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The Effectiveness of a Multi-Pronged Psycho-Social Intervention Among People With Mental Health and Epilepsy Problems -A Pre-Post Prospective Cohort Study Set in North India

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Background: In low- and middle-income settings, many people with mental health problems cannot or do not access psychiatric services. Few studies of people with epilepsy and mental problems have evaluated the effectiveness of a predominantly psycho-social intervention, delivered by lay community workers. The aim of this study was to assess the effectiveness of a community-based complex mental health intervention within informal urban communities while simultaneously addressing social determinants of mental health among disadvantaged people with severe and common mental disorders (CMDs), and epilepsy. Methods: In this observational, prospective cohort study set in Uttarakhand, India, the lay-worker led intervention included psychoeducation, behavioural activation, facilitation of access to care, and facilitated psycho-social support groups. Participants were categorised as having a severe or CMD or epilepsy and assessed 5 times over 24 months using primary outcome measures, including the Patient Health Questionnaire (PHQ9) (severity of depression), the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the Recovery Star, and scoring of a bespoke Engagement Index. Analysis included descriptive statistics as well as hierarchical linear regression models to report fixed effects as regression coefficients. Results: Among the 297 (baseline) participants only 96 people (31%) regularly used psychotropic medication (at least 4 weeks) and over 60% could not or did not consult a psychiatrist at all in the study period. Nonetheless, people with CMDs showed a significant reduction in their depression severity (PHQ9: B=-6.94, 95% CI -7.37 to -6.51), while people with severe mental disorders (SMDs) showed a significant reduction in their disability score (WHODAS 2.0: B=-4.86, 95% CI - 7.14 to- 2.57). People with epilepsy also reduced their disability score (WHODAS 2.0: B=-5.22, 95% CI -7.29 to -3.15). Conclusion: This study shows significant improvements in mental health, depression, recovery, disability and social engagement for people with common and SMDs, and epilepsy, through a community-based intervention that was nonpharmaceutical. It provides preliminary evidence of the value of predominantly psycho-social interventions implemented by lay health workers among people with limited or no access to psychiatric services.
The Effectiveness of a Multi-Pronged Psycho-Social
Intervention Among People With Mental Health and
Epilepsy Problems - A Pre-Post Prospective Cohort Study
Set in North India
Kaaren Mathias1,2*
ID
, Dale Corcoran3
ID
, Pooja Pillai1
ID
, Smita Deshpande4
ID
, Miguel San Sebastian2
ID
Abstract
Background: In low- and middle-income settings, many people with mental health problems cannot or do not access
psychiatric services. Few studies of people with epilepsy and mental problems have evaluated the effectiveness of a
predominantly psycho-social intervention, delivered by lay community workers. The aim of this study was to assess
the effectiveness of a community-based complex mental health intervention within informal urban communities while
simultaneously addressing social determinants of mental health among disadvantaged people with severe and common
mental disorders (CMDs), and epilepsy.
Methods: In this observational, prospective cohort study set in Uttarakhand, India, the lay-worker led intervention
included psychoeducation, behavioural activation, facilitation of access to care, and facilitated psycho-social support
groups. Participants were categorised as having a severe or CMD or epilepsy and assessed 5 times over 24 months using
primary outcome measures, including the Patient Health Questionnaire (PHQ9) (severity of depression), the World
Health Organization Disability Assessment Schedule (WHODAS 2.0), the Recovery Star, and scoring of a bespoke
Engagement Index. Analysis included descriptive statistics as well as hierarchical linear regression models to report fixed
effects as regression coefficients.
Results: Among the 297 (baseline) participants only 96 people (31%) regularly used psychotropic medication (at least
4 weeks) and over 60% could not or did not consult a psychiatrist at all in the study period. Nonetheless, people with
CMDs showed a significant reduction in their depression severity (PHQ9: B = -6.94, 95% CI -7.37 to -6.51), while people
with severe mental disorders (SMDs) showed a significant reduction in their disability score (WHODAS 2.0: B = -4.86,
95% CI - 7.14 to- 2.57). People with epilepsy also reduced their disability score (WHODAS 2.0: B = -5.22, 95% CI -7.29
to -3.15).
