Shadows and light examining community mental health competency in North India
Kaaren Mathias
Department of Public Health and Clinical Medicine Epidemiology and Global Health Umeå 2016
Shadows and light
Examining community mental health competence in North India
Kaaren Mathias
Department of Public Health and Clinical Medicine Epidemiology and Global Health Umeå University, Sweden 2016
Responsible publisher under Swedish law: the Dean of the Medical Faculty
This work is protected by the Swedish Copyright Legislation (Act 1960:729)
New Series No. 1856
ISBN: 978-91-7601-588-9
ISSN: 0346-6612
Copyright@2016: Kaaren Mathias
Electronic version available at http://umu.diva-portal.org/
Printed by: UmU-tryckservice, Umeå University, Sweden 2016
All the variety, all the charm, all the beauty of life is made up of light and shadow.
Leo Tolstoy, Anna Karenina
Photo credit – Front cover – Caleb Smallwood
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Circling around God – the Ancient Tower Rainer Maria Rilke
I live my life in growing orbits which move out over the things of the world.
Perhaps I can never achieve the last, but that will be my attempt.
I am circling around God, around the ancient tower and have been circling for a thousand years and I still do not know if I am a falcon, a storm or a great song.
Translation: Robert Bly, Selected Poems of Rainer Maria Rilke, A Translation from the German and Commentary by Robert Bly
This poem by the German poet Rainer Maria Rilke (who himself journeyed through mental distress) encapsulates the deep human urge to engage in the search for meaning, understanding and ultimately truth. It explains why I wanted to start this journey seeking wisdom as I seek to strengthen community mental health competence in North India.
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Table of Contents Circling around God – the Ancient Tower ...... v Table of Contents ...... vii Academic abstract - English ...... ix Revised conceptual model – community mental health competency ...... x Plain language summary – English ...... xi Plain language summary – Hindi ...... xiii Researcher stance...... xv Where did this thesis come from? ...... xvi Original papers ...... xvii Glossary ...... xviii Acronyms used ...... xxi 1.0 Introduction ...... 1 1.1 The importance of global mental health ...... 1 1.2 Community mental health in India ...... 7 1.3 Justification of study ...... 10 1.4 Study objectives ...... 10 1.5 Theoretical framework ...... 11 2.0 Context and study design ...... 13 2.1 Study setting ...... 13 2.2 Organisation that hosted this research ...... 15 2.3 Study design ...... 15 3.0 Methods ...... 17 3.1 Qualitative studies ...... 17 3.2 Quantitative studies ...... 18 3.3 Ethical considerations ...... 20 4.0 Findings and discussion ...... 23 4.1 Knowledge ...... 26 4.2 Safe social spaces ...... 29 4.3 Access to care ...... 34 4.4 Social determinants of mental health ...... 37 4.5 Revised conceptual framework of community mental health competency ...... 40 5.0 Methodological considerations ...... 42 5.1 Ethical issues – capacity for consent ...... 42 5.2 Reflexivity on positionality ...... 43 5.3 Limitations of PHQ9 and the diagnosis of depression ...... 43 5.4 Impact of gender order on data collection ...... 45 5.5 Strengths and limitations of this research ...... 45
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6.0 Conclusions ...... 48 7.0 Research to practice ...... 51 7.1 Translation ...... 51 7.2 Policy Implications ...... 52 7.3 Research recommendations ...... 54 8.0 Acknowledgements ...... 56 9.0 References ...... 59
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Academic abstract - English Background Globally, there is increasing emphasis on the importance of understanding the ways in which social inequality and injustice impact individual and community mental health. Set in the states of Uttar Pradesh and Uttarakhand, India, this thesis examines the complex relationships between individuals, communities and the social environment in relation to mental health. North India is characterised by stark gender and socio-economic inequalities and social exclusion for people with psycho-social disability (PPSD) and mental health services in these study areas were essentially absent. Community mental health competency means people are collectively able to participate in efforts to promote, prevent, treat and advocate for mental health. This thesis reflexively examines the presence and absence of community mental health competence in the upper Ganges region. Methods A mixed methods approach allowed for a multi-level examination of community mental health competence, and generated four sub-studies. In-depth interviews with thirteen PPSD and eighteen caregivers in Bijnor and Saharanpur (Uttar Pradesh state) were carried out in 2013 providing data for qualitative analysis. These data were analysed using qualitative content analysis to examine experiences of exclusion and inclusion of PPSD in sub-study I, and thematic analysis to examine the gendered experiences of caregivers in sub-study II. A community based sample of 960 people in Dehradun district (Uttarakhand) were surveyed in 2014 to examine the prevalence, treatment gap and social determinants of depression in sub- study III, and the attitudes and preferred social distance from people with depression and psychosis were investigated in sub-study IV. Multi-variate regression analysis in both studies was conducted with Stata software Version 13.1. Results Within the domain of knowledge, relatively low community mental health literacy, a diverse range of explanatory models of mental health, and creative and persistent efforts in help- seeking were the themes identified. Within the domain of safe social spaces, social exclusion was harsh and prevalent for PPSD, with contrasting sub-domains of belonging, social support, social participation and ahimsa (non-violence). Women were disadvantaged more than men in most spheres of caregiving. Social determinants of depression with an adjusted odds ratio of more than 2.0 included being a member of the most oppressed caste or tribal group, having taken a recent loan, and not completing primary schooling. The prevalence of depression was 6.0% in the community sample, and there was a 100% treatment gap for counselling, and a 96% treatment gap for anti-depressant therapy, even though 79% of those with depression had visited a primary care provider in the previous three months. Social determinants of health and access to care are proposed as additional domains of community mental health competency. The prevailing gender regime that values males and disadvantages women influenced every domain of community mental health competency, particularly increasing caregiver burden, social exclusion and experiences of physical violence for women. Conclusions In this thesis I have refined and strengthened a conceptual framework that portrays community mental health competence as a tree, where foundational roots of social determinants of mental health support four branches depicting access to care, knowledge, safe social spaces and partnerships for action. This tree model proposes that all five domains must
ix operate in unison to support action for community mental health involving: development of community knowledge; promoting social inclusion, gender equality and participation; addressing upstream health determinants; and increasing access to mental health care.
Key words: Global mental health; Gender; Health determinants; India; Mental health competence; Social distance; Social exclusion; Caregiver; Depression;
Revised conceptual model – community mental health competency
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Plain language summary – English
Background
This research work over the last four years has focussed on understanding what is required for communities in Uttarakhand and Uttar Pradesh, North India, to be competent in mental health. Community mental health competency means people are collectively able to participate in efforts to promote, prevent, treat and advocate for mental health. The setting of this research is a society where people with mental distress are among the most excluded. Although mental distress is very common, affected people are stigmatised and experience discrimination even from health services. While there are doctors and health clinics for people affected by infectious diseases, there are almost no services or treatments such as counselling or medicines to help people with mental distress.
This setting is also characterised by complicated relationships between mental health and social inequalities such as gender, poverty, class and caste and education. This research is an attempt to make meaning of these relationships and suggest ways to increase community mental health competence. The aim of the study was to investigate community capacity for mental health competence in the upper Ganges region.
Methods
The thesis is built around four sub-studies investigating different components of community mental health competence using a range of research methods that analyse both words and numbers. In-depth interviews with thirteen people with mental distress and eighteen caregivers in Bijnor and Saharanpur (Uttar Pradesh) conducted in 2013 were recorded and then written down, translating from Hindi to English. In sub-study I, the transcriptions from these interviews were analysed to investigate mentally distressed people’s experiences of being included or excluded from family and community life. In sub-study II the interview transcripts were analysed to identify the different experiences of male and female caregivers of PPSD, and how their gender may have shaped these experiences.
In sub-study III, a community sample of 960 people living in Dehradun district (Uttarakhand) were surveyed to assess how common depression was, how hard it was to find treatment and care, and to find out the links between depression and different social factors such as education. Sub-study IV used the same survey data to examine people’s attitudes and their willingness to socially interact with people who are unwell with depression or psychosis. The information collected in sub -studies III and IV was analysed with the computer-based software Stata.
Results
Community members were found to have limited understanding of mental health, and they also had many ways of understanding the causes of mental health problems such as believing they were due to a curse, an evil spirit or a thickening of the nerves in the brain. There was clear evidence that people with mental distress and caregivers had made creative, persistent and sometimes desperate efforts to find help and care for their unwell family members among both bio-medical and traditional healers.
With respect to access to safe social spaces, nearly all people with mental distress had experienced social exclusion and economic, verbal and physical violence. However, they also
xi described experiences of belonging, social support, and social participation. Women were disadvantaged more than men in most aspects of caregiving, with heavier responsibilities, less social support from others and social isolation due to their caregiving role. People with friends or family members with mental distress and those who believed that such people can recover were more willing to be socially close to a person with mental distress.
Six percent of those who participated in the community survey were identified as possibly depressed. People were two or three times more likely to be depressed if they: were from scheduled castes or tribes (the most oppressed social groups in India); had taken a recent loan, lived in a poor quality house; or if they had not completed primary school. Even though 79% of those with depression had visited a doctor in the previous three months, none had been offered counselling (the recommended first step to care for someone with depression).
In additional to knowledge and safe social spaces, social factors that influence health, such as numbers of completed years of schooling, housing quality, and access to mental health care emerged from the research as a further important domain of community mental health competence. One of the most significant social factors influencing mental health competency is gender inequality. This leads to a greater load in caregiving, impoverishment and experiences of violence for women.
Conclusions
Bringing together the findings from this research, I picture community mental health competence using the picture of a tree. All parts are organically connected. The roots are the many social factors that affect mental health. The trunk connects these with four branches: access to care, knowledge, safe social spaces and partnerships for action. To strengthen community mental health competence, action needs to be taken addressing each of these branches, as well as the ‘roots’. Examples of actions include: development of community knowledge; promoting gender equality and non-violence; reducing social inequities; increasing the accessibility, receptiveness and availability of health services; ensuring opportunities for participation for all community members including those with mental distress and increasing opportunities for critical conversations about community mental health.
This research has uncovered a picture of people with mental distress, and the caregivers and community members who journey with them, finding strategies to travel across the complex social landscape despite many obstacles and few resources. Amidst the shadows there are patches of light.
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Plain language summary – Hindi
प्रकाश और अंधकार - उत्तर भारत में सामुदायिक मानयसक स्वास््ि क्षमता की जांच
साधारण भाषा में सारांश
पृष्ठभूयम
यपछले चार सालⴂ से मेरा कािय िह समझने पर केंद्रित है द्रक उत्तराखंड औरउत्तर प्रदेश, उत्तर भारत के समुदािⴂको मानयसक स्वास््ि में सक्षम होने के यलए द्रकस बात की आवश्िकता है। इसकाअर्य िह है द्रक वे सामूयहक 셂प से मानयसक स्वास््ि को बढावादेने, रोकने, इलाज करने और समर्यन देने के प्रिासⴂ में सक्षम हⴂ। इस कािय की स्र्ापना ऐसे समाजके बीच में है, जहााँ मानयसक रोग से पीयित लोग सबसे अयधक अलग द्रकए गएहℂ । हालााँद्रक मानयसक रोग एक सामान्ि बात है, इस से प्रभायवत लोग कलंद्रकत द्रकए जाते हℂ और िहााँ तक द्रक स्वास््ि सेवा䴂 द्वारा भी उन्हेंभेदभाव का अनुभवकरना पिता है। जबद्रक संक्रामक रोगⴂ से प्रभायवत लोगⴂ के यलए डॉक्टर, स्वास््ि क्लीयनक्स और टीके उपलब्ध हℂ, वहााँदूसरी ओर मानयसक रोग से प्रभायवत लोगⴂ के यलए लगभग कोई भी सेवाएं िा उपचार जैसे परामशय िा दवाईिां उपलब्ध नहĂ है।
मानयसक स्वास््ि और सामायजक असमानता जैसे ललंग, गरीबी, वगय, जायत और यशक्षा के बीच जटटल स륍बंध भी इस स्र्ापना की यवशेषताहै। इस मुख्ि लेख का प्रिास इन संबंधो को समझना और समुदायिक मानयसक स्वास््ि की क्षमता को बढ़ाने की सलाह देना है। इस अध्ििन का उद्देश्ि ऊपरी गंगा क्षेत्र में समुदायिक मानयसक स्वास््ि की क्षमताको खोजना है। इस शोध में, मℂने सामुदाि-स्तर के ज्ञान और सुरयक्षत सामायजक स्र्ान के काियक्षेत्र पर ध्िान केंद्रित द्रकिाहै।
पद्ययतिां
िह शोध चार उप-अध्ििनⴂ से बनािा गिा है, यजन मेंसमुदायिक मानयसक स्वास््ि की क्षमता के अलग-अलग भागⴂ की जााँच, दोनⴂ शब्दⴂ और संख्िा䴂 का यवश्लेषण शायमल कर, यवयभन्न अनुसंधान यवयधिⴂ द्वारा की गईहै। 2013 में यबजनौर और सहारनपुर (उत्तर प्रदेश) मेंतेरह मानयसक 셂प से पीयित व्ययि और अठारह देखभालकताय के सार् पूणय 셂प से साक्षात्कार कर, लहंदी से अंग्रेजी में अनुवाद करके अयभयलयखत द्रकिा गिा है। उप-अध्ििन I में, इन साक्षात्कार की यलयखत प्रयतयलयप का यवश्लेषण द्रकिा गिा द्रकमानयसक 셂प से पीयित व्ययििⴂ का उनके पटरवार और समुदायिक जीवन में उनकेसय륍मयलत िा असय륍मयलत होने के अनुभव को जान सकें।उप -अध्ििन II में, इन साक्षात्कार की यलयखत प्रयतयलयप का यवश्लेषण द्रकिा गिा द्रकमानयसक 셂प से पीयित व्ययि के पु셁ष और मयहला देखभाल करनेवालⴂ के यवयभन्न अनुभवⴂ को जान सकें और िह भी द्रक द्रकस प्रकार उनके ललंग (पु셁ष िा मयहला होने) का प्रभाव उनके अनुभवⴂ पर पिा।
उप-अध्ििन III में, देहरादून यजले (उत्तराखंड) में रहने वाले 960 लोगⴂ के समुदाि का आंकलन द्रकिा गिा द्रकअवसाद से द्रकतने लोग प्रभायवत र्े, उपचार और देखभाल यमलना द्रकतना कटठन र्ा तर्ाअवसाद और यवयभन्न सामायजक कारकⴂ जैसे यशक्षा के बीच संबंध पता लगाने के यलए सवेक्षण द्रकिा गिा। उप-अध्ििन IV में इसी सवेक्षण के आंकिⴂ का प्रिोग, लोगⴂ का व्यवहार और उनकीसामायजक 셂प से अवसाद िा मनोयवकृयत से पीयित लोगⴂ से बातचीत करने की इ楍छा को जानने के यलए द्रकिा गिा।उप -अध्ििन III और IV में एकयत्रत की गई जानकारी का यवशलेषण कमप्िूटर िुि सौफ्टवेिर- सटाटा के द्वारा द्रकिा गिा।
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पटरणाम
समुदाि के सदस्िⴂ में मानयसक स्वास््ि की सीयमत समझ पाई गई और उनके पास मानयसक स्वास््ि स륍बंयधत समस्िा䴂 के कारणⴂ को समझने के कई तरीके र्े जैसे द्रक िहयवश्वास करना द्रक िह एक अयभशाप के कारण र्ा, द्रकसी दुष्ट आत्मा िा मयस्तष्क में नसⴂ के मोटे होने के कारण। स्पष्ट प्रमाण र्ाद्रक मानयसक 셂प से पीयित व्ययि और देखभाल करने वालⴂ ने लगातार रचनात्मक और अयतसहायसक प्रिास द्रकए द्रक द्रकसी अस्वस्र्तरह पटरवार के सदस्िⴂ के यलए जैव-यचद्रकत्सा और पारंपटरक यचद्रकत्सकⴂ दोनⴂ से उन्हें सहािता और देखभाल यमल सके।
सुरयक्षत सामायजक स्र्ान के यलए लगभग सभी मानयसक 셂प से पीयित व्ययििⴂ ने सामायजक अलगाव और आ셍र्यक, मौयखक और शारीटरक लहंसा का अनुभव द्रकिा। तर्ायप, उन्हⴂने संबंध, सामायजक समर्यन और सामायजक सहभायगता के अनुभवⴂ का भी वणयन द्रकिा। पु셁षⴂ की तुलना में मयहलाए कई पहलु䴂 में अपने देखरेख करने की भूयमका के कारण, 煍िादा यज륍मेदाटरिⴂ, दूसरⴂ से कम सामायजक समर्यन और सामायजक अलगाव के कारण सुयवधाहीन र्Ă। ऐसे लोग यजनके दोस्त िापटरवार के सदस्ि मनोवैज्ञायनक सामायजक यवकलांगता से पीयित हℂ और िह यवश्वास करतेहै द्रक मानयसक 셂प से पीयित व्ययि ठीक हो सकते हℂ, वे सामायजक 셂प से एक मानयसक 셂प से पीयित व्ययि के करीब होने के यलए 浍िादा इ楍छुक र्े।
यजन्हⴂने सामुदायिक सवेक्षण में भाग यलिा र्ा, उनमें सेछ : प्रयतशत लोग उदास पाए गए। लोगⴂ में दो िा तीन गुना अयधक अवसादग्रस्त होने की संभावना र्ी िद्रद वे: अनुसूयचत जायत िा जनजायत (भारत में सबसे दयलत सामायजक समूह) से हो; हाल ही में ऋण यलिा हो, अ楍छे घर में न रहते हⴂ; िा उन्हⴂने अपनी प्रार्यमक यशक्षा पूरी नहĂ कर पाई हो। हालांद्रक यपछले तीन महीनⴂ में 79% अवसादग्रस्त लोगⴂ ने डॉक्टर को द्रदखािार्ा , लेद्रकन द्रकसी को भी सलाह / परामशय नहĂ प्राप्त परामशयई ( के 셂प में पहला कदम द्रकसी भी अवसादग्रस्त की देखभाल करने के यलए)।
ज्ञान और सुरयक्षत सामायजक स्र्ान के अयतटरि, सामायजक कारक जो स्वास््ि को प्रभायवत करते हℂ, जैसे स्कूली यशक्षा का पूरा होना और आवास की गुणवत्ता, और मानयसक स्वास््ि देखभाल तक पाँच, शोध के द्वारासामुदायिक मानयसक स्वास््ि क्षमता का एक और महत्वपूणय क्षेत्र उभर के सामने आिा। सबसे महत्वपूणय सामायजक मानयसक स्वास््ि िोग्िता को प्रभायवत करने वाले कारकⴂ में से एक ललंग असमानता है। िह और अयधक देखभाल करने और मयहला䴂 के लहंसा के अनुभवⴂ की ओर ले जाता है।
यनष्कषय
अनुसंधान/ शोध से यमले यनष्कषⴂ को एक सार् यमलाकर, एक पेि के 셂पक का उपिोग कर, मℂ सामुदायिक मानयसक स्वास््ि क्षमताका यचत्रणक셁ाँगी। सभी भाग जैयवक 셂प से जुिे ए हℂ। अनेक सामायजक कारक जो मानयसक स्वास््ि को प्रभायवत करतेहै, वे जिेहℂ। इन चार शाखा䴂 को तना एक सार् जोिता है: देखभाल, ज्ञान, सुरयक्षत सामायजक स्र्ान और काियवाही के यलए भागीदारी । सामुदायिक मानयसक स्वास््ि क्षमता को मजबूत करने के यलए, इन प्रत्िेक शाखा䴂 के सार्-सार् 'जिⴂ' के प्रयत कािय/ काियवाही करने की ज़셂रत है। काियवाही के उदाहरण हℂ: सामुदायिक ज्ञान का यवकास; लℂयगक समानता और अलहंसा को बढ़ावा देना; सामायजक असमानता䴂 को कम करना; स्वास््ि सेवा䴂 की पंच, ग्रहणशीलताऔर उपलब्धता बढ़ाना; मानयसक कष्ट से प्रभायवत लोगⴂ सयहतसभी समुदाि के सदस्िⴂ के यलए भागीदारी के अवसरⴂ को सुयनयित करना और सामुदायिक मानयसक स्वास््ि के बारे में महत्वपूणय बातचीत के यलए अवसरⴂ को बढ़ाना ।
िह अनुसंधान/ शोध ऐसे लोगⴂ की तस्वीर को जो मानयसक रोग से पीयित, देखभालकताय और सामुदाि के सदस्िⴂ को उजागर करता है जो कई बाधा䴂 और कुछ संसाधनⴂ वाले जटटल सामायजक पटरदृश्ि से यनकलने के यलए रणनीयतिⴂ को ढूंढकर, अंधकार के बीच प्रकाश का प्रयतयनयधत्व करतेहℂ ।
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Researcher stance Born in South India to New Zealand parents who were high-school teachers, I grew up in an international Christian boarding school in South India and in a small village in Nepal. My childhood insisted that I engage with global inequality and the social determinants of health. Most of my Nepali village playmates were boys, as my female peers were already required to work all day with firewood collection and domestic duties. Surya, next door, lived in a desperately small and crowded shack with his widow mother and nearly died with tuberculosis infection due to lack of access to care. I was witness to the ways in which gender, inequality, poverty, housing, and social structures powerfully determine the health of individuals and communities. Language, social hierarchies, and religion among both expatriate and local friends were each integrally woven through my childhood interactions and sealed my own connection and commitment to the Indian sub-continent. I completed medical school at Auckland University and worked several years as a junior doctor in New Zealand, marrying Jeph Mathias, who had immigrated as a child from India to New Zealand. After completing a Master in Public Health from James Cook University, Australia in 1997, I worked among commercial sex workers in Cambodia with Servants to Asia’s Urban Poor and trained people from indigenous and war-torn communities how to diagnose and treat malaria with Médecins Sans Frontières in Colombia for two years. Both jobs distilled clearly to me the complex contributions of poverty, war, culture and geography to health and made me convinced that engaging with the cultural and political dimensions of health in low income countries was the way forward for me. From 2000 to 2005 I returned to New Zealand to complete specialist training in Public Health Medicine where my projects focused on under five health among Māori children, youth primary health, social determinants of rheumatic fever, and an evaluation of the health impact assessment of the Christchurch urban design strategy [1, 2]. The Māori four pillared framework for health, Te Whare Tapa Whā which includes mental, spiritual, and family domains [3], Te Pae Mahutonga for health promotion [4], and the importance of self- determination for health [5] both were foundational for my understandings of health. Learning more about social health determinants and how to engage with and influence politics and decision making processes was another key part of the journey. In New Zealand I was an active member of the Green Party and the politically engaged Public Health Association, as well as contributing to climate change, child poverty, and pro-health advocacy groups. Since early 2006, Jeph and I, with our four children have been living and working in villages, slums and small towns in India. My initial work in India focussed on building my understanding of health needs in the Indian context [6] and building my own skills and knowledge in Hindi language, the health system, capacity building, and nutrition. Increasingly I was fascinated by community participation, disability, social inclusion and mental health [7, 8]. Participation in the 2007 People Health Movement National Health Assembly in Bhopal and the International People’s Health University in Savar, Bangladesh were events that set me on new trajectories of a more politicised public health. I appreciate the discussion seeking health and justice in India through membership of the Medico Friends Circle, a nation-wide platform of secular, pluralist, pro-poor health practitioners, scientists and social activists interested in the health problems of the people of India. From 2011 I have become increasingly engaged and fascinated by mental health, my personal experiences as a caregiver for a family member with a severe mental illness underlining that mental health services are nearly absent in many parts of India. These experiences urged me to take up leadership in mental health, a new strategic focus for the Emmanuel Hospital Association, the organisation I am affiliated with.
