Cultural vulnerabilities resulting in high conformity – Low communication orientation in families

Most families in urban informal settlements came across as protective, practised limited communication beyond the routine and expected social conformity (Koerner and Fitzpatrick Reference Koerner and Fitzpatrick2006), especially from young people, girls and women. Respect for, fear of and obedience to “authority” – especially towards parents – were of prime importance. Parents expected the same from their children because they grew up with “fear that was used to hold regard to” or “a lot of inhibitions towards and respect” for their “elders.” The confusion of “feeling shame at one’s undesirable actions” and “respect for elders” led to accepted expressions of shame for one’s actions that spread across households and neighbourhoods. Insufficient communication between parents and young people emerged as a pressing issue, underscoring the imperative for intervention by NSWs. The fabric of familial connections, crucial for the holistic development of adolescents, seemed to be lacking due to various factors such as survival pressures, busy schedules and inadequate understanding of effective communication. “As a parent, I am not able to identify or understand when the child feels disturbed or what goes on in their mind.” (mother, Kalwa).

Young people “without shame” were perceived to have “loose morals,” were “modern” and “free.” Culture expected a “good child” to comply and feared adolescents following the “galat raasta (wrong path).” Youth who “fell in love,” “answered back” at home, “disobeyed the elders” or “roamed around” would have taken the “wrong and prohibited path.” Some mothers feared about “girlfriend and boyfriends at the age of 12–13; they were looking at the internet and doing so.” Parents said that they “are afraid of friendships as they could be a bad influence” (mother Dharavi). Friendship with the opposite sex or meeting them alone was not allowed, and conformity was measured in terms of young people who “focused on their studies, did not go around much in the community” or did not express emotions of anger or irritation (“chid-chid”). These rules were imposed differently across genders.

My daughter also doesn’t go outside, she remains at home, she might argue with me, I will scold and shout but nothing else, she will go to school and then return home, the girls of her age come but she doesn’t go with them; my daughter knows her boundaries (mother, Kalwa).

Other conformity norms emerged especially for adolescent girls (Daruwalla et al. Reference Daruwalla, Mishra, Karandikar, Pantvaidya and Osrin2018). There was high emphasis on “honour” of the family that correlated with behaviour of adolescent girls, often resulting in trading off agency in the form of (i) restriction on aspirations, (ii) restrictions on expression, recreation, mobility and play and (iii) pressure to perform gender-based roles.

In my conservative family, girls are not encouraged to study. I envision myself becoming a teacher because I am passionate about education and want to make a positive impact on the lives of others. Teaching provides an opportunity to inspire and empower future generations. However, my father believes that girls should not go out and study, which creates a conflict within the family (adolescent girl, Dharavi).

Migration, poverty and gender roles

Cultural vulnerabilities were exacerbated by the pressures of household chores on girls. As both her parents worked, a 13-year-old Kalwa girl stated that her major stressor was “cooking at home; my 15-year-old brother does not help; he changes his clothes five times a day, I have to wash all of them; I’m responsible for running the entire household.” Field evidence revealed that parents did not explain their decisions to youngsters. There was no effective conflict resolution since conflicts were perceived negatively. Impoverished migrant families in urban informal settlements conformed because of material and cultural vulnerability. Control was enforced by immediate family members, extended family, neighbours and those in distant villages. Women – mothers of young people – had been staying in Mumbai for 15 years and had not “gone beyond Dharavi” even for a city tour or pleasure trip. Their sole purpose in life was to “ensure happiness for their husbands, secure education for their children, save money from whatever their husbands earned and keep the home and the hearth going.”

Many young people internalised the pressures by excelling in school and building a career, while others worked while learning. For a few others, it meant “giving up.” They expressed their tensions through “talking openly” with peers or sharing their worries with their mothers, siblings and cousins. However, some coped by “not talking to anyone,” sobbing or “going out when angry.” Some also resorted to “breaking things” and “hitting my sister.” While smartphones provided entertainment and coping, they also contributed to further isolation and alienation among young people.

Assessment of young people’s mental health and intervention by NSWs

Although the intervention was envisioned to begin with 500 adolescents, 413 adolescents were screened across three locations. The reasons for dropout and the site-wise number of adolescents enlisted are as shown in Table 1.

Table 1. Cumulative count of adolescents enlisted and screened (using the SDQ tool) by NSWs

Note: Reasons for drop in numbers:

• • Migration: 35%

• • Non-consent: 28%

• • Time constraint of NSWs: 20%

• • Time constraint of adolescents: 17%.

Of the 413 enlisted adolescents, the “total difficulties score” from the SDQ showed that 52 (12.5%) adolescents were at “high risk” of mental disorders, 52 (12.5%) were categorised as “borderline risk” and 309 (75%) adolescents were not at risk and needed distress management, as highlighted in Figure 4.

Figure 4. Prevalence distribution of high risk, borderline risk and no risk based on the SDQ screening by NSWs, based on “total difficulties score” and “sub-scales” (N-413).

