Accepted Manuscript

Title: Mental Health Literacy in family caregivers: A

comparative analysis

Authors: Kanika Mehrotra, Snigdha Nautiyal, Ahalya

Raguram

PII: S1876-2018(17)30589-0
DOI: https://doi.org/10.1016/j.ajp.2018.01.021
Reference: AJP 1350

To appear in:

Received date: 26-9-2017

Revised date: 31-1-2018
Accepted date: 31-1-2018

Please cite this article as: Mehrotra, Kanika, Nautiyal, Snigdha, Raguram, Ahalya,
Mental Health Literacy in family caregivers: A comparative analysis.Asian Journal of
Psychiatry https://doi.org/10.1016/j.ajp.2018.01.021

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Mental Health Literacy in family caregivers: A comparative analysis

Ms. Kanika Mehrotra*a, Dr. Snigdha Nautiyalc 1 , Dr. Ahalya Raguramb

a
Department of Clinical Psychology, National Institute of Mental Health and Neuro Sciences, Bangalore,
Karnataka, India

b
Department of Clinical Psychology, National Institute of Mental Health and Neuro Sciences, Bangalore,

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Karnataka, India

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c
Department of Clinical Psychology, National Institute of Mental Health and Neuro Sciences, Bangalore,
Karnataka, India

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1
Present Address: Shanthi Hospital and Research Centre, Bangalore, Karnataka

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*

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Corresponding Author: Kanika Mehrotra, Email ID: zazu.me@gmail.com
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Highlights:
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 Mental health literacy in caregivers was compared at two-time points 1991 and 2016 to
study changes in attitudes, if any
 Significant positive trend was seen on comparison with previous study
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 Folk therapy relating to attitude to treatment of mental illness and Rejection of mentally ill
relating to tendency of excluding mentally ill from mainstream functioning shows significant
positive difference
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 However, area of abnormal behaviour relating to beliefs about after-effects of mental illness
shows worsening of negative attitudes
 Hopelessness and hypo-functioning, relating to beliefs about after effects of mental illness
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show no significant difference

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ABSTRACT
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The present study was undertaken to examine the current level of mental health literacy in
family caregivers and to compare the changes over a 23-year period between 1993 to 2016.

The current sample consisted of 60 family caregivers of patients with major mental illness from
the in-patient and out-patient departments of NIMHANS assessed on the Orientation towards
Mental Illness Scale (OMI). This was then matched and compared with data of 80 family
caregivers from previous study done in 1993.

Family caregivers in the current study showed a significant positive trend on comparison with
the previous study. However, area of abnormal behaviour shows a worsening of negative
attitudes. Hopelessness and hypo-functioning, relating to the factor of after-effects of mental
illness show no significant difference.

While knowledge about mental illnesses can be improved by providing information, this does

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not automatically translate to integration of the mentally ill in society. Current initiatives need

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to be matched with specific and sustained efforts to reduce stigma associated with mental
illness which have persisted unchanged.

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Keywords: mental health literacy, stigma, attitudes toward mental illness

1. Introduction

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Mental health literacy is a prerequisite for early recognition and intervention in mental
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disorders. Beliefs and attitudes toward mental illness underscores interactions with the
mentally ill, the opportunities and support offered to them, personal experiences with
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psychological distress and corresponding help-seeking behaviour.
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Jorm et al (1997a) introduced the term ‘mental health literacy’ which is defined as “knowledge
and beliefs about mental disorders which aid their recognition, management or prevention”.
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Mental health literacy consists of several components, including: (a) the ability to recognise
specific disorders or different types of psychological distress; (b) knowledge and beliefs about
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risk factors and causes; (c) knowledge and beliefs about self-help interventions; (d) knowledge
and beliefs about professional help available; (e) attitudes which facilitate recognition and
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appropriate help-seeking; and (f) knowledge of how to seek mental health information. (Jorm
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et al., 1997).

