‘ENGAGING WITH PHENOMENOLOGICAL NARRATIVES PERTAINING TO WOMEN CONSUMERS’ PERSONAL EXPERIENCES WITH SCHIZOPHRENIA AND OTHER MENTAL ILLNESSES TO DETERMINE THE INGREDIENTS OF WOMEN’S MENTAL HEALTH AND TO DIRECT A CAPABILITIES-INFORMED INTERVENTION [TERMED WOMEN’S SELF-EMPOWERMENT AND ADVOCACY-WSEA] FOR THESE WOMEN CROSS CULTURALLY’: AUTHORED AND COPYWRITED BY DR.LAVANYA (PhD, WOMEN’S MENTAL HEALTH).
I shall start off by asking the question ‘why do we require a woman-empowering-mental-health-consumer-centered-phenomenological research base to conceptualize women consumers’ unique experiences pertaining to mental illness and for providing solutions to problems that these experiences bring with them? Why not rely on biological psychiatry alone?’ I’d like to answer this question in part by pointing to the research gaps in biological psychiatry that need to be addressed and by this I certainly do not mean biological psychiatry needs to be done away with for if we were to do that we would then end up throwing away the baby with the bathwater!!! The surmises I shall make as part of this write-up will as I presume highlight this all important need – the need to conceptualize and form a unique type of phenomenological consumer-directed research base and therapeutic model to deal with mental illnesses in women. I would also suggest what I think its components should be and what I would be interested in working on. In this context and also to address this question, a consortium of different interdisciplinary factors all linked up with one another needs to be developed. We require a phenomenological research base that does include biological psychiatry but moves beyond biological psychiatry too to evolve itself. It should document the social aetiology of illnesses like schizophrenia in women. As such I presume we need to include components from the other mental health sciences as well since biological psychiatry alone is not the solution to this problem and especially so if we are thinking of dealing with girls/women [adolescent girls and women who are very young adults] in the initial stages of Schizophrenia and Depression.
What then are the research gaps in biological psychiatry that necessitate the study of all that has been mentioned above? Before I elucidate that I would like to elaborate on the terms ‘sex’ and ‘gender’. Here we are using the term ‘sex’ when referring to the neurobiological co-relates of male-female differences and ‘gender’ while referring to the psychosocial correlates of these differences. This distinction is especially crucial when it comes to analyzing the impact of treatment on women versus men. In fact one of the things being said is that studies should be designed in such a way that we will be able to identify whether treatment differences are due to sex or gender effects [Kornstein and Clayton, 2002].
Now if we are to discuss the research gaps in biological psychiatry, the implications of the same and the benefits accrued from this exercise let us start from the first stage- i.e. study entry. There are several factors that come into play while selecting a sample that is thought to be representative but may not really be so. To accomplish the making of a valuable or reliable diagnosis of the illness under study we require a clinical interview performed by an expert clinician using a checklist of diagnostic criteria to exclude other diagnoses or medical conditions that might interfere with interpreting the results of the study. And a minimal level of symptom severity would certainly be required in order to ensure that a treatment effect can be observed. Study inclusion criteria frequently require patients to meet a minimum level of illness severity typically based on the score achieved on one of the primary outcome measures and the study exclusion criteria frequently exclude patients based on the presence of certain illness parameters. The value of these inclusion and exclusion criteria is that they define a relatively homogeneous patient sample that will permit inferences about drug efficacy to be made with greater confidence. If a patient population is excessively heterogeneous then it is impossible to determine, unless prohibitively large sample sizes are employed whether clinical improvement is due to drug under study or due to some other clinical or demographic variable that predisposes to response or non-response. Now the potential drawback of the inclusion exclusion criteria is that they may bias recruitment and yield a non representative patient sample. Therefore the consequence is that study results generalize only imperfectly to the ‘real world’ of clinical practice. [Merkatz, Clary and Harrison; 2002].
