People not professionals

Training individuals to support one another through difficult times is a profound step forward in our mental health crisis

by Arjun Kapoor & Jasmine Kalha + BIO

Diksha hasn’t been feeling like herself lately. For three weeks, she’s been unable to follow her daily routine, hasn’t felt like eating or playing with her children, and no longer sits at her bangle shop in the village market. The violence she endures at home has become more frequent, and Diksha wonders if that’s the reason for her low mood.

Sensing something is wrong, her neighbour Radha asks Diksha if everything is all right. Diksha shares that she is dealing with domestic abuse as well as financial difficulties affecting her shop. Radha empathises and says she’s been through a similar situation in the past. She also explains her role as a village ‘champion’, trained to provide emotional support, and offers to talk to Diksha over a few sessions, at a time and place of her convenience. After completing these sessions, Diksha feels so much better and is assured that she is not alone.

This hopeful vignette is set in a village in Mehsana, an economically disadvantaged district in the western state of Gujarat in India where, as per national estimates, approximately 4 to 8 per cent of the residents are dealing with mental health problems such as depression and anxiety. Similar to all rural districts in India, there are inadequate mental health services and professionals. Diksha’s story is fictional, but it’s one that draws upon several real-life stories we have encountered in our work researching and delivering a vital mental health intervention known as peer support.

In the example above, Diksha is clearly in a distressed state of mind. Thankfully, her neighbour Radha, who is trained as a peer supporter (or champion, in the local context), identifies something is amiss and reaches out. Diksha is familiar with Radha, trusts her, and hence feels comfortable in expressing her feelings to her. During their sessions together, Radha uses lay counselling skills, such as active listening (a form of reflexive listening to empathise with a person experiencing distress), to understand Diksha’s thoughts and feelings. Radha also uses lay counselling techniques, such as problem-solving, which have proven to be effective in helping individuals find solutions to cope with their distress.

Diksha is not alone in facing stressors of this nature. Every one of us may or will experience difficult situations at some point in our lives. A few of us might wonder if what we’re going through is serious enough to reach out to a professional therapist or counsellor. Others may feel reluctant to open up about their feelings due to the stigma and shame associated with expressing one’s emotional vulnerability. It’s also possible that, the last time some of us reached out to a loved one, their advice was perhaps not helpful for our situation or they weren’t equipped with the skills to emotionally support us in our most distressed moments. Finally, those of us who want to approach a mental health professional such as a psychiatrist or a therapist may be confronted by other challenges, such as finding a professional who is available, affordable, can speak in a language that resonates with us and makes us feel comfortable.

These hurdles are particularly prevalent in areas where there is a lack of mental health professionals or in societies where reaching out for emotional support is shamed as a sign of weakness (in India, where we work, between 70 to 92 per cent of people with a diagnosable mental health condition don’t have access to any form of mental health care). In such contexts, a person might not reach out for support at all, or instead rely on networks of family and friends rather than look for a mental health professional.

At Bicêtre, recovered mental health patients were employed as staff to take care of patients

In our work, we address these realities by developing evidence-based and innovative mental health and suicide-prevention programmes based on peer support and lay counselling. These programmes are usually delivered by community members, persons with lived experience, caregivers, youth, health professionals or other groups using skills that they’ve developed through the training and mentorship our programmes provide.

In the context of mental health, peer support is a process through which people who share similar lived experiences or social backgrounds support others experiencing mental health problems or emotional distress. One of the earliest recorded instances within psychiatric settings can be traced to the late 18th century at the Bicêtre Hospital in Paris where recovered mental health patients were employed as staff members to take care of patients who were in treatment. Other earlier manifestations of peer support emerged as self-help groups providing informal support in the community. For instance, in 1845, a group of men who had experienced treatment violations while in an asylum, set up the Alleged Lunatics’ Friend Society in England, which fought for protection from ‘unjust confinement … [and] from cruel and improper treatment’.

Another early example was Alcoholics Anonymous (AA) set up in 1935 in Ohio in the United States to support people struggling with alcohol addiction. AA is now present across the world and is widely regarded as one of the most successful peer-support groups specifically for addiction recovery.