A key barrier to mental health services in India and other low and middle-income countries is
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misconceptions and poor awareness and knowledge about mental illness (Ignacio et al., 1983;
Kermode et al., 2009, 2010; Prabhu et al., 1984; Thara et al.,1998; Thara and Srinivasan, 2000).
From a cultural perspective, mental disorders are associated with a considerable amount of
stigma in Indian society. Such individuals and their families face numerous challenges due to
prevailing attitudes, media portrayals, societal discrimination and deprived opportunities.
(National Mental Health Survey, 2016).
The key stakeholders to mental health care include mental health professionals, family
caregivers and public health officials. Shallow level of understanding of mental illness creates
a cascade of effects including help seeking and treatment delays and barriers in carrying out
accurate demographic studies. Addressing this knowledge gap can enhance increased
awareness and timely treatment. (Loganathan et al., 2017)

Passage of time is a factor that can indicate a change in mental health literacy levels owing to
the variable, non-static nature of attitudes. There have been very few studies that map changes

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in mental health literacy over time - especially in the Indian context. Time trend analyses and

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national surveys from Australia and Germany indicate that mental health literacy has increased
significantly since the past few decades. These changes are largely attributed to government,

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professional, charitable and industry wide efforts to enhance public knowledge about the

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ubiquity of mental disorders and the treatments available. (Goldney et al., 2005; Angermeyer,
Holzinger and Matschinger, 2009).

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At the same time, results also suggest despite an increase in mental health literacy of the public,
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the desire for social distance from people with mental illness has remained unchanged or even
increased. The authors suggest that the assumption of anti-stigma campaigns and
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psychoeducation is enough to change attitude towards mental illness, needs to be re-thought
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(Angermeyer, Holzinger and Matschinger, 2009, Schomerus et al, 2012). Reconfiguring stigma
reduction strategies may require providers and advocators to shift emphasis on competence and
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inclusion (Pescosolido, 2010).

Indian families have been typically described as having magico-religious explanatory models
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for mental illness (Srinivasan and Thara, 2001) however with greater awareness this seems to
be changing to medical and biological models of illness (Srinivasan and Thara, 2001). Studies
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also indicate significant gender differences in mental health literacy, especially with regard to
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help-seeking. It has been observed that males were significantly less likely to endorse seeing a
doctor or psychologist the treatment of psychosis and other major mental disorders (Cotton et
al., 2006; Leon & Zachar, 1999)
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Previous personal experience with mental health services and participation in awareness
programmes or any form of psychoeducation is an important factor implicated both in mental
health literacy and help-seeking behaviour. Such persons are more positive to medical
interventions such as pharmacotherapy, psychotherapy and inpatient psychiatric treatment
(Dahlberg, Waern and Runeson; 2008). Psychoeducation-based interventions aimed at family
caregivers show significant improvement in knowledge and self-stigma. (Amaresha et al.,
2018)

Other determinants including education, age and socio-economic status also play a role in the
levels of mental health literacy and attitudes towards mental illness. Higher socio-economic
status, education levels and ages are generally associated with higher levels of mental health
literacy (Lauber et al., 2005; Mackenzie, Gekoski and Knox, 2006)

The past few decades have seen a tremendous change in the landscape of mental health services

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in the country. From a predominantly mental hospital based service, provision has now moved

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to general hospitals and primary health centres (Isaac, 1996). India has also witnessed the
implementation of the national mental health program (NMHP) and more recently the Mental

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Health Bill (2016) that aim to provide better access to services and to destigmatize mental

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illness in the population. Several advocacy groups, including media, have highlighted need for
scaling up services and providing comprehensive mental health care. (National Mental Health

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Survey of India, 2016). At the same time, there remains a significant treatment gap in the care
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of the mentally ill in India attributed to poor awareness, presence of stigma and limited
resources. (National Mental Health Survey of India, 2016).
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A time-trend analysis in this shifting Indian context can be instrumental in shedding light on
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important issues including changes in mental health literacy levels, areas of disparity, current
attitudes and levels of stigma with regard to mental illness.
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2. Method

The present study aims to examine the current level of caregivers’ mental health literacy and
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compare changes in levels over the period of 1993 to 2016 with two cross-sectional samples
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from the two time-periods.

2.1 Operational definitions

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Mental Health Literacy: Jorm (1997a) defines mental health literacy as “knowledge and beliefs
about mental disorders which aid their recognition, management or prevention.” In the present
study, this was measured utilizing the Orientation to mental illness scale (OMI).

Caregiver: In this study, caregiver is defined as a family member, living in the same household
as the patient and actively involved in the day-to-day care of the patient. If there are multiple
family caregivers in the family then the relative who spends the maximum time with the patient
and is involved in the direct care (e.g. supervising medication, ensuring personal hygiene etc.)
were included.

2.2 Tools

Patient data sheet: This included information about socio-demographic and clinical details
including patients’ age, sex, education, occupational status, marital status, diagnosis, age of
onset of illness, duration of illness.