Prevalence of mental health concerns could be understood from the total difficulty score, though intervention with adolescents was planned based on sub-scale score and sociocultural context. “Conduct” problems were present in 15% of the adolescents, and borderline peer problems were seen in 27% of adolescents. Considering the subscale score and history including abuse, grief and suicidal thoughts, those in need of intensive psychotherapy were referred to clinical psychologists. Cases that required further referral for strategic management were referred to psychiatrists.

NSWs counselled adolescents showing “no risk” and “borderline risk” on the SDQ. Two hundred twenty-seven adolescents were counselled by NSWs, 99 adolescents were referred to clinical psychologists and one referral was made to a psychiatrist. The core psychological intervention provided by the NSWs was guided and supported by the framework from WHO’s PM Plus manual (2018) integrated with CBT principles (WHO’s PM Plus manual 2018). The intervention involved a problem-solving approach along with behavioural management. The core psychological interventions were carried out within a phase-based framework with rigorous supervision processes and handholding from clinical psychologists trained in cognitive behavioural interventions.

In the first phase, NSWs interacted with the adolescents and their family members, explained the study intervention, built rapport, understood the present psychosocial context, and experiences of adolescents, and administered the SDQ. Lastly, NSWs discussed about each adolescent with clinical psychologists and outlined steps of action and support for the next phase of intervention. During the assessment and discussion, if the adolescents were found to be at high risk including the presence of abuse, violence and suicidal thoughts, they were directly referred to the clinical psychologists for psychotherapy and clinical support as required.

In the second phase, NSWs strengthened rapport and identification of problems and stressors. Once identified, they met clinical psychologists to discuss steps for managing stress and problems identified in keeping with the framework of the WHO’s PM Plus manual. This was supported with systematic supervision and one-to-one training with NSWs on problem-solving (listing problems, defining, brainstorming helpful strategies, devising action plans and revising), and managing stress (slow breathing and grounding exercises). On the need of adolescents’ problems, behavioural techniques such as contingency management and token economy were used.

The second phase included psychoeducation such as building a safe space for conversations and discussing the identified emotional and behavioural concerns in the adolescent’s respective psychosocial context. Building parental awareness of the concerns identified and discussing their questions and curiosities included educating about coping skills, readjustment of expectations and communication patterns and supporting the family with psycho-social support. Lastly, the causes of problems identified and management steps were discussed with parents.

In the third phase, after the completion of problem-solving steps and managing stress, a debriefing and introduction of termination were carried out under the supervision of the clinical psychologists. The process of termination was supported by a review of resources and learnings built and learned. The SDQ was administered again at the end to track improvement. Lastly, closure was informed and discussed with parents or caregivers.

Acceptability: Shifts in young people’s understanding of mental health and help-seeking behaviour

Data from the SDQ administered after the intervention among 175 adolescents showed that a large proportion of the adolescents (20%) moved from “borderline risk” to “no risk.” This change was seen across all three locations, with Kandivali seeing the highest proportion of change. However, the proportion of adolescents at “high risk” remained the same as highlighted in Table 2.

Table 2. Pre- and post-intervention data from the SDQ

Largely, the SAMWAAD intervention opened up spaces of communication for young people, while drawing support from their parents, and it established the relevance of (i) acceptance of the need to address emotional and mental health concerns, (ii) the importance of listening to young people and (iii) the recognition of help-seeking behaviour among young people.

There was an evident increase in understanding and articulation of mental health among young people and their parents. Post-intervention, most young people addressed mental health using words such as “problem,” “tension” and “stress” and no longer alluded to “naatak (drama),” “buri nazar (evil eye)” or “possessed,” as evidenced in formative situational analysis. One young person specifically said “it is the health of the mind” and another said “brain is under pressure.” Across all interviews, an acceptability of speaking openly about these concerns was revealed.

“Someone was taking interest in me, and wanted to know what I think and feel; I had never realised that these can be important for others,” emerged as a common theme across conversations. Interactions between young people and NSWs covered a spectrum of concerns they had – academic pressure and anxieties, career aspirations, conflicts with friends, feelings of suffocation, irritation, anger and alcoholism at home. With some, deeper conversations on grief and abandonment took place. Parents noticed an increase in agency among young people, and their ability to draw boundaries. One young person particularly stood up against violence at home “when his father abused him, and asserted that his father must not abuse him verbally while talking to him; he had also started standing up for me, telling him that I will dial 100 and call the police if you abuse her” (mother).

Regular and deeper than usual conversations with NSWs were resulting in noticeable behaviour change as parents found young people to be “politer and calmer.”

after I insisted that Tai (sister-NSW) talks to him at least once to make him understand the importance of studying rather than taking up a job; She must have been able to convince him, since now he is back to concentrating on his grade 12 studies (mother, Dharavi).

It was insightful to note how parents’ trust towards SNEHA “for being with us throughout our troubles” allowed them to “leave their children completely in the safe hands of the didi and Sir (NSWs).” This trust, notably strong, played a pivotal role in fostering greater receptivity to the intervention by NSWs in the stigmatised realm of mental health.