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As the mental health programme manager I spent time with families impacted by mental illness, listening to their stories and experiences. Sitting in hot brick rooms under slow turning fans, I looked at reams of magnetic resonance imaging (MRI), computed tomography (CT), and electroencephalogram (EEG) reports that were testimony to doctors’ avarice and irrational over-investigation. Families told stories of selling their very livelihood in the form of land and cattle to pay for prescriptions and tests that they hoped would bring healing and wellness to their loved family members. Few had found compassionate or effective care. People with mental illness also described experiences in their communities and families of discrimination and social exclusion. Most encounters with mental illness seemed to lead to impoverishment and reduced social capital. Yet there were also accounts of community participation, actions for inclusion, and gentle and kind healers from every tradition who had supported families to forge their own paths to recovery. Where did this thesis come from? Searching the academic literature about community mental health in North India I found a sparse evidence base and few viable models on which to structure our own community mental health programmes. I visited Uttar Pradesh and Uttarakhand state mental health nodal officers and mental health facilities. Government psychiatrists were as rare as hens teeth (in 2013 there were 10 Government psychiatrists for the whole state of Uttar Pradesh with 200 million people [9]) and seeing up to 150 people in a day at Bareilly Mental Hospital [10]. It was clear that people with mental distress were perhaps the most abandoned in a health system which had many holes. I felt strongly that all work in community mental health should be well-documented, and should be both supported by and contributing to research evidence. Ultimately I hope together with others, we can increase understanding of the actions required to strengthen individuals and communities to be inclusive, participatory, and mentally healthy, with access to effective care. I find myself philosophically keen to find a middle way in the internationally raging debates on global mental health [11-13]. Working with communities and building on local resources as well as strengthening health systems are both central. In the framework for community mental health competency proposed by Campbell and Burgess [14] I found a high level of resonance with my own understandings of requisite domains for community mental health which I believe must be community-inspired, participatory, and socially inclusive. It should also work to promote access to holistic care (including social, psychological, and pharmaceutical support) increase gender equality, and strengthen government health services. With all of this in mind, in 2013 I started developing a research proposal to study at Umeå University. Like most journeys, this PhD has had quirks of coincidence, personal history, and contextual factors that form the intersecting orbits that have currently closed in on my research into community mental health competencies in the upper Ganges catchment area.
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Original papers
This thesis is based on the following papers. Papers I and III were published in open access journals, so no permission was required to reprint. Paper II has been accepted for printing by the journal Transcultural psychiatry. Paper IV is currently under review by a Community mental health journal and is presented here as a manuscript.
I Mathias K, Kermode K, San Sebastian M, Korschorke M, Goicolea I: Under the banyan tree - exclusion and inclusion of people with mental distress in rural North India. BMC Public Health 2015, 15(446).
II Mathias K, Kermode M, SanSebastian M, Davar B, Goicolea I: An asymmetric burden gendered experiences of caregivers of people with psycho-social disabilities in North India (forthcoming). In: Accepted by Transcultural Psychiatry – May 2016.
III Mathias K, Goicolea I, Kermode M, Singh L, Shidhaye R, Sebastian MS: Cross- sectional study of depression and help-seeking in Uttarakhand, North India. BMJ Open 2015, 5(11).
IV Mathias K, Kermode M, Goicolea I, Seefeldt L, Shidhaye R, Sebastian MS: Social distance and community attitudes towards people with psycho-social disabilities in Uttarakhand, India (forthcoming). Submitted (2016)
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Glossary Bio-medicine - a perspective that privileges the body as the only relevant environment for the understanding of the disease causation and sees individuals as uniquely responsible for their health, which is the approach to medicine legitimized, credentialed and recognized throughout the world by governments and licensing bodies of human society. Although it sees itself as distinct from morality, politics, economics, and social organization, it is in fact an artefact of human society, founded in a cultural framework of values, premises, and problematics, explicitly and implicitly taught by the communications of social interaction [15]. Burden of disease - is the impact of a health problem as measured by financial cost, mortality, morbidity, or other indicators. It is often quantified in terms of quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs), both of which quantify the number of years lost due to disease (YLDs) [16]. Caregiver – a person who provides direct care for children, elderly people or a person who has a long-term illness or disability. Community mental health competence - people are collectively able to participate in efforts to promote, prevent, treat and advocate for mental health in a receptive social environment [14]. Confidence interval – a range of values of a sample statistic that is likely to contact a population parameter e.g. if one took infinite samples of the same size, then on average 95% of them would produce confidence intervals containing the true population value [17]. Cross-sectional study – a study conducted in a single point in time by taking a ‘slice’ (a cross-section) of a population at a particular time [17]. Caste - is a form of social hierarchy that is considered immutable and endogamous, prevalent in South Asia and linked to Hindu society. While historically it implied hereditary transmission of an occupation, it is now assigned at birth and frequently restricts customary social interaction and exclusion based on cultural notions of purity and pollution. Dalit – term used by people belonging to the most oppressed caste to refer to their own identity. General caste – denotes people who belong to the most advantaged castes in Government of India census enumeration. Other backward castes (OBC) – denotes identity of castes that are more advantaged than SC/ ST and less advantaged than General caste, and frequently includes adherents of Islam faith. Scheduled caste (SC) - denotes Dalit identity in Government of India census enumeration. Scheduled Tribe (ST) - denotes indigenous identity in Government of India census enumeration.
External validity - the degree to which results of a study are relevant to populations or groups beyond those in the study (it refers to the same concept as generalisability) [17].
Gender - is a term that refers to social or cultural distinctions associated with being male or female while ‘sex’ is a term that refers to biological distinctions associated with being male or female.
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Gender-based violence - violent acts that result in, or are likely to result in, physical, sexual, psychological or economic harm or suffering to women.
Gender order - the ways in which societies shape notions of masculinity and femininity through power relations, a term associated with the writings of RW Connell [18, 19].
Internal validity- the degree to which results of a study are free from bias or systematic error, allowing attribution to the interventions rather than flaws in research design. The soundness of the study design, conduct, and analysis in answering the question that it posed for the study participants [17].
Mental health - a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community [20].
Political economy of health - a body of analysis and a perspective on health policy which seeks to understand the conditions which shape population health and health service development within the wider macro-economic and political context [21].
Psycho-social disability - a term used to refer to people who have received a diagnosis of a mental health condition and experienced related negative social effects including prejudice, discrimination, and exclusion [22]. It is the term preferred by many people who use mental health services or who experience mental disorders and will therefore be the term used predominantly in this thesis.
Purposive sampling- non-random, non-probability sampling procedures used in qualitative methodology. The study units are selected deliberately, with an expectation that they will be appropriate for the purpose of the study. As opposed to random samples, the purposive sample is not representative for its population in a statistical meaning [17].
Relational gender theory –emphasises gender as constructed, moving beyond more categorical understandings of gender to see it as a dynamic and fluid construct that operates at different levels from intra-personal to pervasive gender orders and permeating all aspects of lived experience, proposed by Connell [19].
Safe social space – places (social or geographic) that welcome people of all identities, promoting social inclusion and participation to provide opportunity for critical reflection about the concepts and drivers for mental health [14].
Social determinants of health - the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems [23].
Social distance - the relative willingness of a person to participate in relationships of varying degrees of intimacy with a person who has a stigmatised identity [24-26].
Social exclusion - interlocking and mutually compounding problems of impairment, discrimination, diminished social role, lack of economic and social participation, and disability [27].
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Social inclusion - a process through which individuals with psycho-social disability increasingly develop and exercise their capacities for connectedness and citizenship [28].
Stigma - occurs when labelling, status loss, stereotyping, separation and discrimination occur together in situations that allow them [29]. It leads to individuals being perceived as ‘tainted and discounted’ [30].
Treatment gap – the number of people with an illness, disease, or disorder who need treatment but do not get it (expressed as a percentage).
Triangulation – using more than one method to study the same thing – borrowed from the field of surveying where data is confirmed by examining from multiple locations/ sources [17].
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Acronyms used
ANM – auxiliary nurse midwife
ASHA – accredited social health activist
AWW – anganwaddi worker – a Government appointed, community based pre-school teacher with part-time employment as part of the national Integrated Child Development Scheme (ICDS)
CHC – community health clinic
CMD – common mental disorder, refers to disorders such as anxiety and depression
DALY – disability adjusted life years
DMHP – District Mental Health Plan
DSM - Diagnostic and Statistical Manual of Mental Disorders
GBV – gender-based violence
HDI – human development index
HIC – high income country
HIV/ AIDs - human immunodeficiency virus / acquired immune-deficiency disease
ICD 10 – the International Classification of Diseases - this is the standard diagnostic tool for epidemiology, health management and clinical purposes developed by the World Health Organisation which provides the basis for the compilation of national mortality and morbidity statistics by WHO Member States
INR - Indian rupees (the currency of India). In September 2016 USD$1 was worth approximately INR66.
LMIC – low- middle income country
MNREGA - Mahatma Gandhi National Rural Guarantee Act (2006) NGO – non-governmental organisation NMHP – National Mental Health Plan (formerly District Mental Health Plan) OBC – other backward caste – Government of India term of classification used to refer to people belonging to castes that are neither the most oppressed nor the most advantaged OR – the ratio of two odds which acts as a measure of association, measured by the difference from 1.0. A ratio of greater than 1.0 indicates a direct or positive relation [17]
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AOR - adjusted odds ratio – is an OR computed after having controlled for the effects of other predictor variables [17] p-value – probability value –for example p < 0.05 means that the probability (p) that a result this big could have been produced by chance is less than 5% i.e. 1 in 20. PHC – primary health clinic PhD – Doctor of Philosophy PHQ9 – a validated psychometric screening tool for depression that uses nine questions PPSD – person with psycho-social disability RMP – rural medical practitioner, typically an untrained practitioner who diagnoses and treats a wide range of presentations with a limited repertoire of non-evidence based therapies
SC – scheduled caste, the Government of India classification used for people belonging to the most oppressed caste, also called Dalit SHARE - Society for Health and Rural Empowerment ST – scheduled tribe, the Government of India classification used for people belonging to indigenous groups, also called Adivasi UNCRPD – United Nations Convention on the Rights of People with Disability USD – United States dollars WHO – World Health Organisation
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1.0 Introduction
“Medicine, as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution: the politician, the practical anthropologist, must find the means for their actual solution. The physicians are the natural attorneys of the poor, and social problems fall to a large extent within their jurisdiction.” Rudolph Virchow
Set among communities in western Uttar Pradesh and Uttarakhand, India, this research examines the relations between people as individuals and communities, and with the complex social environment[31], focussing on community mental health competency. Campbell and Burgess proposed the concept of community mental health competence as comprising of the three key concepts of knowledge, safe social spaces, and partnerships for action [14]. Knowledge includes recognising symptoms of mental illness and how to access and use services. It must be shared and debated in supported safe social spaces (formal and informal) which are inclusive places that provide space for participation, dialogue, critical reflection, and allow the development of local community ownership and responsibility, building local and group skills and local solidarity for the ‘third domain’, collective efforts to optimise mental health. This domain requires a level of collective critical conscientisation [32] and the formation of partnerships for action, where local people are aware of, and able to access, external organisations and agencies with the will and resources to support good mental health in the community (including, for example, public health services, non-governmental organisations, charitable foundations, political groups). This thesis is primarily comprised of four sub-studies examining different aspects of community mental health competence. Sub-study I describes the experiences of exclusion and inclusion for people with psycho-social disability (PPSD), using a qualitative methodology. The term ’psycho-social disability’ is used to refer to people who have received a diagnosis of a mental health condition and experienced related negative social effects including prejudice, discrimination, and exclusion [22]. It is the term preferred by many people who use mental health services and will therefore be the term used predominantly in this thesis. The second sub-study documents the experiences of caregivers of PPSD, conducting the analysis with the gender lens of relational theory using qualitative methods. Both these studies contribute perspectives on the structure and safety of social spaces, as well as community knowledge in mental health. The prevalence and treatment gap of depression in Uttarakhand, as well as health service utilisation and help-seeking, is examined with a cross–sectional quantitative study in sub-study III. The fourth sub-study focuses on attitudes to PPSD using the composite measure of social distance, as well as mental health knowledge and beliefs of community members in Dehradun district, Uttarakhand, using a cross-sectional quantitative methodology. Sub-studies III and IV contribute to understandings of community mental health competence related to both knowledge and safe social spaces.