Conclusion: This study shows significant improvements in mental health, depression, recovery, disability and social
engagement for people with common and SMDs, and epilepsy, through a community-based intervention that was non-
pharmaceutical. It provides preliminary evidence of the value of predominantly psycho-social interventions implemented
by lay health workers among people with limited or no access to psychiatric services.
Keywords: Psychosocial, India, Mental Health, Intervention, Epilepsy
Copyright: © 2020 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article
distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/
by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is
properly cited.
Citation:
Mathias K, Corcoran D, Pillai P, Deshpande S, San Sebastian M. The effectiveness of a multi-pronged psycho-
social intervention among people with mental health and epilepsy problems - a pre-post prospective cohort study set in
north India.
Int J Health Policy Manag. 2020;x(x):x–x. doi:10.34172/ijhpm.2020.62
*Correspondence to:
Kaaren Mathias
Email: kaaren@eha-health.org
Article History:
Received: 18 October 2019
Accepted: 20 April 2020
ePublished: 12 May 2020
Original Article
Full list of authors’ affiliations is available at the end of the article.
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Background
Mental ill-health is the leading cause of years lived with
disability1 and those affected are socially excluded, have
reduced quality of life and a lower life expectancy.2 In India
there is a life-time prevalence of 13.7% for mental ill-health and
a treatment gap of 83%3 while the prevalence, and treatment
gap for epilepsy is 0.6% and 70% respectively.4 Meanwhile,
less than 1% of the national health budget is earmarked for
mental health and epilepsy related services5 in a health system
characterised by weak primary health services and a large,
profit-focused and unregulated private sector.6 Particularly
in rural areas there are very significant human resource gaps
with one Government psychiatrist to cover several million
population in many districts. Global responses addressing
mental ill-health have primarily focused on provision of
integrated psychiatric and drug treatments for those affected.7
While access to services is important, mental health and well-
being require broader responses that also address social and
development domains.8 Inclusion of community and social
development approaches in global mental health programmes
increases mental well-being, and access to care and improves
outcomes.7-9 The use of lay workers has been a key approach to
increase access to care in settings where there are few mental
health professionals, and furthermore, to increase psycho-
social care which is time consuming to offer.7,10,11
Indias National Mental Health Programme addresses
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–82
Implications for policy makers
Trained lay workers can provide effective psycho-social support for people with mental health problems in settings with limited access to
psychiatric care.
Psycho-social support that includes dialogue to increase knowledge on mental health, behavioural activation and participation in groups can
improve mental health and social engagement.
Psycho-social support can improve mental health and social participation, even for people with mental health problems who do not access
regular psychiatric care.
Disability associated with severe mental illness and epilepsy can be reduced with psychosocial support from lay workers.
Implications for the public
In North India many people with mental health problems can access psycho-social support more easily than consult with the limited number
of available state psychiatrists. Few studies from community settings evaluate the value of primarily psycho-social interventions among people
with limited access to care. This study aimed to assess the effectiveness of a community-based ‘real-life’ intervention among disadvantaged people
with severe and common mental disorders (CMD), and epilepsy. The intervention included home-based visits, building knowledge, encouraging
daily activities and responsibilities (behavioural activation) and assisting people to visit the nearest Government psychiatrist if required. The 297
participants were assessed 5 times over 24 months using measures of mental health and disability. Participants reported improved mental health,
increased community participation and reduced disability even though two-thirds of them never visited a mental health professional. This study
supports the value of psycho-social interventions implemented by lay health workers for social improvement, even when people do not access
psychiatric services.