Whether and how study criteria might lead to systematic bias in terms of female versus male study enrollment is not known. If women have greater co-morbidity, or higher medical help seeking resulting in higher utilization of medications, then entry criteria designed to exclude patients on this basis will introduce a gender bias. It should be noted that the effect may not be manifested in terms of crude proportions of males versus females. Instead it may create a sieve effect, resulting in a study sample whose clinical characteristics differ considerably from female patients in the community and more importantly the size of the ‘gap’ between study sample and community sample may be different for females versus males [Merkatz, Clary and Harrison;2002]. Insofar as there are sex differences in the clinical presentation of anxiety and depression, these differences in scales used to establish illness severity for study entry may also introduce a sex bias in study enrollment. For example women may present more often than men with ‘atypical’ depressive symptoms such as hypersomnia and hyperphagia. This may result in fewer women with these symptoms meeting entry criteria.
Efficacy of study treatment: is another reason why we say the biomedical paradigm needs to be supplemented with a woman centered phenomenological research base in as far as helping women with mental illnesses is concerned:
Also an illness may respond better to one particular class of medication than another class of medication. Therefore a second putative factor that may influence the outcome of clinical trials is the potential for differential susceptibility to non-specific therapeutic effects such as expectancy effects, need for social approval, and therapeutic alliance effects or supportive variables.
A third mechanism through which sex may exert a differential influence on clinical response is how the drug itself acts on females versus males. The potential reasons for such differential drug action are- sex related differences in drug pharmacokinetics, pharmacodynamics, behavioral pharmacology as well as menstrual hormonal and life cycle issues such as pregnancy, postpartum and menopause.
Also drugs within a specific pharmacodynamics class such as selective serotonin reuptake inhibitor [SSRI] antidepressants, benzodiazepines, triptans or atypical neuroleptics may behave quite differently from a pharmacokinetic standpoint. The possibilities for sex age and sex ethnicity interactions are two of the least well studied topics in the pharmacokinetics of psychotropic drugs. Virtually no published literature has systematically examined whether there are sex specific differences in optimal starting dose or titration rates, or whether tolerability or efficacy varies based on the time point in the menstrual cycle at which treatment is initiated. Finally pharmacokinetic parameters are rarely evaluated at different points in the menstrual cycle, although there is evidence for menstrual cycle related differences in drug absorption, protein binding and CYP450 activity [Tanaka et al, 1999].
Among patients with Schizophrenia there is evidence of significant sexual dimorphism in the underlying CNS correlates of the illness. For example CNS imaging studies suggest structural deficits in fronto-temporal regions and these deficits are frequently more marked in males [Cowell et al, 1996; Kopala et al 1989]. Estrogens also appear to have both dopaminergic activity and some effect on nerve growth factor, both of which may alter rates of neuronal cell death thought to be associated with the etiology of schizophrenia [Hafner et al, 1991; Toran-Allerand, 1990]. What is the clinical significance of the diverse examples of sexual dimorphism noted above? The answer is that there are multiple examples of differences in clinical response between females and males. For every example [such as schizophrenia data] in which sex or gender specific results are relatively consistent, there are other examples [such as the depressive disorder data] in which findings are not consistent from study to study. There is clearly a need for more systematic research. Even where a consistent treatment response difference between women and men is found , it is still often difficult to disentangle whether differential efficacy should be more properly attributed to sex specific pharmacodynamic effects of a drug or to sex specific pharmacokinetic effects. It is also difficult to disentangle the impact of differential tolerability and drug discontinuation from efficacy. This is relevant whether a completer analysis or an intent-to-treat endpoint analysis is performed- though there is no consistency in how the efficacy results of these studies are reported. Finally it is far from clear whether sex specific differences in clinical response represent a true pharmacodynamics effect [i.e., one that is acting through a direct pharmacological mechanism] or whether the effect is indirect, due to differences in clinical presentation or other illness features associated with differential clinical response. What are we driving at? What we are trying to say is this whole issue of sex specific differences in efficacy is dauntingly complex. It will yield tantalizing yet inconsistent findings that will remain refractory to understanding until and unless sex- and /or gender specific questions help to shape a priori study hypotheses and become an explicit part of study design [Susan and Kornstein, 2002]. We may thereby require a woman-centered and woman-sensitive focus as far as my study design is concerned although men could also be studied to compare and contrast with women to facilitate this. Also there are other gaps in biological psychiatric research that call for adoption of a multidisciplinary paradigm wherein a very detailed understanding of social aetiology of mental illness becomes important. This is because we need to cover many of the gaps in biomedical research. The gaps can be plugged if biomedical approaches to schizophrenia in women are complemented with phenomenological consumer centered narratives with the consumer of mental health services in the driver’s seat.