1.1 The importance of global mental health Mental health was identified as the leading cause of years lived with disability in the 2010 Global Burden of Disease study, with the majority of people affected living in low
1 and middle income countries (LMIC) [16]. Conservative estimates of the prevalence of psycho-social disability suggest at least 5% of any population are affected, with either common mental disorders such as depression or anxiety or more severe disorders such as schizophrenia or dementia [13]. PPSD typically have much shorter life expectancies and even in Nordic countries can expect to live up to 20 years less than people without mental disorders, which is related to both direct causes such as higher risk of suicide, as well as indirect causes such as lower engagement with exercise and other health promoting behaviours [33]. Up to 90% of PPSD in LMIC do not have access to care and annual mental health spending averages less than 25 cents per person [34]. Outcomes for individuals with mental distress are further complicated by the absence of legislation to protect their human rights with only 47% of individuals in LMIC settings protected under mental health legislation [34]. Sparse mental health services contribute significantly to the treatment gap with extraordinary inequalities in access to mental health services found at a global level. For example, I calculated the access to Government funded psychiatric care for the state of Uttar Pradesh, India and Sweden in 2013: the 200 million residents of Uttar Pradesh [35] had access to just 10 psychiatrists employed by the Government [9], while Sweden’s 10 million people had access to 1465 psychiatrists (Sweden had a total of 1592 psychiatrists of whom approximately 92% are employed by the Government) [36-38]. Thus there were 3000 times more Government psychiatrists (per capita) for people living in Sweden compared to those living in Uttar Pradesh in 2013. Another key factor contributing to the treatment gap is stigma and fear of discrimination [16, 39-42]. Stigma occurs when labelling, status loss, stereotyping, separation, and discrimination occur together in situations that allow them [29]. It leads to individuals being perceived as tainted and discounted’ pg 3,[30]. Stigma impacts people with psycho-social disability (PPSD) by contributing to under-treatment, social isolation, and reduced help-seeking, slowing recovery and re-integration [39, 42, 43] and can lead to a vicious circle of further exclusion [44]. Understanding the experiences of PPSD informs the development of effective responses to reduce stigma, improves access to care, and amplifies safe social spaces [14]. 1.1.1 The political priority of global mental health Global mental health rose quickly to prominence with the launch of the Global Mental Health Movement in 2007 [45] and the simultaneous Lancet series profiling the high disparities in mental health [46, 47]. This was followed with a further Lancet series in 2011 [48]. Strategies and intervention packages to address the enormous disparities in mental health across the globe prioritised increasing access and scaling up bio-medical services [47, 49, 50], task shifting [51], stepped care and collaborative care [52, 53] as the framework for integrating drug and psychological treatments. The top research priorities defined by a select group of scientists were outlined with substantial funding support from Grand Challenges Canada and others [54]. This approach to global mental health primarily built on a public health approach grounded in bio-medicine and evidence based practices. It has been supported with key publications by the World Health Organisation such as the Mental Health Atlas and the mhGAP guidelines [34, 55]. At the same time a parallel account of global mental health led predominantly by social scientists sought to shift the focus to the political, economic, and social determinants of mental health, the imperatives of listening to local priorities, strengthening community resources, and developing endogenous solutions [11, 14, 56-58]. More than describing the social distribution of disease, the way the political and economic structures are
2 embodied in illness experience were elevated [57]. These accounts critiqued bio-medical psychiatry with its colonial roots and use of a Western nosology, and the ‘colonising’ of the normal range of human experience with psychiatric diagnoses, thus risking medicalising distress and disease mongering [11, 58-63]. Persisting controversies focus on whether there are universally applicable diagnostic categories and treatments, how to ensure flow of knowledge and an equitable distribution of resources and influence between global actors and local communities, the quality of available interventions, types of evidence that are used, and how effectiveness is defined [14, 57, 64]. These two often parallel approaches to mental health on a global scale have led to vigorous dialogue and at times have become polarised along a global / local divide [59, 65]. As mental health is globalising, on one hand, badly needed attention to mental health issues and people's suffering is welcomed and essential, but on the other hand attention to local contexts and solutions is also requisite. The December 2014 issue of Transcultural Psychiatry sought to define new ways forward for global mental health [13, 57, 59]. A middle path was proposed that developed a broader research agenda focusing on reviewing the relevance of the current nosological systems, describing the contextual impact of the political economy on mental health, seeking to understand local forms of coping, resilience and recovery including traditional healing systems, and use of multi- sectoral, cross-cultural and transdisciplinary approaches so that global mental health could be maximally inclusive, participatory, and responsive [57, 59, 62]. 1.1.2 Political economy and social determinants of health in India India is a vast country, home to over one billion people and the world’s largest democracy. After two centuries of colonial rule, in 1947 India wrested independence from the British Empire. The country immediately set up multiple parties, freedom of speech, and extensive political rights, and co-founded the non-aligned movement (a group of states not formally aligned with or against the western and eastern power blocs). The famines and economic stagnation of the British era were replaced with steady economic growth, and in the last two decades India has held an average growth rate of around 7% per annum [66]. Yet while rapid economic growth has benefitted many of the upper-middle and upper classes, distribution of the benefits has been unequal and there has been glaring neglect of human development, in particular the essential needs of the poor, the oppressed castes, and women [66, 67]. Public resources generated by economic growth have not been used to benefit the majority. There are ongoing stark inadequacies in schooling, medical care, as well as the absence of a safe water, electricity, and sanitation for many. The ongoing underdevelopment of social and physical infrastructure, and neglect of human capabilities is evidenced in India’s health and social indicators which have steadily declined in relation to South Asian neighbours such as Sri Lanka, Bangladesh and Nepal, who simultaneously pursued human development with economic growth [66, 68]. Indian society is highly stratified by gender, caste and class, and geography. This manifests as inequities in health that are socially produced and systematic in their (mal)- distribution. The sparse provision of health services has led to massive impoverishment of a large proportion of the population and to premature death of members of disadvantaged groups [68-70]. There are gross inequalities in social health determinants that influence both access to care and health outcomes. People who experience systematic disadvantage are people who are poor, members of oppressed castes – particularly Scheduled Castes and Scheduled Tribes, Muslims, people in rural areas, people with low education, and women [66, 68, 71, 72]. Inequalities between the poor and rich manifest starkly; for example, the infant mortality rate among the poorest and richest wealth quintiles in 2005-06 was 82 and 34 per 1000 births respectively. Women
3 in the richest quintile are six times more likely to deliver their babies in an institution than women in the poorest quintile [68]. Gender inequalities in health in India are evident in many ways, perhaps the most obvious being the stark difference in sex ratio, where there were just 915 girls born for every 1000 boys in the 2011 Census, evidence of the prevalent practice selective termination of pregnancy [68]. The dominant gender order in India values males and disadvantages females, a fact evidenced by India’s ranking as one of the world’s most gender unequal countries [73, 74]. Despite the existence of many laws to protect the rights of women such as the Equal Remuneration Act, the Protection of Women from Domestic Violence Act, and the National Commission of Women Act [75-77], implementation and regulation of these laws is weak. Representation of women contesting seats in parliament and state assemblies has been stagnant since Independence at around 3.2%, and a success ratio of 43% in 1952 declined to the lowest ever of 7.9% in 1996 [78]. Geographical access to care impacts women more than men and women have greater unreported morbidity and lower health care use than men. The majority of men believe that while men and women should make decisions about women’s health jointly, men should have the final word [70]. Gender remains a key health determinant operating through intermediate determinants such as class, literacy and autonomy [79, 80]. Gender based violence (GBV) is linked to child mortality among girls but not boys, and is the experience of one in three married women [81]. The prevalence of any kind of GBV in North India is estimated to be over 30% in rural Uttar Pradesh [82], over 50% in the eastern states of North India [83], and 27% in a study examining life time prevalence of intimate partner violence (IPV) in Gujarat [84]. While prevalence estimates of gender based violence in North India are available, there is no research describing the experiences of violence for North Indian women with mental health problems, who may have experienced violence in the home (from intimate partners and other family members), in the community, and if they have been institutionalized, from those who were caring for them. Additionally, some of these women may have tried to self-harm i.e. attempted suicide. Caste is a formalised system of social stratification that is closed and immutable, based on familial traditional occupational affiliations, and prevalent across the Indian sub- continent. It is assigned at birth and in census enumeration and is one of the strongest social determinants of health outcomes and access to care in the region [67, 71, 85]. Belonging to an oppressed caste affects health adversely [67]. Caste categories used are Scheduled Caste and Scheduled Tribe (SC/ST) who together comprise 24% of the population and represent the most oppressed and socially disadvantaged groups. The two other main groupings are Other Backward Castes (OBC) and General caste. A recent study showed that children of SC/ST caste were nearly two times more likely to be severely anaemic than members of the advantaged (General) caste, after adjusting for household wealth and educational status [67]. Another study showed that young people belonging to scheduled tribes had nearly double the risk of dying when compared to young people belonging to the general caste [71]. Cultural factors also impact health status. The Muslim population of India is estimated to be 140 million people (14.2% of the population) [35]. Religion overlaps with caste and 40% of the Muslim community are part of the OBC caste classification [70]. Forty-three percent of Muslims live under the official poverty line and literacy rates among this group are lower than the national average [70]. Muslim women are significantly less likely to have access to antenatal services and have poorer reproductive health outcomes
4 than non-Muslim women [70, 86]. There is growing recognition of the increased health risks associated with marginalisation of Muslim people [66]. Low educational status is a further health determinant: one study showed that immunisation coverage was 26% for children whose mothers had no education for children but was 65% for children whose mothers had completed primary education. The under-5 mortality rate among mothers with no education compared to those with secondary or higher education was 106 and 49 per 1000 births, respectively [68]. There is also a strong correlation between education and access to reproductive health services such as family planning and antenatal care. The third National Family Health Survey (NFHS-3) showed that the fertility rate among women with no education was 3.5 compared to 1.8 among women with 12 years or more education. Further, only 29% of women with no education received at least one antenatal care visit as opposed to 88% among women with 12 years or more education [87]. There are also substantial geographic inequalities across the country, with the life expectancy in the southern state of Kerala being 74 years while in the central state of Madhya Pradesh it is nearly two decades shorter at 58 years [68]. There are similarly unequal expenditures on health care in different states with an estimated per person annual expenditure on health in the impoverished state of Bihar of INR93 per person compared with INR631 per person in Himachal Pradesh [88]. The impacts of Indian states’ different policy approaches in terms of health investment is also evident across multiple indicators of wellbeing such as the Human Development Index (index of life expectancy, education and income), where Tamil Nadu’s HDI in 2001 was 0.531 (ranking third) while Bihar’s was nearly half of that at 0.367 (ranking 15th) [89]. Beyond the individual impacts of the social determinants of health described above, they also act synergistically to magnify disadvantage. Intersectionality is a framework that makes visible the fluid and interconnected structures of power that create health inequities. It considers the interaction of different social stratifiers such as gender, caste, marital status, psycho-social disability, and class, and the power structures (laws, policies, cultural and religious norms, media) that underpin them at multiple levels [90, 91]. Caste and disability both act as identifiers for social exclusion and each critically influence access to education, health care employment, social capital and social support [80, 92-94]. The prevalent phenomenon of seasonal and stress migration by large numbers of the poorest people across India is another event driven by social, geographical, and economic factors that contributes to social and mental distress [95, 96]. Gender, economic status, caste, and other social determinants of health act together to cause inequitable access to health and are important factors in the contextual landscape of community mental health competencies in rural North India. While India has aspirational legislation and policies to support social health determinants, the potential positive impact of enabling policies are limited by lack of resourcing, implementation, and regulation [66, 97]. 1.1.3 Health and health services in India India has made substantial progress in some health indicators. In the 65 years since independence India has doubled the life expectancy for citizens and between 2001 and 2013 the maternal mortality ratio fell from 301 to 167 per 100,000 live births [69]. In 2014, India was declared polio-free and in 2015 India was declared free of neonatal and maternal tetanus by the World Health Organisation [66, 69]. While India is home to 17.5% of the world’s population, it accounted for 20% of the global burden of disease in 2013, and for 27% of all neo-natal deaths. Stunting caused by chronic under-nutrition affects 38.7% of children under 5 years [69].
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There are three main providers of health services in India – the public sector (with Central and State funded components), private for-profit providers, and private not-for- profit providers. Primary care is provided at the community level by primary sub-centres (serving around 5000 people), followed by primary and community health centres (serving up to 120,000 people). Districts are served by a district hospital which provides secondary care, and each state typically provides tertiary care with hospitals and medical schools in large cities. There continues to be an availability short-fall for all these facilities of 20 – 30% in rural areas [69]. There are ongoing major shortages of doctors in government hospitals, with up to half of medical officers positions and 80% of specialist positions vacant in some states [69]. Services in public institutions are often of poor quality with emergency obstetric services unavailable in more than 70% of community health centres (CHCs). And only 21% of primary health centres (PHCs) operate according to minimum standards set by the Ministry of Health and Family Welfare [98]. The most important initiative to increase universal health coverage in the last several decades was the launch in 2005 of the National Rural Health Mission, which was re- named the National Health Mission to include urban areas, in January 2014. It includes a number of flagship programmes such as a conditional cash transfer scheme promoting institutionalised delivery (Janani Suraksha Yojana), the procurement and supply of essential drugs, and digitised health information systems. Health financing in India uses a mixed model with the following three key approaches: i) a tax-based public sector, ii) out-of-pocket expenditure by households availing services from private providers, and iii) health insurance schemes including government, private, and community-based models [99]. India’s health system is one of the most heavily dependent on private health care and out of pocket expenditure in the world [69, 100]. India fails to protect the most needy citizens from financial risk catastrophic health expenditure, pushing millions into poverty and debt [101, 102]. Despite progressive recommendations for integrated primary and preventive health care in India made at the end of British rule in India through the Bhore Committee [103], India and other post-colonial nations implemented a patchwork of vertical programmes but no unified comprehensive health care service [104]. While the clamour for universal health coverage has become louder, there are few promising signs of commitment to this concept with national policy instead focussing on provision of targeted health insurance to cover in-patient admissions, and on amplifying and supporting private health services, and on developing Public Private Partnerships [66, 105]. While successive governments have promised to transform the nation’s unsatisfactory health-care system, India’s expenditure on all health care is a tiny 4.0% of the GDP, one of the lowest rates across the globe, and moreover, it is falling [106]. This massive underfunding leads to increasing inequalities and negatively impacts social determinants of health [107]. India continues as the poorest performer among the five BRICS (Brazil, Russia, India, China and South Africa) countries [69]. A recent review paper identified seven key weaknesses in the current Indian public sector health services [69]: 1. A weak primary health care system 2. Scarce and unequally distributed skilled human resources 3. A large unregulated private sector 4. Low public spending on health 5. Fragmented health information systems
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6. Irrational use and spiralling costs of drugs and technology 7. Weak governance and accountability Addressing each of these weaknesses requires integrated and cohesive strategies that focus on health system strengthening, resources, and policy priority that focuses on primary care and public health [68, 100, 108]. Due to poor reach by the public sector, there is a massive and largely unregulated private health sector which provided more than 70% of outpatient care in 2014. However, many of these practitioners are unqualified or underqualified with one study in Madhya Pradesh revealing that only 11% of sampled private-care providers had a medical degree and only half of providers had completed high school [109]. Widely acknowledged problems include irrational care and excessive investigation, kickbacks for diagnostic tests for doctors, inappropriate and over-prescription, over-pricing, and very limited regulation of health services [68, 69, 108, 110]. Health care is not equitable, affordable, or accessible. 1.2 Community mental health in India 1.2.1 Overview of mental illness and mental health services Mental disorders contribute 11.8% of the total burden of disease in India [111]. At the same time, perhaps only 10% of people with psycho-social disabilities (PPSD) access evidence-based mental health services and less than 1% of the national health budget contributes to mental health service provision [34]. One of the key causes of this 90% treatment gap is the large human resource deficit with an average of just one psychiatrist per 300,000 people in India [34], while high income countries have ratios two hundred times higher or more [112]. A further important component of the mental health care treatment gap in India is under-utilisation of mental health services by the community [42, 113]. Three key factors reducing health-seeking behaviour are stigma and discrimination, low levels of awareness related to mental illness, and the non-responsiveness of mental health services and policies to community needs and perspectives [64, 65, 114, 115]. Other components of social exclusion and the consequent lack of access to care experienced by PPSD include gender, disability, years of education, geography (rurality and State), economic status, and caste [116]. In India, suicide is the cause of twice as many deaths as is HIV/AIDS, and suicide deaths equal the number of maternal deaths. However, unlike these two other causes of death, suicide attracts little public health attention or funding [117]. Different to the profile of suicide in high income countries (HIC), risk factors for suicide completion in a study in rural south India were psycho-social stress and social isolation rather than psychiatric morbidity [118]. Alcohol use disorders are another common mental disorder in India. Among men in India, 4.9% of all Disability Adjusted Life Years (DALYs) can be attributed to alcohol use disorders [119]. Women with mental health problems are especially disadvantaged in India and have multiple pathways to disadvantage that cumulatively and negatively impact on their well-being to a far greater extent than men [120]. They are more likely to be economically and socially vulnerable with diminished opportunity for agency and participation in their own health care and in their communities [121, 122]. Gender based violence (GBV) contributes to poor mental health of women, and women with poor mental health are more likely to experience GBV [123].
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1.2.2 Overview of Indian mental health policy 1943 – current
Against a grim background of sparse health services on the ground, India has produced a series of mental health plans that appear both aspirational and progressive. The summary below outlines a historical overview of the policy and legal context for community mental health in India after Independence and draws from a number of sources [104, 113, 124-128]. A schematic overview of key events linked to the development of mental health policy is provided in Figure 1 below:
Figure 1. A historical timeline of Indian mental health policy
The Bhore Committee of 1946 [103] recommended drafting a new mental health act to replace the Indian Lunacy Act of 1912, establishing new mental hospitals, and creating training facilities for mental health professionals. This advice was largely ignored and from 1946 to 1975 there was no clear-cut national policy for mental health, while national health priorities emphasized control of communicable diseases, primary care, and control of population growth.
Between 1975 and 1981 several different models of community mental health were piloted, leading to the National Mental Health Policy in 1982 which had an explicit focus on integration and treatment of mental illness in primary health care, and community participation in the development of services. Again this was not systematically implemented on the ground but an innovative programme emerged in the early 1980s through the National Institute for Mental Health and Neurological Sciences from a district-level mental health initiative in the Bellary district in northern Karnataka. This programme emphasised training primary care doctors to diagnose and manage severe and common mental disorders and later formed the backbone of the District Mental Health Plan (DMHP) [129]. During the 1990s there was an increasing advocacy presence of mental health NGOs and in 1992 community mental health first featured in a national health budget. Human rights violations in psychiatric and religious institutions were exposed through media, human rights activists, and then two landmark Supreme Court judgements in 1999 and 2001 [130, 131]. The operationalised strategy for national mental health was released as the DMHP in 1996. The objectives of the centrally-funded DMHP included the following:
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1. Provide sustainable mental health services to the community through CHCs and PHCs, and to integrate these services with other services; 2. Early detection and treatment of patients (of mental illness) through CHC and PHC; 3. Reduce the stigma attached to mental illness through change in public attitudes; 4. Treat and rehabilitate mentally ill patients discharged from the mental hospitals within the community [104] From 2002 to 2007 the government re-strategised the DMHP to a National Mental Health Plan (NMHP). This was invigorated by budget increases and the addition of school and suicide prevention programmes in 2008. In 2012 a group of mental health experts representing government, non-governmental organisations, and the private sector was commissioned as the national Mental Health Policy Group to advise the government on priorities for the next funding cycle. The experts conducted intensive investigations into NMHP implementation across India. Their main recommendations were summarised [124] and followed by the launch of India’s first national mental health policy in 2014. This includes a focus on caregivers, social determinants of mental health, mental health promotion, vulnerable groups, and seeks to decriminalise suicide [132]. The new Mental Health Care act was passed by the Rajya Sabha (Upper House of Indian parliament) in August 2016. 1.2.3 Effectiveness of Indian mental health policy There is widespread and near unanimous assessment that the DMHP and NMHP have been imperfectly and incompletely implemented across the country [104, 124, 127, 128, 133-135]. An external evaluation of DMHP identified managerial, administrative, and implementation problems that included lack of human resources, lack of staff retention, inertia in implementation, and difficulties in both accessing and using funds [134]. Other reasons suggested for the lack of success were the absence of leadership, minimal accountability and transparency, failure to integrate with primary and traditional health care, under-spending of allocated funds, and excessive focus on the provision of psycho- tropic medications [124, 127, 128, 133]. DMHP critiques also include the ‘global’ versus ‘local’ discussions occurring internationally [59] i.e. that it has paid insufficient attention to the political economies of health and to diverse local contexts. The Bellary model that worked in North Karnataka was perhaps not a ‘one size that fits all’ across all districts of India. Depending on the teller and the construction of the tale, there are many possible versions of the same story, like the many different narrations of the Hindu classic, the Ramayana [104]. 1.2.4 Legal context for mental health in India The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) [136], was signed by India in 2007, and paints an enabling and empowering setting for PPSD and other disabilities to increase their autonomy and participate effectively in their own care, reducing the caregiver responsibilities as well as stigma and discrimination [137, 138]. India’s current mental health legislation [139] has widely recognised shortcomings [138, 140, 141]. The new Mental Health Care Act [142] proposes some substantial steps forward, including the decriminalisation of suicide, increased infrastructure and resources, and provision for advance directives and nominated representatives [141, 143]. However several have questioned whether it genuinely engages with the enabling framework of the United Nations Convention on the Rights of Persons with Disability [136] and how meaningfully and realistically it can be implemented [138, 140, 144]. Ongoing debate and conflicting understandings of legal
9 capacity for consent [145], lack of harmonisation of legal frameworks [146], as well as delays in the legislation process mean that the legal framework remains a contested and ongoing focus of advocacy for PPSD in India.
