Abstract
Objective:
Clinical management of bipolar disorder patients might be affected by culture and is further dependent on the context of healthcare delivery. There is a need to understand how healthcare best can be delivered in various systems and cultures. The objective of this qualitative study was to gain knowledge about culture-specific values, beliefs and practices in the medical care provided to patients with bipolar disorders from a provider perspective in various areas of the world.
Sampling and methods:
The International Society for Bipolar Disorders (ISBD) network provided the framework for this qualitative study. An electronic interview with open-ended questions was administered to 19 international experts on bipolar spectrum disorder representing the International Society for Bipolar Disorders chapter network in 16 countries and six continents. In addition, there were two in-depth interviews with bipolar spectrum disorder experts done prior to the survey. The data were analysed using content analysis, and the information was structured using the software NVivo by QSR International Pty Ltd.
Findings:
All participants described sociocultural factors as important in healthcare delivery to bipolar patients in their part of the world, both in accessing healthcare and in providing culturally appropriate care. Factors that affected the provider’s ability to supply good clinical management of patients were access to treatment options and long-term follow-up, as well as general strategies to combat stigma. In some societies, the patients’ use of alternative treatments, gender issues and religion were also important factors. Understanding the impact of such culturally specific factors was overall regarded as essential for proper treatment interventions.
Conclusion:
Sociocultural factors clearly affect the nature and quality of medical services delivered to bipolar patients. Financial, social and cultural factors affect patients’ health-seeking behaviour, and this highlights the need for knowledge about such factors in order to adequately identify and treat bipolar patients globally. Culturally adapted training and psychoeducation programmes are particularly warranted.
Keywords
Introduction
Bipolar spectrum disorders (BDs) are severe mental health disorders, present in all populations around the world with a prevalence around 1% for bipolar I disorder, and 2–5% for the full spectrum of disorders, including bipolar I, bipolar II, cyclothymic disorder and other specified bipolar and related disorders (Merikangas et al., 2011; Van Meter et al., 2011). BDs are characterized by mood swings fluctuating between mood elevation and depression and are associated with a high degree of morbidity and disability (Merikangas et al., 2011). According to a recent World Health Organization (WHO) global burden of disease study, bipolar disorders rank within the top 20 causes of disability among all medical conditions worldwide in both high-income and developing countries and rank sixth among the mental disorders (Vos et al., 2012). A registry-based study from England found that life expectancy of patients with bipolar disorder was reduced by more than 10 years (Chang et al., 2011), when compared to the national average.
There is remarkable cultural diversity in how emotional reactions, thought and behaviours are expressed and experienced around the world (Church et al., 1998; Kitayama et al., 1995; Russell, 1991). Cultural diversity might affect how people perceive, experience and report psychiatric symptoms of BD (Douki et al., 2012; Meeuwesen et al., 2009). In this article, we have defined culture as learned patterns of thought and behaviour within human societies, including observable behaviours, practices and social organization, and also ideological components of beliefs and values (Brown et al., 1998).
Ethnocultural aspects also influence the clinical presentation, diagnosis and treatment of BD, and transcultural variations are inadequately reflected within the current psychiatric diagnostic systems (Sanches and Jorge, 2004). As most publications on BD originate from high-income countries, mostly Europe and the United States, there is a shortage of data from other areas of the world. It is not clear to what extent BD research findings have external validity to culturally diverse and under researched areas (Kronfol et al., 2015). Thus, there is a need to be aware of culture-bound features of BD for mental healthcare workers meeting patients from increasingly culturally diverse backgrounds. This need has been highlighted in the WHO Mental Health GAP Action Program Guideline Update 2015 that involves advice about cultural awareness and contextualization to enhance the independent living skills and economic inclusion of people with psychosis including patients with bipolar disorder (www.who.int/mental_health/mhgap/en/).
The International Society for Bipolar Disorders (ISBD) shares these concerns about access to treatment and the international importance of generating new knowledge on the transcultural aspects of BD. This led to the establishment of an ISBD transcultural task force responsible for this research project. The aim of the study was to better understand how culture-specific values, beliefs, and practices may represent different challenges to the management of bipolar disorder from a provider perspective. The ISBD provided a global framework for identifying clinicians with expertise in working with BD that could provide information on culture-specific challenges.