The sex specific neuropsychological and psychomotor effects of psychotropic drugs at different phases of the menstrual cycle as well as post – menopausally have not been systematically studied. Also there is very little literature and research that has focused on the sex specific differences in the effect of psychotropic drugs on either neuroendocrine rhythms or sleep architecture. Dosage rates and titration rates for both older and newer atypical neuroleptics have been based on the results of clinical trials conducted predominantly with males. As a consequence, dosing in females may be higher than is appropriate for the underlying CNS substrate. In the wake of all this we need to complement biological psychiatry with other approaches that would be useful in helping women with mental illnesses like schizophrenia recover.
But how would a social paradigm that would be inclusive of research on social aetiology pertaining to mental illness be helpful in compensating for the inadequacies in biomedical research? I will answer this question very shortly.
This multidisciplinary paradigm I conceptualize, that would also invest heavily on understanding [as one of its components], the social aetiology of mental illness, would be inclusive of women’s detailed phenomenologies of distress- we would look into their lived experiences with mental illness so to say, and read in between the lines of their narratives to make clinically meaningful inferences from what they do have to convey- to do this we will have to move away from an understanding of women as being passive recipients of treatment approaches. They may have to be actively involved in the research process as co-collaborators and we shall have to obtain inferences regarding how their social realities too could be changed and modified to facilitate recovery by targeting not only these women but also their surroundings that comprise crucial people involved in their treatment such as caregivers and professionals. If the biomedical paradigm is supplemented with phenomenologies-of-distress-engagements with women consumers’ experiences in real life, a number of realities that are in such intrinsic and essential need of change so as to facilitate a recovery as also parameters pertaining to these could be studied. We are not discounting the biomedical and traditional psychology paradigms – we are only supplementing these with the other paradigms that we deem equally essential to facilitating recovery as it is becoming increasingly clear to me that these cannot be ignored. And we also concede that if we are throwing away psychiatry we are erring. It would be foolish to do this. But being a caregiver in personal capacity [who rehabilitated a blood relative suffering from chronic schizophrenia and evolved a unique support system that led to the client’s complete recovery and resumed functionality and enabled the client to be a very high achiever] and also being a mental health professional, I see the need for psychosocial approaches to be considered as very essential to recovery too because a lot can be achieved by supplementing medication with social changes in the clients’ environments such as the attitudes and approaches of caregivers and most importantly mental health professionals/workers themselves who deal with clients /users/consumers day in and day out. So could we have a woman-specific recovery model for mental illnesses and mental health problems that appear to be in their initial stages of pathology since that is when recovery could be most effectively instituted? Client centered approaches involving qualitative research methods with active collaboration from mental health professionals such as psychiatrists and a focus on removing social pathology to make life more livable for the woman-client seem to be very well suited for achieving this. And we must in this process not forget to involve women consumers and users of mental health services. It was in this very same context that I previously suggested that a consortium of linkages with different approaches be evolved to facilitate recovery for women with mental health problems such as mild and moderate schizophrenia , bipolar disorder, personality disorders, mental behavioral problems etc. Social intervention for instance could mean changing the intricacies of personal interaction between caregivers/psychiatrists and clients as caregivers/psychiatrists may need to relearn communication and new ways of interacting with the client rather than engaging in exercises of professional negativity. A lot can be achieved this way and a lot of problems could actually be solved. A new kind of bond needs to be instituted between professionals/caregivers and clients to boost client confidence as a major part of the solution to achieving recovery. And it is important that caregivers be trained to not inadvertently do things that are counter-productive and which impede the recovery of their wards. Medication or psychotherapy all by themselves may not help – we may have to have user-led, consumer-led, client centered, and client-evolved support systems to facilitate recovery. This is where it becomes essential to respect the expertise and knowledge of people who’ve actually been through mental illness and had direct, subjective experience with the same. I’d like to give an analogy here- there may be several people who have read tons of material on how sweets taste but unless they actually eat sweets they will not know what the taste is like exactly – subjective experience does indeed become valid- ask the person who has experienced it and they will tell you what it is like!!! It will yield special insights and things that would never have been clear otherwise, suddenly begin to become clear. It opens up very new angles and perspectives in mental health science itself.