However, it wasn’t until the 1970s that peer support as a formalised and systemic approach emerged out of the service-user/survivor movement, which, along with the anti-psychiatric movement, challenged mainstream and formal mental health services driven by the psychiatric model. This was alongside other social movements for civil rights, women’s rights, LGBTQ+ rights and disability rights during the 1960s and ’70s, which also influenced the development of peer support in the context of emerging discourses on human rights and resistance against oppressive systems. In particular, peer support began to embed itself in the ‘recovery movement’, which foregrounded the voices and agency of persons with lived experiences and service-users to shape and pursue their own idea of recovery, hope and functioning, without reducing their identities to their diagnostic labels and symptoms.

To understand the basic principles of peer support, you might be able to refer to experiences in your own life. Most of us, at some point, have provided emotional support to a family member, loved one or acquaintance in a familiar setting. In such moments, we might have found ourselves drawing upon our own lived experiences, and sharing insights on how we coped in those moments – both of which are key elements of peer support.

A couple of years ago, one of us (AK) received an urgent phone call from a young man we’ll call Ajay via an LGBTQ+ network. Ajay identified as part of the LGBTQ+ community; he was unemployed and hence dependent on his family, but said his family members would subject him to physical and emotional abuse. On that particular day, traumatised by their violence, Ajay was confronted by intense thoughts of ending his life, and immediately reached out for help since he was unable to cope with the distress by himself. In his role as a peer supporter, AK immediately provided Ajay emotional support by creating space for him to share his distressed feelings and by acknowledging the violence he had experienced, while also reinforcing that he was not responsible for his family’s violent actions.

After assessing the intensity of Ajay’s suicidal thoughts, AK provided him with reassurance and hope by helping him identify his internal strengths and potential solutions to deal with his situation. AK also gave Ajay details of referral contacts for legal and financial support to help reduce his dependence on his family and prevent any further instances of violence. AK continued to provide emotional support and followed up with Ajay regularly until he was no longer at risk of suicide and in a better state of mind. In this way, Ajay overcame his suicidal thoughts and was motivated to find ways to overcome his difficult situation.

When someone listens to us with empathy and respect, we feel recognised

Similar instances of peer support abound in our everyday lives. Take, for example, a student volunteer providing psychosocial support to a classmate who belongs to an oppressed caste community and is confronting institutional caste-based discrimination; a member of an LGBTQ+ collective providing affirmative support to a person coming to terms with their sexuality; a survivor of domestic violence providing crisis support to a young woman who has been physically assaulted by her husband; a volunteer providing referral resources over a chat-based app to an adolescent having thoughts of ending their life; a peer supporter helping a person with schizophrenia admitted to hospital to develop their own recovery plan; or a group of individuals listening to and sharing each other’s journey of recovering from substance use addiction.

These are examples of the myriad ways in which peer support can be provided across settings ranging from community spaces, educational institutions, psychiatric hospitals and rehabilitation homes to online support groups, phone-based helplines or even chat-based apps. Peer support also comes in many different forms, ranging from emotional support, problem-solving and crisis support to providing information resources, advice and specific mental health services within hospital settings. The term ‘peer’ is used to describe individuals providing such support to others. Peers are most often laypersons who belong to the same age groups, specific communities or identities, or share lived experiences of distress, mental health problems or oppression. Peers can also be workplace or academic colleagues, community volunteers, or individuals recovering from psychiatric disorders in hospital or community settings.

Peer support draws upon a fundamental human instinct to relate and connect with the other’s condition. As human beings, we are imbued with an innate potential to not only listen to others’ stories but, through such engaged listening, support them in coping and overcoming emotional and psychological distress. When someone listens to us in this way, with empathy and respect, we feel recognised. A sense of recognition not only validates and affirms our emotional pain, but also helps foster hope and resilience to cope with adversity.

For instance, going back to Ajay’s story, we find that the peer supporter’s act of recognising the wrong being done to Ajay by his family, and also acknowledging his internal strengths to overcome his difficult situation, provided him with the motivation to not only resist acting on his suicidal thoughts, but also to recognise his own self-worth and imagine a better future for himself, independent of his family. As in the case of Ajay, reaching out to a peer supporter who has a similar identity, lived experience or sensitivity to understand the other’s reality can not only make it easier for the distressed person to overcome stigma to seek support, but also enable the peer supporter to emotionally ‘hold’ the person by making them feel recognised and acknowledged. Thus, peer support embodies the transformative potential of human relationships to support, empower and heal individuals experiencing distress by mutually sharing lived experiences, empathetic listening or simply validating the other’s emotional pain.

