of dying, lack of knowledge about how to request and access services, lack of openness between close family members, and isolation of the bereaved. A new national coalition6 with the same name as this article aims to raise public awareness and change behaviour associated with death, dying, and bereavement as one means of addressing these consequences. The work of the coalition is based in part on a comprehensive review of published research evidence,7 together with new market research about the concerns, needs, and beliefs of the general public about these issues and ways to raise public awareness.Evidence about public attitudesThe review shows a preponderance of research about views on euthanasia and physician assisted suicide, often funded by “right to die” movements, but also featuring in large scale public opinion polls.8 9 These findings suggest public support for euthanasia has hovered between 60% and 80% since the mid 1970s on both sides of the Atlantic, with similar levels of support emerging for physician assisted suicide. A report of the 2005 British Social Attitude Survey10 shows that people make clear distinctions between the acceptability of assisted dying in different circumstances; 80% of respondents agreed that the law should allow voluntary euthanasia to be carried out by a doctor for someone with a painful, incurable, and terminal condition, but less than 50% agreed for cases where the illness is painful, but not terminal. Very few respondents supported family assisted suicide.9 In the United States, differences in response rates of more than 30% have been reported11 dependent on how questions are framed. Such nuances are not visible in surveys that present respondents with limited options for responses (such as yes or no) to short hypothetical scenarios.The simple and high visibility messages of support for assisted dying could obscure the very considerable, but perhaps less sexy, findings about attitudes to other issues. Results of cross sectional surveys indicate that dying at “home” is a strong preference (whether this is the person’s home, a retirement complex, or care home), although hedged by worries about burden on care givers12 and by fears of dying alone.13 At the same time, most people are worried about how they would cope practically with caring for a close relative who was dying at home.14 A majority of people seem to welcome clinicians who are willing to start discussions in advance about place of care or medical treatment at the end of life.15 Interesting and persistent differences according to sociodemographic characteristics are found in survey data from many different countries. For example, some studies show that older people are less likely than younger ones to favour death at home, while women are more likely than men to prioritise quality over length of life.15 Other findings suggest that ethnic minority groups in Western countries tend to be less supportive of withdrawing or withholding life prolonging medical treatment at the end of life.16 These findings point to the effect of structural inequalities on experiences that shape attitudes.Perhaps unsurprisingly, fairly uniform opinions are found about the elements comprising quality of care at the end of life, with relief from pain and other symptoms at the forefront, reflecting widespread concerns about the process of dying.17 A 2006 survey of the UK public suggested that a minority of people (34%) have talked to their friends or families about these issues or made any type of advance statement to inform their own end of life care.18 A survey of a representative sample of the general public in England, Wales, and Scotland19 commissioned by the National Coalition, repeated some aspects of the 2006 survey and had very similar findings. Although they were not talking about end of life care issues themselves, a substantial majority of respondents (88%) would favour the open disclosure by a clinician of a terminal prognosis. The most prevalent reason given by all respondents for not discussing issues, including a fifth of people aged over 75, was that “death seems a long way off.” Qualitative research provides at least partial explanations of the trends seen in the quantitative research. For example, an interview study20 among older adults in the UK reports how older men and women tend to conform to gender stereotypes when discussing the issue of caregiver burden in end of life care. Older women are more likely to be concerned about burdening others during a final illness, while men express more self oriented views, including the desire to live longer. Qualitative research shows that attitudes about death develop against a backdrop of varied cultural and historical influences, are deeply affected by biographical and experiential influences, and are likely to change with time and across age groups.21Ways of raising awareness and public involvementEvidence from social marketing shows that “bottom up” approaches focusing on value to the user may provide a framework for designing programmes to raise public awareness of issues related to death and change behaviours.22 Another approach is to mobilise community involvement in end of life care projects as a matter of public health.23 In the United States, the Project on Death in America, a large scale programme to change the culture and character of dying, was funded by George Soros and located in the Open Society Institute between 1994 and 2003.24 It supported not only a conventional research and practice development programme but also arts projects to identify and convey meaning in facing illness, disability, and death, and community initiatives about bereavement and grief. Many of these involved thousands of people and have reportedly had a substantial lasting value although the effect is difficult to measure. From the outset of the project, raising public awareness was regarded as just as vital as the policy and practice developments needed to address seemingly intractable problems in the care of the dying in the United States.Challenges for the futureFor many of the 56 million