Brief
report of
“Stakeholder perspectives in the mental health sector: Values
and quality of relationships”
Contents
of this summary report
1.
Values in the mental health sector
There
would be few things that we do as human beings, which is
not influenced by some value or the other. Examples of
values include respect, dignity, honesty, justice, equality,
liberty, etc. Values underlie institutional decisions,
even though they may not be explicitly discussed. Values
influence the process and outcome of clinical work and
treatment as well.
While
earlier, it used to be held that the therapist must be
value-neutral, it is now accepted that values, for example,
related to gender or religion, do play a role in the client-provider,
or doctor-patient, interaction. Also, shared values between
the provider and the user may enhance treatment outcomes
and improve the quality of life of the user of services.
Value,
in this study, is being defined as the “core organizing
principle of work or life”, based on the Gujarat
Mission Report (2003). Value based steering of mental
health sector has been developed in the western nations,
particularly the Netherlands, which the Report reflected.
The Mission Report tried to represent a “multi-stakeholder
approach”. A “multi stakeholder approach” refers to the
ethical mandate of taking actions in the mental health
sector by involving the perspectives and the experiences
of every interest group- the professionals, care givers,
users, the community and civil society at large.
The
Mission Report, 2003, stated that the mental health sector
has to explicitly engage with the question of values from
a multi-stakeholder approach. It laid accent on the different
value processing happening among the different stakeholders,
and the need for analyzing this domain more clearly. The
report also emphasized the need to develop the thinking
on values in the mental health sector, both institutionally
as well as in non-institutional service provider settings.
The
Mission Report described a means of approaching values
and ethical dilemmas in the mental health sector. It proposed
that there must be better operationalisation and instrumentation
of values in this sector.
People
are negotiating and balancing values all the time when
they make their decisions about care and treatment. Conflict
situations among stakeholders can often be reduced to a
struggle over which value is more important. While human
values (such as respect) may be universal, there may be
situations where one prioritises a value over another favoured
value, depending on the local situation, context and political
interest. This results in value dilemmas.
Whether
to add medication to the client’s food without her knowledge
is an example of an ethical dilemma where the value of
well-being is being balanced against the value of autonomy.
When a carer decides to mix the medicine in the client’s
food without her knowledge, that she should get well is
being preferred over whether the client should have any
say in the matter. The client, or other carers, may think
otherwise. For the professional, this becomes a value dilemma
also, because she has to resolve a family issue in clinical
work.
These
are ordinary decisions that users, carers and professionals
make on a routine basis. However, the linkage with values
is not clearly thought about or discussed in an explicit
manner. All the stakeholders grapple with a variety of
such value dilemmas on a day to day basis: whether to institutionalize
somebody; whether to force somebody to take better care
of themselves; whether to insist on treatment; whether
to provide assistance to somebody to take care of their
finances / property; etc. In many such daily instances,
value dilemmas are faced and resolved in one way or another.
Our
study assumes that value is not something that is abstract
and outside of the world of practice, skill / technique.
Values are at the basis of everyday behaviour, especially
decision making behaviour. Value dilemmas and resolutions
of dilemmas can be discussed in an explicit manner, as
factors influencing the mental health sector, and decisions
being made by different stake holders in the area of care
and treatment. This study was based on the assumption that
it is possible to operationalise values in terms of day
to day decisions, affecting the lives of persons diagnosed
with a psychiatric problem. We also assumed that different
stakeholders have a different take on ethical issues and
values.
Why
are value clarifications necessary at all? That values
have always influenced the mental health sector is evident
from some of the Indian literature. Western literature
too has had an engaging discussion on the free will of
users of mental health services as a primary value. A conflict
situation often arises between stakeholders because they
have a clash of values. If the underlying values are proposed,
articulated and clarified, intervention will be more reflective
on the ethical front, and principled. Clarifying values
will lead to the development of good practices in the mental
health sector (Cf. Report on Good Practices, 2005). As
a part of program development, there will be readily available
tools for resolving ethical questions facing the service
provider. An institutional ethics committee, for example,
is a well known mechanism for addressing values within
a research program or a service project. If there is an
understanding of values, other mechanisms may be developed
for routine problem solving in ethics, within the mental
health sector, such as the Socratic dialogue. A list of
values driving the Mental Health Sector is defined in the
appendix, below.
The
Mission Report had suggested a number of service provision
areas where values were operating in the client – carer
- provider relationship, and where they needed to be strengthened.
An example of how values influence a clinician’s judgement
about and the user’s experiences of informed consent was
graphically represented by the Mission Report [Figure 1
below].
In
India, the client-provider relationship is triadic, involving
the user, the carer and the professional. The Mission Report
had represented the carer’s perspective, with the caveat
that the user mobilization is weak in Gujarat and needed
to be strengthened. In this study we have looked at the
triadic relationship, and the quality of relationships,
between the user, the care giver and the professional.