In cultures and societies where reaching out for support or providing emotional care is often seen as an act of weakness, or as devalued emotionality, peer support is a radical possibility, as it blurs the boundary between self and other through a process of attuning one’s own lived experiences to the simultaneous struggle of the other. Through this alchemy, peer support facilitates a space wherein two individuals, familiar in their shared reality yet strangers to each other’s lives, can nurture a bond, however transient, to transform the stigma that envelopes them and their lived experiences of distress into an emergence of mutual hope, connectedness and recovery.

A question that is often posed is whether peer support is comparable to professional mental health services. Are the two approaches effectively the same, substitutes of each other, complementary or completely opposed? An answer can be found in the seminal paper ‘Peer Support: A Theoretical Perspective’ (2001) by Shery Mead, David Hilton and Laurie Curtis, where they define peer support as ‘a system of giving and receiving help founded on key principles of respect, shared responsibility, and mutual agreement of what is helpful.’ According to the authors, one of peer support’s defining features is that it is not based on ‘psychiatric models and diagnostic criteria’. Instead, peer support is about ‘understanding another’s situation empathically through the shared experience of emotional and psychological pain.’

In other words, the peer support model’s defining feature is that it is conceptually and practically separate from formal mental health care, which is conventionally provided by qualified clinical professionals. Peer support departs from the traditional relationship of the professional and the patient. This relationship is inherently mediated by an institutionalised power dynamic that determines what kind of support is provided to a person in distress. In this dynamic, the professional as an expert is presumed to ‘know better’, while the patient is expected to be a ‘passive recipient’ of the professional’s assessment of what is in the ‘best interests’ of the patient. Peer support inverts this very dynamic and replaces it with a relationship of two equally positioned individuals, founded on mutual respect, reciprocity and attunement of their lived experiences.

For the person receiving support, a peer may also serve as an inspirational figure

Peer support draws especially from the power of sharing lived experiences. It offers a relatable and lived exemplar of the unique experience of living and coping with multiple sources of stress in one’s life – something that formal mental health professionals embedded in the expert-patient dyad are often unable to provide therapeutically.

In addition, peer support provides a cathartic space for refuge that transcends the constraints of expert-delivered formal services in favour of a more equitable relationship wherein, through the mutual sharing of one’s pain or life journeys, one can identify and feel connected with the other’s experiences. The relational nature of emotional adversity requires reparative relationships to mend the psychological damage caused by those very fractured relationships (personal and social) in the past and present. Thus, for the person receiving support, a peer may also serve as an inspirational figure; to identify with their journey can be an antidote to the loneliness and isolation one experiences while in distress.

To be told by someone, in whose narrative we identify parts of ourselves, I understand what you’re going through. Things can get better, they did for me can be deeply affirming and liberating. A peer’s ‘experiential knowledge’ can therefore serve as an inspirational model for living and coping with adversity, and a boosting reassurance that this is possible for me also. This sentiment can be particularly therapeutic for individuals and communities that are experiencing identity-based discrimination. We’ve seen this in our own work co-designing peer-support programmes with marginalised youth experiencing discrimination based on gender, sexuality or caste.

We’ve also seen the power of reciprocity and resonance in our peer-support work within formal psychiatric hospital settings. Within this context, to meet a peer supporter who has also received institutional care in the past, but who now, with the right amount of resources and support network, is able to live an independent life on their own terms, provides hope and reassurance by modelling through example. For instance, in one of the hospitals that we’ve worked in the past, the story of a peer supporter (with a severe mental health condition) whose family invested in setting up a photocopying and printing workshop to help him earn a livelihood is often quoted to other patients as an example of how, in one’s recovery journey, despite ups and downs, there is hope to take back control over one’s life, even with severe mental health issues.

By learning from this experiential knowledge, one can find new ways to understand oneself or reimagine one’s narrative, identify solutions for one’s problems, reaffirm faith and hope for oneself, or instil an enduring sense of self-confidence. For the peer supporter too, providing this support can be a satisfying and fulfilling experience, leading to an enhanced self-identity, and a deeper sense of meaning or purpose especially as a witness to the impact of their support on the other. For peer supporters with mental health problems or psychiatric disorders, providing support can also bolster their own recovery journeys, build vital life skills and help forge an identity beyond their status as a ‘person with mental illness’.