Key Messages
epilepsy as well as mental ill-health12 and has had a primary
focus on increasing access to care by increasing the numbers
of psychiatrists and access to medicines.13,14 Other factors that
influence access to care include non-Western explanatory
frameworks, different idioms of distress and stigma. Recent
community-based neuro-psychiatric interventions in India
have demonstrated the value of the following programmatic
components: training of lay workers to deliver care (task-
sharing) to increase access to care in a setting where health
professionals are scarce,7,10,11 improving knowledge and
skills for self-care for those affected (psycho-education
and community-based-rehabilitation), promoting social
inclusion, and supporting access to care for mental,
neurological and physical health problems.15,16,17 In most
studies to date the contribution of lay workers has been in
identification of people with mental or neurological problems
and in facilitating access to care (task-sharing or shifting).7,10,11
There are almost no studies in high or low income settings
that evaluate the value of psychosocial support and care in
settings where people with mental health problems cannot or
do not access care.18,19
Globally there is an urgent call for impact evaluations of
community-based mental health programmes in low resource
and ‘real-life’ settings.20 The aim of this study was to assess
the effectiveness of a multi-pronged community development
and mental health intervention among people with mental
health problems and epilepsy in Uttarakhand, North India.
Methods
Setting
This single-centred prospective cohort observational study
with no control group was set in peri-urban communities in
Uttarakhand, India and conducted between December 2015
and November 2017. When this study was implemented,
the National Mental Health Programme had not been
implemented in Uttarakhand state and 5 government
psychiatrists provided services for the states’ 10 million
people. The State Mental Health Institute in Selaqui (up to 2
hours travel from study locations) offered consultation and
psychotropic medicines for minimal charge.
Burans, the implementing partner, is a community mental
health partnership project. A baseline survey described 6%
depression prevalence and those identified with depression
described a treatment gap of 96%.21 The Burans field teams
worked in the 3 sites of Sahaspur (rural), Mussoorie (small
town) and Kanwali road (informal urban community).
Participants
Participants were community members with epilepsy, mental
health problems or psycho-social disability (PPSD) who
were referred by community leaders and the government
Accredited Social Health Activist workers or self-referred
between September and November 2015. Participants were
assessed for inclusion by trained community health workers
during 2 home visits in December 2015. Training is described
below (intervention section).
Inclusion criteria: People describing anxiety, unexplained
somatic symptoms and/or depression who were able to
fulfil most daily responsibilities were categorised as having
a common mental disorder (CMD). People (or their
caregivers) describing loss of social networks, lack of self-
care and/or auditory hallucinations or delusions and unable
to fulfil their daily responsibilities were assessed as having a
severe mental disorder (SMD). People (or their caregivers)
describing 3 or more discrete acute episodes of seizures in
the past year were assessed as having epilepsy. Classifications
were verified by either a trained psychiatric social worker
or a health professional. Epilepsy was included in the study
for 3 reasons: firstly, because in North India, the dominant
explanatory framework for unexplained behaviour includes
people with epilepsy along with other forms of mental illness;
secondly, because the World Health Organization (WHO)
groups neurological and psychiatric disorders together5 and
thirdly, because the treatment and management of epilepsy is
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–8 3
included in Indias National Mental Health programme and it
is widely treated by psychiatrists.22
Exclusion criteria: People who were aged under 14 years
and people without a primary caregiver (as the intervention
was strongly linked with caregivers).
Intervention
The intervention was built on the theoretical framework of
community mental health competence with a focus on the 3
key domains of knowledge, safe social spaces and partnerships
for action.23 The intervention sub-components were further
developed through a literature review of existing community
mental health and rehabilitation programmes from India
and other low- and middle-income countries. A published
realist case-study further details the theoretical basis of the
intervention and the intervention process.17 Key mechanisms
supporting the intervention include increasing mental health
knowledge in dialogue, using peer-to- peer platforms and
informal conversations, increasing safe social spaces (social
inclusion) by building on informal and formal psycho-social
support groups to increase critical reflexive conversations
(conscientization) and supporting new relationships of peer
support and friendship. Mechanisms supporting the third
domain of partnerships for action involved engagement with
rights based approaches to access entitlements and groups
acting together for mental health.17
The intervention included individual and group components
and was delivered by Burans community mental health
workers (CMHW) who visited participants at their homes
approximately fortnightly. CMHW were selected through a
process of community consultation and were required to have
completed high school. CMHW received 15 days of training
using a validated training manual24 and a further 26 days of
training during the implementation phase. Training topics
included identifying and assessing people with mental ill-
health, using assessment tools and group facilitation, psycho-
social support, counselling skills, and use of a care plan.25
Interventions were delivered by CMHW through 30–60
minutes home-based visits, every fortnightly where the same
CMHW worked with the same participants. Intervention
components had a core standard provision at an individual
level, with additional bespoke components added by CMHW
to respond to diverse socio-economic needs and participant
engagement. Caregivers were a key part of the intervention and
were present at nearly all CMHW– participant interactions.