1.3 Justification of study This research was first initiated to address the pragmatic need for an evidence based model of community mental health in my role as the leader of a community mental health project in north India. It contributes to the currently embryonic evidence base that informs the optimal approaches for building collaborative actions and interventions to promote community mental health in this context. The need to identify factors that build learning and inclusive communities in LMIC settings, and that promote mental health and resilience, has been emphasised by a number of researchers [14, 54, 132, 147]. Specific gaps that are addressed by each sub-study are summarised below: We did not find any research, either qualitative or quantitative, that described experiences of social inclusion and exclusion for PPSD in North India, although a recent study in South India investigated experiences of discrimination of people with schizophrenia [148]. Neither were we able to identify any quantitative research investigating factors associated with social distance and PPSD in North India. This information is required to inform policy (such as ensuring access to care and opportunity for employment for PPSD) as well as programme actions to increase social inclusion, knowledge, and mental health literacy of all community members. This gap has been clearly underlined in a number of studies [149-151]. Sub-studies I and IV seek to address this gap in a small way. Sub-study II addresses another significant research gap related to caregiving in low- resource countries [152-155]. Furthermore, studies of caregiver experiences set in India have been almost exclusively quantitative and have given insufficient attention to gender [156-161]. This study uses qualitative methods to understand the nuanced topic of gender relations in caregiving [162, 163]. Sub-study III estimates the prevalence of depression in the state of Uttarakhand and contributes to a significant research gap across India. Few studies have investigated the associations between depression and social determinants of health, and almost none have considered the association between depression and caste [164-168]. It also describes help-seeking behaviour of, and health service utilisation by, people with depression, which has received scant research attention in India [169]. All four sub-studies are further justified in their location in India, a LMIC where 90% of the world’s population resides but from where just 10% of published global health research originates [170]. 1.4 Study objectives 1.4.1 Overall aim To analyse the presence and absence of community mental health competence in the upper Ganges region, specifically examining the domains of community-level knowledge and safe social spaces. 1.4.2 Specific aims In the domain of knowledge to investigate: 1. The help-seeking and health service utilisation of people with depression
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2. The prevalence of depression and its socio-political-economic associations 3. Community knowledge, beliefs and attitudes linked to mental health In the domain of safe social spaces to investigate: 4. Experiences of exclusion and inclusion for PPSD 5. The emotional, social, economic, and health experiences of caregivers of people with psycho-social disabilities from a gender perspective 6. Attitudes towards people with depression and psychosis and relationships between social distance, socio-demographic variables, and beliefs about PPSD 7. Community provision and development of safe social spaces
1.5 Theoretical framework The concept of community mental health competency proposed by Campbell and Burgess comprises of the three key domains of knowledge, safe social spaces, and partnerships for action [14]. An overview to these domains is given in the introduction. This framework emerged as a counter voice to a dominant model of global and community mental health which had focussed primarily on access to mental health services and medication, and in which communities until that time at least, had not played a prominent participatory role [14, 57, 65]. Campbell and Burgess underline that in addition to building local ‘voice’ there must be parallel efforts to build receptive social environments where more powerful groups are prepared to listen and respond to local people’s needs and aspirations. The term community describes groups of individuals united by characteristics such as location, shared practices and values (i.e. a profession), common experiences (racism/exclusion), interest (i.e. a hobby), culture, religion, or physical characteristics, such as a health diagnosis [171]. These categories can be organised into two broad camps – communities linked to tangible structures, such as spatial dimensions, and those linked to ‘symbolic’ and intangible dimensions, such as identity, or cultural norms. In this thesis community is understood as a group of individuals who live near each other and interact daily and also as the social environments that can contribute to mental health or distress. Therefore any single community is an interactive space – one where the realities of any one community blend into and influence the reality and outcomes of others [172]. This understanding builds on the social determinants of health report by the World Health Organisation, which clarifies that increased access to political recognition and economic power for marginalised groups is necessary for them to improve the opportunities for health [23]. Communities are not passive recipients or channels of external resources and influence, and instead use these to increase control over their own well-being [14]. I adapted this model of community mental health competency as the framework for this PhD research, expanding on each of the three key concepts using terms from both global mental health and community psychology, with a focus on those most suitable for operationalising a community mental health project. For example, the area of knowledge was expanded to consider the following sub-domains: mental health literacy, help- seeking practices, mental health service utilisation, and framework of disease origin (which I would now refer to as ‘explanatory framework for mental illness’). The framework that I used at the start of the research is portrayed in Figure 2.
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Figure 2. Conceptual framework for community mental health competency at start of thesis in 2014
The four sub-studies that were undertaken for this thesis are aligned with this analytic framework and have the following titles: Sub-study I - Under the banyan tree - exclusion and inclusion of people with mental disorders in rural North India [173] Sub-study II - An asymmetric burden - gendered experiences of caregivers of people with psycho-social disabilities in North India [174] Sub-study III – Cross-sectional study of depression and help-seeking in Uttarakhand, North India [175] Sub-study IV - Social distance and community attitudes towards people with psycho-social disabilities in Uttarakhand, India [176] The domain of partnerships for action was not assessed in this thesis but will be an ongoing area of research after PhD completion.
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2.0 Context and study design
“The microbe is nothing, the terrain everything.” Louis Pasteur 2.1 Study setting The upper Ganga region of North India is characterised by bustling and vibrant towns, green acres of sugar cane, and shady groves of mango trees. Wheat is a common winter crop while fragrant Basmati rice is usually harvested after the rainy season. On the plains large villages of brick houses with 1000 – 8000 residents each, dot the agricultural landscape. The majority of rural families own their house and courtyard but work as labourers on the fields of zamindars (larger land owners). In the hilly areas of Uttarakhand, villages have only 150 – 500 people and houses are made of adobe, wood and cement, with most households owning a small to medium plot of land to grow their own food and some cash crops. A map showing the location of the three districts: Bijnor, Saharanpur and Dehradun, that were the settings for the studies reported in this thesis, and the key geographical features of each district, is displayed below in Figure 3.
Figure 3. Map of India showing the districts of Bijnor and Saharanpur in Uttar Pradesh, and Dehradun (Uttarakhand)
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A profile of key socio-demographic features of each district is summarised in Table 1. Table 1. Socio-demographic profile of the three study districts and national comparison data (Sources: [35, 177, 178]) Indicator National - Bijnor Saharanpur Dehradun India (Uttar Pradesh) (Uttar Pradesh) (Uttarakhand) Total population 1,200 3.6 3.5 1.7 (million people) % population under 15 34.9 35.7 34.2 28.9 years % Muslim 14.2 42.0 46.0 11.4 Sex ratio 963 917 890 902 (female to 1000 males) Literacy 65.5 59.7 61.7 78.4 (% literate female) Literacy 82.1 76.6 78.3 89.4 (% literate male) Maternal mortality 178 222 204 178 Infant mortality 40 62 76 32
While Dehradun district generally present indicators that are similar to or better than the national average, the indicators of both the study districts in Uttar Pradesh suggest greater disadvantage than the national average. 2.1.1 Local explanatory frameworks and help-seeking for mental illness Explanatory frameworks of mental illness reflect the beliefs and perspectives of community members and profoundly impact help-seeking and adherence to recommended interventions [179]. In the upper catchment of the Ganga River the most commonly accessed practitioners are termed Rural Medical Practitioners (RMPs). RMPs predominantly have not had formal training and lack a recognised qualification. They may administer biomedical preparations such as intravenous saline or injectable drugs without indication [180, 181]. Studies of help-seeking preferences by PPSD and their caregivers in urban centres suggest that most families consult a range of religious and traditional healers as well as private biomedical and unregulated RMPs [169, 182-184]. Poor people’s engagement with the health care market commonly results in indebtedness and impoverishment [185, 186]. In all three districts where this research was conducted the NMHP had not been implemented. There were no government psychiatrists, no psychologists, and no government mental health services in Saharanpur and Bijnor [9, 187]. Government primary care services did not generally treat PPSD, nor supply essential medicines such as anti-depressants. In Dehradun there was a functioning State Mental Hospital with two government psychiatrists but no counsellors or psychologists. Private mental health services in Saharanpur district included one private psychiatrist while in Dehradun there were approximately eight private psychiatrists.
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2.2 Organisation that hosted this research The Emmanuel Hospital Association (EHA) is a 45-year-old faith-based organization with a network of 20 rural hospitals and 42 community health and development projects located in 14 states of North and North-East India and is the largest non-profit health care provider in North India. The overall vision of the organization is to support the holistic transformation of communities. It provides affordable healthcare, seeks to empower communities through its community health and development projects, and provides humanitarian assistance during disasters. EHA runs community health programmes related to health, livelihood, income generation, savings groups (economic), literacy, primary education support through non-formal education, adolescent life skills training, vocational training, watershed management programmes, agricultural support, and disaster preparedness. EHA works actively in social inclusion, disability, and mental health. Staff members from three community-based mental health EHA projects in Bijnor, Saharanpur and Dehradun districts assisted with this research through community engagement, undertaking baseline surveys and identifying potential participants for qualitative research. The Shifa project in Saharanpur started in April 2012 while the Society for Health and Rural Empowerment (SHARE) community mental health project in Bijnor started in April 2013; these two projects supported the qualitative research presented in sub-studies I and II through home visits, caregiver support, and skills building, and by facilitating access to care for research participants. SHARE and Shifa projects are both part of the EHA Community Health and Development programmes and have objectives to increase knowledge and skills in mental health among community members, to support and facilitate access to care for families affected by mental illness, and to advocate for increased government services, as well as take actions to strengthen the health system by training existing government clinical and community staff. The Burans project was started in June 2014 and was the site of research for sub-studies III and IV. This project is a partnership between EHA (http://www.eha-health.org) and the Uttarakhand Community Health Cluster (http://www.chgnukc.org). Burans works in four locations, has an annual budget of USD70 000, and employs eight staff and 28 community workers and volunteers. The main goal of Burans is to promote community wellness and resilience by building on existing resources in communities in Uttarakhand state and to facilitate access to mental health care and to strengthen the mental health system. The project has an active and ongoing research focus. 2.2.1 Role of author in the host organisation and research sites I have been employed as a public health physician in the Community Health and Development Programme of EHA since 2010. Since 2012 I have been the mental health programme manager, providing technical support to all community mental health projects funded by EHA including the projects in Bijnor and Saharanpur. This involves visiting each location several times each year, providing training to teams, co-developing project plans, and strengthening implementation. I also founded the partnership project of Burans, and at the time of writing continue as project director.
2.3 Study design The research reported on in this thesis investigates community mental health competence in the upper catchment of the Ganges River using a combination of qualitative and quantitative methods. Different methods allowed me to investigate a number of mental health domains, drawing on the knowledge and experiences of a large
15 number of community members, including quantification of depression prevalence, help-seeking, mental health knowledge, and attitudes towards PPSD, as well as deeper probing of other aspects of community mental health competence (social exclusion/ inclusion, gender relations, and caregiving). The first two sub-studies used qualitative data from western Uttar Pradesh collected in May 2013, but sub-study I focuses on PPSD while sub-study II focuses on caregivers of PPSD. Sub-study III and IV used survey data collected in a large community based cross-sectional survey in Dehradun district, Uttarakhand in July 2014. An overview of the methods used for the four sub-studies is provided in Table 2. Table 2. Overview of the methods used in the four sub-studies Sub-study I Sub-study II Sub-study III Sub-study IV
Study objectives To investigate To describe the To investigate the To quantify experiences of experiences of prevalence and mental health social exclusion caregivers of treatment gap of related and inclusion PPSD using a depression, and knowledge, among PPSD in framework of the associations attitudes, and western Uttar relational gender with social health social distance Pradesh theory determinants preferences toward people with depression and psychosis Study design Qualitative using Qualitative using Community based Community based in-depth in-depth cross-sectional cross-sectional interviews interviews study study Data collectors KM, research KM, research 16-member 16-member assistant assistant survey team survey team Study sample 13 PPSD and 7 18 caregivers of 960 people over 960 people over caregivers PPSD 17 years of age, 17 years of age (representing a and a sub-set of further 7 PPSD) 58 people who screened positively for depression Data analysis Qualitative Thematic analysis Multivariate Multivariate content analysis regression regression analysis analysis
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3.0 Methods
“Acquire the art of detachment, the virtue of method, and the quality of thoroughness, but above all the grace of humility.” William Osler 3.1 Qualitative studies 3.1.1. Sample selection - sub-studies I and II During May 2013, the most torpid month in North India, I went from house to house through walls of gaseous heat, riding on the back of a motorbike, to screen potential PPSD participants using the Global Mental Health Assessment Tool [188]. The first 20 PPSD who fulfilled the criteria of a severe mental illness and consented to participation were included in sub-study I. The vast majority of participants were unwell and had no access to care and seven of the PPSD were not well enough to speak for themselves in the context of an interview. Their caregivers were interviewed as a proxy form of participation to ensure that the experiences of the people most profoundly unwell were captured. Eighteen caregivers of these PPSD identified above consented to participate in recorded interviews, which were used in sub-study II. 3.1.2 Data collection – sub-studies I and II A second visit was made to each participant by the research assistant, Prerana Singh who had been trained in qualitative interview technique, to conducted interviews in participants’ homes in May and June 2013. Waving our papers ineffectually to wave off flies, we conducted in-depth interviews lasting from 45 to 90 minutes using a semi- structured guide that probed for experiences of social connectedness and support, discrimination and exclusion, stress, responsibilities, gender relations, agency, and social inclusion within their households and communities. After completion of the first several interviews, the research assistant worked without my accompaniment. The interview guide was adapted from one previously used to assess experiences of social exclusion among caregivers and PPSD in India, which had been piloted, translated into Hindi and back-translated to ensure fidelity to the meaning [148]. Interviews with caregivers used a similar structure with additional probes related to caregiving. Interviews with male participants were conducted with a male community worker present. Interviews were conducted in Hindi, audio-recorded, and the recordings transcribed and translated. For components of analysis relying on grammatical constructs such as tenses, the research assistant and I discussed the original Hindi words and intended meaning with team members from the relevant communities to ensure that the correct meaning was conveyed in English. The descriptions of exclusion, impoverishment, and lack of access to care by PPSD and caregivers were even more gruelling than the intense heat and flies, but also deeply compelling and moving. Most interviews involved tears, pleas for advice to find effective care, and requests to return to listen to participants’ painful stories. The author reviewed patient-held records of consultations with private and government providers during home-based interviews, including reports of radiological investigations for mental illness, prescriptions, and diagnoses/ assessments by health providers. Key findings of this document review were noted in a research diary. 3.1.3 Data analysis Sub-study I Interviews were analysed using an inductive approach. Qualitative content analysis was chosen as an approach that is attentive to both manifest and latent content of data [189].
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I read and re-read the transcripts of the interviews. Meaning units describing exclusion and inclusion of PPSD, driven by the data, were identified and coded. Emerging codes were discussed by three of the authors (KM, MK and IG) and grouped to form categories. Finally, cross-cutting themes were sought, to make the latent content in the text explicit. Sub-study II The data was analysed inductively and thematically using an approach inspired by Braun and Clarke [190]. I inductively coded seven representative transcripts yielding over 50 codes. Codes were reviewed and discussed by myself, IG and MK and condensed into 9 interim themes through recognition of consistent patterns inherent in the data. I then coded and analysed the remaining 11 transcripts using these 9 interim themes, which were themselves iteratively revised by collapsing some themes and the addition of two new themes. The themes were again discussed and refined with my PhD supervisors, and the eventual nine themes were then adapted and condensed into three meta-themes derived from relational theory [19]. Open Code software was used to help in the coding process [191]. An example of the thematic development process used in sub-study II is presented in Table 3 below. Table 3. Example of the coding and thematic development process Original text Codes Interim theme Final theme There is so much of Anxiety and stress for Physical health Impacts Embodiment difficulty but I had to caregiver on caregiver work even while I Compulsion to work cry. Where can we Somatic symptoms - go? With his illness caregiver it has become more difficult and tough. I cry and I just keep working. I even feel ill at times.
3.2 Quantitative studies 3.2.1 Sample selection We selected 960 people from 30 randomised clusters. Cluster sampling was conducted in three phases: (1) ward or panchayat (administrative unit, approximately 5000 people), (2) household, and (3) participant. We used STATA [192] to calculate that a sample size of n = 480 was required to estimate a depression prevalence of 10% (based on other Indian population based studies) [165, 167]) using a sampling frame of 235,000 (population of 2 blocks of Dehradun district), with 30 clusters and 95% confidence intervals. To account for the effects of clustering we allowed a design effect of two, giving a final total of 960 persons. Clusters were stratified based on rural: urban ratios in the districts as identified in the 2011 census [35] to select 21 urban and nine rural clusters. These were selected by random number generation from the publicly available list of census panchayats and wards. To select at household level, the surveying team walked to the centre of the community, and spun a pen to ascertain which direction to start. Every 6th house on the right was surveyed, and at each junction, roads/ alleys on the right were followed. If no- one was present at a selected household, the team re-visited that household later. If no- one was present on the second visit, the first house to the right was selected. Only one person from each household was surveyed. Generally male field staff surveyed male respondents, and female staff surveyed female respondents. Once the requisite number of female participants was reached (n=480), all survey staff surveyed male respondents.
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Inclusion criteria were that participants should be occupants of a household, 18 years or older, and able to consent, comprehend, and respond to a survey. 3.2.2 Data collection III and IV Data collection was carried out in the steamy monsoon rain of July and August 2014, by three field based teams armed with umbrellas and motorcycle ponchos. Each consisted of a team leader, four community workers, and one field supervisor who rotated and supported all three field teams. All were employed by Project Burans, with 11 male and five female staff represented. Staff received eight hours training in ethics and informed consent taking, data collection, sample selection, use of the survey tool, and data recording. All staff completed a sample survey which was reviewed in a second training session. Paper surveys were delivered to the project office where data was entered, with a quality check of every 10th paper by a data quality supervisor. Generally male field staff would survey male respondents, and female staff survey female respondents as more socially acceptable gender interactions. The overall process was supervised and supported by a project coordinator and myself. The comprehensive survey tool was piloted, validated, translated to Hindi and back translated to English by the Project for Improving Mental health care (PRIME) team in Sehore, Madhya Pradesh, which is part of the larger consortium [193]. The survey was interviewer administered. Components reported in sub-study III and IV were:
Socio-demographic information including indicators of housing quality, indebtedness, caste, marital status, highest education level attained, and employment status. General health help seeking behaviour and health service utilisation Type of health service provider utilised Medication utilisation Results from administration of the Patient Health Questionnaire (PHQ9) – a self-report screening tool assessing clinical depression (validated internationally and in India) [194]. This questionnaire comprises nine items, each is scored 0 to 3, yielding a severity score from 0 to 27. Additional data fields reported in sub-study IV were:
Questions about one of two vignettes, one describing a 45-year-old woman, Ranibai, who has typical symptoms of depression, and the other describing a 25- year-old man, Chotelal, who has classic symptoms of psychosis. Generally, women were presented with Ranibai’s story, and men with Chotelal’s story, as they were more likely to connect to a person of the same gender. The respondents’ relationship with anyone who has a mental illness, or who is like the person presented in the vignette. A composite index of social distance based on a five-item modification of the Social Distance Scale [25, 26]. Participants indicated their preference for engaging in a relationship with the person in the vignette in terms of being neighbours, working together, engaging socially, being friends, and that person’s marriage into the family, using a five–point Likert scale. A five-point Likert scale was used to assess the beliefs and attitudes of participants regarding mental health generally.
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3.2.3 Analysis III and IV Survey data were analysed using STATA version 13.1 [192]. Uni-variable and multi- variate logistic regression analysis was performed using all relevant socio-economic variables and significant variables (p<0.05). The dependent variable was dichotomised: no depression = 0, depression= 1. All respondents with a PHQ9 score of greater than 9 were categorised as being ‘depressed’. The Chi squared test was used andanalysis of the data is presented in Tables 3 and 4. A p value <0.05 was considered statistically significant. Additional findings related to the thesis objectives and analysed from data collected in sub-studies I – IV are also presented. For the qualitative data I used an approach of thematic analysis as described for sub-study II [190, 195] while quantitative data were analysed using STATA version 13.1 [192]. Observations were recorded in a research diary and reviewed. Analysis of findings related to patient held records were discussed with mental health professional colleagues to assess rational versus irrational investigation, management, and prescriptions. 3.3 Ethical considerations 3.3.1 Sub-studies I and II All participants including caregivers were informed about the nature and purpose of the study. A plain Hindi language summary describing the purpose of the research and the possible uses of the data was either given to participants to read, or read aloud to participants with limited literacy. All PPSD and caregivers gave consent to participate as participants. Proxy consent from a close family member was also given for participants who were too unwell to participate in interview and therefore assessed as having possible reduced capacity to give informed consent [196]. All participants with mental illness were offered support for access to care and ongoing support by project staff. The study was approved by the Institutional Ethics Committee of the Emmanuel Hospital Association, New Delhi in April 2013. 3.3.2 Sub-studies III and IV All participants including caregivers were informed about the nature and purpose of the study. A plain Hindi language summary describing the purpose of the research and the possible uses of the data was provided in writing and also read aloud to participants with limited literacy. Informed consent was obtained from all participants. All participants had a total PHQ9 score calculated at the site of interview, and those with a score greater than 10 at the time of screening were explained the meaning of their finding as indicating possible depression, given a brochure about depression which contained written information about how to access mental health services. The study was approved by the Institutional Ethics Committee of the Emmanuel Hospital Association, New Delhi in April 2014.