Material and methods
ISBD
This study is a qualitative study that takes advantage of the existing ISBD chapter structure to assess culture-specific challenges from a management perspective. The ISBD is a non-profit organization aiming to increase the quality of treatment for bipolar patients globally and to reduce stigma and social burden caused by the disorder. It has more than 800 members, with local chapters representing different countries and regions throughout the world. The ISBD encouraged its chapter chairs and members to participate as informants, in order to address this topic from a provider perspective.
The study protocol
The study protocol includes data collection from three different sources. Two interviews lasting for 1–1.5 hours were done face-to-face by the first author C.H.O. The informants were otherwise scattered all over the world, so getting a face-to-face interview with all of them was too difficult to get done practically. A questionnaire with open-ended questions about sociocultural aspects in the clinical management of bipolar disorder was developed in collaboration with the ISBD transcultural task force members. The questionnaire was first discussed at the ISBD meeting in Istanbul in 2012, based on feedback from the task force members, a poster with the preliminary questionnaire was developed, presented and discussed at the ISBD meeting in Miami in 2013 (Oedegaard et al., 2013). The input was discussed back and forth between the co-authors until the final survey was developed and distributed to the informants as a Web-questionnaire. The questionnaire was in English, designed for informants used to the English language in a professional setting. Third, the American version of the book
SurveyMonkey/The Web-Based questionnaire
The Web-based questionnaire used the SurveyMonkey platform (SurveyMonkey, 1999–2015). All the informants were also given the option to be interviewed using Skype, but this was not chosen by anyone. The questionnaire comprised 14 open-ended questions including information about the informants’ socio-demographic background, clinical experience with bipolar disorder, the organization of the local healthcare system and questions on sociocultural aspects of the treatment for BD. The latter questions explored access to care and principal treatment methods for bipolar disorder, stigma, gender, age, ethnicity and religion.
Participants were identified by the ISBD organization, either by being the chair of a local chapter or by having participated at the ISBD transcultural task force meetings. Totally, 42 informants were identified as potential respondents and received a personal invitation to participate in the survey by e-mail in October 2013. In order to be able to respond to the questionnaire, the informant had to activate the personal SurveyMonkey link attached to the e-mail invitation. Reading the e-mail and activating the link was considered as informed consent. A total of three reminders were sent to the participants.
Participant characteristics
The sample was a convenience sample of 19 experts, where 17 participated through the electronic questionnaire only. The participants represented many parts of the world and were grouped into the following regions: Europe (Italy, Austria, Netherlands, Norway), Middle East (Israel, Turkey, Saudi Arabia), Asia (Pakistan, Bangladesh), Oceania (Australia × two), North America (United States × two), Latin America (Peru, Columbia, Argentina, Mexico × two) and Africa (Uganda).
Almost all participants were psychiatrists (17), one was a psychologist and one was a consultant with another background. Half of the informants (9) were between 30 and 50 years, and the other half (10) were between 50 and 70 years old. Five respondents were women. All, but one participant had extensive experience with clinical treatment of bipolar patients ranging from 7 to more than 30 years. Many had practised both in the private and public healthcare systems, and more than half had also been actively involved in research.
Data analyses
Qualitative methods are based on the theories of interpretation (hermeneutics) and human experience (phenomenology) (Dahlgren et al., 2007). We used qualitative content analyses in this study (Graneheim and Lundman, 2004), in order to analyse the transcribed interviews, Web-based interviews and literature text. This methodology is tangential to quantitative methodology in its focus to analyse the manifest content (Crowe et al., 2015), i.e. the visible, obvious components of the material, and in the limited depth and level of abstraction, mainly using a questionnaire without the possibility of probing. The unit of analyses was the whole interviews (both transcribed and Web-based) and the book text. Meaning units were sentences or paragraphs containing aspects related to each other through their content, and condensed meaning units were labelled with a code. Categories were created from groups of content with shared commonality, and by linking underlying meanings together, themes were created. Some categories were partly intertwined and therefore some themes were subdivided. The program NVivo was used to ‘automate’ some manual tasks, like classifying and organizing the information into meaning units. The data coding was performed in a stepwise procedure. First, the topics raised during the interviews and in the survey were sorted using preliminary coding or open coding. In NVivo, this is done by sorting the text into ‘nodes’. Following this coding, all data given to the same node were listed. A node could, for instance, be a geographical place, a name or a topic from the questions in the survey or interviews. Charts and tables were used to visualize findings in the analytic process. This generated the themes of what was considered to be the participants’ most significant considerations regarding cultural aspects related to bipolar disorder, and the reporting of findings are structured accordingly. The analyst was a female Norwegian master of ethnology (C.H.O.) not from a healthcare background but with interest in transcultural psychiatry through training in qualitative methodology at the centre of international health at the University of Bergen. All respondents were made aware of the scientist’s background. The raw data were co-read by co-author (I.E.). The Consolidated criteria for Reporting Qualitative research (COREQ) checklist for this study is attached as a supplement material (Appendix A).