people who die each year worldwide, death is associated with substantial but preventable suffering. When death is managed badly it leaves a scar that runs deep in our collective psyche and reinforces the tendency to turn away from any reminder of death. Shifting attitudinal barriers to the provision of excellent end of life care means eradicating ignorance among clinicians, patients, and the public about what can be achieved with modern palliative care and with careful proactive planning. Raising public knowledge of issues surrounding death, dying, and bereavement risks raising expectations we cannot yet meet or sending an unrealistic message that death can always be managed well. But such activity is a vital part of generating a sense of wider responsibility for the dying and promoting social justice for all those living towards the end of their life.NotesCite this as: BMJ 2010;341:c4860Footnotesdoi:10.1136/bmj.c4863doi:10.1136/bmj.c4862doi:10.1136/bmj.c4861doi:10.1136/bmj.c4859Part of the costs of producing the BMJ supplement in which this article appeared were met by the British Heart Foundation. The article was commissioned and peer reviewed according to the BMJ’s usual process.Contributors and sources: JS wrote the first draft of this paper, drawing on preliminary findings from a review of research on public attitudes to death, dying, and bereavement commissioned by the National Council for Palliative Care and the National End of Life Care Programme and a survey of UK public attitudes commissioned by the National Coalition Dying Matters: Let’s Talk About It, to which all three authors belong. JF and ER provided comments on the first and subsequent drafts of this paper. All three authors agreed the final version. JS is guarantor.Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: JS had support from the National Council for Palliative Care and the National End of Life Care Programme for the submitted work; JF is a consultant to the Dying Matters coalition; no other relationships or activities that could appear to have influenced the submitted work.References↵Berger PL. The social reality of religion. Penguin, 1973.↵Bauman Z. Mortality, immortality and other life strategies. Polity Press, 1992.↵Health Care Commission. Spotlight on complaints. A report on second stage complaints to the NHS in England. Health Care Commission, 2009. www.cqc.org.uk/_db/_documents/Spotlight_on_Complaints_09_200903190539.pdf .↵Department of Health. End of life care strategy. Promoting high quality for all adults at the end of life. 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Legido-Quigley and McKee raise some of the thornier issues faced by healthcare authorities dealing with patients seeking medical care outside their own country.1 As with countless other tertiary hospitals throughout Europe, our centre, the largest public paediatric facility in Italy, has had to come to grips with this new …
Women's same-sex attraction is rarely raised within general practice consultations, despite a common desire for its inclusion. Same-sex attracted women are significantly more likely than heterosexual women to suffer a range of health inequalities, making disclosure of sexual orientation often clinically relevant. This research explored the influences on disclosure from the perspectives of GPs and their regular same-sex attracted female patients. We conducted in-depth semi-structured interviews between mid 2005 and late 2006 with 33 same-sex attracted Australian women, 27 GPs and 1 psychiatrist, including 24 patient-GP pairs. Analysis revealed three disclosure patterns by same-sex attracted women with their preferred GPs, which we labelled open (telling), passive (waiting to be asked) and private (not telling). The three main influences on disclosure patterns were women's sexual identity experience, the risk of disclosure perceived by women and GPs, and the quality of the patient-doctor relationship. We developed the Identity Disclosure model to explain the interactions between these three influences. The more important a woman's sexual identity, the more likely she was to prefer an open disclosure approach, while a lower level of identity importance led to a passive or private approach. Risk and relationship then counterbalanced the disclosure decision. A high level of perceived risk for women or GPs would reduce women's openness, or GPs' willingness to facilitate disclosure. Reciprocal knowing within the relationship would attenuate risk and increase openness. Reciprocity had the capacity to increase GPs' shared responsibility for disclosure, which was desired by many women. We suggest that the Identity Disclosure model will facilitate GPs' understanding of the complex influences on disclosure, and ultimately transform their consultations with same-sex attracted women beyond the habitual silence to a new level of sensitivity.
Prognostic paralysis may delay a change in gear for too long. Being alert to the possibility that a patient might benefit from supportive and palliative care is central to delivering better end of life care.
Despite the decline of formal religion many people still regard the idea of spirituality as essential to their sense of self, especially at times of inner turbulence. We explore how the spiritual needs of dying patients can be understood and met in pluralist and secular societies.
Australia is a culturally and ethnically diverse country. Within such diversity there will be differing beliefs systems about death and dying. This may be a challenging prospect for health professionals.
This article discusses how cultural diversity may impact care and provides some strategies for the general practitioner when considering the provision of end of life care.
This article does not attempt to provide GPs with a prescriptive approach to multicultural care, as this would run the risk of stereotyping individuals. Rather, it discusses the barriers to end of life care among different cultural and ethnic groups, and suggests ways in which to improve understanding of different cultural needs in end of life care.