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Photos of data collection – in-depth interviews for sub-study I and II, Uttar Pradesh (Photo credit – SHARE)
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Photos of data collection for sub-studies III and IV, Uttarakhand (All photos published with permission)
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4.0 Findings and discussion
“There is, in reality, a hierarchy of citizenship under the thin veneer of equal citizenship guaranteed under the Indian Constitution. Full citizenship is enjoyed only by the middle and upper classes – and even within these groups it is enjoyed much more fully by urban, upper caste, Hindu, non-tribal, able-bodied, heterosexual men.” Harsh Mander p4[31] Research findings are presented and discussed below, grouped by the original theoretical framework of community mental health competency. While this research set out to describe the domains of mental health competency observed in rural and semi-urban North India, the results described have emphasised that many of the sub-domains of knowledge, safe social spaces and partnerships for action are either absent or only present to a limited extent in this setting. For example, the prevalent environment of discrimination and exclusion that exists for both PPSD and caregivers means that there are few safe social spaces for public discussion and critical reflection on mental health. First I focus on the domain of knowledge with its sub-domains of mental health literacy and explanatory models of mental health followed by discussion of these findings. I then focus on findings related to the safe social spaces with its associated sub-domains of social exclusion and inclusion, social support, social participation, and ahimsa (non-violence). Further findings critical to mental health competency that did not fit tidily within the original research framework emerged such as gender equality, lack of social oppression/ hierarchy and access to schooling. The primacy of social determinants of health as a domain of community mental health competency needed to be reflected in the framework. Additionally, the need for access to care emerged as a key domain reflecting findings related to community members’ urgent priority for care, help-seeking and health service utilisation. These new domains are proposed as additional domains of community mental health competency. All findings are synthesised into a new conceptual framework for community mental health competency where I propose the visual metaphor of a tree (with foundational roots and branches that divide further to leaves and fruit) as showing unity (the tree is one organism) related to community mental health competence, while the branches, twigs and leaves illustrate the sub-domains of knowledge, safe social spaces, access to care, and partnerships for action. This is depicted and discussed in greater detail at the end of the Findings and Discussion in section 4.5. An overview of the socio-demographic identities of participants in sub-studies I and II is provided below in Table 4. Table 4. Overview of socio-demographic details of participants in sub-studies I and II Variable Detail PPSD Caregiver Sex Women 9 11 Men 11 7 Age Range 22 to 50 years 25 to 50 years Mean age 38 years 38.2 years Religion Muslim 9 7 Hindu 11 11 Employment Government health worker 1 0 Responsible for house 7 of 9 women h 0 of 11 men Income generation of any other kind 4 of 11 men 7 of 7 men 0 of 9 women 4 of 11 women
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The sampled survey population for quantitative sub-studies III and IV was 960 people. Table 5 summarises demographic characteristics of survey participants. Table 5. Demographic characteristics of participants in sub-studies III and IV Variables Female Male Total N (%) N (%) N (%)
Total 480 (50.0) 480 (50.0) 960 (100.0) Age (years) 18 -29 159 (33.1) 121 (25.2) 280 (29.2) 30 – 39 145 (30.2) 101 (21.0) 246 (25.6) 40 – 49 100 (20.8) 101 (21.0) 201 (20.9) 50 – 59 44 (9.2) 80 (16.7) 124 (12.9) 60+ 32 (6.7) 77 (16.1) 109 (11.2) Marital status Married 366 (50.4) 360 (49.6) 726 (75.6) Divorced/ separated/widowed 48 (10.0) 13 (2.7) 61 (6.4) Single 66 (13.7) 107 (22.3) 173 (18.0) Rural/ urban Rural 145 (30.2) 143 (29.8) 288 (30.0) Urban 335 (69.8) 337 (70.2) 672 (70.0) Education None/ incomplete primary 109 (22.7) 51 (10.6) 160 (16.7) Primary completion 88 (18.3) 90 (18.7) 178 (18.5) Secondary completion 199 (41.5) 273 (56.9) 472 (49.2) Graduate 84 (17.5) 66 (13.7) 150 (15.6) Religion Hindu 401 (83.5) 308 (82.9) 799 (83.2) Muslim 71 (14.8) 70 (14.6) 141 (14.7) Other 8 (1.7) 11 (2.5) 19 (2.1) Caste Scheduled Caste/ Tribe 122 (25.4) 116 (24.2) 238 (24.8) Other Backward Caste 74 (15.4) 73 (15.2) 147 (15.3) General 284 (59.2) 291 (60.6) 575 (59.9) Employment status Professional 30 (6.3) 80 (16.7) 110 (11.5) Skilled manual 34 (14.4) 203 (85.7) 237 (24.7) Unskilled manual/ self-employed 261 (54.4) 102 (21.3) 363 (37.8) Unemployed 155 (32.3) 95 (19.8) 250 (26.0) House-type Low-quality 89 (18.5) 71 (16.5) 168 (17.5) High-quality 391 (81.5) 401 (83.5) 792 (82.5)
The survey population had a mean age of 39.4 years and a median age of 37.5years. The mean number of years of education completed was 8.0 years and the median was 9.0 years. The sample differs significantly from the wider Uttarakhand population [35] with greater representation of middle-aged and unschooled people, and those identifying as Scheduled Caste/ Tribe. Key findings of the thesis are grouped in relation to my revised theoretical framework of community mental health competence and then grouped further into sub-domains. These findings and their sub-study sources are summarised in Table 6 below.
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Table 6. Overview of key findings in the revised community mental health competency framework Broad domain Sub- domain Major findings (relevant sub-study) Knowledge Mental health Beliefs about mental illness drive some components of stigma and literacy exclusion (I, III, IV) People seeking non-evidence based care (e.g. IV fluids for mental distress) showed lower preferences for social distance from PPSD (IV) Mental health literacy is low to moderate (I, III) Explanatory Understandings of the origins of mental illness are diverse and mixed models of – they include concepts of deserved punishment/ merit, biochemical mental illness imbalance, curse, trauma, possession, and social determinants of health (I, II, IV) Safe social Social exclusion PPSD experience harsh, persistent social exclusion in their spaces and inclusion communities (I, IV) Household members predominantly exclude PPSD from decision making and self-determination (I) Community members prefer greater social distance from people with severe illness (IV) Women experience persistent and harsh disadvantage that limits their autonomy, access to resources, and reduces social inclusion (II) Gender order and caregiver identity defines whether caregivers of PPSD receive social support (II)Community members with familiarity with PPSD show reduced social distance preferences (IV) PPSD can feel included through collective actions of social support, belonging, and participation (I) Actions for social inclusion are part of a social norm of reciprocity (I) Social and PPSD participate in most religious and social functions (I) economic PPSD contribute to many household and agricultural responsibilities participation (I, II) PPSD rarely participate economically (I, IV) Social participation for women caregivers is less than men caregivers, in particular head of household female caregivers (II) Small gestures of resistance to the prevailing gender order include women generating household income, and men assuming domestic responsibilities (II) Social support Social support towards male caregivers is prevalent (II) Social support to PPSD and caregivers identified as solace and belonging (I, II) Social support often built on norms of reciprocity (II) Ahimsa (Non- Experiences of inter-personal violence are highly prevalent in these violence) communities (I, II) Social hierarchies often interact inter-sectionally and dynamically (gender order, caste, social class structures) to limit participation and increase risk of mental illness for people who are socially excluded and disadvantaged (I, II, III, IV) The converse theoretical implication is that non-violence and social equality are likely to enhance mental health in communities Access to care There is very 100% of people with depression had not accessed first line depression poor access to therapy (III) care 96% of people with depression had not accessed anti-depressant medications (III) Urgent priority Caregivers describe desperation efforts to find effective care (I, II) to identify Caregivers/ PPSD describe high debt, impoverishment resulting from effective care help-seeking (I, II)
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Health service Moderate to high utilisation of private and public health services (III) utilisation Very low utilisation of mental health services, in part due to their absence (I, III) Help-seeking Care-seeking is creative, persistent, costly (I, II, III) behaviours People with depression (PHQ9) largely seek care among biomedical service providers (III) People with severe mental distress seek care with religious, traditional, biomedical, formal, and informal providers (I, III, IV) Barriers to Barriers are geographical, economic and cognitive (I, II) accessing care Exploitation by Biomedical providers over-investigate and treat PPSD irrationally as care providers strategies for personal financial gain (I, II) Much of care provided as described by PPSD and caregivers is ineffective and at times harmful (I, II) Traditional healers also make excessive financial and other demands on PPSD (I, II) Social Housing quality, People living in poor quality housing are twice as likely to be determinants education, depressed as those in high quality housing (III) of health caste, People who have taken a recent loan are three times more likely to be indebtedness, depressed as those who haven’t (III) employment People with no schooling are four times more likely to be depressed as those who have completed tertiary studies (III) The people most oppressed by the social hierarchy of caste are twice as likely to be depressed as those most advantaged (III)
4.1 Knowledge
Never, never be afraid to do what is right. Society’s punishments are small compared to the wounds we inflict on our souls when we look away. Martin Luther King 4.1.1 Mental health literacy Mental health literacy has been defined as ‘knowledge and beliefs about mental disorders which aid their recognition, management or prevention’ p182, [197]. Findings from sub- studies I and II underlined that community members felt they did not have the knowledge they needed to provide or find effective care for their family members. Participants repeatedly requested data collectors to provide information on the diagnosis of their family member, and advice about where to find help. This is illustrated in the quote below where a mother asked the interviewer for information and assistance in finding effective care for her son: “Financial issues are something which I don’t feel would matter because there is nothing more important than our son’s health. If needed I will borrow money or sell my land if it would help my son’s treatment. (..) But can you please tell us, what is wrong with our son and what should we do to cure him. We are so desperate that our son becomes well.” 45-year-old woman, mother of PPSD The impact of poor mental health literacy combined with poor access to care was devastating for some PPSD and caregivers. One of the participants in sub-study I from Bijnor district, was Aman, a 25-year-old man with psychosis who was too unwell to be interviewed himself. When we first visited him, he lived shackled on the roof of his house, with a metal chain around his ankle attached to a steel girder. He sat all day under a corrugated iron shack on top of the roof
26 as crude shelter from the sun and rain. Aman’s food was passed through a metal grill by his bhabhi (sister-in-law). His bhabhi (main caregiver) explained that the family felt terrible having to keep him shackled but after several events of frightening violent behaviour where they did not know how to manage him or where to get care, this was the only option they felt open to them. A few months after our interview with Aman’s family, our EHA community staff were told that Aman had died from an overwhelming infection that had started with a leg ulcer. His family reported that they didn’t know where to get care, that they were too scared of his violent behaviour to risk transporting him to a health provider and that they were worried about possible catastrophic expenditure required for care. Findings related to mental health literacy were also reported in sub-study IV which probed respondents’ knowledge and beliefs about either a person with depression or a person with psychosis, presented in a vignette format. More than 50% of respondents believed that mental illness (depression or psychosis) is a sign of personal weakness. Around 95% of respondents for both vignettes thought that talking to a family member or friend and visiting a primary care doctor would be helpful, while only one third of respondents thought the same regarding consulting a traditional healer. Nearly half of respondents thought taking vitamins and tonics and/or a saline drip would be helpful. 4.1.2 Explanatory models of mental illness Explanatory models are frameworks used to understand a person or a community’s unique perspective [198] and in mental illness are part of the collectively owned community knowledge in a given cultural context. The data presented here from both caregivers and PPSD in sub-studies I and II illustrates their diverse understandings of the origins of illness, with bio-medical and magico-religious explanatory frameworks operating simultaneously. The key constructs used by community members to explain the symptoms and signs of mental illness were punishment, divine will, mental imbalance, curse, side-effects of other medications/ marijuana use, family relationship difficulties, and stress. Participants described illness occurring as a punishment, for example, a woman who had post–partum psychosis understood that it was as a result of having borne five daughters. Another woman described that her mental problems started after she had touched a tabeez (an amulet of cloth enclosing verses of the Koran written on paper wrapped inside) which her relatives regarded as a paapi (sinful) superstitious action. Another prevalent framework among participants from the Islamic tradition was to understand the mental illness as divinely ordained as described below: “It is Allah who does all. Except for him there is no big engineer or doctor who could do anything. Until and unless the Master of the Creation commands, nothing can happen. ( ) Everything happens by Allah’s will – but there is always a feeling of despair in my heart when such things happen.” 36-year man, husband of PPSD Participants also described mental distress occurring as a result of a curse on the affected person or even of the whole household. Multiple magico-religious terms were used reflecting the prevalence of multiple faith traditions and included the following: possession by djinns (ghosts in an Islam tradition), opreh (evil eye), patda (curse that limits a lactating woman’s milk production), doosht atma (evil spirit), bhoot (ghost in Hindu tradition), sayani (person who does wrong, like a dacoit), and kala jhaddu (black magic). The wife of a PPSD described her understanding that her whole family had been cursed in the quote below: “People say and we also say that someone has done something (like cursing) against our family. As well as my husband’s illness, my brother
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had an injury and another brother has become an alcoholic. We also felt there might be something in the house.” 35-year woman, wife of PPSD Summarising the impacts of low levels of knowledge and the concurrent explanatory models used is an account by a 28-year-old woman who describes the impact of using concurrent pseudo-biomedical and magico-religious frameworks and illustrates her own critical analysis as well the quote below: “First my head x-ray was done by doctors in Seohara and the doctors said there is inflammation in the nerves. They gave me an IV (intravenous) drip but after sometime the problem started again. Then Dr XX in Muradabad got a CT (computed tomography) scan done and said that there was a growth in the brain but that it will get okay gradually with some medicines. ( ) Then as most of the people in the village practice witchcraft, there was this Brahmin girl who used to visit from Saharanpur and conduct hawans so I was taken to some of these hawans. But I believe these hawans are all ways of fooling people: offer this, bring that, donate money, and pray to this god and so on. I have seen so much of all this.” 28-year-old woman, PPSD Findings in this research suggest that many community members including those directly impacted by psycho-social disability, did not have access to basic information about mental illness which could aid recognition, diagnosis, and management. The need for simple and potentially life-saving information to be widely available is hard to dispute yet I hesitated to use the term ‘mental health literacy’ in the model of community mental health competency, in light of valid concerns around ‘whose knowledge counts?’. Potentially coercive or exploitative flows of power often accompany ‘building knowledge’ interventions and bio-medical explanatory frameworks too frequently trump local explanatory frameworks [57, 60]. The seemingly innocuous concept ‘mental health literacy’ cannot be simply addressed by experts delivering education sessions to passive community members [14], which can have negative impacts. Evidence from both India and other countries suggests that promoting Western biomedical explanatory models of mental illness may actually increase stigma in some settings [199-201]. Literacy and knowledge does not only flow uni-directionally, and poor communities also use external knowledge and power to advance their own interests [202]. Campbell discusses knowledge production as most effective in a relational process through alliances, networks, collaborations, and social movements [203]. Pathways forward propose that knowledge exchange occurs as a dialogue where professional and community expertise are given equal status in a ‘public sphere’ [204], where knowledge is shared and debated to enable the integration of often unfamiliar medical knowledge with local frames of reference [14]. This seems particularly important in North India where there are entrenched social hierarchies and a prevailing tendency to privilege the voice of the doctor/ expert [94, 205]. I chose nonetheless to use the term mental health literacy in order to highlight the concept that a core knowledge about mental health should be accessible to all people (as implied by ‘literacy’), and to acknowledge that there can be dire outcomes for PPSD in its absence (as evidenced in Aman’s story). Building mental health literacy however requires a nuanced approach that engages directly with local knowledge, belief systems, and culture. Examining how this is best done in a north Indian context warrants further research. Pluralist explanatory models used by participants in sub-studies I and II have been described in other studies in India [64, 181, 182, 206-211]. Enhancing mental health literacy among community members as well as building on local concepts of mental illness and health in a
28 critically reflective dialogue, using approaches such as ‘dawa aur dua’ (medicines and prayers) seem promising ways forward to increase treatment and care of PPSD [57, 209]. An example of a Burans staff member promoting mental health literacy in a corner meeting conversation in a community in Uttarakhand is shown below in Figure 4.
Figure 4. A community meeting with a Burans project social worker, children and a traditional healer discussing mental health in Selaqui, Dehradun
4.2 Safe social spaces
“This feeble blemished light, this dawn mangled by night This is not the morning we had all so longed for ( )
Somewhere there must be the stars’ last resting-place, Somewhere, the verge of night’s slow-washing tide, Somewhere, a harbour for the ship of heartache” Faiz Ahmed Faiz, 1947 4.2.1 Social inclusion/ exclusion Findings from sub-study I showed that experiences of social exclusion were harsh and dominant for PPSD. The following nine themes of 12 that emerged were linked to social exclusion: distancing, disregarding, negative judgement, social isolation, minimising negative judgements, unworthiness, economic violence, verbal violence and physical violence. The quote in the box below illustrates themes of distancing, verbal violence and social isolation:
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“People would make fun of me and laugh at me. When I heard what they said it would make my heart beat fast and I would feel very restless. ( ) Then people didn’t want to come and sit with me and they stopped coming to my house to visit and I felt very bad.” 28-year-old woman, PPSD These findings triangulated with sub-study IV which showed prevalent preferences in the community to keep sufficient social distance, particularly from people with a psychotic disorder, linked to community beliefs that they were dangerous. Social exclusion can be understood in the model of community mental health competencies as a mediator between social health determinants and health outcomes. Sen’s capabilities framework is based on what people are able to do, while recognising inter-individual differences and diversity in society that determine resource need [212, 213]. The impacts (and also evidence) of social exclusion for PPSD included reduced access to care, lower income, increased poverty and reduced social capital [27, 214, 215]. A recent study set in Delhi examined the risks of multi-dimensional poverty associated with the stigma of severe mental illness. It found a strong association between poverty and stigma, and that women and people from oppressed castes were most negatively affected by stigma, which was a strong predictor of poverty. Exclusion from employment and lack of income were the strongest contributors to this multi-dimensional poverty [216]. Sub-studies I and IV point towards three potentially modifiable drivers of exclusion: Firstly, low knowledge and awareness is prevalent and seems to fuel some of the misconceptions and negative judgements apparent in India, such as belief that a mental illness is contagious [41, 209, 217]. Increasing access to effective knowledge, mental health literacy, and culturally and contextually relevant information is important to reduce social exclusion [151, 209, 217]. Secondly, excluding words and behaviours were in some part fuelled by illness behaviours of PPSD (for example socially unacceptable behaviours such as rubbish collecting) which reflected the fact that most participants in sub-study I had chronic, untreated severe mental disorders that can lead to a vicious circle of exclusion. This demands ongoing efforts to increase access to care [148, 218, 219]. Thirdly, familiarity with PPSD was associated with a reduced desire for social distance, an association that has been widely observed elsewhere [24, 217, 220, 221]. Increasing social contact with PPSD has been identified in HICs as one of the most effective anti-stigma measures and should be considered in programmes for LMIC contexts [151, 201]. Three themes of social inclusion, namely social support, belonging, and participation shone shafts of light that dappled with the prevailing darker themes of social exclusion. The first two are discussed below, while participation is discussed under a separate heading. Social inclusion is defined as “a virtuous circle of improved rights of access to the social and economic world, new opportunities, recovery of status and meaning, and reduced impact of disability” [222]. In the global mental health literature, social inclusion requires an understanding of freedoms (a social model of disability) as well as functioning (activities and achievements) [223]. Social inclusion can therefore be understood as a process where PPSD ‘increasingly develop and exercise their capacities for connectedness and citizenship’ [28]. Sub-study I investigated experiences of exclusion and inclusion for PPSD which cannot be understood as a static state but a fluid process: “The lines between inclusion and exclusion turn out to be quite blurred, particularly in that superficial inclusionary moments cannot be taken as evidence of a deep-seated inclusionary tendency” [224](p.232).