The Individual level components included:
• Psycho-education – increasing mental health knowledge
in dialogue (not didactic instruction) with participants
and carers, seeking to understand their explanatory
frameworks.
• Active listening and motivational problem solving –
supporting participants together with carers, to express
emotions, identify and solve problems.
• Behavioural activation – reinforcing and supporting
steps to recovery and increased engagement in daily
responsibilities, together with caregivers.
• Promoting access to care: People with SMD and epilepsy
and people with CMD scoring more than 15 on the
PHQ9 (Patient Health Questionnaire) assessment as
well as those not improved after 4 weeks of psycho-
social support were supported to consult the nearest
Government psychiatrist. CMHW would accompany
PPSD to the doctor for 2 visits and also provided up to
USD3 per person to assist with transport costs.
• Providing relevant and culturally appropriate support eg,
accompanying an anxious PPSD to walk and drink ‘chai’
(tea) with a neighbour or accompanying them on public
transport to the health provider.
The group level components comprised:
• Psycho-social support groups – these groups were
offered to all participants and around 60% participated.
They had mixed membership of PPSD and caregivers
and comprised ten modules/meetings encouraging
conscientization and critical reflection using a pictorial,
story-based resource.17
• Financial inclusion opportunities – CMHW promoted
household budgeting and savings and livelihood
initiatives to psycho-social support groups. Four groups
opted to form a micro-credit and saving Self Help Group.
Over half of participants chose to join in a livelihood
initiative (primarily sewing products for local sale).
• Accessing entitlements – education regarding
Government schemes and use of India’s Right to
Information Act was conducted with all participants.
Additional intervention components delivered to
40% of participants who were more socio-economically
disadvantaged or who had a SMD included:
• Facilitating access to medical care – accompanied and
provided financial support for transport or medicines to
consult the Government psychiatrist for 2 visits (up to
Rs200 = $US3).
• Greater visit frequency and duration.
CMHW documented intervention fidelity in the participant
care plan after each visit with a summary of their discussion,
intervention, and action plans for the ensuing fortnight.
Attendance registers, and minutes of group meetings were
also maintained.
Four assessment tools were used to measure outcomes:
1. The “Recovery Star tool”26 is a subjective tool rating
function from 1–10 (lowest to highest) in the following
9 areas: managing mental health, self-care, living skills,
social networks, paid work, family relationships, addictive
behaviour, household responsibilities, identity and self-
esteem, trust and hope. Scoring was done collectively by
participants (and/or carer), and CMHW using a locally
developed Hindi-medium scoring rubric.
2. The “Engagement Index” was developed by participants,
carers and the Burans team using outcome mapping
approaches27 to reflect what mattered most to people
affected in their daily functioning. It built on a series of 7
outcome statements as follows: the person participates in
their own therapy; the person has good knowledge and
understanding on mental health; the person contributes
to household responsibilities, and to household income
generation; the person has returned to employment/
school; the person participates in community leadership
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–84
and the person speaks publicly about mental health.
Participants and carers discussed and agreed together on
the statements and scoring, with ‘Good’ (‘3’) ‘Medium
(‘2’) and ‘Bad’ (‘1’). A composite score (equal weighting)
was generated for each participant by summing their
scores for the 7 statements (range 7–21).