If these were to supplement medication and psychological therapy, treatment would be much more comprehensive and holistic in a sense that would capture the totality of the woman-client’s experience and this would be very imperative to designing mental health interventions to actually benefit women in the real sense of the term.
So we also need to take into account how elements such as sex and gender tend to either benefit or disadvantage women. We need to see how things operate instead of considering situations brought about by these elements to be mere environments to which people adapt. And this is where a system like cognitive behavior therapy for instance would require additional supplements –woman-user-led supplements – otherwise we would simply be engaging in blaming the victim and locating pathology in the victim alone instead of the offending environmental situation too which more often than not could actually be remedied. And remedying environmental situations could actually play an important role in bringing about recovery. Could we thereby have a recovery paradigm to this whole exercise?
For there is a general presumption in cognitive behavior therapy [I touch upon this since it is a very well known therapy in psychology] that if a person experiences problems in a situation that is found to be disheartening then it is due to something being innately wrong with the individual themselves and that there is something maladaptive about the individual’s own behavior. Too often it is at this juncture that the clinician enforces their views of what is health and what is pathology on the patient and that may only serve to promote the dominant group’s standards. Environmental stimuli can be altered and maladaptive behaviors can be changed but who decides what constitutes health in this model? Who defines the standards for adaptive behavior and maladaptive behavior? How are decisions made about which interventions are used? Who and what has to change? Are psychological techniques being used to encourage users to conform to normative standards and if yes why? Are cultural norms appropriate for a specific user? Are the clinical and social set-ups doing everything they can to help women? A key issue is the essential failure of traditional psychology to consider and challenge the environmental stimuli to which people are subjected. Instead, individuals are expected to improve their adaptive capacities to meet the environmental conditions, which serve to reinforce the dominant social standards [Ballou and Kantrowitz, 1992]. For, many people may be having an external locus of responsibility and learned helplessness that may be antithetical to any self control approaches. In such instances locating pathology within the client would be unhelpful. Addressing this problem is a must if the science and practice of mental health are to be fair to consumers and I focus on women consumers. These are all very solid reasons why we should also develop consumer led phenomenologies pertaining to the social aetiology of mental illness in women. This parameter certainly needs to be included in clinical set ups as a supplement to the healthy aspects of psychological and biomedical paradigms.