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Social inclusion engages in the community mental health competency framework, as both a noun and verb ‘branch’ of safe social spaces. PPSD need rights of access to participate in communities in order for engagement in critical dialogue and reflection. Social inclusion can also be seen as requisite for participation in partnerships for action, another bough of community mental health competency that has not been probed in this research. There is a clear need for further research to investigate how to effectively enhance receptive environments and strengthen social inclusion for PPSD and caregivers in an Indian context. 4.2.2 Social support Some PPSD and caregivers described substantial support from neighbours during periods of mental distress, which was interpreted as a marker of acceptance and belonging. Support was described in two main forms: firstly, others taking responsibility for the PPSD and caregivers’ normal responsibilities, and secondly, neighbours and relatives providing resources to take the PPSD to health and healing services. Practical support took many forms and included feeding and caring for the PPSD and /or caregivers’ children, helping with housework and harvesting, lending money for health costs, and providing support to caregivers, as illustrated in the quote below: “Two or three neighbours would help take her on the bus and to visit the doctor’s clinic. Our community members also helped a lot when she would go out of the house and wander around in the fields. Whether they were young or old, neighbours who found my wife out roaming would take her hand and bring her back to me.” 40-year-old man, husband of PPSD Many PPSD and caregivers described ongoing positive relationships with relatives and family members as important for their own wellbeing and sense of belonging. Female PPSD in particular described the importance of their maternal families who in several instances were the primary source of care as quoted below: “My brother and my sister’s families both kept visiting me and we would also visit them often, although my in-laws broke all contact with us once my son started having these problems.” 44-year-old woman, mother of PPSD The critical thinking domain of safe social spaces described by Campbell and Burgess proposes that critical reflection on the social and cultural drivers of distress can act as a springboard for discussion about collective responses to enhance mental health [14]. These findings describe community norms related to social support of community members impacted by mental illness and community member’s critical reflection on these. Several respondents reflected on why they had received significant social support during the period of illness and described a community norm of mutual support and assistance. A PPSD-caregiver duo who were both of Dalit (SC) identity, described membership of an oppressed caste group as well as a norm of reciprocity, as key factors that contributed to neighbourly support and, as described below: “Here everyone gets by only with difficulty (talking about own Dalit community). We have a custom that if someone is sick then neighbours will help and therefore you could have a good relationship with your neighbour. (But) it is the kind of helping that you know they have to help you also in your time of need. For a very small thing like a spoon of salt we can take from our neighbour. But even if I take 1 kg of rice then a few days later I must give it back in full to that neighbour. Also we have a buffalo at this time, it is giving milk. So we are giving to our neighbour’s household one pauv of milk each day for the three months while their buffalo is not giving
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milk as she is in calf. Then when their buffalo gives birth they will be getting milk and will give to us one pauv each day for 3 months.” 45-year-old woman, PPSD Social support can be defined as resources provided by other persons [225] and in these findings social support led PPSD and carers to feel included and contributed to their sense of belonging. In the context of rural North India, in sub-studies I and II social support emerged as an important domain of safe social spaces. The importance of social support to protect and enhance mental health in an Indian context for both PPSD and caregivers has been described in other studies and is perhaps particularly valued in the absence of an adequate social welfare system [226-229]. It has also been identified in multiple contexts as an independent social determinant of health [230] and both protects and enhances recovery from mental illness [230, 231]. In India and other South Asian countries where personhood is socio-centric (identity is framed by the family / religion / caste/ social class one belongs to), models for community mental health should acknowledge that families are still heterogeneous [232, 233]. Further research is needed to probe the types and levels of social support as well as norms of reciprocity hinted at in these finding. Understanding how social support operates in different communities is critical to strengthen social support and its contribution to safe social spaces. 4.2.3 Social participation Opportunity for participation was a key theme that emerged in sub-study I. The majority of PPSD had no expectation that their mental health status could be concealed yet felt free to participate in community activities. Most PPSD described freedom to visit neighbours houses as they had before their illness, and to attend weddings, social functions, and places of worship. Other participants said that they didn’t attend religious functions or weddings as they preferred not to go out of the house. Participation could be conditional, more tolerated than welcomed. One woman described how she attends community gatherings but she does so more as a spectator than an active participant, in the quote below: “From the start my nature has been when I go to a wedding or function that I stay quiet and do not talk or eat much. I mostly like to go to the weddings to see what clothes the other women are wearing.” 35-year-old woman, PPSD The majority of PPSD described exclusion from decision-making even at household level and none described opportunity to participate in community or extended family decision-making. This exclusion extended also to female head of household caregivers in the analysis of sub- study II. The importance of community participation as empowering participants has been described in rural South Africa [234]. Three key justifications for community participation in health programmes can be summarised as firstly, participating in ‘task shifting’ i.e. in delivering services in resource poor contexts as trained lay community members; secondly, increasing the reach of services to the most vulnerable and inaccessible sub-groups in a community; and thirdly, community participation as an essential requisite for a health enabling community that embraces treatment, prevention, befriending, and advocacy [235, 236]. Baumgartner defines four key features of social inclusion as: 1. a sense of belonging; 2. active participation in community and civic life; 3. a sense of agency and capacity to choose to participate; and 4. opportunity for participation [223]. This research underlines the importance of participation as part of the domain of safe social spaces, which includes opportunity for participation as well as the opportunity to choose whether to participate.
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4.2.4 Ahimsa / Non-violence Ahimsa is a Sanskrit term that means ‘not to harm’ or ‘compassion’ and is a key tenet of Hindu, Buddhist and Jain religions. It is the opposite of the term ‘himsa’ meaning injury or harm. A key finding from sub-studies I and II was the high prevalence of interpersonal violence occurring among caregivers and PPSD, and in their communities. Verbal violence from other community members (derision, ridicule and name-calling) was a frequent experience for PPSD and caregivers. The impact of this verbal abuse was that PPSD chose not to leave their home, and reduced their social interactions and engagements. The finding of economic violence (complete disinheritance of a male family member with mental illness) was also described by participants from three households in sub-study I. Physical violence was described as occurring within households by the majority of PPSD- caregiver dyads. It included violence by family members and carers against the PPSD, as well as actions of violence by the PPSD. A woman caregiver described how her father regularly beat his son who lived with psycho-social disability although he ‘tried not to’, in the quote below. “We feel angry that my brother is not working but we also feel sorry at his condition, but I just stay silent about my anger. But my father beats my brother when he feels angry though actually he tries his hardest not to beat him.” 23-year-old woman, sister of PPSD Violence against women was a prevalent experience for women as both caregivers and PPSD. It was described by participants in a very matter-of-fact way, suggesting violence is a routine part of the landscape for women in these communities. The wife of a PPSD describes her experience of physical violence below: “He used to untie our neighbour’s cattle and beat our neighbours also. He even stole things from our neighbours’ houses and we just couldn’t even sleep hearing all of these problems. When I came home (from the fields), he would trouble me a lot and I’d even try to hide from him. At times he beat me with a stick or threw stones at me. Finally, he took me and left me at my mother’s place.” 28-year woman, wife of PPSD These findings imply that PPSD experience higher rates of violence than those in the general population, a finding also described elsewhere [237-240]. Findings also indicate that domestic/ gender based violence is highly prevalent in this study setting. Other studies have showed that domestic violence occurs in more than 40% of homes in Northern India [82, 83, 241]. Women who experience intimate partner violence have increased risk of physical and mental illness, increased poor reproductive health outcomes, as well as poorer outcomes for their infants [242], and there are clear associations between gender-based violence and poor mental health in India and beyond [84, 240, 243, 244]. Children and young people living with domestic violence are also significantly affected and are at increased risk of emotional, physical and sexual abuse, of developing emotional and behavioural problems and other life adversities [245],[245], as well as being more likely to perpetrate gender based violence themselves [246]. Safe social spaces by definition should be safe, and therefore free of violence. Because inter- personal violence emerged as such a strong finding from this research, I have located it specifically within the domain of safe social spaces in my theoretical framework. While findings from this research focus entirely on the occurrence of inter-personal violence, the opposite of violence, ahimsa, includes non-violence in one’s words, thoughts, and deeds. The theoretical implication is that non-violent processes of communication, problem solving, and
33 conflict resolution that follow a path of ahimsa are an important part of safe social spaces, and support communities to be mentally healthy. There is clearly a link between low knowledge, unsafe social spaces, and violence as each contributing to each other, and collectively leading to reduced mental wellbeing in communities. 4.3 Access to care
“Is there no balm in Gilead? Is there no physician there? Why is there no healing for my people?” Jeremiah 8:22 (The Bible)
While access to care can be implied in the original framework with help-seeking behaviour and health care service utilisation mentioned as components, the stark absence of access to care found in this study, and in many LMIC settings, undermines effective, appropriate, accessible, affordable primary mental health care, which is requisite for community mental health competence. The lack of access to care for communities in this study was illustrated by the treatment gap of 100% for access to first line treatment for depression (counselling) in sub-study III. Thematic analysis of qualitative data from sub-studies I and II revealed the following key themes related to access to care:
Urgent priority for identifying care Health service utilisation Barriers to accessing care were geographical, social, financial, cognitive and philosophical Exploitation of families affected by mental illness by providers 4.3.1 Help-seeking Efforts to obtain care and healing were persistent and involved large financial and time commitment by family members. One woman told how she had travelled with her son to the dargah (shrine) at Balaji, Rajasthan (several days’ journey by train from the study area), which is renowned as a place of healing for PPSD. Others described seeking care in multiple North Indian cities, involving several days of travel in different directions. The socio-economic impacts of help-seeking were similarly substantial, and at times seriously compromised household well-being. Participants mentioned that the cost of diagnostic tests and treatment were so large that they had sold livestock and land, while others had taken loans and accrued debt in order to provide treatment for the PPSD. A husband described how he managed his wife’s care when she was unwell with a post-partum psychosis, in the quote below: “Things were difficult when she was getting treatment. When we went to the doctor then we even struggled to manage food (for the household) and even borrowed clothes. I took a loan and we had a debt but no-one asked how we were managing ( ) Borrowing clothes and money was the only option we had.” 46-year-old man, husband of PPSD Pluralist explanatory frameworks were reflected in help-seeking. PPSD and caregivers sought help from many different providers – both traditional and biomedical, public and private, formal and informal, religious and secular. Hindu participants in particular, described a syncretic approach, attending a maulvi/ hakeem/ dargah (traditional Muslim healers and places of healing), and wearing a tabeez (an amulet containing verses from the Koran) as well as attending Hindu traditional healers. Some of the different names referring to traditional or religious healers included the following: maulvi, bhagat, hafeez, mullah, jhaardphoonk,
34 hawan, hakeem, maulana, haji sahib, pundit, and pujari. Help-seeking encounters also informed explanatory frameworks. Several participants adopted the explanations given by private health providers, purportedly representing Western bio-medicine such as ‘mental imbalance’ and ‘thickening of the nas (nerves)’. 4.3.2 Urgent priority to identify effective care Most families interviewed emphasised how much effort they had made, and how much they cared about finding care for the affected family member. The range and costs of help-seeking efforts have been described under the knowledge sub-theme ‘explanatory models of mental illness’ as well as the section above on help-seeking (Section 4.3.1). The high priority of this is illustrated in the quote in the box opposite where a family member described talking with her neighbour who she believed could cure her son by lifting the curse on him, saying that she would drop her blood wherever his sweat falls (an idiomatic expression which implies giving of one’s own life to save another). “I went to my son’s friend and requested him to reverse whatever (curse) he had done and to cure my son. I said to him ‘I will drop my blood wherever your sweat falls but please cure him’. I want my son back to who he was earlier. But nothing happened.” 33-year woman, mother of PPSD 4.3.3 Health service utilisation Findings from sub-study III quantify health services utilised by community members in the three months prior to the survey event. Table 7 provides a summary of the number and percentage of people who had utilised different types of services. Table 7. Types of health providers consulted by participants in sub-study III in previous 3 months Type of outpatient provider Not depressed N (%) Depressed N (%) Government provider (CHC or PHC) 54 (39.3) 22 (47.6) Community government provider (PHC or ANM) 7 (5.0) 2 (4.3) Private health provider 70 (51.2) 18 (41.5) Mental health provider 1 (0.1) 1 (2.3) Traditional healer 6 (4.4) 2 (4.3) Total 138 (16.2% of 45 (79% of non-depressed) depressed)
It is notable that the proportion of depressed participants who had consulted a provider was over five times higher than the proportion of non-depressed participants. While private and Government primary providers were used roughly equally by both depressed and non- depressed participants, there was almost no utilisation of mental health services, and very few people among surveyed participants described having consulted traditional healers. 4.3.4 Barriers to accessing care This research showed that access to care was limited by cognitive, geographical and economic, and barriers. The contribution of lack of knowledge as a cognitive barrier to accessing care, was described in Section 4.1.1 (‘Mental health literacy’) and 4.3.1 (‘Help-seeking’). PPSD/ caregivers describe the distance they had had to travel to obtain care as a significant barrier as well as the economic and opportunity costs (time) incurred as barriers to accessing care, in the two quotes below:
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“I was taking pills for some time from Selaqui hospital. My brother and his friend would take me on the motorbike but the distance was very much going all that way to Selaqui.” 20-year man, PPSD
“It has been more than a year since the treatment finished; there were both medicines and injections. But I am also very busy, and with the cost and the time of travelling so far to that doctor in mind, we have stopped his treatment.” 46-year man, brother of PPSD 4.3.5 Exploitation by care providers PPSD-caregiver dyads described numerous experiences of healthcare that were avaricious, irrational, and exploitative. Charges for mental health consultation, investigation, and treatment described by PPSD and evidenced in review of their bills and patient-held records were frequently excessive. One mother described the very large financial deposit required for her son’s care at a private nursing home: “My son was referred to Meerut, in Meerut they asked me to deposit Rs30,0001 in advance and then I refused and said, first treat my son, then I will pay the fees.” 50-year woman, mother of PPSD Review of the patient-held records when visiting participants in sub-studies I and II revealed high levels of over-investigation, likely linked to kickacks. Several people were required to have serial brain imaging investigations in multiple formats2. Polypharmacy was also evident in prescriptions that included up to 10 preparations to be taken simultaneously. Irrational care and the catastrophic impact on the family economically is illustrated in the quote below: “After the birth of my son, my wife was speaking unnecessary and senseless things. We took her to a doctor who deals with patients who have a deficiency or imbalance of the brain. First we took her to Muradabad at Dr XX’s clinic. A CT scan was done which showed mental imbalance in the report and he gave us medicines for 15 days……It was a very big tension for our family and to pay all the costs I sold some land and I also worked as a daily labourer in others’ fields. We still have the debts and all those loans are being paid slowly.” 30-year man, husband of PPSD This research confirms that while effective care is a high priority for PPSD and caregivers, there is an absence of accessible and effective mental health services in the communities researched in this thesis. Furthermore, many care providers order investigations and therapy that seems to be motivated by avarice[247]. The need for access to care integrates with other key sub-domains of the theoretical framework, in particular to mental health literacy, help- seeking, and health service utilisation (under the domain of knowledge), and is necessary to support safe social spaces by supporting PPSD to live well with the capacity to participate and act in partnerships for community mental health.
1 Income for a full day agricultural labouring work at the time of research was Rs130 per day, making this sum represent close to a full year of income for an unskilled agricultural labourer. 2 A ubiquitous system of 10-15% ‘kickbacks’ on all investigations ensures direct personal gain for all physicians in the private sector in India
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The provision of care and services such as counselling, psycho-social support and advice, as well as essential medicines such as anti-psychotic medicines is essential for community members with mental illness. A key strategy to increase access to care must focus on building skills and knowledge for self-care, building skills and knowledge of family caregivers and other non-formal providers such as traditional healers, peers, and community-based self-help groups [248]. Critical steps to advance access to care particular to India’s health system must include revitalisation of primary care, building mental health knowledge and skills of primary health care practitioners, both nurses and doctors, and renewed political pressure for universal health care [133]. Detailed steps on key components of health system strengthening for district mental health programmes addressing strategies for increasing access to primary and secondary care, as well as building required human resources and required health promotion and public health components, have been well described [248-251]. Beyond provision of mental health care and service, it is also essential that barriers to care identified above (knowledge, geographic, and economic) are addressed. This should include actions to increase community mental health literacy and ensure that services are geographically and culturally accessible, as well as affordable. With the high prevalence of exploitation by private providers, and ineffective care of public providers, there must be increased regulation of all private and public providers to ensure that patients are not exploited, irrationally investigated, or recipients of ineffective or harmful care [69, 247]. 4.4 Social determinants of mental health
“A toxic combination…of poor social policies and programmes, unfair economic arrangements, and bad politics…is responsible for the fact that a majority of people in the world do not enjoy the good health that is biologically possible.”
Commission on Social Determinants of Health, WHO[23]
Social health determinants are factors that contribute to health, although they may be quite distal from health outcomes (such as literacy or housing). In this research they have emerged as critical for both individuals and communities to achieve mental health competencies. They were most evident in sub-studies I, II and III and can be understood as both protective against mental illness as well as enablers for building community mental health competency. The contribution of social determinants of mental health is evident in the adjusted odds ratios for depression of community members in sub-study III, and summarised in Table 8.