3. The PHQ-9 is a nine-question probe on symptoms
and severity of depression such as enjoyment of usual
activities, and self-harm ideation which has been
validated in India.28,29 Each symptom is scored as never
(0), at times (1), often (2), all the time (3) and a high
score indicates greater depressive symptoms.
4. The World Health Organization Disability Assessment
Schedule (WHODAS 2.0) measures the severity of
disability in activities of daily living, cognition, mobility,
social ability and participation over the last 30 days
using a 5-point Likert scale.30 It has strong properties in
identifying PPSD and was co-developed in India and has
been validated and used widely.31 We used the 12-item
interviewer administered version.
Data Collection
Burans team members were trained in consent taking and
intervention-documentation over 3 days. Baseline data
collected in December 2015 included socio-demographic
details, carer arrangements and outcome assessments.
All participants were assessed with the Recovery Star and
the Engagement Index. Additionally, people with CMD were
assessed with PHQ9 while those with SMD and epilepsy were
assessed with the WHODAS 2.0 (T1) measured baseline,
and (T2) was carried out 3 months later, while subsequent
measures (T3-5) were carried out at 6-monthly intervals.
While measures were completed by the CMHW, scoring
and documentation was reviewed and validated by the team
leader and monitoring officer, and care plan data were verified
monthly by the monitoring officer who was independent of
the daily implementation.
Data Analysis
Data was collected on paper forms, translated into English
and entered onto an electronic spreadsheet, anonymised
and stored in password protected data files. Firstly, we
descriptively analysed the participants’ socio-demographic
profile. Secondly, given the panel structure of the data,
hierarchical linear regression models were used for reporting
the fixed effects as regression coefficients (β) with 95%
confidence intervals. In these analyses, the health outcomes
over time were regressed on time-varying covariates, with
time representing the level 1 unit, which was nested within
individuals (level 2 unit). First, an empty model was run
without any predictors, then time was included, and in the
final model, time and the individual-level predictors (gender,
age, caste- an ancient Indian measure of social position,
religion, occupation, house and caregiver) were incorporated.
A sub-analysis of the Engagement Index examined
difference in mean scores for individual statements using
a t test. Statistical significance of P < .05 was used for all
measures.
Results
Of the 302 people who were identified, 297 consented
to participate (98.3%). Community leaders referred 110
participants to the team, while Accredited Social Health
Activist workers referred 58 participants. The remaining
134 participants were self-referred. After 24 months of
implementation, 213 people (71.7%) completed the end-line
assessments. The median number of visits from a CMHW
was 13.0 and the average number was 16.2. The sequence of
the attrition of the 84 participants is summarised in Figure 1.
Reasons for dropout included out-migration from the district
(37%) and lost to follow-up (63%).
A profile of the participants assessed at baseline showed a
higher representation of women, people over 60 years of age
and socio-economically disadvantaged (unemployed and
unskilled labourer) participants than the Dehradun district
population32 (Table 1).
The majority of participants were aged 18–49 years
and more than two-thirds identified as being from the
disadvantaged groups of ‘Other backward castes’ (OBC) and
Scheduled castes/tribes (SC/ST). The relative disadvantage of
this study’s participants was also evidenced by the fact that
only 10.4% of participants were employed as professionals or
in skilled labour and that 38% of participants were living in
housing made of temporary materials.
As expected, baseline levels of disability and mental illness
were greatest for people with SMD and least for people with
CMD (Table 2). The difference in scores between end-line
and baseline showed a statistically significant improvement
in every measure of mental health, disability and recovery for
participants with CMD, SMD and epilepsy. The effect sizes
were large, particularly for people with CMD.
Of 297 people, only 123 (41.4%) visited a psychiatrist or
neurologist at least once during the 24-month study period.
Psychotropic medication had been utilised at least once by
Figure 1. Overview of Study Sample and Attrition Over 24-Month Study Period.
Abbreviations: CMD, common mental disorder; SMD, severe mental disorder.