Peer support is also embedded in the philosophy of ‘recovery’ that challenges the idea of an expert-driven biomedical notion of ‘cure’ most often imposed within psychiatric settings. Instead, the recovery approach centres the person’s own agency to develop pathways to live a meaningful life and achieve their full potential, irrespective of their symptoms or the anticipation of awaiting an enduring cure.

The emerging scientific evidence on the benefits of peer support is promising. Studies have demonstrated benefits for both peer supporters and persons receiving peer support. In a systematic review published in 2013, of 11 randomised controlled trials involving close to 3,000 people in the US, the UK and Australia, researchers found that patients showed equivalent outcomes, in terms of quality of life, mental health symptoms, satisfaction and use of mental health services, when their care needs or group therapy were managed by a peer supporter, compared with a mental health professional.

Furthermore, in 2011 another review of studies into peer support in professional mental health services suggested that peer support can help reduce admission rates and re-hospitalisations; increase the sense of empowerment and independence for the peer and the service user; and improve social functioning among service users. Although most published research on peer support has been conducted in the context of high-income Western countries, there are promising results emerging from low- and middle-income countries too.

The champions facilitate access to social entitlements and provide practical support

Take Atmiyata, for example – an innovative, rural community-led intervention in the aforementioned Mehsana district in Gujarat that is currently delivered by the organisation where we are based. Atmiyata focuses on identifying and providing between 12 and 14 days of training comprising role plays, group discussions and input sessions to build the capacities of community volunteers – at the village level – as lay mental health care providers to deliver evidence-informed counselling to support people in distress or with common mental disorders, such as depression and anxiety. These lay counsellors, or champions, reach out to their village community members using their training to identify symptoms of mental health conditions, and social conditions that might be distressing to community members (such as a newly married woman who is moving to a new village; recent unemployment; women facing domestic violence, or financial distress), and the champions use Atmiyata films to facilitate a conversation on mental health.

On their first few interactions, the champions make an assessment of the person’s level of distress and subsequently use lay counselling skills and techniques over four to six interactions to provide emotional support and assist them in identifying and reaching their goals. In addition, the champions also facilitate access to social entitlements and provide practical support such as sharing employment opportunities, making referrals for legal aid, shelter services and helplines they might need to access.

At present, there are 1,000 such volunteers across 1,200 villages who are actively providing peer support through this intervention. A majority of the volunteers joined the intervention given their lived experience of distress and mental health problems. Using the unique position of the village-based volunteers, services can be provided to those in need in an acceptable manner, free of cost, at people’s doorsteps. Our results show that people who interacted with the peers were twice as likely to recover from their symptoms of common mental disorders, as compared with a control group, and also showed sustained benefits eight months later. The World Health Organization has listed Atmiyata as one of the 25 good practices for community outreach mental health services around the world.

Another promising example of peer support in a different setting is Outlive – a youth suicide-prevention programme – for which we are pilot-testing a youth peer-support programme that trains youth volunteers aged 18 to 24 from universities and community-based organisations to provide chat-based emotional support to young people in distress and having thoughts of ending their life. The youth volunteers are provided with a 30-hour online training in basic gatekeeping such as identifying warning signs of suicide, assessing suicide risk, providing emotional support, and making referrals to other helplines and organisations. This support is provided via text-based chat on an online app that we co-designed with young people and which maintains the anonymity of both the peer supporter and the young support-seeker throughout. Peer-support programmes for suicide prevention such as Outlive are premised on the principle that one doesn’t have to be a professional or expert to support an individual with suicidal thoughts and feelings. Rather, shared lived experience as community members or peers, complemented with lay skills to provide emotional support and manage suicide risk, can help prevent suicides, especially in the absence of immediate formal support.

Despite these promising interventions, there are many challenges ahead – including a need to convince policymakers to look beyond conventional, professional-led models of mental health support. Unfortunately, there are currently very few peer-support programmes that are actually integrated in the delivery of public mental health services at scale covering large, diverse populations across different geographical areas. Nonetheless, we are hopeful.

Peer support shows that change is possible, that mental health is not the exclusive domain of mental health ‘experts’, such as psychiatrists and psychologists; rather, mental health is universal and relational – we all have varied experiences of mental health, which are shaped by our relationships with each other and the world. Peer support has the potential to bring a paradigm shift: to reclaim the expertise of persons with lived experience to shape mental health care pathways and control their own recovery journeys.

13 October 2023