If we look at the sociological cross-sectionality of life events that precipitate stressful changes in women leading to mental illness then it may be very essential to consider several social factors that affect women during their life-course. In fact these are what gender discrimination and inequalities translate into, if we were to consider just one of the social factors. I shall elucidate this via a few examples of what can happen. The added pressure for instance of having to conform to gender stereotypes and fit into gender stereotyped roles could drastically increase reproductive tensions and problems because of there being issues of control over a woman’s psyche and/or body and/or being on the whole. It gives rise to sexual tensions in women who don’t enjoy being treated like objects. They want to be treated like human beings and work status contributes to that provided child care is also shared so that it doesn’t become an emotionally draining experience for the woman. If role strain in marriage were to decrease, women’s mental and physical problems would decrease as compared to men. The division of work should never be a gendered assumption. Power play in roles can be derogatory to women especially if the gendered role of the woman is accompanied by a show of power over her body or relegating her to an inferior status by preventing her from working outside the home and earning to make a monetary contribution to the family. Being a primary caregiver seriously limits a woman’s access to choices that might be more personally rewarded and valued more highly by others. Such limitations frequently lead to stressful conditions that grossly undermine a woman’s physical and emotional health. They become a mental torture to the woman and especially so if she is sensitive. Also women could be pressured to have sex when they are tired and the men could feel rejected if their women were to refuse. Women who have been socialized to take responsibility for relationships often feel personally to blame for what others deem a ‘failure’. They not only do mourn the loss of a state of marriage and broken dreams but also exhibit greater sadness over emotional hurts they have experienced often reliving trauma from family-of-origin rejections [Ahrons, 1994]. This is precisely where WSEA [Women’s SELF Empowerment AND ADVOCACY] a support system evolved by me would be required. This support system borrows healthy elements from the mental health sciences and complements them with user-specific therapeutic ingredients to facilitate recovery from mental illness in women. These ground realities call for the development of WSEA. This is one of the reasons why WSEA would need be implemented in the clinical context. How and where else do we come up with a treatment approach that takes into consideration factors such as these?
Depression has its roots in how events are viewed. Research has found that those suffering from depressive states often perceive that they have little or no control over their circumstances including their futures [Bruder et al, 1997]. Men who complain that they are being neglected by their formally attentive wives often do not understand or appreciate the workload mothers undertake. Consequently they may have difficulty comprehending the fatigue levels and preoccupation with children that these women exhibit. Many women complain that their husbands’ demands resemble those of their children and they feel pulled in too many directions. Women who are overburdened, stressed and full of self-blame succumb to depression.
The current parameters used for diagnosis of mental disorder in women could be very gender stereotyped because of the modular explanations they are based upon such as the theory of penis envy or the most modified cum modern versions of this theory that still operate in mental health contexts – son preference in women is attributed to penis envy for instance but I say it is to be attributed to the fact that women who bear sons have a highly exalted socio-cultural status and this is what makes them want to have sons rather than daughters. It is the social set up that makes them do this and not any penis envy. Otherwise we would be attributing maternal investment in caring to penis envy and this is very unfair to women [who are prepared to lay down even their lives for their children]. This is nothing short of mother bashing.
Psychoanalysis also for instance views women’s sexuality from a male view point and links depression in women with depressive propensity and not socio- cultural devaluation. But we now know that depression in women could be the result of socio cultural deprivation and powerlessness as some feminist-studies indicate.
Another example of gender stereotyping would be gender stereotypes being reinforced through neurotransmitter and brain localization theories although these theories were breakthroughs in themselves.
Freud in his ‘Three essays on sexuality’ says sexual relationships are sadist-masochist-something that the victimized women themselves solicit and interprets hysteria to be the result of the loss of a natural infantile sexual state. Thus psychoanalysis is sourced in clinical settings in ways NOT always clinical or moral. This interdefines aggression and sexuality thus only legitimizing male sexual violence. Again, it is unfair to blame the victim of sexual violence who is the woman while the offender goes scot-free.
Many other current theoretical orientations in psychology and the other mental health sciences may still reflect these or at least similar notions or biases although they may say they discount psychoanalysis. Therefore it is in the general interest of women that I call for intra-disciplinary modification – i.e., in as far as certain aspects of mental health sciences like psychology, psychiatry, etc. are concerned. This is part of what WSEA would do. Social pressures on women leave them vulnerable to myriad problems that affect their immune systems and their emotional lives. In a way social learning theory does offer a message of hope to women, which is that anything once learned can be unlearned and new preferred ways of thinking and behaving can replace old behaviors that the client considers unproductive. How we achieve this so the health and wellbeing of women clients, their families and of society as a whole remain non-jeopardized is what we need to devise logistics for.