Referrals
(n = 302)
Baseline (T1 = 0 months) (n = 297)
CMD = 209
SMD = 41
Epilepsy = 47
2nd Assessment (T2 = 3 months)
(n = 277)
4th Assessment (T4 = 17-18 months)
(n = 229)
3rd Assessment (T3 = 8-9 months)
(n = 253)
Endline (T5 = 23-24 months) (n = 213)
CMD = 156
SMD = 29
Epilepsy = 28
Did not consent (n = 5)
Migrant (n = 15)
Lost to Follow up (n = 5)
Migrant (n = 11)
Lost to Follow up (n = 13)
Migrant (n = 0)
Lost to Follow up (n = 24)
Migrant (n = 6)
Lost to Follow up (n = 10)
Attrition
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–8 5
just 40.4% (n = 120) and 32.3% (n = 96) had used medication
regularly (for a minimum of 4 weeks consecutively), meaning
the majority of participants were primarily participating in
psychosocial interventions.
Table 2 shows the change in means of the different outcomes
and effect sizes from baseline (T1) to end-line (T5) adjusted
for covariates for CMD, SMD, and epilepsy. In all 3 conditions
and with all outcome measures, there was a statistically
significant change between the 2 periods with increases in
the Recovery star and the Engagement index and decreases in
PHQ9 and WHODAS 2.0.
The changes in scores measures across the 5 assessments
are illustrated in Figure 2a for CMD, in Figure 2b for
SMD and in Figure 2c for epilepsy. The trends showed
improvements in scores between baseline and end-line with
the largest improvements occurring in the first 12-18 months
of participation.
People with CMD show a large reduction in their depression
Table 1. Socio-Demographic Profile of Participants Recruited at Baseline
Descriptive Variable Male
No. (%)
Female
No. (%)
Total
No. (%)
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 0 (0)  

   
   
   
   

   
   
 0 
a
   
OBC   
   

a 
   
    
           
 
scores over time (PHQ9) and consistent improvement in their
recovery and engagement scores. Figure 2b also demonstrates
a steady increase in recovery measures, and a reduction in
levels of disability measured by WHODAS 2.0 for people with
SMD and epilepsy, however a plateau was observed between
T4 and T5.
Analysis of individual statements of the Engagement Index
score (detailed in Methods) showed significant improvement
in mean scores for every Engagement statement for people
with CMD and in community participation and leadership,
household contribution and social inclusion for people with
SMD and epilepsy.
People with CMD, SMD, and epilepsy all showed statistically
significant improvements (P < .05) in all outcome measures
over the 5 time points.
Discussion
This 2-year prospective study demonstrates statistically
significant improvements in mental health, recovery, disability
and social engagement among people affected by common
and SMDs or epilepsy, with a multi-pronged community-
based mental health intervention. These outcomes were
objectively and subjectively measured using validated psycho-
metric tools with further verification through subjective
measures scored by participants and carers together.
Contribution of Lay Workers
This paper underlines the value of lay worker psycho-social
support among people with mental health problems and
epilepsy where the majority of participants were not accessing
psychiatric care. While there is good evidence supporting the
contribution of lay workers in collaborative care for CMD in
low- and middle-income country, an editorial reviewing next
research steps to meet the needs for people with SMD in these
countries underlined that there are almost no evaluations of
community-based interventions among disadvantaged people
with severe mental illness who have no access to care.33 This
study addresses aspects of this gap with statistically significant
evidence showing the benefit of psycho-social care even for
those without psychiatric care.