The
client-provider relationship is the matrix within which
medical and mental health care is initiated, maintained
and delivered. Talcott Parsons was the first social scientist
to theorize the client-provider [doctor-patient] relationship
in the field of sociology. This relationship, in the history
of medicine, can be studied from different points of view
that are social, economic, scientific and psycho-logical.
Many writers in humanistic psychotherapy have theorized
the quality of the doctor-patient relationship in terms
of freewill, and quality of interpersonal relationships.
Mental health care is delivered during a process of inter-personal
transactions between client, carer and provider. It is
a triadic interaction wherein the provider, the carer and
the client have roles and responsibilities, enacted over
a substrate of psychological factors.
The
therapeutic aspects of the relationship are based on structuring
the interventions on humanistic values of the identity
(self awareness), freewill and autonomy of the client.
The most important factors for this structure are the psychological
substrates that bond the client to the doctor. The doctor-patient
communication has been described as “the medical art”.
It is influenced by various factors such as medical education,
the personality of the physician, characteristics of the
society and so on.
Literature,
reviewed in this report, shows that patients complain of
doctor’s lack of sympathy; He/she doesn’t not seem to care
that I [the patient] am suffering; Doctor does not offer
explanations or answer questions; Doctor is abrupt; Communications
are poor; Doctor does not tell about the side effects of
the medicine; etc. On the other hand, doctors complain
of patients that they don’t follow treatment suggestions;
patients refuse to participate in their own care; they
expect a miracle cure; Patients and carers are with unrealistic
expectations, etc.
The
flow of communication is a vital part of the quality of
the client provider relationship. It has been noted that
the increasing public dissatisfaction with the medical
profession is related to deficiencies in clinical communication,
which adversely affects client management. Improvement
in clinical skills is also remarked on.
Therapists
of all kinds hold an assumption that clients with mental
illness are not able to hold valid opinions about the treatment
because of impaired mental status. Client satisfaction
is regarded by the professionals as principally determined
by transference projections, cognitive dissonance, unconscious
process, client character, and a naivete about treatment
rather than an informed decision process reflecting the
adequacy of treatment.
The
model of doctor-patient relationship practiced in Indian
medicine has been termed the activity-passivity hierarchical
model, and one of paternalism, characterized as the Guru-Chela model.
The client is not treated like an equal partner, but rather
as a subordinate. The physician is active and the patient
is passive. The physician decides and dictates, and clients
obey. The dependence, alienation and dehumanization that
are bound to occur in the patient with the passivity model
would be minimized or eliminated by a participatory interactive
treatment process.
Self–Esteem
All the definitions of self-esteem emphasize the evaluation
of one’s own worth, value, and competence. In the existing
literature, self-esteem refers to feelings of self-worth,
stemming from an individual’s beliefs about being worthy,
valuable and capable. Such beliefs could be positive
or negative. Other references made in the context of
self-esteem are, a feeling of pride in oneself, valuing
oneself, liking or having love for one self, respecting
one self, etc.
The
National Association for Self-esteem modified this definition
as “the experience of being capable of meeting life’s challenges
and being worthy of happiness”. Self-esteem and values,
such as respect, dignity and happiness, are related. In
the definitions of self-esteem, “worth” refers not just
limited to feeling good about oneself. It is tied to whether
or not a person lives up to certain fundamental human values,
such as finding meanings that foster human growth. It also
involves making commitments to them in a way that leads
to a sense of integrity and satisfaction. Competence refers
to the personal conviction that one is capable of producing
the desired results.
The
report reviewed several self esteem measures and adapted
the ideas therein for development of a scale.
Much
of the research linking self-esteem with health appears
to have been done in terms of the influence of self-esteem
on health related behaviours. Self-esteem has been related
to health practices such as the use of birth control, smoking
cessation, pain management, weight control, etc. Our review
of research showed that among mental health patients, stigma,
mastery and overall functioning are significant, persist
over time, and have an enduring effect on self-esteem.
Also, those who were competitively employed had higher
self-esteem than those who were unemployed. He also cautions
that mental health professionals should not assume that
clients with mental illness experience low self-esteem.
Other studies also highlight the fragile nature of the
self and the need of social functioning in recovery from
severe mental illness.
A
diagnosis of mental illness comes with additional burden
of a negative labelling. Reviews of literature show that
the family members and community reacts adversely towards
the mentally ill person. Stigmatization affects employability,
social acceptability, daily life functioning, decision-making,
and relationships, of the person diagnosed with a mental
illness. Published research literature eloquently describes
the harmful effects of stigma and self-esteem. Personal
reactions to the stigma of mental illness may result in
significant loss in self-esteem and a drastic shift in
the belief system.
2
The purpose and aims of the study
This
is an exploratory study. The study had the broad purpose
of exploring the interphase of users, carers and psychiatrists,
and cross matching the values and expectations of three
stakeholders in the mental health sector: the users, carers
and the psychiatrists. There are three main segments to
the study:
1.