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Caregiver data sheet: This included information regarding the caregivers’ demographic data

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such as age, sex, education, occupational status, income, marital status, background

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(rural/urban) duration of contact with patient and relationship with the patient. This sheet also

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had questions related to whether the caregiver has been provided with information regarding
the nature of the patients’ illness.

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Orientation towards mental illness scale (OMI, Prabhu, 1983): It is a 67-item clinical
administered scale measuring the individual’s degree of unfavourable orientation to mental
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illness. It provides scores on 13 factors, grouped into 4 areas including causation (folk belief,
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psychosocial stress, organic causation), perception of abnormality (non-restrained behaviour,
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weak cognitive control, fidgety behaviour bizarre behaviour), treatment (folk therapy,
psychosocial manipulation, physical methods of treatment) and after effects (hopelessness,
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hypo functioning, rejection of the mentally ill) that have been obtained through factor analysis.
The respondents are required to indicate the degree of agreement or disagreement on five-point
likert scale, ranging from completely disagree (1) to completely agree (5). Scores for each
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factor are obtained by summating the scale values for each item which comprise a particular
factor. The higher the score, the more unfavourable orientation it indicates. The score range
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falls between 67 to 335 for the total score and it requires about 30-40 minutes for completing
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the scale. This tool was used to study mental health literacy. The tool is available in English
and also has a Hindi translation provided.
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2.3 Procedure

The total sample size including both the studies done in 1993 as well as 2017 was 140
(n=80+60) collected through purposive sampling. Both the study samples comprised of the
family members of adult patients with a diagnosis of a psychotic or affective disorder (F20-29
and F30-39) established through clinical assessment based on ICD-10 and were collected from
the in-patient and out-patient departments of NIMHANS. Both the samples had the same
inclusion and exclusion criteria, operational definitions of caregivers and utilized the same
tools and procedures.

Inclusion criteria

Family caregivers of age 18 or above

at least 7 years of formal education

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proficient in either Hindi or English

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living with and directly involved with care of patient for a minimum of six months prior to

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participation in the study

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family caregivers of patients with illness duration of at least two years

Exclusion criteria

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Family caregivers with history of alcohol or other substance dependence or neurological or
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neurosurgical conditions.
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An attempt was made to include a proportional number of male and female family caregivers
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in the study. Family caregivers of patients in the outpatient and in-patient setting at the National
Institute of Mental Health and Behavioural Sciences (NIMHANS) fulfilling inclusion criteria
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were taken with informed consent. The study was approved by the institutional ethical
committee.
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2.4 Analysis

The variables measured included sociodemographic and clinical data of the patients and
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caregiver orientation towards mental illness. Chi-square was utilized to compare the data from
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2017 and 1993 on demographic details of caregivers, the level of significance was fixed at 0.5
level. Unpaired t - test of significance for unequal sample size was used to compare the values
of factors on OMI of the two studies. The level of significance was fixed at the 0.05 level.
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Descriptive statistics including mean, percentage and standard deviation were used to depict
the sociodemographic profile of the patients and caregiver.
 3. Results

The table elucidates the sociodemographic details of the patients whose relatives were part of
the study in 2017 and 1993. There appears to be significant difference in the age profiles of
patients in the two studies.

The table elucidates demographic details and comparison of caregivers from both studies. It

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indicates a significant difference in the profile of the caregivers pertaining to age, education

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and relation to patient.

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The table indicates significant difference on 9 of the 13 factors on OMI between the groups of

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present study and previous study done in 1993.

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4. Discussion
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4.1 Patient Sociodemographic Data
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Table 3.1 indicates that patients in the 2017 study were significantly younger than those studied
in 1993. This can be speculated to be indicative of higher mental health literacy and timely
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help-seeking behaviour. It also should be kept in mind that most of the major mental illnesses
like schizophrenia occurs in early adulthood (Hafner et al.,1994; Castle, Wessely, &
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Murray,1993; Perälä et al., 2007). In both studies, male patients outnumber females, possibly
owing to greater prevalence rates among men (Grohol, 2013). It could also be attributed to
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cultural factors due to which men may have better access to mental health services than women.
(Okojie,1994; Ojanuga & Gilbert, 1992).
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4.2 Caregiver Sociodemographic Data

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Caregivers in the study done in 2017 are significantly older with higher education levels than
those studied in 1993. In comparison to the data from 1993, significantly more of the caregivers
are parents and fewer are spouses. There is no significant difference in the gender distribution
of caregivers in the two studies. These changes appear to be reflective of the socio-economic
and family composition and structural changes in the country relating to urbanization, higher
education levels and later marriage and child-bearing ages. (Sharma & Kaur, 2017)
4.3 Caregivers’ orientation to mental illness

Table 3.3 illustrates the differences on the orientation towards mental illness of the participants
in present study from those in the Nautiyal study (1993). With regard to beliefs about the
causation of mental illness, respondents in the present study have significantly lower mean
scores on all factors viz. folk belief, psychosocial stress and organic causation.

