By Rosalind McCollum and Maaike Seekles
The GMHS held in beautiful Canterbury 22nd – 23rd March 2023 at the Kent and Medway Medical School, provided an excellent opportunity to learn more about mental health research being carried out within India, Pakistan, Sri Lanka and the UK.
While the context varied from Liberia, there were many valuable reflections and learnings from the two days, which echoed some of our own findings in REDRESS, and provided inspiration for future reflection.
- Shift the emphasis from illness to strength
There was reflection on the need to shift from placing the emphasis on a persons’ illness/liabilities, to their strengths. Specifically, the FRAMERS study in India highlighted a need for strengthening people’s skills towards resilience and empowerment to better adapt to life’s changes through examples from school-based life skills education interventions aimed at improving mental wellbeing amongst adolescents, whilst involving wider families. This re-orientation of emphasis can also be a potential area for consideration within peer support groups in REDRESS, as affected people (particularly those who may already have a permanent impairment) think through the changes they have experienced in consequence of their condition, but also look for ways to adapt and build on their strengths, both individually and within the group. The group had used a multisystemic framework of resilience to underpin their work, seeing resilience as something that can be strengthened, as opposed to a character trait that someone either possesses or not.
- Build trust, and consider avenues for involvement of informal and private providers
Varied providers both formal and informal emerged forming an important part of the continuum of care for people with mental illnesses. Just as with people affected by NTDs, the role of the caregiver for people with mental illness also came through clearly. Trust emerged as central to the care pathway for people experiencing mental illness in shaping where they choose to seek care.
THEHOPE study in Pakistan worked to involve traditional and spiritual healers to identify and refer persons experiencing psychosis. Methodologically, the project reported the need for ethnographic research, as TSHs were not easily willing to share their ‘secrets’ regarding how to diagnose and treat mental illness. Stigma and fear of mental illness, along with beliefs around the cause of psychosis due to spirits, magic or evil eye, shaped care seeking practices for affected persons and their family. Affected persons felt more comfortable seeking care from a traditional or spiritual healer. Spirit possession can also be empowering to an individual in Pakistan – some people are happy to be diagnosed with possession as it is believed they have special powers, but would not want to be classed as a psychiatric patient. This preference for TSHs strongly reflected some of the findings from REDRESS’ work with traditional and faith healers and the ways we have sought to engage them by providing them with sensitisation about skin NTDs, and to encourage their involvement with identifying persons affected by skin NTDs. Cognitive behavioural therapy for psychosis has been introduced within THEHOPE study, and the importance of involving the person affected and their family as active drivers of treatment, rather than merely being a passenger was highlighted. The three core components of the intervention’s holistic approach of prevent (hospital admissions), reduce (treatment delay) and preserve (relationships, identity and hope) seem just as suitable for strengthening the holistic care of people affected by skin NTDs, as for patients with lived experience of psychosis. With proper adaptations that include the use of simple language and analogies, it was felt that this type of therapy was also suitable for uneducated persons.
Remembering the role of private providers is also central within services for people with NTDs, and REDRESS have trained health workers from both public and private facilities, with supportive supervision continuing for both facility types to hold both types of provider to the same quality standards. The complexity of introducing an intervention was considered within South Asia, and the links between tuberculosis and mental illness (CONTROL study), in terms of affected persons experience of stigma, is another echo to our findings within REDRESS for people with skin NTDs and people with mental illness. It was felt that we could learn a lot from models already used in infectious diseases, particularly tuberculosis. The STOPS study aims to adapt and test a TB treatment adherence model for use in schizophrenia care.
- Remember social capital for wellbeing
The Rajarata Pregnancy Cohort study in Sri Lanka revealed the links between social determinants of health and mental wellbeing for adolescent mothers, along with the importance of social capital for wellbeing. Building social capital and relationships is a central element within the peer support group approach in REDRESS. Prompting us to look beyond the tip of the iceberg and more fully understand the implications was a helpful consideration from this team, particularly relating to deaths by suicide, with thousands of people experiencing mental health symptoms for every person who sadly dies by suicide. This was highlighted be several country teams. The impact of the recent economic crisis in Sri Lanka was also highlighted in a recent SPARC study of perceptions of mental health, along with the role of informal providers in caring for people affected.
- Shape care around the needs of the person
An overview of the provision of care for older people’s mental health services within the UK emphasised that services should be based on what a person needs, rather than just their age. This emphasis on using a person centred approach orientates all our work within REDRESS. Thinking through integrated care systems in the UK, reiterated the need for integrating physical and mental health, as well as cross-sectoral collaboration with social care and with housing and other sectors with impact on social determinants and wellbeing. This is a well-known pillar with the World Health Organization’s Roadmap for Neglected Tropical Diseases 2021-2030.
- Community engagement is critical
Throughout the symposium the importance of community engagement came through strongly, and we were able to learn from some of the community engagement approaches adopted within ECLIPSE, with the use of videos to raise awareness about cutaneous leishmaniasis in Sri Lanka, and to learn about people’s lives in Brazil. The vital need for trust within relationships for people with mental illness and between all communities involved within research was emphasised, and trust was described as being the outcome of research integrity.