The quality of relationships between the stakeholders (Schedule
I)
2. Value clarification by the stakeholders (Schedule II)
3. The self esteem of users, who are being seen by us as
the most vulnerable group among the stakeholders (Schedule
III)
The
study aimed to:
- Examine
the interphase among the stakeholders
- Examine
the match between values of MH stakeholders and understand
how value dilemmas are resolved by them
- Understand
the self-perceived stigma of users
- Highlight
the gender issues in the context of care and treatment
in MH
Our
research questions were:
1. What is the quality of relationships,
among the stakeholders?
2. What is the flow of information from
the service providers to the clients?
3. What are the met or unmet expectations
of various stakeholders operating in the mental health sector?
4. What is the source of knowledge and skills,
defining “expertise” in the mental health sector?
5. What are the pathways to care that clients
adopt in seeking help?
6. Are ethical issues and dilemmas being
faced and articulated by the professionals?
7. What are the values held by the various
stakeholders in mental health sector? Are there conflicting
values?
8. Does the background of the client (age,
educational qualification, gender) alter value decisions
in the mental health sector?
9. What is the perceived stigma among the
users of mental health services?
10. Does the data reflect any gender differences?
Quantitative
methodology was used for the study, through the use of
3 schedules. Face to face structured interview method was
used.
Three
schedules were used in the study.
Schedule 1 – Structured interview questionnaire
Schedule 2 – Value exercise (5 point Likert scale)
Schedule 3 – Self-esteem exercise ( 5 point Likert scale)
Participant
sample:
The study sample includes three types of stakeholders of
mental health sector, viz. psychiatrists, users of mental
health services and caretakers of the patients. Other stakeholders
(clinical psychologists, counselors, etc.) were not included
due to time constraints. 90 interviews were conducted [Table
3 below]. The data sets were complete and all interviews
have been included in the final analysis.
Analysis:
Schedule
I- Analysis of the data was done manually by
using the scoring card method. Responses were sorted
into categories and frequencies and percentages were
calculated.
Schedule
II- Analysis was done using SPSS Version 10.
The participants were asked to respond to the statements
on a five point scale that ranges from strongly disagree,
disagree, somewhat agree, agree and strongly agree. The
responses were entered accordingly in SPSS along with
age, education and gender of the participant. Frequencies
and percentages were calculated. To obtain the level
of significance within the groups, (respondent group,
gender, age and education groups) chi-square test was
administered. To obtain the level of significance among
the groups, one-way ANOVA (t-test) was administered.
Schedule
III- Analysis was done using SPSS Version 10.
The respondents were asked to respond to statements on
a five point scale that ranges from strongly disagree,
disagree, somewhat agree, agree and strongly agree. The
15 statements of the scale were loaded with positive
and negative values. For example:
“I
like being myself and accept myself the way I am”. (Positive)
“I am causing trouble to my family members”. (Negative)
Frequencies
and percentages were calculated. A cut off score was not
established.
3.
Summary of findings and conclusions
3.1
Quality of relationships in the mental health sector
Profile
of participants:
Most of the psychiatrists interviewed by us were experienced
psychiatrists in the age group of 31 to 50, living in the
big cities. Ahmedabad and Baroda also were served by the
mental hospitals. Psychiatrists generally had memberships
to some professional organizations. Academic or the annual
conferences of the professional bodies were attended, but
not a continuing medical education program. While not having
training in counselling or psychotherapy, however, they reported
delivering such services in their practice. The number of
women practicing the discipline is small in Gujarat, as elsewhere
in India. Psychiatrists were working cross sectorally and
probably had the opportunity to see a diversity of clientele
across sectors. They were seeing clients from all classes.
The psychiatrists reported that most of their clients were
Gujarathi, followed by Muslim and then, Marathi. Whether
services were available and affordable for the lower classes
is a question raised by this data. Among the social determinants
of mental illness seen in their clients, economic causes
reported by psychiatrists were unemployment, marital disharmony,
and family / relationship problems.
Up
to 84% of the users interviewed were in the reproductive
and economically productive age groups of 20-39. But most
were unmarried, or divorced. A higher number of men were
single compared to the women. They were living in family
environments as we approached only such members. 3-4 members
constituted the family in most households. The unemployment
level among users interviewed was very high. The type of
work reported was mostly in the unorganized sector. Users
had no monthly income (as reported by users), no other
source of income, and no assets.
Typically,
carers interviewed were elderly, or very elderly, educated,
married, not working, retired, earning around Rs. 6000-7000
a month, having a house. 73% were in the elderly age group,
between 51 to 81 years of age. As compared to the users,
who were completely dependent on the carers for their survival,
the carers were in a settled position, having some income
and owning assets. However, our sample being mostly over
60, very few were gainfully employed. Parents usually have
taken responsibility for the care of the ward, when compared
to siblings. Though seeing clients from across the DSM
spectrum, the psychiatrists were mainly treating severe
or chronic mental illness.