Greater tailoring of services to local populations and personalisation of care are needed
• This report was commissioned by the Department of Health following a number of earlier reviews of issues relating to ethnicity and health carried out jointly by the University of Warwick and De Montfort University (Johnson et al 1999, Szczepura et al 1999, Atkinson et al 2001). • The study complements the work programme developed by the Centre for Evidence in Ethnicity Health & Diversity (CEEHD), funded by the ESRC at the two universities, and builds upon earlier work undertaken for the Department of Health and NHS Executive, to extend knowledge of the relevance of linguistic diversity in the context of the NHS. • The aim of the present study was to identify and review the available research evidence on 'ethnicity and communication' in areas relevant to ensuring effective provision of mainstream services (e.g. via interpreter, advocacy and translation services); provision of services targeted on communication (e.g. speech and language therapy, counselling, psychotherapy); consensual/ participatory activities (e.g. consent to interventions), and; procedures for managing and planning for linguistic diversity. • Since April 2001, following the implementation of the Race Relations Amendment Act 2000, there has been a statutory duty laid upon all UK health service agencies to ‘have due regard to the need to eliminate unlawful discrimination’, and to make explicit consideration of the implications for racial equality of every action or policy. This literature overview should therefore be viewed in the light of this major new requirement. • The literature indicates strong linkages between population diversity (in particular ethnic diversity) and variations in service uptake, outcomes and involvement in decision-making, much of this mediated by issues of ‘communication’. • Defining ‘ethnicity’ and ‘ethnic groups’ is not a simple matter. In essence, the concept of ‘ethnicity’ recognises that people identify themselves with a social grouping on cultural grounds including not only language, but also lifestyle, religion, food and origins (see Annex 1). Furthermore, in a world of migration and mixing, it is essential to recognise that these cultures and societies are dynamic rather than fixed. • The total UK black and minority ethnic (BME) population is relatively large and rising. In the 2001 Census it was 4.6 million, or 7.9%, having risen from a figure of 5.5% in 1991 and 4.2% in 1981. In England, the proportion of minority ethnic origin rises to 9.1%, of whom just over half (4.6% of the population) are of south Asian origins while people of Caribbean and African origin make up 2.3% of the English population. The minority ethnic population has a more youthful age structure than the white population, so population growth will remain rapid over the coming years. • The black and minority ethnic population is not evenly distributed but is largely concentrated in Greater London, West Midlands Metropolitan County, West Yorkshire, and Greater Manchester. Relatively few live in rural areas. Some specific ethnic groups are even more localised. • Recent estimates suggest over three hundred languages are used as ‘mother tongues’ in London. Speaking a language does not necessarily imply literacy. • The majority of studies on the language capability and literacy of minority ethnic groups in the UK have explored the ‘preferred’ or ‘home’ language of South Asian populations. Estimates of language capacity and literacy are available from different sources for both adults and children for different population groups (see Annex 2). For the three main resident South Asian ethnic groups (Indian, Pakistani, Bangladeshi), ability to speak English declines with increasing age, is lesser for women than men, and is much less for those born outside the UK. At the same time, those who have acquired English as a second language do get older, and often lose this ‘learned’ ability. • Many asylum seekers and refugees will have poor levels of literacy in the English language, but no information on their language needs is available. Seasonal or migrant workers form another group of increasing significance, but it is difficult to gather information on these groups. • Thus, the NHS faces a constantly changing picture of language needs with the migration of new groups, including refugees, combined with the language learning process undergone by settlers. • Several approaches have been identified within the NHS for overcoming language barriers where verbal communication is required as part of the delivery of services (see Annex 3). Apart from the provision of interpreter or advocacy services for situations in which verbal communication is required, translation of written or taped (including video) material may also be required. • This review has revealed a considerable and expanding literature in the field of ethnicity and health and issues directly, or indirectly, related to communication. Our searches produced over 3,000 potential papers for review. • Extensive evidence is emerging from countries and regions that experience population diversity (including the USA, Australia, Canada and the United Kingdom) on the requirement for cultural competence as well as linguistic competence in health care organisations (see Annex 2). • As part of the review process we have examined all this literature and identified key findings for the UK under the following 7 specific headings which can be related to practice areas and policy directions. 1. Meeting language needs (interpreter/ advocacy services): Despite substantial evidence in favour of providing proper language support, and demonstration of adverse effects linked to its absence, there is a lack of consistent, universal provision or adequate resourcing of such services in the UK. Indeed, there is little research into cost-effectiveness internationally, or into the direct clinical implications of introducing adequate services. Training is needed, for both users and providers of health care services, in overcoming language barriers. Similar problems are faced in all societies, and do not appear to be time-limited. The growth of globalisation may lead to increasing need, but offers possibilities (e.g. by international telephone linkages) of international solutions. More needs assessment may be required, but should be tied to guaranteed resourcing and evaluation, and adequate time and resources allocated to ensure that initiatives are fully worked through. 