We also need to consider why and how personal experience would be valid if we have to devise a holistic picture and this would help in terms of understanding other suffering individuals having similar or different experiences but the core feeling of mental illness is something that anybody with personal experience of Mental Illness will relate to. Just as the clinician learns lessons in the clinic the consumers of mental health services have had lived experiences, subjective realizations, insights and lessons from real life itself. An empowerment model for women consumers of mental health would be altogether necessary for recovery since it would promote or at least reinforce a capabilities informed approach to mental health. As Dr. Alex Kleinman stated in his work it would be very important to address questions pertaining to ‘revisiting psychiatry’ from a consumer view point and I would like to add a women’s empowerment dimension to the whole thing. The clinical scenario cannot be oblivious to this reality for which reason I seek to do this sort of interdisciplinary work involving psychiatry, the other mental health sciences and also women’s mental health. If women’s empowerment were to be practiced in the psychiatric set-up we would see a remarkable and blessed change as far as women consumers’ response to psychiatric treatment is concerned. And part of this whole work would involve taking a closer look at issues such as the necessity to negate and challenge the traditional patient-psychiatrist relationship in our attempt to enter the realm of the extraordinary. Could speaking truth to hegemonic medical power improvise things especially where themes are being played out in a context that is disempowering women and delaying recovery because of the gap between policy and delivery? Could this point be better elucidated via phenomenological personal narratives of mental illness experiences that reflect these and other concerns? Could we combine women-consumers’ empowerment within the clinical setting with psychiatric medication to yield better results? What are the internal politics played out in the context of this promised role of the doctor/therapist/psychologist and does revisiting this role via a woman-led-consumer perspective termed WSEA – Women’s SELF Empowerment AND ADVOCACY – liberate the client not only in the sense of remission and management of the problem but also in terms of actual client empowerment via an understanding of women’s lived experiences with mental illnesses? A human relationship between the psychiatrist and woman consumer would thus be reinstituted in a much more effective fashion via formation and facilitation of a very authentic knowledge and research base containing epoch making stories and phenomenologies based on women clients’ experiences of pain due to mental illness and preceding mental illness- we will then evolve better methods to prevent this from happening in the lives of other women at least by tackling these realities in the initial stage itself. Can this be done also via dissecting madness to uncover experiential truths about the self based on which clinically and socially useful depictions of client realities can be conceptualized? And finally to what extent does the mental health professional [who could be a psychiatrist or psychologist or psychiatric nurse or psychiatric social worker or mental health worker] seek to ease the woman-patient’s suffering and pain in a way that does not take away the woman-client’s personhood? We need to develop an interdisciplinary approach that touches upon the totality of woman’s experiences and existence as users. This resilience i.e. allowing the woman consumer of mental health services to get back on her feet after having fallen is the essence of human brevity- for it is in my pain that I can truly tolerate, empathize with and accept others who come to me for treatment. Treatment and support should reflect this subjectivity for without it objectivity in as far as treating the woman consumer of mental health services is concerned would have no meaning whatsoever. And this is one of the things WSEA- Women’s SELF Empowerment AND ADVOCACY seeks to do in consonance with psychiatric medication for the woman- consumer of mental health services via professional involvement with the woman-consumer at a very personal level that also takes into consideration social factors and social etiology of mental illnesses in women.
My attempt at crystallizing interdisciplinary possibilities of research and bridging as well as exploring large vistas of thought and clinical practice in seeking to combine women’s issues and the mental health sciences so that women consumers of mental health services would be subsequently empowered and aided to recover through this form of support [WSEA] will as I hope and anticipate be welcomed on all accounts. It would also be very good if this were to be done in a cross cultural context. There may be other recommendations and suggestions to make the study/project more comprehensive and fruitful and I would gladly and gratefully incorporate those suggestions in my study/project. For all flaws and defects in my research I own responsibility.
By [Dr.Lavanya Seshasayee (PhD, Women’s Mental Health in Women’s Studies)].
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