A
high percentage of users who reported having a chronic
life problem, did not know about the nature of the problem
they were suffering from, using vague terms (such as “mental”,
“historia” or “problem of running away”) to describe their
condition.
The carers were slightly more informed, reporting “Schizophrenia”
and “mental illness” often.
The
sample comprised of people reporting chronic suffering,
with only 17% having experienced the problem for less than
5 years. Some had suffered for between 36 and 40 years.
Many did not know or were unaware of the number of years
that they suffered. Very elderly carers were taking care
of elderly users. Such a population exists in Gujarat,
as probably elsewhere in the country. They may have special
needs. 20% of the users are elderly themselves, being in
the age group of 51 to 70. Also, they were giving care
for many years at a stretch. Over 50% of carers had been
giving care for between 6 to 20 years. The “problem” was
seen as an incurable, chronic life event by many.
Assessments:
Total affirmative response to the use of tool for doing psychiatric
assessment was only 25%, as compared to 75% negative
response. Clinical tools for assessment such as SCID
are not being used, leaving the diagnosis to personal
judgment. A high level of awareness exists among psychiatrists
about the need to base psychiatric evaluation on health
status. Many have replied in the affirmative, with 70%
reporting that they refer patients for some health testing
before making psychiatric diagnosis. However, most psychiatrists
do not do laboratory based health check ups, including
basic tests like anaemia. Perhaps the high cost of such
check ups is the reason. Only one person reported health
problems among their clients. Most are relying on their “clinical
judgment” in addressing health problems. Women’s reproductive
health concerns, and concerns relating to domestic violence,
which need to form the basis of psychiatric evaluation,
are not being addressed.
Clients’ reports
suggest that health issues are covered in the initial assessment
interview. Nutritional aspects and life style issues were
least covered during assessment. Some data (relating to
pregnancy, thyroid, especially) coming from clients is
in conflict with what the psychiatrists are reporting.
A large number of clients are reporting that essential
check ups like lithium serum are not done, leading to worries
about monitoring of medicines, especially considering the
long duration of treatment. Some users do not know whether
these tests were done or not.
Our
data in general shows poor quality of information flow
between client and provider. The users and carers are not
likely to be empowered partners in the therapeutic process,
if the quality of flow of information is not strengthened.
Many are not aware about the role of health evaluation
or psycho-diagnostic procedure in mental health care. Clients
are not aware that a “clinical assessment” is being conducted.
They need to be given more information on the evaluation
and the clinical assessment procedure.
Users’ experiences
about the assessment procedure and diagnosis were diverse.
Some users felt that the experience was good and were happy
to receive care. Some others did not know what was happening.
For the remaining, it was a bad experience. A large number
of users were not informed about the diagnosis, and for
many it was a bad experience to receive a diagnosis.
Certification:
Most psychiatrists were doing certification of fitness or
capacity for various purposes. Most psychiatrists were
issuing certification for gaining admission into a residential
facility and determining fitness for trial. Other civil
function certification was also being done by quite a
few.
Only
clinical diagnostic tools (DSM) are being used for determination
of capacity. There is a need to advocate the view that
the DSM is not a suitable tool for such medico-legal determinations.
It is evident from our study that while forced treatments
is being utilized, tools for assessment of consent are
not being applied in determining how and when forced treatment
will be used.
While
a number of psychiatrists were giving out disability certificates,
only a small of them were using IDEAS scale, notified by
the Central Government in the year 2002.
Carers
seem to be in general unaware of certification.
Risk
to safety of self and others and health of the client are
given in the MHA as necessary and sufficient criteria for
admission into a residential facility. However, even though
most psychiatrists were admitting clients to the hospital
by certification, risk to safety of self and others was
not being assessed in a structured manner.
Some
psychiatrists have taken the initiative of developing their
own home made tools for certification. It could be important
to bring awareness of such initiatives among the larger
practicing community.
Referral:
Most referral categories in our study elicited “No Response”.
Solo practice is the norm. There is a trend of referral to
hospital setting, but referral to other health or service
providers is very poor. The referral system from psychiatrist
to other health care and non-medical mental health care services
needs to be strengthened a great deal. Clients of mental
health services in Gujarat provided corroboration about the
poor referral system.
Expertise:
0% psychiatrists reported additional degree or training in
counseling and psychotherapy. But 100% provide counseling
and psychotherapy. There may be a misjudgment that counseling
and psychotherapy are not specialist skills and can be
delivered without training.
Flow
of information
Psychiatrists are reporting giving information to users on
all vital areas of intervention. But, users report receiving
information only on medication. Most psychiatrists give information
on medication, a fact corroborated by users. Vital information
about diagnosis, prognosis, rare side effects of medication
etc. are reportedly being shared with the carer, but not
with the user. Information reportedly given by service providers
are not perceived by clients as information received, showing
gaps in information flow. There is a need to improve the
quality of flow of information from the service provider
to both carers and the users. Many users are satisfied with
the information given to them, despite perceived gaps in
information in most areas of intervention. Perhaps their
expectations are not high (“They can only give medicines,
what else they can do?”).