This indicates that compared to the family caregivers in 1993, fewer family caregivers currently
attribute the cause of mental illness to magico-religious Similarly, currently among family

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caregivers there is lesser attribution of mental illness to psychosocial stress or organic causation

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than in the earlier study. These findings are in keeping with recent Indian studies where only a
small number of respondents felt supernatural causes were responsible for mental illness

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(Srinivasan and Thara, 2001; Salve et al, 2013). These findings have been attributed to the

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recent psychoeducation and community based mental health literacy programs which tend to
emphasize the bio-medical models of mental illness (Kermode et al., 2009)

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There appears to be a significant negative trend in the present study about the perception of
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abnormal behaviour among mentally ill. This indicates that the family caregivers in the present
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study perceive these behaviours as manifestations of mental illness to a greater degree than in
the 1993 study. Further, compared to family caregivers in 1993, they also believe that mentally
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ill persons have cognitive impairments preventing effective functionality. Similar findings
have been reported in other studies. For instance, Poreddi et al., (2015) found that 45.9% of the
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respondents in their study felt that mentally ill persons are unable to maintain friendships, are
dangerous (54%) and incapable of gainful employment (59.1%).
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In beliefs about treatment, there is a significant difference between the two on the factors of
psychosocial manipulation and physical methods of treatment. Since the items of these two
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factors focus on aspects such as environmental change, use of electroconvulsive therapy and
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brain surgery as treatment methods for mental illness, it is unsurprising that the family
caregivers of the present study did not endorse these treatment methods to the same extent as
in 1993. These findings are in line with other studies that indicate a greater number of
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individuals recognizing the need for medical intervention efficacy of psychotropic drugs on
symptoms of mental illness. (Schoonover et al, 2014; Loureiro et al., 2014, Angermeyer,
Matschinger and Schomerus,2013). However, it is noteworthy that there was no significant
difference with regard to belief in folk therapies for the treatment of mental illness by
participants of both studies. Religious practices are an integral part of the cultural fabric of
India. Since faith healers offer hope, emotional support, and a means of enlisting social support,
it may seem as a viable option to caregivers. Another reason for their popularity could be the
paucity of mental health professionals in India and the demands on their time and expertise that
are already placed (Veltman, Cameron and Stewart, 2002

Another reason for the beliefs regarding folk therapies remaining unchanged can be attributed
to the items that comprise this factor. Several items allude to the use of yoga and ayurvedic
remedies as effective treatments for mental illness. In the period between 1993 and 2016, the

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application of yoga therapy and ayurvedic methods for treatment for mental illness have greatly

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expanded and gained greater acceptance. This has been particularly true with regard to the use
of yogic practises. (Barton, 2011).

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In the perception of after effects of mental illness, there is no significant difference in factors

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of hopelessness and rejection of the mentally ill. Despite positive trends in other areas, there
continues to be a pervasive sense of hopelessness about the outcome of mental illness

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Therefore, this may indicate that discriminatory attitudes towards the mentally ill continue to
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persist despite positive trends in other areas of the OMI.
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This finding underscores the fact that attempts to improve mental health literacy in the
community must first consider the prevailing beliefs and develop intervention modules that can
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be integrated with the community’s belief system of mental illness.

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4.4 Limitation of study

The limitation of our study was the purposive nature of the sample thereby restricting its
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generalization to other samples with similar characteristics.

