A qualitative study of perceptions related to family risk of bipolar disorder among patients and family members from India

Abstract

Background:

Over the past decade there have been rapid advances in psychiatry genetics and there is a growing concern about the clinical and practical relevance of this knowledge. Efforts are being made to know the perspectives of patients and family members regarding family risk and genetic counselling. However, the area remains largely unexplored in psychiatric research from Asian countries.

Aim:

The primary purpose of the study was to explore the perceptions related to family risk among Indian patients with bipolar disorder and their family members. The study also aimed to explore the related perceptions for etiology of bipolar disorder.

Method:

Patients with bipolar disorder type I and family members of patients with bipolar disorder type I were invited to take part in in-depth interviews after informed consent, targeting a sample of diversity. The qualitative data were analysed using thematic analysis.

Results:

Eight key themes emerged: (1) higher emphasis on external or situational causes; (2) causal explanations are governed by cultural beliefs; (3) help-seeking is a shared, rather than a personal, decision; (4) the perceived genetic risk is low but worrisome; (5) worries and apprehensions are focused mainly on future generations; (6) there is a desire to modify the perceived genetic risk; (7) knowledge of precise risk can be beneficial as well as anxiety provoking; and (8) there is a need for information on preventive measures.

Conclusion:

The study provides culture-specific perspectives on the causation of illness and explores a sensitive and personal matter of perceived family risk in an Indian sample. It emphasizes the need to further explore the perceptions of family risk in a given cultural context.

Keywords

bipolar disorder family risk genetic risk qualitative India

Background

Bipolar disorders are chronic, severe, recurrent disorders that affect approximately 1% of the general population (Kessler et al., 1994; Weissmann et al., 1996) and figure among the top 10 causes of disability worldwide, accounting for nearly 2.5% of the total years lost due to disability (World Health Organization, 2004). Although the precise etiology of bipolar disorder remains unclear, there is compelling evidence from twin, family and adoption studies that points to a significant role of genetic factors (Chakravarti & Little, 2003; Goodwin & Jamison, 1990) in addition to environmental factors. Heritability estimates for bipolar disorder are substantially higher than medical disorders with similar complex inheritance patterns, such as breast cancer, heart disease, asthma, diabetes and hypertension, which are commonly acknowledged to be familial (Chakravarti & Little, 2003).

The risk of developing bipolar disorder in first-degree relatives of individuals with the disorder has been estimated to be 5%–10% (Moldin, 1999). The risk of a major mood disorder is 25%–35% for a sibling or child of an individual with bipolar disorder, which increases to 50%–75% for children with both parents having bipolar disorder (McGuffin et al., 2003; Nurnberger, Goldin, & Gershon, 1994). The past decade has seen an increasing interest in molecular genetic studies, especially after completion of the human genome project and the possibility of developing pre-symptomatic tests for bipolar disorder.

In parallel to advances in knowledge, there is a growing interest in exploring the relevance of such knowledge to the patients and their family members (Austin & Honer, 2005). The provision of information related to genetic risk may prove to be useful for affected individuals and families, who may want to take necessary steps to minimize the risk. Availability of information related to risk modification may help in engaging the at-risk individuals and families in their health care. Knowledge of personal risk may be beneficial by enhancing the preventive and risk-reduction measures on the part of the individual and could be used to assist in important life decisions, for example, choice of occupation. However, several ethical considerations are involved with such options, given the probable complex inheritance pattern of bipolar disorder, the variation in age of onset, degree of severity and availability of effective treatments (Austin & Honer, 2005; Shore, Berg, Wynne, & Folstein 1993). Given the complexity of the entire situation, it is important to evaluate the perspectives of all stakeholders, including patients and family members.

Only a few studies have explored the perceptions related to familial risk, and the results have been inconsistent, with recent studies suggesting an overestimation of genetic risk (Austin, Smith, & Honer, 2006; Quaid, Aschen, Smiley, & Nurnberger, 2001) and a possible impact on reproductive decisions among individuals with familial loading (Meiser, Mitchell, McGirr, Van Herten, & Schofield, 2005). However, the available literature is from western countries, which may not be representative of views held by patients and their families from Asia. A few studies from the Asian subcontinent explore the causal attributions and their impact on the lives of patients and families (Phillips, Pearson, Li, Xu, & Yang, 2002; Yang, Philips, Licht, & Hooley, 2004).