The
quality of flow of information between psychiatrists and
clients is poor. There is agreement in perception regarding
information given on medication among all three groups.
However, with respect to other vital areas of intervention
there are perceived gaps in information. It is necessary
to address gaps in giving of information regarding diagnosis
and treatment plan. While there is a need to study this
question further in more detail, we note that the poor
flow of information could be the result of less time spent
with clients.
Time
spent with clients
A psychiatrist in Gujarat spends on an average between 6
to 10 hours in client consultations everyday, seeing between
10 to 25 clients per day or approximately 100-500 clients
per month. Many psychiatrists are reporting seeing upto 1000
clients a month, some seeing even more than this. More than
half the psychiatrists spend only between 10 to 15 minutes
with the client. Around one forth spend more than 20 minutes,
some spending even an hour or more. Psychiatrists spend 5
minutes or even less according to many carers. The time spent
with a new client is equally very meager, according to the
users.
The
service providers are satisfied with the time spent and
feel that their clients are satisfied. Many users and carers,
while agreeing that time spent is adequate, are resigned
that psychiatry can only do so much, and do not expect
more than giving diagnosis and medicines. Some carers do
have expectations of receiving more time from the service
providers so that they are able to discuss at length and
obtain more information. Some see violence as the main
problem in management and if their ward is not violent,
have few expectations about time.
Many
users did not provide data about health care visits. But
of those who did, it is evident that users do visit health
care professionals. There are many high need users who
visit their psychiatrist many times in a month, sometimes
even upto 15 times.
The
overall trend of very brief consultation and assessment
time, raises concerns about quality of care, quality of
the flow of information between service provider and client,
and also about the quality of assessments. The data provided
here suggests that there are gaps in assessments as well
as gaps in information flow.
Treatment
preference
The preference for drugs and ECT is evident from the way
psychiatrists described their priorities. Health evaluation
and psycho-diagnostic assessment are not being seen as first
thing to do in service provision. ECT is being seen as second
line of treatment for mental illness in general, both severe
and common. While many reportedly provide psychotherapy services,
very few of them rate psychotherapy as even somewhat high
in their preference. Other services such as self-help, legal
aid, etc. are of low or of no priority.
Only
about half the users interviewed preferred medication,
a small number of them reporting satisfaction with mental
hospital services. Other needs expressed by users included
counseling, empathy, rest, and especially meaningful work.
Client
compliance and expectations from a psychiatrist
Conceptually, for the provider, there was not much difference
between a “non-compliant” client and a “difficult client”.
A difficult client had some additional properties, (such
as homosexuality and arrogance). Only a few psychiatrists
recognize the effects of medication as a reason for non-compliance.
Client
consent and voluntariness as ethical principles are at
risk for both the client seen as non-compliant as well
as difficult. While counselling and building awareness
among users and relatives was a strategy commonly employed,
surreptitious delivery of medicines, giving ECT, using
force and hospitalization are also being used for non-compliant
clients. Forced treatment, ECT and involuntary commitment
was a higher risk for the “difficult users”, more than
the non-compliant ones.
The
users and the carers on the other hand had expectations
about competence of the service provider, better flow of
information, listening, empathy and emotional support during
the diagnosis and treatment process.
Many
providers see “lack of belief in diagnosis” on the part
of the user as the reason for non-compliance. Gaps in flow
of information from provider to client is there, as evidenced
by this study. Absent awareness, users cannot be expected
to admit to their “problem”, which is an expectation by
the provider. When users do not so admit, they are seen
as non-compliant.
Expectations
of the psychiatrists from the mental health services do
not match those of the users in Gujarat. While many of
the expectations of the service providers related to improvements
in services, the users’ expectations related to more about
the quality of the client provider relationship. There
is a need to develop forums where a healthy and forward
looking dialogue between clients and service providers
is possible.
Drugs
While most psychiatrists used diagnosis as the main criterion
for drug prescribing, other considerations also prevailed
among a few psychiatrists. These include- the socio-economic
condition of clients, the side effects, severity of problem,
drug efficacy, experience of client with the drug, emotional
state of the client, etc.
The “No
Response” rate was high relating to the drug prescribing
practices. There was reluctance to divulge details about
these practices. Carers similarly could not give details
about duration of prescription. There is a need to study
this area further.
Users have reported a range of side effects to the medication.
Extra pyramidal symptoms (drooling, spitting, shivering,
etc.) were high among the users. Psychiatrists used various
strategies, the most popular among them being the addition
of a drug to deal with the side effect (“anti-drug”). For
example, to deal with EPS, an anti-parkinson drug such as
Pacitane would be given.