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Table 8. Prevalence and risk factors for depression in Dehradun district, Uttarakhand Descriptive variable Non- Depressed P value Crude 95% Adjusted 95% depressed N (%) OR Confidence OR Confidence N (%) intervals intervals
Total 902(94.0) 58 (6.0) Sex Male 460 (95.8) 20 (4.2) 1.0 Female 442 (92.1) 38 (7.9) <0.001 2.0 1.1 – 3.5* 0.6 0.3 – 1.2 Age 18 – 29 years 270 (96.4) 10 (3.6) 1.0 30 – 39 years 230 (93.5) 16 (6.5) 1.9 0.8 – 4.2
40 – 49 years 183 (91.0) 18 (9.0) 2.7 1.2 – 5.9* 50 – 59 years 116 (93.5) 8 (6.5) 1.9 0.7 – 4.8 60 years and over 103 (94.5) 6 (5.5) 1.6 0.6 – 4.4 Caste General 557 (96.9) 18 (3.1) 1.0 OBC 137 (93.2) 10 (6.8) 2.3 1.0 – 5.0* 2.1 0.9 – 4.8 SC / ST 208 (87.4) 30 (12.6) <0.001 4.5 2.4 – 8.2* 3.2 1.7 – 6.2* Religion Hindu 755 (94.5) 44 (5.5) 1.0 Non-Hindu 147 (91.3) 14 (8.7) 1.6 0.9 – 3.0 House type Permanent materials 760 (96.0) 32 (4.0) 1.0 Temporary materials 142 (84.5) 26 (15.5) <0.001 3.3 1.9 – 5.7 * 1.9 1.0 – 3.5* Loan in last 6 months No 845 (95.1) 44 (4.9) 1.0 Yes 57 (80.3) 14 (19.7) <0.001 4.7 2.4 – 9.1* 3.0 1.4 – 6.2* Education status Unschooled 135 (84.4) 25 (15.6) 6.8 2.3 – 19.9 3.7 1.2 – 12.0* Primary 168 (94.4) 10 (5.6) 2.2 0.7 – 7.0 2.0 0.6 – 7.1 Secondary 453 (96.0) 19 (4.0) 1.5 0.5 – 4.6 1.5 0.5 – 4.7 Graduate 146 (97.3) 4 (2.7) <0.001 1.0 Employment Professional / military 102 (92.7) 8 (7.3) 1.0 Self-employed 231 (97.5) 6 (2.5) 0.3 0.1 – 0.98* Unskilled manual 341 (93.9) 22 (6.1) 0.8 0.4 – 1.9
4.4.1 Housing, literacy, caste, indebtedness, gender Sub-study III showed that the adjusted odds ratio for depression among people living in poor quality housing was nearly double that of people living in higher quality housing. It also showed a dose-response curve where the adjusted odds ratio of depression increased with decreasing years of schooling completed i.e. greater schooling was protective against depression. People who had not completed any schooling were nearly four times more likely to be depressed than people who had completed some form of tertiary education, after adjusting for other factors. The adjusted odds ratio of depression was three times higher for people who identified as SC compared to people in general caste, and was twice as likely for people identifying as OBC. Absence of social oppression seems to protect against depression. Obtaining a recent loan is a proxy marker for households with income and livelihood related stressors. People who had taken a recent loan were three times more likely to screen positively for depression. The findings of sub-study II identify gender inequality as a major factor influencing all aspects of health and well-being for both men and women as caregivers. Key findings in sub-study II identified a prevalent gender order that values and gives advantage to males and
38 systematically disadvantages females. One key mechanism advantaging male caregivers was the provision of high levels of social support they received (primarily from female relatives and neighbours), which was not generally available to female caregivers. Other mechanisms conferring advantage on male caregivers included ongoing participation in a social network through maintenance of friendships, self-affirming views of their own roles as caregivers, positive and more hopeful views of the future, and likely alternative mechanisms for stress management which ensured that they did not embody distress. Conversely women caregivers described sparse social support, a downward spiral of impoverishment, interpersonal violence, loss of social networks, social isolation and exclusion, and a sense of social sanction and judgement of their entire households. Women commonly described embodiment of their distress which was not the case for male caregivers. While the gender order for caregivers showed prevalent disadvantage for women, small gestures of resistance included emerging new gender relations, a sense of unity under fire, and increased autonomy and independence for some women. The importance of social determinants to mental health has been highlighted by many global mental health researchers [57, 58, 234, 252-254]. Sub-studies II and III in particular demonstrated psycho-social disability and reduced community participation as outcomes dominated by macro-economic, cultural, and political decisions related to access to schooling, gender, housing, caste, social status, and indebtedness. The interplay between different kinds of social inequality can have important effects that are not uniform [79]. The social identity of a caregiver such as Parmila in sub-study II who was female, widowed, and illiterate with a son with a severe mental disorder living in a community with gender inequality was defined and constrained by the interaction of these intersecting health determinants. Understanding the contributions of these health determinants in isolation or additively has been a focus of public health and inequalities research, yet new approaches seek to identify how individual agency and social identity interact with social processes and structural factors in dynamic ways [79, 90]. Using an inter-sectionality framework [91] to understand Parmila’s sense of hopelessness, persistent somatic pain, and her spiral of impoverishment, along with the intersecting contributions of her social identity would be a fascinating re-analysis. The fifth domain of community mental health competency is partnerships for action. Initially I had proposed to address components of this domain for this thesis through a process evaluation paper of Burans, the community mental health project in Burans that I am directing. After the Umeå mid-term seminar it was decided that this could be addressed in my research outside of this thesis. This topic remains of interest and I am currently writing a paper examining partnerships for action within this conceptual framework.
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4.5 Revised conceptual framework of community mental health competency
The revised conceptual framework of community mental health competency that seeks to synthesise findings of this research is presented below in Figure 5.
Figure 5. Revised model of community mental health competency
Foundational to the four domains of knowledge, safe social spaces, partnerships for action, and access to care are social determinants of mental health such as education, housing, livelihood, gender equality, and lack of social hierarchy. These determinants protect the mental health of community members as well as acting as enablers for further development of community mental health competency. They extend up with the trunk of the tree as critical support structures for the other domains of community mental health competency e.g. social capital is clearly entwined with safe social spaces and partnerships for action, and is both protective and enabling for individuals and communities. On the left side of the tree, ‘access to care’ has been added, in recognition that this is essential to increase mental wellness of community members with mental distress. This includes a comprehensive and integrated approach to primary mental health care that is responsive to community priorities and includes counselling, psycho-social supports, access to essential medicines, and if required, access to mental health professionals. While my reading of community mental health literature has not uncovered other models conceptualising community mental health, I found it useful to consider Bronfenbrenner's ecological model for human development which identifies five environmental systems with which an individual interacts. An individual is nested within a series of concentric circles that move out to the periphery, with the following titles: individual, micro-system, meso-system, exo-system, and macro-system [255]. Building on the concept of ecology and health, the ecological framework of Jadhav et al [256] as well as Krieger’s eco-social framework [257, 258]
40 have contributed to my understanding of community mental health competencies. Using this framework, I have sought to study factors that contribute to community mental health competency (and its absence) in a north Indian context, considering communities, as well as the broader ‘environment’ of the cultural context, the gender order, and their place in the political economy of health in the upper Ganga catchment.
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5.0 Methodological considerations
“Fleas dream of buying themselves a dog, and Nobodies dream of Escaping poverty: that one magical day. Good luck will suddenly rain down on them – Will rain down in buckets. But good luck doesn’t rain down yesterday, today, tomorrow, or ever.”
Excerpt from The Nobodies, Eduardo Galeano
5.1 Ethical issues – capacity for consent There were several ethical issues related to this study that I needed to reflect on in greater detail. The first relates to understanding and using ethical guidelines when doing research with people with severe mental disorders, and the issue of informed consent, particularly considering how or when it is ethical to include participants who arguably lack capacity for consent. A central tenet of ethical considerations in research among vulnerable groups, such as PPSD, is to protect them from harm or exploitation. However, by not including such individuals in research on the basis that they lack capacity to give informed consent, is paternalistic, and risks non-inclusion of PPSD resulting in them having less of a voice, and therefore less influence over policy decisions that directly relate to their health and well-being [259]. In sub-study I the majority of participants had severe mental disorders and none had reliable access to mental health services. Seven participants were too unwell to interview (non- responsive to questions, disordered thinking) and could have been considered to have limited capacity to give informed consent. In assessing capacity for consent a ‘functional approach’ that accepts for example, that decision making capacity can be different on different days, is suggested and accepted, by the British government and British Law commission [196]. Current Indian legal frameworks however do not give opportunity for autonomy or decision-making by people with severe mental illness although this has been vigorously contested as being in contravention of the UNCRPD [138, 146]. This functional approach sees capacity to make decisions as different to capacity for informed consent, as the latter requires a level of trust and non-coercion. As a pathway forward for my research I followed the advice from van Staden where the following four conditions should be fulfilled in assessing capacity for consent [196]:
1. a mental disorder should not prevent a patient from understanding what s/he consents to; 2. a mental disorder should not prevent a patient from choosing decisively for/against the intervention; 3. a mental disorder should not prevent a patient from communicating his/her consent and 4. a mental disorder should not prevent a patient from accepting the need for a medical intervention/participation in research.
A further approach to informed consent is to allow the provision of proxy consent by a family member who is believed to represent the best interests of the PPSD. Most often these family members do not hold a legally authorised Power of Attorney but for sub-studies I and II, which did not include any noxious interventions, this provides an acknowledgement and assent for participation that has been accepted by the institutional ethics committee although it may not carry the weight of legal informed consent [259].
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Where it is considered that participants cannot give informed consent, additional ethical considerations focus on justice issues and the potential for participants to benefit from the research, which is relevant in considering participation of vulnerable groups, such as people with intellectual disability, young people and children, and people with psycho-social disability, in research. Ethical guidelines based on the Declaration of Helsinki require that when considering the involvement of vulnerable groups, the potential benefits of the research are weighed against the risks [259]. This clearly gives some room for interpretation and some ethical guidelines have required that research must show direct benefit to these research participants. This is sometimes difficult to demonstrate and Dalton and McVilly suggest a more inclusive approach requiring that ‘the research is related to the needs of people with intellectual (psycho-social) disabilities and that the research has the potential to benefit people with these disabilities’ [260]. This approach emphasises that not researching vulnerable groups can also do harm (the ethical principal of non-maleficence) and that justice issues and an inclusion approach must be part of considerations in developing ethical research. A further important ethical concern in sub-studies I and III was that through a screening process I was identifying people with mental distress who may not have had access to care. A major benefit of this research as part of our community mental health programmes meant that all people identified were referred to our team members and offered support or facilitation of access to care. 5.2 Reflexivity on positionality My identity as an educated woman of Western ethnic origin and as a leader within a community health and development organisation working in the study area had the potential to influence the data collection and analysis in multiple ways. Differences in power relations between researcher and participants can risk reduced participation, withholding of information, provision of misleading information, and reduced engagement by participants. It may contribute to participants providing socially desirable responses [261, 262]. There were several ways that my positionality was perhaps mitigated in community encounters and data analysis. My personal identity as someone born and brought up in India, speaking fluent Hindi, habitually wearing typical attire for North Indian women, married to an Indian, and living in North India for the past ten years are all likely to have increased my social acceptability and cultural understanding. My identity as a woman may also have helped my personal understanding and analysis related to gender, particularly in sub-study II. Aspects of research design and analysis that may have further mitigated the impact of positionality included the fact that data collection for all four sub-studies was carried out by local team members with Indian identity. Review of findings and analysis were performed with Indian colleagues and advisors, and I particularly sought to include perspectives of people representing those oppressed by existing power relations in North India, such as colleagues who are Dalit and women. I also sought to include Indian nationals with relevant expertise as co-authors of papers to ensure that the analysis and discussion reflected priorities and perspectives of Indian citizens. My Western ethnicity may have also provided the possible benefit of cultural distance which can increase attention and curiosity [262]. Reflexivity on positionality may have further mitigated these limitations [261].
5.3 Limitations of PHQ9 and the diagnosis of depression Depression is one of the leading causes of years lived with disability [16] at a global level, and it has been estimated that depression will be the second highest cause of disability in the International Burden of Disease ranking by 2020 [263]. However more than any other
43 psychiatric diagnosis, depression has been problematized and critiqued [60, 263-266]. Critiques focus firstly on whether depression is a valid diagnosis that is homogeneously experienced across all cultures. Studies of depression and its explanatory frameworks in South Asia focus on the dominant experiences of somatic symptoms, in particular diffuse chronic pain, tiredness, and weakness [267-269]. Dialogue has focussed on whether depression can be identified with a symptom count approach as currently occurs with the Diagnostic and Statistical Manual of Mental disorders V (DSM-V) [270], the relative contributions of the cultural-psycho-social-economic contexts, and whether provision of primary mental health care can reduce the disability associated with depression prevalence. A second concern relates to the increasingly inclusive criteria for depression (as in DSM-V) that can inflate the prevalence of people who are ‘diagnosed’ with depression and conflate normal human experiences with mental disorders. There are obvious vested interests that would promote this approach, especially the highly profitable market in anti-depressive pharmaceutical agents. People who have symptoms appropriate to their difficult social and psychological context are ‘diagnosed’ with depression, or post-traumatic stress disorder, for example, and prescribed drugs [60, 271], which may offer limited relief if the psychosocial context contributing to the distress remains unchanged [60, 271]. A third concern linked to the culture, context, and criteria for diagnosis of depression suggests that the expression of distress can be considered part of the normal range of human emotional and psychological experience rather than pathologised with the diagnosis of a medical disorder [271]. This has been described as the medicalisation of distress [263]. A social constructivist view of depression sees psychiatric diagnoses as the products of culturally legitimated mental health professionals [272] using context and language devised for tertiary settings that are irrelevant in primary care and community settings [271]. Understanding local explanatory frameworks, and local approaches to coping, resilience, and recovery should guide both public health and clinical interventions [57, 179, 206]. The PHQ9 tool used to screen for depression in sub-study III had been validated in India and was shown to have good content validity and internal consistency [194, 273]. However it was developed in Western countries using the symptom counting approach from earlier versions of DSM-V [270] and gives little attention to the prominence of somatic symptoms so often found in people with depression in South Asia [61, 264, 274, 275]. My personal understanding of depression shifted during this period of study, and was shaped by the high correlation between depression and people in adverse life circumstances (indebted, unschooled, in poor housing, subject to social exclusion due to caste hierarchy) as found in sub-study III. I now question whether all the people who screened positively for depression in sub-study III were reasonably identified as having a mental disorder, and rather, were perhaps responding with appropriate emotion to their extenuating and difficult life circumstances. I would be unlikely to choose to focus on the prevalence and treatment gap of depression per se if I were starting this research again, and if I did, I would seek to find or develop more culturally validated tools such as that developed for Bangladeshi women in the Bronx that used a ‘tension’ scale [276]. While sub-study III provided novel regional data with a strong analysis focusing on social determinants of health and help-seeking behaviour, I questioned the utility of the prevalence component of the study as a descriptive epidemiology that is relatively well documented in India [165-167, 277-281]. This raises important questions about the continued research attention that is given to epidemiologic studies beyond the point of reasonable doubt of the true existence of an important association or the absence of such an association [282, 283]. Research in community mental health in North India should rather focus more on examining
44 the most effective interventions to promote mental health, prevent mental illness, and build on community resources and on pathways to effectively provide primary mental health care. 5.4 Impact of gender order on data collection The prevailing gender order in North India ensures women have limited autonomy and reduced economic participation, which had an impact on data collection in sub-study III in two ways. 5.4.1 Gender of data collectors limited access to survey participants Data was collected by one pair of female community workers and one pair of male community workers walking through the community selecting houses as detailed in the data collection section of sub-study III. Female pairs were easily able to obtain consent to enter houses and conduct the survey as most houses had an adult female at home, but male pairs found it difficult to meet daily targets of survey respondents as they were only granted entry into a house if there were other adult females or at least one adult male at home. During working hours there were few adult men in the community. Due to the significant length of the survey, it was not practical to perform the survey standing at the doorway of the house. The impact of this was that male pairs typically had to work longer each day to find male householders at home. 5.4.2 Gendered division of labour skewed representativeness of respondents The adults at home between 9am and 5pm in rural and semi-urban areas of Dehradun district were typically women over the age of 39 years, and men older than 59 years. Women less than 40 years were often working in the fields, or as domestic workers, while men under 60 years were typically in employment and therefore not at home. This was reflected in the final sample which showed over-representation of older women and under-representation of younger men. 5.5 Strengths and limitations of this research A strength of this research was that it emerged from programmatic needs for evidence related to working effectively in community mental health in North India. My location as technical advisor to community mental health projects in the study areas of Seohara and Sadoli-Kadim, and as a project director for a community mental health project in the Dehradun study area, made it easy to identify research questions arising from our work (for example, related to addressing social exclusion, discrimination and stigma, existing explanatory frameworks, help-seeking, and health service utilisation). Another strength of this study was that it used a combination of methods, both qualitative and quantitative, to explore diverse domains of community mental health competency. There were opportunities for triangulation of qualitative and quantitative findings, for example in exploring experiences of exclusion and attitudes supporting social distance between sub- studies I and IV, and linking help-seeking and access to care in sub-studies I and III. Unsought but important findings of prevalent inter-personal and gender based violence emerged in sub- studies I and II. The sequencing of studies was also useful, with sub-studies I and II providing a ‘slower’ and more in-depth process for data collection and analysis that provided a strong research foundation and an introduction to concepts central to community mental health in North India. Sub-studies III and IV provided a wider spread of views, using a sample of nearly 1000 community members, and was useful to quantify the contributions of social determinants of health to mental health alluded to in the qualitative research. Sub-studies III and IV had methodological strength in using a randomly selected, representative community sample covering rural, semi-urban, and urban populations in North India, with a high response rate and no missing data. Data collection by local residents of the same gender and dialect as respondents increased trust and open communication,
45 potentially reducing bias. There are some important methodological study limitations which are summarised in Table 9. Table 9. Methodological limitations of sub-studies I, II, III and IV Sub-study I Sub-study II Sub-study III Sub-study IV Sample selection Convenience sampling approach risked Over-representation of older people, excluding the most marginalised those with lower schooling, and people community members not known to identifying as SC/ ST project staff Potential sources Risk of social desirability bias in Risk of social desirability bias as interview of bias responses given identity of researchers conducted face-to-face as part of a local community mental health project and for responses of PPSD who were interviewed in presence of caregivers Tool used Information on Self-reporting measures risk recall bias gendered and lack of inclusion of cultural experiences of understandings of questions caregivers was generated using an PHQ 9 is a Social distance interview tool with screening tool, not index is a proxy a focus on a diagnostic tool, measure for exclusion and for identifying discrimination inclusion, risking depression missing nuanced data Three important risk factors for depression excluded from tool were stressful life events, disability, and chronic illness Study design Insufficient data on participant caste, Cross-sectional design cannot attribute class, socio-economic status collected at causality outset Data analysis Western ethnicity of co-authors performing analysis risked misunderstanding cultural nuances
Further limitations emerge in reviewing the whole thesis. Over the past few years as I have explored the concept of community mental health competence, a potpourri of connected findings has emerged. They provide a flavour of the four domains proposed in the updated conceptual framework but not the full colour and texture of any one domain. Any single branch or twig (to shift to a new metaphor) merits more in-depth research. For example, the concepts entwined in social exclusion and inclusion are tangled and profound, and the gestures of social inclusion described in sub-study I (social support or a sense of belonging) may only be transient positive experiences against a prevalent backdrop of exclusion, rather than markers of genuine social inclusion[224]. I don’t believe I have grappled with and explored in any depth the dimensions of genuine social inclusion in the communities studied in this research. The same could be said for sub-study IV assessing social attitudes towards PPSD: this study provided at best a thumb-nail sketch. A more comprehensive characterisation of prevailing knowledge, attitudes, and practices in this region deserves greater in-depth attention. Thus this thesis could be considered to paint a picture of community mental health competence in
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North India only in broad brushstrokes (to move to a third metaphor). There are many places on the canvas where granular detail is still required. Some of these are proposed in the research recommendations. At the start of this PhD research I had hoped to include a process evaluation of Burans, the community mental health project I have been directing since June 2014. I strongly believe research must move beyond descriptions to seeking solutions to the problems identified [283]. I am disappointed that for a number of valid reasons this component of the research was excluded from this thesis. However, I am confident that there are many more papers to follow that will signpost strategies to strengthen collective action for community mental health competence. I have reflected on my own shifting stance towards different components of community mental health competence, and recognise that I made multiple assumptions at the start of the thesis related to my own strongly bio-medical formation. Through this study I found opportunity to read and engage with the enriching dialogues between social science, community development, and biomedicine related to community mental health. Of course I would do it differently if I were starting out again now but I also had to walk this path to get here (I didn’t know what I didn’t know). There are still vast realms of knowledge related to community mental health competence in India where I still don’t know what I don’t know which is why this thesis perhaps represents the first kilometre or two of a longer journey that I hope I will continue, and that will remain fascinating and important. I am keen to continue journeying.
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6.0 Conclusions
“Our lives begin to end the day we become silent about things that matter.” Martin Luther King, Junior
This research paints a thumbnail sketch of the status of mental health competency in communities in western Uttar Pradesh and in the Dehradun valley of Uttarakhand, using quantitative and qualitative data collected during 2013 and 2014. All four sub-studies point to the glaring absence of effective primary or secondary mental health care. People with psycho- social disabilities in sub-studies I and II described repeated and significant efforts to seek care, which left many impoverished and indebted after consultations with exploitative and avaricious biomedical doctors and traditional healers. While sub-study III found a prevalence of depression of 6%, there was a 100% treatment gap for the first line recommended therapy of counselling among the sampled population.
Relatively low levels of community knowledge and awareness were found in the survey results of sub-study IV, and this as well as lack of access to care contributed to verbal, economic, and physical violence, crippling disability and social exclusion for affected people described in sub- study I, and a heavy caregiver burden for their families in sub-study II.