The primary purpose of the present study was to explore the perceptions related to family risk among patients with bipolar disorder and family members of patients with bipolar disorder in an Indian setting. The study also aimed to explore the related perceptions for etiology of bipolar disorder in patients and family members.

Methods

Recruitment of participants for this study was done from the outpatient clinic of the Department of Psychiatry, All India Institute of Medical Sciences (AIIMS). This is a tertiary care, teaching and training hospital situated in New Delhi, which draws patients from several surrounding states. Delhi is the political capital and cultural centre of India, situated in its northern part with a population of nearly 14 million (Census of India, 2001). Owing to the migration of people from across the country, Delhi has grown to be representative of multiple Indian cultures and religions.

Patients with bipolar disorder type I and family members of patients with bipolar disorder type I were invited to take part in in-depth interviews. Only biologically related family members were included, however it was not necessary that the patients and family members belonged to the same family. The diagnosis was confirmed with the patient or family member from the most recent outpatient card available. The patients were also assessed for their mental state by a psychiatrist on the day of interview to confirm euthymia. All the participants were 18 years of age and above, spoke Hindi or English fluently and provided a written informed consent. Participants were not included if they had an additional psychiatric diagnosis, alcohol or drug dependence (except tobacco), or a significant medical or neurological disorder in self or family. A heterogeneity or diversity sample was selected in order to gain a broad spectrum of perspectives from patients and families. Participants were selected purposefully by the first author, after screening the patients or family members visiting the psychiatry outpatient clinic. During selection, it was ensured that the sample contained participants from both genders and represented diversity in age groups (young adult, middle-aged and elderly), illness duration (short-term and chronic), family history (single and multiple affected) and relationships (self, siblings, parents). The selection of participants was not based on a predetermined proportion or numbers, but rather with the aim of obtaining a diverse sample.

In-depth interviews were audiotaped after written informed consent and each interview lasted for an average of 1.5 hours. The interviews were conducted by the first author. Interviews relied primarily on open-ended questions pertaining to perceived causation of bipolar disorder, thoughts and feelings related to family risk, and attitude towards routine dissemination of information in this regard. The participants were encouraged to speak at length and discuss any related issues that they deemed important. Clarifications and probing questions were used minimally as and when indicated.

The audiotaped interviews were transcribed in full, after which manual coding was done by the first author. Initial codes were developed on the basis of existing literature and content of questioning, and later additional codes emerged from data immersion. Researchers discussed the coding framework and incorporated alterations. Any differences were resolved by mutual discussion. The coded interview transcripts were then analysed to reveal the shared themes. Boyatzis’s (1998, p. 4) thematic analysis approach was followed, where a theme was defined as a ‘pattern found in the information that at minimum describes and organizes possible observations and at maximum, interprets aspects of the research topic.’ The analysis results were again discussed by the researchers.

Results

The sample comprised 16 participants: 5 patients with bipolar disorder and 11 family members of patients with bipolar disorder. Their characteristics are summarized in Table 1.

Table 1.

Characteristics of participants (N = 16).

Characteristic	Value
Age (years): M (range)	31.5 (19-52)
Gender: M:F	10:6
Patients	5
Family members with	11
affected son	5 (45.5%)
affected sibling	4 (36.3%)
affected parent	2 (18.2%)
Married (with children)	11 (9)
Unmarried	5
Education (years): median (range)	10 (0-15)
Years since diagnosis: median (range)	7 (0.5-20)
Family history of bipolar disorder in >1 person among first- and second-degree relatives	5 (31.5%)

Higher emphasis on external or situational causes

Participants reported the illness to be a result of unique life circumstances or a series of external events culminating in psychological trauma. The role of internal or biological factors was also acknowledged, especially in causing vulnerability to stress and often, unknown internal factors were cited in addition to an external cause. In particular, the role of a chronically stressful life or a long-term stressor was emphasized. It appeared that most participants had drawn on their own personal experiences. The attributions were diverse, ranging from a lack of social interaction, financial constraints and debts, academic failure, an old head injury, reaction to a medical disease or dietary habits. Often, a combination of factors or sequence of events was reported rather than a single unfortunate event:

He was highly ambitious, when he scored A grade, he would think of A+, when he earned 10 thousand rupees, he would think of earning a lakh… then he lost his job and there was no earning… he lost confidence in himself. (sister, 25 years)

I was always suppressed as a female, first in father’s place, in society and now at in-laws.… I always catered to everybody’s needs and remained quiet… all this internal suppression over so many years led to a sudden release and blast of emotions… and I started getting angry at everybody and beating them up. (patient, female, 32 years)

Causal explanations are governed by cultural beliefs

Most participants made an effort to describe the link between the cause and the illness as per their understanding. The knowledge of traditional systems of medicine and prevalent cultural beliefs were employed to formulate a causal explanatory mechanism. For example, ‘thinking excessively’ about a particular event can lead to a ‘flooding’ of mind, which can lead to ‘mind not working properly’ and consequent ‘loss of control’ over emotions. The participants expressed a moderately high conviction in their explanations, but were open to suggestions:

My daughter had crossed 17 years of age, but I had not married her despite advice of elders. It is a 100% sure reason that when children are at that age, their sexual energy is at peak and if not married, it can go to their mind and result in mental disturbance… only I am to be blamed for her illness. (father, 45 years)

I had chickenpox (chhoti maata), also had fever at that time… It led to excessive heat (garmi) production in my body, this excess heat crossed over to my mind… as a result I started speaking more… in my case, this was the reason. (patient, male, 42 years)

My brother used to eat lot of masala (spices) in food, much more than family, these ‘hot’ things can affect your mind… (sister, 28 years)

Help-seeking is a shared, rather than a personal, decision

The participants reported the role of advice from relatives and neighbours in decisions related to help-seeking. The advice was generally followed on the basis of faith in the person giving advice and a previous positive result reported by others. Most participants perceived an overall lower contribution of faith-healing to a patient’s recovery compared to medicines. Successful medical treatment created ambiguity regarding supernatural causation. However, relatives’ wishes to seek help from faith-healers were fulfilled despite a less personal ‘faith’ in them.

I do not believe that the tantriks can help for my son’s treatment. His illness is not due to supernatural causes, but my uncle believes a lot in tantra system of beliefs. So we take him to a tantrik for certain rituals. At least, there is no harm in it and my uncle is satisfied. (father, 42 years)

The perceived genetic risk is low but nonetheless worrisome

The concerns of a family risk had crossed the minds of most participants, irrespective of family history. A new-onset illness in the family was also associated with a possibility of genetic transmission in children. Most participants reported worries and brooding over the perceived vulnerability, but chose not to discuss the issue with others in the family ‘to protect them from undue worries’. The worries were occasional, but whenever present were troublesome and distressing:

I fear that I may have the same thing as my brother… because you know, whatever it is, may be in our blood… the illness or the cause for that illness may be common among us. (brother, 19 years)

I do think of it many times, but never discussed with family because the risk is not high in my children and may be, I am worried more than needed… what is the use of troubling them too? (patient, female, 35 years, no family history of the illness)

These worries were often followed by reassuring oneself with examples of healthy family members and renewed resolve to follow a disciplined lifestyle.

Worries and apprehensions focused mainly on future generations

The risk to future generations was perceived to be more distressing than the risk to other family members or self. Participants spent more time worrying about younger members of the family. They felt that passing the risk on to children was especially unbearable and felt it their ‘responsibility’ to somehow avert the risk, even if it is low. They felt little or no control over the situation and often, tried to reassure themselves or divert their thoughts:

I think of my future grandchildren… these illnesses, if they start in a family, may continue in generations to come… My son has this illness and I worry that it should not occur in younger generation… (father, 42 years)

Often, I do worry for my son… I think the risk in him is lower than me, since my circumstances were more adverse and I have made all comforts available to him… but this possibility does worry me… I do not want my son to go through what I have. (patient, male, 31 years)

Desire to modify the perceived genetic risk

Participants expressed a wish to modify the genetic risk, even if it is small and uncertain. They lacked knowledge about whether it could be modified to a significant degree, however they expressed a desire to pursue any known methods of risk reduction. Participants were willing to engage their young children in healthy and protective behaviours to reduce the risk. They also reported to be over-concerned about minor complaints in children and felt unequipped to distinguish normal from problematic behaviours. Often, they tried to reassure themselves that the risk is possibly low since most family members are healthy:

I am very sensitive to any complaint from my five year old son, especially after struggling with illness for so many years, now I do not want it to surface in my son…. I try to raise him in right manner, teach him healthy habits… if there is something else I can do, tell me… (patient, male, 31 years)

I also get stressed a lot and since my mother has illness I may have inherited same vulnerability… I try not to take much stress, but can you tell me how to handle stress… that would help me a lot. (son, 20 years)

Knowledge of precise risk can be beneficial as well as anxiety provoking

Participants expressed their willingness to receive information regarding genetic risk associated with bipolar illness, particularly as a risk-reduction measure. Some also expressed that a definite knowledge of genetic risk may clear their doubts and fears. The precise knowledge of risk was also perceived as anxiety provoking, especially if the actual risk would be more than expected:

If we are aware, we can take some advice and help from doctors so that problem in our children is prevented. (patient, 31 years)

I want to be aware of my situation… I feel vulnerable… because my brother has it, my uncle has it… If it has to happen to me, I should know it from before so that I have an opportunity to take some steps starting now. (brother, 19 years)

I can’t say if I want to be aware and cautious or remain ignorant…. it is okay if I know the risk, even more okay if I don’t. (brother, 24 years)

Concerns about society’s attitude towards their genetic vulnerability were also expressed. One participant expressed concern that it may create a divide among biologically and non-biologically related family members, citing the possibility of his wife blaming his mother for his bipolar disorder:

Such information will benefit me and my family… but may create some differences from society, for example, in matters related to marriage… even within our family, e.g I love my mother unconditionally, but my wife may blame her for my illness. (son, 20 years)

Unmet need for information on preventive measures

Participants felt that the consultations with a psychiatrist mostly centred on the patient’s illness, while the risk to family was not discussed. Some reported frustration at the busy schedule of clinics, leaving them with no time to discuss prevention of illness in the family. Participants did not know how or where to seek information regarding familial risk and its curtailment:

Nobody has discussed this issue with me before. I am occasionally worried about risk to my children and what can I do to reduce it, but did not discuss it with my doctor… they are always busy and overloaded with so many patients… (patient, female, 35 years)

I think the risk is lower side, but I do not want to take chance… I want to do whatever I can to neutralize my risk… but do not know whom to approach… (brother, 19 years)

Discussion

The results of the study provide culture-specific perspectives on a sensitive and personal matter of perceived family risk for bipolar disorder. It also gives useful insights into the perceived etiology of bipolar disorder and reveals the needs and expectations of stakeholders from the service providers.

In India, mental health and psyche have been an area of exploration for centuries, with several cultural explanations for mental illness. Available Indian literature has explored the causal attributions and beliefs in magico-religious, supernatural phenomena and psychosocial stressors for schizophrenia (Saravanan et al., 2007; Srinivasan & Thara, 2001). The findings from this study reveal a higher emphasis on stress, both acute and chronic, as being responsible for bipolar disorder. The role of biological factors was also acknowledged especially in causing vulnerability to bipolar illness. A previous Indian study (Charles, Manoranjitham, & Jacob, 2007) exploring stigma and beliefs about mental illness also indicated that the majority of the Indian patients and their relatives simultaneously held multiple and contradictory models of illness and its treatment. Of particular interest was the integration of certain prevalent cultural beliefs in the causal attribution of bipolar disorder For example, intake of ‘hot’ foods that an increase in body metabolism or the accumulation of ‘sexual energy’ with no outlet can lead to mental illness.

One of the key findings of the study is that perceived familial risk is a source of worry and apprehension among patients as well as family members from India. The participants emphasized external causation, but did not deny the role of internal vulnerabilities. The popular views of misconceptions and ignorance in Indian patients (Dube, 1970; Saravanan et al., 2007) may mislead us to assume that perhaps the Indian population is not ready to discuss the genetic risk of a mental disorder. Of particular interest in this study is that the worries of family risk co-existed with cultural beliefs related to external causation. The present study uncovers worries about possible genetic transmission even among participants with no familial loading.