We
recorded only overt side effects. Even though most of the
psychiatrists in Gujarat were giving the newer, atypical
anti-psychotics (what are more appropriately called the
Second Generation Anti Psychotics) such as Resperidone,
none reported Glucose intolerance (Diabetes) among the
side effects. There was also very poor reporting by psychiatrists
of cardiovascular damage [aaina, 2005]. Combined with the
fact that little health monitoring was being done especially
on chronic patients, the cumulative health effects of these
drugs on clients are to be considered.
ECT
Treatment by ECT is favoured as the second preferred options
by a majority of psychiatrists, as noted elsewhere in
the study. Only a small number of psychiatrists did not
favour ECT as a form of treatment and did not give ECT
to their clients. The faith in this form of treatment
as suitable for curing mental illness is high, with more
than half the sample reporting that it is the perfect
treatment (100% beneficial). The usage of ECT in practice
is widespread and diverse, ranging from frequent sessions
per week to a handful of sessions per year. Alarmingly,
the psychiatrists justify ECT use for nearly the entire
spectrum of DSM classified disorders.
Psychiatrists
reportedly use modified ECT. The psychiatrists reported
giving the text-book dosage to clients. Carers and psychiatrists
are giving ECTs to users without the user ever knowing
that ECT had been given. ECT was being given for non-medical
purposes in order to control violence.
Awareness
about fitness for ECT exists in the sector. However, the
actual neglect of physical work up before ECT is alarming.
The actual investigatory practices followed are diverse,
but the maximum number reported blood count as important.
The health aspects of giving anesthesia and an emergency
medical procedure like ECT are being treated quite casually.
We could not get corroboratory data from the clients because
of the large number of non-responders. Where standard guidelines
for drug prescribing does not exist, and over-prescription
is the norm, the basis for identifying a “drug resistant”
client becomes questionable. All the psychiatrists giving
ECT in their practice do not have any emergency facilities
in situ. The response rate to the questions relating to consent
was poor. Users and carers’ consent are being taken, and
where a user is seen as incapable of consenting, carer’s
consent is being taken. No data was obtained about how decision
about incapacity is determined. Assessment tools are not
being used for any such determinations, as revealed by our
study. The psychiatrists are mostly very comfortable with
using the treatment and do not face many ethical dilemmas
in this regard. A small number of them faced the dilemma
of harm caused by the procedure.
Ethical
dilemmas
A majority of psychiatrists do face a number of ethical dilemmas,
the top among them being about maintaining confidentiality
and dilemmas about forced treatment. Concerns are also experienced
about giving medicines during pregnancy. At many levels dilemmas
are experienced, relating to the various stages of treatment
provision.
It
is evident that the information that psychiatrists receive
on ethical issues is sporadic and dependent mostly upon
individual initiative. Set standards of practice do not
exist, though professional bodies such as the IPS may have
some dialogues on this [ ]. Many psychiatrists believe
that the Mental Health Act sets standards of clinical practice,
whereas, it does not do so. The Mental Health Act covers
only some features relating to institutional facilities.
Some believe that such standards are not even required,
indicating the need for greater awareness building on ethical
concerns.
There
is a need to create more awareness about the informed consent
process. The general trend seems to be to take consent
from the carer, as most psychiatrists were not taking consent
directly from the user. For ECT procedure, as it is a controversial
and emergency procedure, the level of consent taking is
much higher. However, it is worrying that even here, some
professionals are not taking consent.
A
majority is turning to the internet as a useful resource
for updated information in psychiatry. A reading habit
does not exist among the practicing community, as a high
majority could not say the name of the last book or journal
article read. Continuing Medical Education figures last
in their source of scientific information, showing the
need for some normative pressure to be put on professional
development using the more conventional curricular methods.
There
is overall feeling that licensing will serve multiple purposes
in regulating the mental health sector. However, there
is a need to create more awareness among professionals
about the importance of standardizing mental health practice.
There
is a need to develop a research culture in mental health
in Gujarat, an area also cited by the Mission Report as
one needing strengthening. Psychiatrists are conducting
clinical trials in collaboration with pharmaceutical companies.
But only a very few psychiatrists, especially those attached
to training institutions or hospitals, are actively involved
in research.
Carer-user
relationships
Users in general do feel that they are motivated, just like
health care clients, and felt they had a responsibility in
their own self care. Many, but not all, psychiatrists in
Gujarat also report that their clients are motivated, but
add a rider that they have to motivate them.
Users’ data
suggests that there is a discrepancy between users and
carers on the question of capacity. Users have reported
a wider range of activities, including activities taken
up in pursuit of their own better mental health. Users
have a high level of confidence in managing their own daily
lives. Activities taken for granted as “non activities” by
many, are seen as very important in maintaining mental
health and stability by the users. Users are also involved
in a range of household activities. Many users also reported
involvement in religion, spirituality, physical exercise,
introspection and intellectual development. Only a small
number of users were employed or attending day care. It
is likely that they suffer from a high degree of sheer
boredom and lack of a sense of achievement, a fact borne
out by the self esteem scale findings. Most of the users
reported external factors as barriers to self-care, rather
than internal factors. Many users are able to take care
of themselves and do a wide range of activities, according
to the carers also. However there is a diversity of opinion
among carers about the extent of users’ capacity.