Trustworthiness – credibility, dependability and transferability
When making a decision about the focus of the study, selection of context, participants and approach to gathering data, we have aimed to shed light on the importance of transcultural aspects in BD by including interviewees, with various genders and age, from as many parts of the world as possible, including all continents and both high-income and low-income countries. In order to collect the amount of data necessary to answer the research question, we chose to use a Web-based survey, although this reduces the complexity of the data. We have tried to facilitate assessing credibility of the findings by showing the similarities and differences between categories and themes in numerous representative quotations. The dependability of the study is strengthened by the relative short time period and uniform procedure of data collection, with low risk of design-induced changes over time. We have tried to ensure good transferability of the study by clearly describing the selection of participants and context of the study and by including a rich presentation of the findings with appropriate quotations.
Ethical considerations
The study protocol was submitted to the Regional Ethical Committee in Western Norway (site of the Principal Investigator). As the study does not include material from patients, the study was assessed as not needing approval of the Regional Ethical committee. The study was approved by the Norwegian Data Inspectorate regarding data storage and protection in 2012.
Findings
The culture-specific values that were identified through the themes below were interconnected with the actual circumstances, sites and opportunities given through the health system and its financial organization (section ‘Culture in Relation to Health Systems, Treatment Practices and Training of Clinicians’). Themes related to cultural diversity were seen with respect to stigma, gender and religion, which will be presented separately, however – there interrelatedness will be specified (section ‘Stigma in Bipolar Disorder’, ‘Gender and Culture in Relation to Bipolar Disorder’ and ‘Importance of Religions in Relation to Bipolar Disorder Cross-Culturally’).
Culture in relation to health systems, treatment practices and training of clinicians
Access issues were highlighted as important globally. Limited access to the healthcare systems took various shapes epitomized by a lack of infrastructure, lack of staff and competence and lack of treatment alternatives.
In multiple areas, access was restricted by general limitations in health services – and particularly for psychiatric services. Staff shortages and financial pressures were mentioned as particularly severe. This mostly affected those with low socio-economic status and low literacy. This was universally seen across high- and low-income countries: ‘
The informant from Africa described the lack of infrastructure, but also lack of competence among the staff as a consequence of the task-shift policy, where only the national psychiatric hospitals have psychiatrists and the regional psychiatric hospitals have less-trained cadres: ‘
Even in countries where access to mental healthcare was generally good, respondents still described important treatment insufficiencies for bipolar patients, usually related to financial constraints and insufficient insurance. This was noted in northern America:
The same issues with insufficient insurance and lack of public services were also seen in Latin America: ‘
The health insurance was obviously not seen as sufficient to cater to the poorest groups. The private–public partnerships did not overcome that barrier. A situation with better private services for the rich and poorer public services for the poor was stressed across all continents. Private services for the affected patients were not supported by the government. In Australia, this disparity was seen as particularly deep following socio-economic strata:
Typically public healthcare did not offer access to psychotherapy or, at best, only very short consultations. This disparity was reported across geographical sites and cultures, was seen in both rich and poor countries and was severely affecting access for the poor.
Regarding treatment approaches, the most reported approach was biomedical, and emphasis was most often on psychopharmacology, as described by one informant from the Middle East: ‘
The biomedical approach and lack of treatment alternatives was also seen in Africa and Asia, here in relation again to staff shortages as mentioned above. ‘…
There was a general consensus about shortages of staff and resource constraints in services and competence. However, the experts also acknowledged the cultural background as important for understanding the patient’s presentation of symptoms in medical practice. Because of this, psycho-educational programmes not only need technical accurate translation of language but also a translation including an interpretation of local sociocultural phenomena.
An expert from Africa brought up this in relation to culture and religion specifically in order to understand the patients presentation of symptoms: ‘
Because this is important for symptom recognition, awareness about culture and cultural competence should start already in the early training in psychiatry. ‘
Understanding cultural diversity, acculturation and cultural change was seen as important in relation to migration, and practising in a changing society as the two quotes illustrates, ‘
Finally, some respondents underlined that, in spite of the importance of cultural aspects, in their opinion, a general biomedical training in psychiatry remained of greatest value, enabling doctors to address a majority of issues related to the clinical management of bipolar disorders across cultures.