The qualitative design allowed us to capture the nature of these apprehensions. The risk to future generations was more distressing than current familial or personal risk. The concept of vansha or family tree attains particular importance in the Indian cultural context (Nimgaonkar, Srinivasan, & Deshpande, 2004). Family traditions and histories are cherished, family priests often preserve a detailed genealogy and family honour is given priority in all major decisions. Many behavioural traits like courage and conduct are believed to run in families, especially from fathers to sons, and the concept of behavioural illness running in the family may be an automatic and natural extension of these beliefs (Nimgaonkar et al., 2004). Even a new-onset bipolar disorder in the family was associated with risk of genetic transmission to children.

The estimation of risk was, however, low and did not appear to influence any major areas or reproductive decisions. A previous exploratory study, which had focused only on relatives with higher familial loading, revealed an impact on reproductive decisions (Meiser et al., 2005). Previous studies assessing the risk perception among the spouses and siblings of patients with bipolar disorder have reported that there was a frequent overestimation of familial risk in most studies (Austin et al., 2006; Quaid et al., 2001; Trippitelli, Jamison, Folstein, Bartko, & DePaulo, 1998), which is in contrast to our findings. It was previously reported that 35% of non-parents were less willing to have children because of their strong family histories (Meiser et al., 2007). In contrast, participants from this study were concerned with the protection of their children, rather than the dilemma about whether to have children.

Another theme was a strong desire to ‘neutralize’ the family risk, which was similarly found in an earlier study (Peay, Hooker, Kaseem, & Biesecker, 2009). Participants emphasized a precise knowledge of the family risk as a means for risk reduction. It was viewed as anxiety provoking, but there was an expectation to be guided on proven means of risk reduction, which indicates an unmet need in the area of risk reduction and prevention. India is still struggling to provide even the basic coverage of mental health services to the majority of its population and the area related to genetic risk information has received little attention. However, efforts at prevention and risk reduction cannot be segregated from the management of patients and may be more rewarding in the long term. Most participants expressed a lack of knowledge about whom to approach and made unsuccessful attempts at finding information related to genetic risk reduction from various sources. There was an expectation to be guided in a more structured fashion, rather than by a brief discussion in a busy clinic.

Another issue that merits discussion is the fear of being stigmatized by society and non-biological family members. This was expressed by only two participants but is a socially and clinically relevant issue. Some ethical considerations are unique to mental disorders, since the families with mental illnesses are already struggling with disease-associated guilt and shame (Phillips et al., 2002), often facing discrimination (Sartorius, 1997). Concern about stigma and discrimination may discourage participants from seeking information, despite a perceived personal benefit.

International literature indicates the benefits of genetic counselling for patients with bipolar disorder and practice guidelines (American Psychiatric Association, 2002) mention genetic counselling for bipolar disorder patients who are considering children. The complex pattern of inheritance and the role of environmental factors, however, complicate information provision (Austin & Honer, 2005). Further, India is a culturally diverse country and the social impact of such information has yet to be evaluated. The present study indicates that help-seeking is a shared decision, which means that relatives, neighbours and the larger community are likely to play an important role in seeking genetic counselling as well.

Conclusion

The present study is significant in that it explores the perspectives of patients and family members and reveals their concern about genetic risk. The results are of potential clinical relevance and can serve as a guide in planning research. However, these findings are the result of a preliminary work. The relatively small sample do not represent a thematic saturation and may not have captured all the possible themes. The study is also limited by a hospital-based sample, which may not represent the views of individuals and families in the community. While the study did not use structured instruments for the assessment of causal attributions or perceived family risk, the use of a qualitative approach provided much more detailed information and helped in gaining access to culture-specific beliefs and perceptions of the patients and families. In-depth interviews provided a wealth of information that may not have been accessible using standard instruments of measurement. More studies, both quantitative as well as qualitative, should be planned in diverse populations, including lay people and high-risk populations. Further research in this area can help in planning the integration of services for counselling for genetic risk into the care of patients with bipolar disorder.

Footnotes

Note

Findings from this study were presented as a poster at the XVII National Conference of the Indian Association of Social Psychiatry (co-sponsored by WPA and WASP) held at Kochi, India between 19 and 21 November 2010.

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