CMHW in this study provided effective psycho-social
care to people who would not otherwise access any care,
underlining the contribution of non-specialist community
workers (CMHW) in detection, psychosocial therapy,
support and group interventions, which is evidenced in by a
studies in high income countries showing that psycho-social
interventions via non-specialist workers can significantly
improve quality of life and mental health for people with
severe mental illness.19 The role of CMHW in identifying
and referring affected persons ie, ‘task shifting’ in the absence
of professionals is a common characteristic of global mental
health interventions.34 However, in this study, CMHW
additionally performed roles not typically provided by a mental
health professional such as accompanying to health services,
home-visits and providing contextually relevant practical
support that contributed to positive outcomes even for people
with SMD or epilepsy.35 The CMHW contributions were
broader and meshed with community ecology, development
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–86
and dialogue36 and were different in substance to task-sharing
as the ‘stop-gap’ measure framed in vertical global health
interventions.18 Ongoing research and programmes that
build on task-sharing in global mental health must expand
understandings of the contributions of CMHW and evaluate
these beyond the traditional narrow boundaries outlined for
stepped-care and task-shifting.18
Value of Multi-pronged Intervention that Addressed Mental
Health Determinants
This intervention responds to calls in global mental health for
interventions that respond to social determinants for mental
ill-health8,25 and did this by increasing social inclusion (safe
social spaces) and by creating opportunities for participation
in micro-credit/savings groups and livelihood initiatives
(increased income, social, and financial inclusion). There is a
strong link between social determinants of mental health such
as poverty, income, social stigma and social connectedness
and mental ill-health.37 Interventions in this study addressing
broader social determinants of mental ill-health may have
supported the positive outcomes through psychosocial
support groups and peer to peer friendships. Furthermore,
micro-credit and savings and livelihood opportunities
may have improved economic status of participants. The
Table 2. Change in Means (SD) of Outcomes and Effect Sizes (β and 95% CI) From Baseline (T1) to End-line (T5) Adjusted for Covariates for CMD, SMD and Epilepsy
People With CMDBaseline, n = 209 End-line, n = 156 Eect Size (95% CI)
a  
  
a   
People With SMDs n = 41 n = 29
   
  
a)  
People With Epilepsy n = 47 n = 28
a  
  
a  
   
 
a


Figure 2. Trends in Mean Scores in the Different Outcomes (Recovery Star, PHQ9, Outcome Statements, WHODAS 2.0) According to the 3 Categories of Mental
Health Problems: (a) CMD; (b) SMD and (c) Epilepsy. Abbreviations: WHODAS 2.0, World Health Organization Disability Assessment Schedule; CMDs, common
mental disorders; SMDs, severe mental disorders; PHQ9, Patient Health Questionnaire.
(a) (b)
(c)
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–8 7
relationship between socio-economic hardship and mental
health is 2-way and mental health interventions can lead
to improved economic outcomes for participants and
accompanied by significant socio-economic improvement.37
Additionally, intervention components to promote social
participation and livelihood opportunities in this study may
have also achieved positive results by increasing freedom of
movement for women and challenging gender hierarchies,38
as well as protecting participants from the negative impact of
social drift and impoverishment which are prevalent among
people with mental health problems in low-income contexts.37
Proposed mediating mechanisms supporting the improved
social inclusion and mental health include increased social
contact, increased peer friendships and rehearsal of social
and communication skills facilitated by participation in
psycho-social support groups.38 Community mental health
interventions must include and evaluate components
addressing social determinants and equity, and include realist
type components to understand what works for whom, under
what circumstances.7,20,39,40
Building Knowledge Through Dialogue
A unique feature of this intervention was to increase
knowledge and awareness around mental health and epilepsy
through dialogue (instead of didactic instruction) with the
participants and their carers. This platform of discussion
allowed the production of k
nowledge in a relational process
rather than the more traditional approach of psycho-education
where k
nowledge flows unidirectionally from experts
to community members.