Stigma in bipolar disorder
All our study participants said that stigma was an issue of importance in their country and culture. They described stigma towards bipolar disorder as part of a universal stigma towards all mental illness, and that it was also related to both lack of education and in some cases superstition. One informant from Asia described one severe possible outcome of stigma: ‘
Several informants emphasized that patients and families often were ashamed of the disease and tried to keep it a secret in order to avoid social disgrace and degradation, severely restraining access to healthcare. In some cultures, it was reported that stigma often was intertwined with religious beliefs, like this quote from the Middle East illustrates,
Stigma might also present differently in men and women, as this informant from Mexico has experienced:
However, there were also positive reports from informants about an emerging decline in perceived stigma, as general knowledge about bipolar disorder is increasing globally, as suggested in this quote from an informant in Europe:
Gender and culture in relation to bipolar disorder
Whereas some responders did not think that gender was an important issue when treating patients with bipolar disorder in their culture, others found that some gender issues were of crucial significance. A cross-continental view was that there was no gender-based difference in presentation of symptoms. One informant from Europe stated, ‘
However, culture-bound gender-difference could force the clinical picture to vary as seen by one informant from Asia: ‘
This culture was also linked to a significant problem with sexual abuse of women and young girls, consequently producing many female patients with symptoms of being traumatized, complicating also the diagnostic considerations with regard to bipolar disorder:
However, some responders also expressed that women might be doing slightly better than men independent of cultural background, as stated by one informant from the United States: ‘
Importance of religions in relation to bipolar disorder cross-culturally
Most informants reported that some aspects of religion influenced the clinical treatment of bipolar patients in their part of the world, although this impact was not unique to BD but related to mental disorders in general. This quote describes a problem in treating Muslim patients in the Middle East: ‘
Responders from other regions had a different view, stating that religion was of less importance in their culture, described by an informant from Europe: ‘
Religion was considered important in populations where religious beliefs infiltrate all aspects of daily life. But in all societies, including those where religion in general is of less importance, individuals from certain religious sects may share belief systems that sometimes obstruct proper psychiatric treatments, as diseases can be considered to be a result of God’s will, manifestation or punishment. An informant from North America described, ‘
Moreover, some religious beliefs systems convince people to seek help for their problems by engaging in shamanistic rituals performed by local faith healers as described in this quote from Africa: ‘
Another informant from Latin America describes the use of traditional healers and how this may also add positively to the healing process:
Discussion
This paper reports findings from a global study about culture and bipolar disorder initiated by the Transcultural Task Force of the ISBD. It includes the responses of 19 informants (bipolar experts) from 16 countries representing all continents. In-depth interviews and information acquired through an electronic survey with open-ended questions were used. To a large degree, the current leading ethnomedical theory about bipolar disorder worldwide is the biomedical model, with a correspondingly strong emphasis on psychopharmacology. Ethnomedical systems are strongly influenced by – and are sometimes difficult to distinguish from – religious, social, political or financial systems. Several statements in our study exemplify this. First, in many parts of the world, access to healthcare for bipolar patients mirrors a general lack of psychiatric or even medical services, and in such situations, local faith healers represent the only available treatment option – often including shamanistic rituals as part of a religious understanding of mental disorders. Second, it became evident that the organization of the financial reimbursements for different treatments directly shaped bipolar patient’s access to healthcare, typically limiting access to long-term follow-up, psychotherapy and psychoeducation in some public healthcare systems.
According to our study experts, the biomedical model for understanding and treating bipolar disorder seems to be shared by most healthcare professionals globally. However, this does not mean that cultural or psychological factors are unimportant. On the contrary, almost all of the experts considered the lack of access to proper psychotherapy as a major deficiency, whether the result of a general lack of competent personnel or the result of a financial reimbursement system thwarting necessary treatments for less-privileged inhabitants of rich societies. This reads as recognition by the experts of the importance of expanding the biomedical model to the bio-psycho-social-cultural model that constitutes the current understanding of psychiatric disorders and treatment interventions.