The social context emerged as an important facet of risk for mental illness, and a frequent barrier for mental health competence mediated through social determinants such as caste, years of completed education, marital status, gender, and indebtedness. The role played by North India’s gender order which values males and disadvantages females emerged as an important component of the burden experienced by caregivers, as well as contributing to social exclusion of PPSD and caregivers. There were some nascent gestures of resistance to this gender order with men describing their engagement in non-traditional gender responsibilities and relations, and women describing their increasing confidence in generating household income.
Social exclusion was the dominant experience for PPSD, and sub-study IV showed that desire for social distance was greater for people with psychosis than people with depression. However, PPSD also described gestures of social inclusion by community members, namely belonging, social support, and social participation.
Through the journey of this thesis I have built on a conceptual framework [14], developing and expanding it to portray community mental health competence as a tree, where foundational roots of social determinants of health support four branches depicting access to care, knowledge, safe social spaces, and lastly partnerships for action (which was not evaluated in this research). This tree model proposes that all five domains are requisite for communities to develop mental health competence. It points foremost to the importance of action in policy and programmes for community mental health that seeks to support and promote knowledge and resources, increase access to mental health care, strengthen social health determinants, and build social inclusion, equality and participation.
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Photos above illustrating a woman caregiver (Uttarakhand) and PPSD identified in sub-study III who now is a Burans team member (published with permission) (Photo credits – Caleb Smallwood)
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Translation of research studies with published opinion pieces, media interest, and published articles / press releases
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7.0 Research to practice
“If you have come here to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together.” Lilla Watson
7.1 Translation Locating this research within existing community mental health programmes meant that we could perform rapid and effective knowledge translation and dissemination. Building on the importance of social inclusion, and the priority of participation and belonging, in 2015 I directed a pilot programme around youth resilience and inclusion which is currently being written up. It showed significant improvements in social participation for young people after the intervention. In August 2016 I was part of a team as a co-investigator that was successful in a research grant application for AUD30,000 from the Disability Research Initiative of the University of Melbourne for a project titled “Increasing social inclusion for young people with psycho-social disability.” Recognising the important gender component from sub-study II for caregivers, we have included a substantial focus on female caregivers, in particular those that are heads of the household in Burans project which I direct, and have just completed writing a manual for the facilitation of caregiver support groups. Using data from sub-study II, I wrote an article about the burden of caregiving for a person with a severe mental disorder for World Mental Health Day 2014. Titled “Since my son has been unwell,” that was published in two large English language regional dailies in North India. Sub-study III used quantitative methodology related to the large treatment gap for depression in the state of Uttarakhand. On the day the paper was published in the BMJ Open we made a press release in Hindi and English, and gave copies of the report, including an executive summary in Hindi, to all senior members of the Uttarakhand Department of Health. Our press conference resulted in a high level of press coverage of the report with headlines such as “Four lakh adults in Uttarakhand depressed with little access to care” and “A depressing state of affairs, this!” The day following the press release, I was contacted by the State nodal officer for mental health to request us to attend a meeting at the Department of Health to support implementation of the national mental health programme as well as to support training of government medical officers in depression. The interviews and data collected continues to be useful several years later. On World Mental Health day on 10 October 2016, an opinion piece I had written titled “When I was mad…” portrayed and discussed difficulties in accessing care and the experiences of exclusion for PPSD, using quotes and data from sub-studies I and II, and was published in an English language regional daily newspaper called “The Garwhal Post.” We have also had small impacts perhaps on policy. One of the ongoing Burans advocacy efforts has been to request the Department of health to increase access to medicines for PPSD in rural locations. On 10 October 2016 in a large celebration hosted by Burans in Dehradun city, the Director General of Health for Uttarakhand, who was Guest of Honur, announced that PPSD from more remote regions of the State would be prescribed medicines for up to 60 days, rather than the standard 14 days as an initiative to increase access to care. We have had ongoing discussions and engagement with the Department of Health for the State of Uttarakhand and I have recently co-submitted a research proposal for implementation of the National Epilepsy Programme with the Mission Director of the National Health Mission. Publications arising from this thesis, which addresses a highly under-researched topic and in
51 the geographical and cultural context of North India has also opened opportunities to participate in national and international dialogue and conferences related to global mental health. I have been invited to speak at five national and international conferences in the last 18 months. 7.2 Policy Implications Findings from this research point to important implications for policy and practice emerging. Actions must be taken from macro-policy levels related to social determinants of health and social inclusion as well as in the details of public health services, mental health specific policy and services, and in the details of implementation of work promoting mental health in India. Firstly, as demonstrated in my findings and by many others, social determinants of health are significant in the development of mental illness [57, 58, 234, 252-254]. Macro-policies that address distal and proximal determinants such as poverty reduction, provision of social housing, ensuring livelihood, and increased school completion will lead to improvements in all spheres of health and well-being and will reduce the disease burden linked to mental illness [253, 284]. Action on determinants of health is required by national and local government, communities, business, and international agencies across all sectors [285]. Health in all policies is a concept seeking to take account of health and equity in the policies of other sectors [286] but has been given little formal attention or priority in India [285]. Mechanisms to assess the impact of policy in any sector on health, such as health impact assessment, should be built into policy process in New Delhi and in State capitals [287]. These findings demonstrate the large and prevalent impacts of gender inequality and social exclusion on mental health and caregiver burden. Increasing social inclusion and equality in the arenas of gender, caste and disability requires action in research, policy and programmes. Actions to increase social inclusion will be strengthened by Sen’s capabilities approach to development and disability inclusion by seeking to build receptive social environments [28, 212]. While India has in place some social inclusion policies such as the affirmative action policies to ensure inclusion of people from oppressed castes in tertiary education, and representation of women in the Panchayati Raj3 [288], these need to be developed to reflect the impacts of inter-sectionality and thus address multiple axes of disadvantage [289]. Ultimately policy and programmes for social inclusion must seek to disrupt the structural factors that allow inequality and exclusion to exist [80, 212]. Key strategies to increase gender equity include empowerment of women in every setting, increasing women’s representation in all decision making bodies [78], ensuring gender accessible provision of secondary education and health services, and the development of structures to ensure women’s economic independence [290, 291]. This research also underlines the needs for policy and regulatory actions to prevent and respond to gender based violence [78, 292]. This thesis demonstrates that the majority of people in this study area in North India, regardless of caste, gender or creed do not have access to mental health care, and that PPSD are socially excluded. The yawning chasm of absent care needs to be addressed with measures that strengthen community based resources for mental health, primary care resources for mental health, and specific mental health services. The NMHP currently proposes a model of mental health that holds a district psychiatrist at the axis using a structure that depends heavily on mental health professionals who are in very short supply, taking little account of local contexts and resources [128, 129, 256]. Instead a revised and flexible modular approach
3 The Panchayati Raj is a system of governance prevalent in South Asia in which panchayats (five membered councils) are the basic units of administration. It has 3 levels: village, block and district.
52 to mental health that can be adapted to the vastly diverse contexts of different districts across the country is needed [104]. This should include ASHA and AWW workers contributing to awareness and referrals, incentivised support to PPSD and their family members, and use of lay community workers[51, 52]. My research shows the importance of community resources such as social support, opportunity for participation, and community knowledge for community mental health competency. Actions to increase access to mental health care must first strengthen community resources, both knowledge and skills in mental health. Promising routes forward are shown in programmes of empowerment, community development, mental health promotion that address community level determinants of mental health [14, 57, 234, 235, 293-295]. Building knowledge and skills of caregivers, as the primary provider of care in most Indian communities, is a requisite focus of programmes [161, 296] and is currently absent from the NMHP. Other programmatic actions should build knowledge using resources that reflect the social, psychological, and biological origins of mental illness [124]. There is good evidence for a range of other actions that include parenting and school based emotional resilience programmes [297-299]. There is also good evidence demonstrating that community members can effectively deliver psychological and pharmacological care for PPSD [51, 52, 300]. An innovative programme in West Bengal, India implemented by Anjali, a mental health rights organisation, uses a community kiosk staffed by trained community members to offer counselling and psycho- social support to individuals [301]. Other promising programmes strengthening and building on community resources in India and using a combined community development approach with specific mental health actions are being developed by Basic Needs India and UK, the Mental Health Action Trust, Padhar Hospital, Parivartan, Bapu Trust, Corstone India, Jan Swasthya Sahayog, Duncan hospital, The Ant, Iswar Sankalpa and Sangath organisations among others. These research findings underlined the large treatment gap for depression and the absence of primary mental health care in the study communities. In addition to community level actions, primary care is critical to increase access to universal primary care via strengthened PHCs and CHCs [69]. Doctors and nurses must have knowledge and skills to diagnose and manage common and severe mental disorders in a primary care setting [133, 295, 302]. A compelling delivery model is collaborative stepped care where primary-care is coordinated by a non- specialist case worker who coordinates and delivers the majority of care in consultation with a primary care doctor [297]. Access to essential medicines for mental, neurological, and substance abuse disorders, with systems for procurement and supply are a key component of effective primary mental health [124, 297]. Effective community based and primary mental health care is the only feasible way to ensure access to care to people living in the vast tracts of India that are rural and remote [124]. Hospital or tertiary care by psychiatrists and psychologists is required for a smaller proportion of PPSD with severe, refractory, or emergency presentations [297] and is also required outside most large cities in India. Although many actions are required in public policy to build mental health and address mental health determinants, perhaps more important than generating new policies or legislation is developing structures and mechanisms to ensure effective governance, implementation, and regulation of existing policy and legislation in India [66, 97, 108, 297].
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7.3 Research recommendations
How can we – as mental health academics or clinicians – know the central importance of societal factors for mental health and not call for the political action to improve them – loudly and clearly? Stefan Priebe[303]
Specific areas that have emerged from this PhD and that demand further research are listed below:
Knowledge related Develop and assess effectiveness of contextually relevant approaches and resources that build on local knowledge sources, to support and build mental health literacy/ awareness with community members. Examine effectiveness of resources for building knowledge and skills in mental health that are effective and appropriate for people with low literacy. Evaluate effectiveness of mental health awareness programmes with respect to social distance, discriminatory attitudes, health service utilisation, and help-seeking behaviour. Develop and measure effectiveness of interventions seeking to build capacity (knowledge and skills) in mental health among ANM, ASHA, AWW, traditional healers, and RMPs in communities across India. Safe social spaces related
Examine effectiveness of interventions to increase receptive social environments which allow PPSD and caregivers to increasingly exercise citizenship and connectedness. In-depth examination of social inclusion and participation of women in rural and urban communities in North India, focussing on enabling factors. Evaluation of effective interventions to build caregiver skills and knowledge in self- care and mental health. Examine the types and levels of social support as well as norms of reciprocity operating in North Indian communities, examining enabling factors. Partnerships for action related
Develop and measure effectiveness of interventions supporting community led actions for mental health, including identification of enabling and supportive factors for strengthening consumer voice for mental health. Evaluate programmes that work simultaneously in community development and mental health seeking to increase social and financial inclusion, participation, agency, and social equality. Access to care related
Develop and assess interventions in capacity building that use a framework focused on psycho-social responses by providers. Describe extent/ rates of avaricious and irrational care (investigations, prescriptions, therapies) among both private and government providers. Assess effectiveness of interventions to limit irrational and avaricious care by both private and government providers.
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Social determinants of health related
Evaluate interventions (policy and programmatic) seeking to address gender equality and social determinants of mental health. Develop and assess effectiveness of community level interventions that address social determinants of health (such as promoting gender equality, SHG membership or livelihood) - measuring mental health outcomes. Measure mental health outcomes as part of evaluation of any intervention addressing social determinants of health. Collect and disaggregate data related to social inequality (caste, religion, gender, education, employment, housing, ethnicity) and mental health status.
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8.0 Acknowledgements
“Daphne calcicola is one of the most beautiful plants of Western Yunnan where it frequently smothers the ledges and faces of limestone cliffs and outcropping rocks with golden yellow or orange. Although it is mostly quite low and sometimes so tightly pressed to the rocks that the stems become flattened it may, on the other hand, under favourable conditions, grow up into small erect bushes over one-metre-high and with straight elongated branches.” George Forrest (plant hunter) At the start of my PhD studies I decided to name this project “Daphne” after the hardy alpine shrub that can flower in adverse circumstances on the hillsides of the Himalaya. A key survival strategy in was my retreats from all other responsibilities for forty-eight hours, which my children fondly referred to as a ‘Daphne-48’. There are many people and environments who gave the space, light, nutrients, and opportunity to allow ‘Daphne’ to flower. This Daphne plant has definitely been a product of companion planting and community symbioses.
I am grateful for prodding words of encouragement to start the Daphne journey from Philip Hill, Nathan Grills, Michelle Kermode, Susan Jack, Thelma Narayan, John Porter and Mohan Isaac. It took about a decade to germinate…
I have been very blessed to have had wonderful supervisors who I now count as friends. Isabel, as lead supervisor, as well as pushing me to think better, you provided emotional support and encouraged me to dive deeper into gender and qualitative research than was ever my intent at the start of the journey. I am so grateful for your supervisioin and guidance infused with utmost wisdom, humour and patience. Gracias a Delfin and Peio too for sharing Isabel – and welcoming me often. Thank you Miguel for marketing both Umeå and the idea of a PhD so effectively 10 years ago at the International People’s Health University in Gonoshasthaya Kendra, Bangladesh. I appreciate your patient support especially with my Stata stumblings and your sparse but incisive comments and your warm welcome each visit to Sweden. Michelle, your writing mentoring with thousands of attentive edits, along with your own examples of robust thinking supported by economical and elegant writing have challenged me to think harder and write better. You have inspired me to find research fun, a great means to personal development, and have pointed me towards some great movies along the way. I’m glad we can keep working together. Thank you.
This research was only possible because of the support from the Community Health and Development programme and the Emmanuel Hospital Association who supported me and this work in many ways. Thank you Robert, Dr Ashok, Somesh, Dr Anil, Dr Sunitha, Vardhu and Jubin for your support and encouragement from the outset. The EHA Institutional Ethics Committee led by Dr Jameela has also been very supportive. I am grateful especially for the welcome and support I get every time from David and Kala, Sanjay, Raj Kumar, Maya, Arun, and others in Seohara with the SHARE team. I am appreciative too for all the support given by Raj Kamal, Rajeev, Bharosa, Nitai, Sandra, Bimala, and Janaki with ongoing work in Sadoli- Kadim. Prerana, you were a great research assistant, I’m glad we can continue to work together.
Appreciation to Rahul, Bhargavi, Mirja, Linda, and Lawrence as co-authors on papers – hoping there are many more to come. I am grateful particularly to the three anonymous reviewers of sub-study II who pulled it into a useful realm. Thank you Gracy Andrew, Vikram Gupta and Alok Sarin for your wise counsel for Burans, and your shared passion for mental
56 health. Dhanyavad to Sumeet Jain for your comments on the kappa. Jane M in Christchurch, your attentive final proof read was so much appreciated.
I am thankful for the warmth, intellectual discussions and belly-fire drive for social justice I have found in the Medico Friends Circle. The e-discussions of MH India group facilitated by the indefatigable Srivats, during the 2014 and 2015 mental health focussed meetings in Pune and Hyderabad around mental health were important to push me into a new ecological niche with relation to mental health.
The Burans team (the rhododendron is another tenacious flowering shrub of the Himalayas) have been a critical companion species for Daphne. I couldn’t hope for a greater coordination team with Jeet, Samson, Helen M, and Pooja S (who all tried very hard to not email or ring me during a Daphne-48). Thanks guys! Thanks for the huge effort made for our baseline survey data gathering in the 2014 monsoon by Kezia and Gabo supported by Sanjeev, Arun, Pooja B, and Kundan. Thanks also to Madhu from OPEN, Lawrence from HOPE, Dr Reeta from Sneha, Dr Uttam and Dr Jewel and team from Landour Community Hospital, and also to Dr Raja, Dr Swetha, Dr Daniel, and Jessica from Herbertpur Christian Hospital.
I was many times given space to write and think (on a Daphne-48) by Mel and Dave, Surender and Mamta, and loved the study breaks with chai and cheer shared with Meena and Vikas in Rajpur. I-Hsin, every PhD student needs a tech geek and you were the man for the job: maps/ graphics and more importantly, accompanied by your wonderful great bread and food!! Thank you Mary Ellen P, Tara K, Cathy D, Fabi S, Jane P, Anna S, Adriennne T, Kay M, and Amanda R who shared many cups of chai (in real life or by Skype) and asked me faithfully and with genuine interest ‘How is your PhD going?’.
I have loved my visits to Umeå and the cycle rides along the river, runs by the lake, and the sunrises, sunsets, and star gazing. I will never forget the evening when a dupatta (scarf) of powdery purple and green spiralled and swirled in front of me while I cooked polenta, and I abandoned dinner (in the 5C corridor student kitchen) to race off to Nydalasjön (the lake) for a long silent extravaganza of twisting, shimmering lights of the aurora borealis. I love the stark seasons and pastelled sky palettes of Umeå. I do hold a literal bone of resentment however for that particular spot in Pedagoggränd which I know as Patella Corner after my unfortunate cycle skid and consequent knee-cap fracture there one icy March morning in 2014. I am glad I could scheme my visits to hit summer, spring, autumn, and mid-winter.
The Umeå Epi Department throngs (at least in spring and summer) with PhD colleagues who have been stellar for encouragement, bike rides, Fika room laments over Stata, pot-luck dinners, fun, and wide ranging conversations on a hundred topics in several different languages. Thank you particularly to students who have shared the journey: Jing, Amaia, Rakhal, Katya, Iratxe, Mikkel, Juan-Antonio, Moses, Kaniyva, Gladys, Setareh, Vijendra, and Prasad and many others too. I’ve also appreciated so many of the staff in Epi who have taken time to discuss, ponder, and think aloud over Fika – in particular Anna Karin, Barbara, John, Malin, Alison, Kjerstin, and Anna Brett. Birgitta and Ulrika – you have been helpful, encouraging, and supportive and sorted out all sorts of administrative troubles as well as being personally interested in me and my quandaries. I am particularly thankful to Lena for her patient help with the formatting of this cover story – thank you! I also am very thankful to the Swedish Research School for Global Health and the Umeå, Centre for Global Health Research, with support from FORTE, the Swedish Council for Working Life and Social Research (Grant No. 2006-1512) for generous support.
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I’m so blessed to have the encouragement of my mother Beulah, and my mother-in-law Pamela, who have cheered from the side-lines. Thanks Mum for visiting India to help Jeph run a tight ship in Mussoorie while I was in Umeå and for a thousand encouraging emails. Thanks to my lovely sisters Bron, Adee, and Ros for encouragement, sending me interesting papers, emails, and general sisterly solidarity. Thank you too Lois for doing a Mussoorie support visit.
Last and by far the most important for this Daphne venture are my four children and husband in Mussoorie. They have put up with several years of Mum intermittently holed up in the laundry with her laptop, often late home from Dehradun, and away in Sweden for several chunks of time. I’m delighted that Shar and Shanti could help with typing out transcriptions and hold engaged discussions about social exclusion and gender regimes, that Rohan is also outraged at global income inequalities, and that Jalori conversantly uses the acronym ‘PPSD’. It has not been easy to have Mum doing a PhD but I have felt loved, supported, and cheered on by the world’s most fabulous four.
Jeph, you have been with me all the way with this Daphne exploit. Talking through models of community mental health, coming up with great titles for talks, picking up kids from school and cooking dinner again, editing abstracts down to 150 words, encouraging me to take longer on the discussion, and generally being a super-husband. Twenty-five years ago we painted the sign of Auckland medical school in bright colours together, and we’ve carried on riding our bicycles, climbing huge hills (real and metaphorical), parenting and travelling together through flat lake tedium, overwhelming structures of injustice… and surfing the odd tsunami. Bahut pyaar.
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