Since there are some significant differences in the age-range and the education levels of the
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caregivers studied, the results of this time-trend analysis should be interpreted with caution, as
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factors such as age, education and socio-economic status can also impact on the mental health
literacy levels.
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Since the samples of both studies were taken from the out-patient and in-patient departments
of a tertiary psychiatric facility, the caregivers all had the opportunity of gaining some amount
of psychoeducation from the mental health professionals that they met. Keeping this in mind,
it is evident that the level of mental health literacy in the selected population of caregivers of
the mentally ill may be very different from that of the general population, and hence cannot be
assumed to be reflective of level of mental health literacy in the community at large.
 5. Conclusion

A two-decade time-trend comparison indicates some positive trends in attitudes towards mental
illness, but hopelessness and belief in hypo-functioning of those with mental illness remain the
same. Such beliefs can have a negative impact on community based rehabilitation efforts and
re-integration of the mentally ill in society. While knowledge about mental illness can improve
with providing information about illness, reducing stigma and increasing acceptance require
more community-specific sustained efforts.

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There is a plurality of beliefs among respondents regarding causation of mental illness – folk

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beliefs, organic causation, and psychosocial stress exist side by side. This has significant
bearing for the mental health practitioner who must navigate a bio-psycho-social model of

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mental illness with other existing magico-religious beliefs in the community. A strategy that

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involves religious institutions in raising awareness about mental health issues while
considering public's socio-cultural attitudes may pave the way for greater potentialities of

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adequate psychiatric care, destigmatize the mental health system, and care provider (Ta, 2018).
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Another significant aspect involves the measure used to capture changing attitudes. If the items
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in the measure do not capture the advances made in the treatment of mental attitudes over time
then this will impact the results. This was also seen in the measure used in the current study
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which does not reflect the acceptance of yoga and other Indian therapies in the treatment of
mental illness. Therefore, the items of the measures should also be revised from time to time.
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Conflict of interest

None
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Sources of Support
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This research did not receive any specific grant from funding agencies in the public,
commercial, or not-for-profit sectors.
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E PT
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A
Tables:

Table 3.1
Sociodemographic data of the patients in current study (N = 60) and
previous study (N=80)

Patient data N = 60 Percentage N = 80 Percentage Chi square

(%) (%) value
Age in years
18 – 29 36 60 31 38.75 7.003*

T
30 – 39 16 26.70 27 33.75
40 – 49 8 13.40 22 26.82

IP
Gender

R
Male 38 63.30 43 53.75 1.291
Female 22 36.70 37 46.25

SC
*significant at the 0.05 level

U
N
Table 3.2
A
Demographic details of family caregivers on current study and previous study in 1993
Caregiver N = 60 Percentage N=80 Percentage Chi-
M

data (Current (%) (Previous (%) square

study) study) value
Age in
ED

years
18 – 29 4 6.70 22 27.00 34.205**
30 – 39 4 6.70 28 35.00
PT

40 above 52 21.70 30 37.00

Gender
E

Male 20 33.30 35 45.00 1.559

CC

Female 40 66.70 45 55.00

Education
A

in years
7 – 10 10 16.70 31 38.75 13.664**
11 – 12 17 28.30 22 37.50
13 – 15 20 33.30 30 37
16 – 17 13 21.70 5 6.75
 Relation to
patient
Parent 45 75.00 35 43.75 17.609**
Spouse 5 8.00 30 37.50
Sibling 10 16.70 15 18.75

*Significant at 0.05 level; **Significant at 0.01 levels

T
IP
Table 3.3

R
Comparison of groups on OMI of current study and previous study in 1993

SC
OMI Factors Current study Previous Study Max. t value
N = 60 N = 80 score

Folk Belief
Mean
27.60
S.D
10.06
Mean
36.79 U S.D
12.11 60 4.771**
N
Psychosocial Stress 39.81 8.93 42.76 12.17 65 2.121*
A
Organic Causation 9.66 2.77 14.05 6.92 20 4.639**
Non – restrained 23.88 5.97 19.38 7.95 30 3.675**
M

Behaviour
Weak cognitive control 14.5 3.28 9.81 2.08 15 10.324**
ED

Fidgety behaviour 7.68 1.85 6.53 6.96 10 1.243

Bizarre behaviour 8.86 2.66 10.71 2.58 15 4.143**
Folk therapy 13.85 4.24 13.91 4.87 25 0 .076
PT

Psychosocial manipulation 10.55 2.49 12.44 2.06 15 4.91**

Physical methods of 3.85 1.95 5.80 1.23 10 7.233**
treatment
E

Hopelessness 17.46 6.32 19.55 6.53 30 1.900

CC

Hypo-functioning 12.81 3.58 14.04 5.28 20 1.555

Rejection of mentally ill 13.16 2.82 15.93 6.33 20 3.160**
*significant at the 0.05 level; **significant at the 0.01 level
A