The informants clearly reported that stigma was related to social constructs. They highlighted that mental disorders in general are stigmatized, and in some social environments, this is true to such a degree that patients and families will try to hide the disease and even avoid seeking professional help. Sometimes, the stigma was related to religious postulates about mental disorders being caused by sinful thoughts and behaviours, or religious belief systems seeing mental illness as the result of supernatural forces such as spirit possession or sorcery. In other cases, stigma was more strongly linked to social factors, as highlighted by several informants focusing on the lack of insight and acceptance of mental disorders in some ‘macho’ cultures characterized by denial of mental illness. As a consequence, many patients risk not getting proper therapy for their bipolar disorder. In the worst case scenario, they often reportedly develop substance abuse problems instead. Stigma may also distress women more than men, and several informants stated that having a bipolar disorder may cause more social consequences and isolation in women, especially in parts of the world where women still depend on marriage to be socially included and financially secure.
Cultural studies of thoughts and attitudes towards health and healthiness have been examined among a wide variety of ethnic groups in studies from the United States, and there is evidence that bipolar disorder may be underdiagnosed in favour of schizophrenia, with the direct consequence that African-Americans were more likely than patients of Caucasian origin to be treated with antipsychotic medications and depot injections (Arnold et al., 2004; DelBello et al., 2001), not to mention incarceration (Strakowski et al., 1996). Such differences may have been caused by factors inherent to the psychiatrist–patient relationship such as linguistic and vocabulary problems, cultural differences in the interpretation of certain symptoms and racial stereotypes (Kirmayer and Groleau, 2001). Interestingly, a study of bipolar disorder from the Amish population in the United States concluded that bipolar symptoms such as grandiosity and excessive involvement in activities, as well as overly inflated self-esteem, were culturally masked in this population – probably because such behaviours are considered a sin in that society (Egeland et al., 1983). On the other hand, some manic symptoms, such as psychomotor agitation and a decreased need for sleep, seem to be less influenced by cultural factors.
A study limitation is that the members of an organization interviewed/surveyed other members of the same organization, notwithstanding that this is the single peak body for the disorder globally. However, the hypothesis that it would be of interest to study the opinions of ISBD experts about transcultural aspects of BD was introduced by the first author, an external ethnologist. The ISBD did not interfere with the design of the study or the analyses of the data. In addition, the last author of the paper is a professor in international health without any relation to the ISBD. Furthermore, no claim is made that quotes presented represent general opinions of healthcare professionals in that part of the world. The expert’s international exposure might have given them increased innate knowledge deepening their reflections on the topic compared to their national representatives. Follow-up studies with a larger variety of methods including expanding the findings to include patient perspectives are clearly warranted.
However, there is considerable support in the literature that suggests pronounced cultural influences on symptom presentation in BD. In a study from India, an unusually high proportion of manic patients presented persecutory and self-blaming delusions (Sethi and Khanna, 1993). Studies from China and Nigeria have reported a high proportion of patients apparently presenting unipolar manic disorder, unlike what is usually seen in European and US patients (Makanjuola, 1985). A Moroccan study found that stable bipolar patients relapsed into mania during the Ramadan, theoretically triggered by an abrupt change in the daily social rhythm (Eddahby et al., 2014). A study from the United States showed that children from African-American families were more likely to be diagnosed with a conduct disorder than children of Caucasian origin (DelBello et al., 2001), perhaps due to the language used by the parents when describing the children’s symptoms (Carpenter-Song, 2009). In a study from Canada, using the cultural formulation to resolve uncertainty in diagnoses of psychosis among ethnoculturally diverse patients, a significant proportion of patients with bipolar disorder were re-diagnosed when cultural information was taken into consideration (Adeponle et al., 2012). Regional differences in training and conceptualization of bipolar disorder are likely to contribute to variations in diagnosis and treatment as well (Dubicka et al., 2008; Jenkins et al., 2011; Mackin et al., 2006). A recent study from 17 countries found a relationship of BD prevalence with national scores on four reward-relevant cultural dimensions, possibly related to the role of excessive goal striving in the genesis of the disorder (Johnson and Johnson, 2014).
Conclusion
The global chapter representatives described that cultural factors affected the manner patients present and clinicians understand and respond to symptoms. Knowledge of variations in stigma, gender and religion across different ethnic groups was considered central to the delivery of good clinical care. Consequently, there is a need for continued research to identify cultural characteristics in bipolar disorder that can improve adaptation of contextual training and service provision for BD patients as emphasized in the recently updated WHO Mental Health GAP Action Program Guidelines.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article. M.B. is supported by a NHMRC Senior Principal Research Fellowship (GNT1059660).
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
References
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