2. Health promotion materials: In health promotion there are various ‘models that work’ and an array of approaches and procedures for successful health promotion at the very local level. The issue for centralised programmes and policies of health promotion planning is to begin to encourage multiplicities of approach as the rule, rather than the exception to a 'one-size-fits-all' model of health information promotion. 3. 'Tele-consultation' services (e.g. NHS Direct, telemedicine, etc): The use of existing media, new media and an expanding arsenal of technological advancements for the dissemination of health information is in its infancy. More study is needed to ascertain the effectiveness of these technologies, particularly at the interface of information provision and minority ethnic groups. A single technological approach may prove ineffective, particularly in reaching diverse groups with varying language skills and competencies and/or differing cultural expectations of health information and service provision. 4. Procedures for managing and planning for linguistic diversity: The provision of language and cultural support services is still in a developmental phase, but the current situation has been arrived at in an ad hoc fashion. Internationally, many ways of managing services have been tried, but there is a lack of systematic evaluation to explore how such services might relate to the stakeholders and structures existing in the UK. A degree of consensus exists around the importance of working with communities locally, integrating cultural awareness and training for staff, and understanding the roles and abilities of different levels of language intermediary. Needs analysis is also seen as an essential element, but similarly, guidance on accepted best practice has yet to emerge. It seems likely that local solutions have been developed in the UK, but are not formally reported or evaluated. 5. Provision of services which diagnose and treat speech/language conditions: Bilingual children and older people need to be assessed and treated in their mother tongue by therapists who are both bilingual and culturally sensitive. Training should develop therapists’ cultural competencies and sensitivities in order to understand that language and communication disorders are culturally constructed within the often stressful environment of an adopted culture. 6. Provision of 'talking' therapies (i.e. counselling, psychotherapy): Empowerment is central to the expressed needs of carers and service users through their demands for information about available services, repeated over and over again in the literature. Individualised service provision that is sensitive to and expressive of cultural needs is highly valued by mental healthcare consumers and their families. Theoretical models need to be explored that will incorporate the multiplicity and diversity of service users, their beliefs and family values. Although interpretation and translation are important services, they do not represent an overall strategy for a proactive mental health system. 7. Other aspects of ethnicity and communication: For processes which require consent or participation of the patient effective communication is essential. A 'case study' issue was explored, by focusing on issues relating to organ and/or human tissue donation and transplantation, as illustrating the core issues of informed consent and providing evidence of effective interventions. Language differences and literacy or access to differing media are not the only considerations in this area; instead awareness of cultural issues other than language has particular significance in effective communication. We were unable to locate literature on informed consent in the context of research participation, and service planning consultation where the effectiveness of different approaches was discussed - other than papers stating that it had been an issue of concern, or that non-English speakers were excluded because of such concerns. • At the end of the review process, we were able to identify a number of underlying issues that underpin the literature in all the above areas, and to make a number of recommendations in order to improve linguistic and cultural competence in the NHS. • Overview: Communication requires attention to context, and the needs of the person seeking to transmit information, as well as the characteristics (language, literacy, culture) of the intended recipient. The messenger may be as importance as the message, and some health care workers may not feel comfortable in that role, with particular 'audiences'. Messages must be specifically tailored to their audience, taking religious and other beliefs and practices into account. Information from official sources may be of less impact unless fortified by personal experience and information from intra-community networks which establish a higher level of salience or 'emotional connectedness' with the issues being communicated. UK research and development is so far largely confined to descriptive, clinical, and exploratory work and does not yet include significant evaluation of interventions.
An audit loop for patients failing to attend a paediatric outpatient department was completed by repeating the analysis three years after interventions were put into place. The 1995 study had shown non-attendance for clinic visits was 34%, varying from 32.5% for Europeans and 50% for Asian patients. A follow up study in 1998 showed a fall to 12.04% and 13.5%, respectively, with an overall rate of 12.3%. The Manor Hospital NHS Trust had the lowest non-attendance rate of the 30 hospitals in the West Midlands region for the year 1996-7.
Increasing evidence shows that different ethnic groups respond differently to educational, psychosocial, and pharmacological interventions. If diverse communities are to benefit from the implementation of appropriately derived evidence then it is imperative that the ethnic diversity of populations under study are reflected in clinical trials. In the United States, since 1993, the National Institutes of Health have instituted policy insisting that minority groups are represented in study samples unless there is a compelling reason not to do so.1 However, no comparable legislation exists in Europe. We sought to compare reporting of ethnicity in published reports of US and European randomised controlled studies.
We searched Medline for reports of trials published in 2002 using the Cochrane optimal search strategy.2 We downloaded titles and abstracts of study reports into the reference manager database and randomly …