We
have found the carer-user relationship to be one of high
control and high dependency. No tools were used to measure
this. However, these are based on self reporting and field
observations. For example, “Listening to us” was given
as an activity by a carer! Carers also enlisted many activities
(“keeping watch”), which showed a high level of monitoring
in family life.
Also,
the interpersonal and emotional quotient of family life,
and the user-carer relationship, needs improvement, as
reported by both users and carers. Users feel lack of emotional
support while carers report various types of interpersonal
problems.
Carers
have a range of activities to perform in their care giving
role. For many carers, the care giving role was out of
a sense of duty or not having any other carer willing to
take on that role. Difficulties faced by carers are both
financial and interpersonal. They were very anxious or
resigned about the future of their ward. Reportedly, having
a mentally ill member in the family affected their family
and social life, health and work. However, the carers came
mostly from the elderly to the very elderly group. So some
of the health and work related problems could also be attributed
to this. The health and mental health needs of this group
is high. A high percentage of carers reported that they
needed a break from their care giving function, indicating
high levels of burn out in this group.
Pathway
to care
Carers data is complete, compared to users’ data, much of
which was incomplete. This perhaps indicates the greater
role played by carers in treatment seeking. Users expressed
a variety of physical, psychological, social and spiritual
causes, which led to psychiatric care. It is interesting
that “roaming”
and “tapasya” are considered as psychiatric. Clients were
trying all forms of treatment, including traditional healing.
Monthly visits were most common, medication being the most
common form of treatment received followed by ECT. One user
reported “chaining” as a part of treatment received. Some
clients were trying alternative forms of treatments, including
traditional healing, after initially seeking medical care.
The families were probably turning to spiritual healers out
of a sense of hopelessness and fatigue, after all other options
have yielded no results. The user experiences may be different.
One user reported that he became mentally ill when his family
did not allow his “tapasya”. Cultural factors, and the push
towards spirituality, are evident in some of the users’ data.
The number of “no improvement” responses received is very
high, as were the “treatment discontinued” responses. Other
than factors generic to the quality of care in the mental
health sector, it could also be the case that carers’ groups
typically comprise of those seen as “chronic or incurable
cases”. Many have reported giving “injections”, but what
this is comprised of (psychotropic medication, depots or
muscle relaxants) is unclear. Many have discontinued because
of “No improvement” in the ward, lack of easy access and
also the cost involved. One family discontinued treatment
due to ECT treatment.
3.2
Value negotiations in the mental health sector
The
value study clearly shows the conflict of values among
the stake holder groups and the overall disempowerment
of users of psychiatric services.
The
study shows that psychiatrists were reluctant to grant
autonomy to psychiatric clients. Quite a large number of
psychiatrists (83%), the highest number across all groups,
are agreeable to not granting autonomy in making major
decisions. A small number (17%) were even of the opinion
that the client should not have autonomy in making day
to day decisions, 1% having a very strong opinion on this.
80% of psychiatrists are asking for a compromise on autonomy
when it comes to management of property, the highest percentage
across groups.
The
Mission had pointed to cultural values influencing the
mental health sector. The study on values has given ample
evidence of this. “Honour” as a value has a very high level
of influence over the decisions made by the community in
the mental health sector, especially among the carers and
the users. Cultural stereotypes and gender stereotypes
are present at the community level, and also among doctors.
There is a need for women’s empowerment programs in Gujarat,
across sectors, including families, communities, and doctors.
Autonomy
as a value is not favoured much by all stakeholders, but
especially among the doctors and the carers. The value
of Justice is also not valued highly by all the stakeholder
groups. There is a need to strengthen perceptions on these
values as these are at the very basis of a human rights
sensitive mental health care regime.
Control
of violence (safety) is seen as a limit on the value of
justice by all stakeholders, but maximum among the carers.
The negative views of carers on the topic of violence really
need to be addressed. The burden of care may have resulted
in the extremely negatively perception. More carers are
likely to use the “dumping” option because of these perceptions,
as they seem to be pervasive.
However
users too have internalized this perception of themselves
as dangerous to themselves and to society. This perception
is likely to increase their insecurity, reduce their self
esteem, while at the same time reinforcing stigma. The
psychiatrists could be playing a lead role in demystifying
and removing the existing community stereotypes about the
safety aspects of psychosocial disability, as not many
believe in this stereotype. However, there is a need to
dismantle stereotypes even within the doctors’ group as
some doctors, alarmingly, hold very negative perceptions.
Participation
of persons with a psychosocial disability seems to be a
difficult issue for all groups, and needs to be more deeply
studied and advocated. The right to work and continuing
employment is a major area where advocacy efforts have
to be pitched. There is a great need to advocate strongly
for the concept of self determination, the right to consent
and protection from forcible treatment, among the groups,
but especially among the doctors. Our study shows that
only a few doctors are against forcible commitment and
forcible treatment, and there is a reluctance to see the
users as equal partners in the treatment process. Users’ expectations
of participation and protection against forcible treatment
need to be appreciated and acknowledged by the mental health
system.