41 Knowledge that
is shared and
debated can allow integration of unfamiliar medical knowledge
with
local explanatory frameworks and understandings.42 In
this study, greater awareness about mental health, epilepsy
and supported help-seeking may have facilitated the observed
improvements in mental health status. In the context of
North India where there are entrenched social hierarchies
and the voice of the doctor/expert is elevated, democratising
knowledge production seems particularly important to allow
knowledge that can be actioned by individuals, and may have
contributed to improvements in recovery and participation.41
Further programmes and research that examine how to build
mental health literacy, engage positively with local knowledge
and culture, and that seek to co-produce knowledge with
people with lived experience in diverse Indian contexts is
required.43
Methodological Considerations
This study has some important limitations. As there was no
control group, we cannot be sure the observed improvements
can be attributed to the intervention only. We did not exclude
people who were migrant labourers at enrolment and out-
migration led to attrition of n = 31 participants reflecting
the social disadvantage of participants. Overall more than
one quarter of participants were lost to follow-up leading to
a potential selection bias that could affect the interpretation
of the estimates. However, a sub-analysis of enrolment data
showed that the socio-demographic profile of participants
who did not complete the study was not statistically different
from those who completed the intervention. CMHW
who delivered the intervention were not blinded to the
outcome measures which could have increased information
bias. As some scales were built on subjective responses by
participants (Engagement Index and Recovery Star), scores
may be inflated by social desirability bias. Further, the
Recovery star measure was not developed for use by people
with epilepsy and is not validated in this group. The most
notable improvements in function occurred within the first
12–18 months of the intervention suggesting that a shorter
intervention period could perhaps achieve similar outcomes
but may still require ‘booster’ doses. Further research should
measure outcomes in a controlled cohort study followed for
several years after completion of the intervention to clarify
whether improvements are sustained.
Conclusion
This study shows that a lay-health worker delivered multi-
pronged mental health and community development
intervention can achieve significant improvements in
mental health, recovery and social participation for people
with CMD, SMD and epilepsy in a poor resource setting.
Further research should examine the role and contribution of
lay workers in a more nuanced way, and further assess the
effectiveness of psycho-social care in settings where there are
few or no mental health professionals.
Acknowledgements
The intervention and data collection of this study was
supported by members of the Burans team: Jeet Bahadur,
Samson Rana, Kundan Goshan, Atul Goodwin, Pooja Bhatt,
Kakul Krishna, Laxman Balan, Ronnie Issachar and the
late Arun Sherring, as well as the hardworking community
worker team are acknowledged here. Support to this work in
logisitics and programme implementation from AKS-HOPE,
OPEN, the Uttarakhand CHGN cluster and the Emmanuel
Hospital Association is also acknowledged and appreciated.
Ethical issues
All participants provided written consent, with additional written consent provided
by caregivers of all participants with SMD and those under 18 years of age.
Identifiable data was only accessible by the relevant CMHW and 2 researchers,
and data storage followed research ethics guidelines. Confidentiality was strictly
maintained. Ethical approval for this study as protocol 181 was granted by the
Institutional Ethics Committee of the Emmanuel Hospital Association, New
Delhi in June 2015.
Competing interests
Authors declare that they have no competing interests.
Authors’ contributions
This study was conceived by KM who also wrote first and subsequent drafts,
data acquisition and preliminary analysis was done by PP and DC, advanced
analysis and supervision was completed by MSS, literature review and
supervision by SD.
Authors’ affiliations
1Herbertpur Christian Hospital, Emmanuel Hospital Association, Uttarakhand,
India. 2Department of Epidemiology and Global Health, Umeå University,
Umeå, Sweden. 3Northland District Health Board, Whangarei, New Zealand.
4Dr. RML Hospital and Post Graduate Institute of Medical Education & Research
(PGIMER), New Delhi, India.
Mathias et al
International Journal of Health Policy and Management, 2020, x(x), 1–88
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... In our study, the researcher-participant interaction through frequent monitoring via social media (Whatsapp) during the intervention period, interviews about psychosocial content and application of a physical intervention (tDCS) may act as a social intervention and can explain in part the clinical improvement observed in both groups. Around the world, many types of social and educational interventions are being developed as effective interventions for the improvement of psychiatric disorders and quality of life (Elafros et al., 2013;Nagy and Moore, 2017;He et al., 2019;Mathias et al., 2020;Pandey et al., 2020). These models of care provided by a multidisciplinary team specialized in epilepsy can improve the quality of care provided when compared to exclusive medical care, since they provide greater availability of time for care if they are divided among professionals. ...
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