The results from the effects of the Friendship Bench (Chibanda et al. Reference Chibanda, Weiss, Verhey, Simms, Munjoma, Rusakaniko, Chingono, Munetsi, Bere, Manda, Abas and Araya2016) intervention in Zimbabwe demonstrated the trust reposed in the contextually relevant care of health workers. Likewise, for the SAMWAAD study, beyond assisting young people through their concerns and anxieties, NSWs also seemed to have become influencers for parents who mentioned that they were able to understand their children better and had started reflecting “on my own actions; Didi helps us understand how we should be behaving before our children.” Most parents felt that while the cultural context did not allow their children to open up to their parents, “our children felt safe that they had someone they could go to, someone they trusted and was older and could guide them; the didi/sir talk to children as friends and children pour out their hearts freely.” This perceived safe space for open dialogue, and emotional expression significantly contributed to the overall acceptability of NSWs. Both adolescents and parents agreed with the need for and the benefits of “talking about feelings and emotional wellbeing” as taken up by NSWs during the SAMWAAD intervention.

Personal and professional growth of NSWs

Out of the total 52 NSWs enabled to work with young people, 48 were retained for the intervention process based on availability and interest. In context of the urban informal settlements, accepting that the children in the community knew and recognised the NSWs more led to a stronger rapport between them, since the NSWs were also engaged in facilitating other “activities with the young people; I visit their homes for nutrition counselling and also know their parents; it is due to this familiarity that they are not hesitant to talk to me” (NSW, Kalwa). NSWs expressed a deeper understanding of the community’s context, cultural nuances and individual circumstances, enabling them to connect with the children better. This nuanced understanding stemmed from the fact that the NSWs were from the same communities and contexts.

However, in spite of NSWs belonging to the same communities, parents were often suspicious owing to the stigma and ignorance surrounding mental health; parental curiosity and a lack of communal privacy made it difficult for NSWs to maintain confidentiality. Some parents were hesitant to sign consent forms, expressing a deep-rooted fear of authority figures. Vulnerable and impoverished migrant families were anxious about potential future obligations, alienation in “pardes – foreign land” or negative consequences “since we don’t know how our signatures might be used.” A few were not comfortable with male NSWs holding “private conversations” with their daughters. Sessions with NSWs on respecting privacy and confidentiality enabled them to explain the study to parents of young people over a few meetings and gain trust. It was easier for SNEHA staff NSWs to do this owing to their existing relationships in the communities. Unpaid NSWs took time but eventually were welcomed by parents and young people alike.

Even though literature supports the benefits and need of task shifting within the broader public health system and mental health professionals, a distinct insistence on maintaining separate professional identities was experienced throughout the study. Some specialised mental health professionals seemed “worried about this; I noticed that even though the intention/motivation is great, practically they seem nervous in the field.” While some clinical psychologists were apprehensive about the idea of a task-sharing approach, a few others gradually shed their “biomedical” lens and challenged their own ideas, as they started valuing the contribution of the NSWs. The camaraderie between clinical psychologists and NSWs was evident with them leaning on each other since

The NSWs expressed how their perceptions about mental health had gone through a sea change. They were “able to draw boundaries in their personal lives, and were learning to say ‘no’,” “I use more eye contact during conversations and feel more confident in holding discussions” (community volunteer). The result of reduced stigma showed a drastic change in self-awareness, self-care and interpersonal relationships within families of NSWs. While some spoke about improvement in the ways in which they “now” interacted with their children and husbands, others reported increased confidence, improved listening skills and the ability to identify and mediate interpersonal issues.

After completing the capacity-building sessions and the intervention process, community organisers employed with SNEHA, doubling up as NSWs, mentioned that,

“the skills learnt through SAMWAAD have helped us connect better with young people across the cohort - it is strange that we have been working with them for so long and yet, we seem to understand them better only after becoming barefoot counsellors (BFC)” (NSWs); “I now understand separate aspects of the same person whom I have known since earlier; “actually, we were simply seeing signs before, but they were being ignored because our focus was limited to our work. Now, through BFC, I have learned about all these things; “even before becoming a barefoot counsellor, I used to talk to children, but now I know how to communicate step by step, what to ask, and even our way of speaking has changed. Children are enjoying the group sessions better now.” (NSWs from across Dharavi, Kandivali and Kalwa).

The NSWs showed proficiency in identifying subtle cues and providing assistance to individuals, even to those not enrolled in the programme.

The WHO Mental Health Action Plan 2013–2030 (2021) advocates the promotion of care through recovery-oriented community-based mental health and social support services. In the SAMWAAD pilot intervention, we found that the NSWs effectively filled the gap of the scarcity of trained human resources. They learnt with enthusiasm, challenged their personal stigma, assisted young people and their families and made appropriate referrals to clinical psychologists. During their engagement as NSWs, mobile phones were provided to facilitate communication with adolescents and the supervisory team. In the absence of monetary compensation, these phones with a nominal recharge paid by SNEHA were an incentive for the NSWs.