This
was a micro study, looking closely at the relationships
between carer, user and professional, within the mental
health system in Gujarat. This is the first of its kind
in the country, with a focus on user disempowerment within
the mental health system. There is a need to strengthen
the quality of relationships between users, carers and
service providers. There are conflicts in expectations
between these three groups. The flow of information is
poor from the doctor, to the carer, to the user. The user
is the least informed of all the three groups and the most
disempowered. The mental health system needs to reform
itself on the information transfer front so that the end
user is benefited by the therapeutic interventions, or
at least is aware of what is being done upon him or her.
The health care assessment procedure also shows the need
for professional strengthening. Perhaps the professional
bodies such as the Indian Psychiatric Society have a role
to play in this. Field observations and data received shows
concealment of information on vital topics such as ECT
and medication from the user. Such measures taken by the
family and the professionals as being “in the best interest
of the patient” need to be questioned. The level of participation
by the user in his or her own care and treatment is seen
to be very minimal. The self esteem of users needs to be
addressed against this context of the carer-user relationships.
Summary
prepared by
Dr Bhargavi V Davar
Principal Investigator of this study
At the Center for Advocacy in Mental Health
Research
report was prepared by:
Bhargavi Davar
Sachin Shinde
Statistical
support by:
Ms. Uma Mahajan, Pune
Submitted
to:
MHSP
co-ordinating office, IIMA, Ahmedabad
December, 2005
Research
credits: This work is derived from
BV Davar’s study of values for the Mission Report.
BV Davar developed the idea and made the funding application.
Tools were developed by BV Davar, Gita Kale and Sachin
Shinde. Sachin Shinde developed the materials on self-esteem.
Gita Kale, Sachin Shinde, Anuradha, and Ruturaj conducted
the field work and formatted the data, along with help
from Ruchita Bhalachandra. The analysis framework was
developed by BV Davar, Sachin Shinde, Gita Kale, and
Anuradha. The data entry and statistical analysis for
value clarification schedule and self esteem scale
was done by Uma Mahajan. The final analysis and reports
were prepared by BV Davar and Sachin Shinde.
Funding
support: The Royal Netherlands Embassy,
New Delhi, through the Indian Institute of Management,
Ahmedabad.
Acknowledgements:
 To
all users, carers and professionals in Ahmedabad, Baroda
and Surat, who participated in our study
To
the IIM, Ahmedabad and the MHSP co-ordinating office for
full support of our work
Appendix - A list of definitions of values in MH
- autonomy:
the value that one is at the center of one’s own life
choices
- care:
the value that all healing relationships will promote
warmth as well as safe spaces for personal transformation
/ growth
- citizenship:
the value that one can participate as an equal subject
in the socio-political / democratic spaces of the nation
state
- community
identity: the value attached to being a part of a larger
collective or peer group
- dignity:
the value that all relationships, personal and impersonal,
will be validating of one’s existence and humanity
- equality:
the value that one has an equal share in all the resources
and opportunities offered by social and governance structures
- expertise:
the value that one’s professional knowledge carries a
high degree of personal power as well as social esteem
- hierarchy:
the value that power in society must be structured and
regulated in order to sustain relationships and optimize
total human performance
- honour:
the value attached to one’s moral status and strength
of character within the social order (or “keeping face”)
- justice:
the value that political structures will universally
establish safe and fair human conduct by objective use
of law
- liberty:
the value that one is free in all respects, both mental
and material
moral-spiritual: the value accrued from believing in a
superior, non-human power regulating human order
- normality:
the value that a willing conformity to a certain range
of human behaviours is best for maintaining the social
order
- participation:
the value that persons with mental illness must contribute
to the overall happiness and growth of the family (or
other social units)
- paternalism:
the value that some people (e.g. the mentally ill) cannot
take care of themselves and need surrogate decision makers
- productivity:
the value that everyone has an equal responsibility in
the growth of capital, (market or social), in a nation
state
- respect:
the value accrued from mutual appreciation and acknowledgement
of having positive power in a relationship
- safety:
the value that one’s physical, emotional and reproductive
/ sexual integrity must not be put at risk
- self-determination
: the value of being enabled to make informed choices
about one’s own (mental) health
- self-interest:
the value of centering oneself as reference in making
assessments about benefits accrued, both mental and material
- solidarity:
the value accrued from the power of being in a collective
trust - the value that client (family / patient) and the
provider (or any two social actors) are engaged in a mutually
honest, transparent and fruitful process of commodity exchange
- welfarism:
the value that mentally ill people are most vulnerable,
and that they need patronage and protection
- ‘wellness’:
the value attached to being in a holistic state of physical,
mental and reproductive / sexual health
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