COVID-19 Webinar 15: How to support patients and caregivers
The Lancet Psychiatry, Mental Health Innovation Network, MHPSS.net and United for Global Mental Health organise a series of weekly webinars designed to provide policy makers and the wider health community with the latest evidence on the impact of COVID-19 on mental health and how to address it.
Speakers:
Fahmy Hanna, WHO
Jasmine Kalha, Program Manager and Research Fellow, Centre for Mental Health Law and Policy, India
Aakanksha Kapoor, Founder & Director, Minds At Play, Neevam Foundation, India
Santie Terreblanche, Deputy Executive Officer, Cape Mental Health, South Africa
Key Messages
Jasmine - we need to invest in and scale up evidence based, community based interventions.
Aakanksha - one learning from working with children and communities: there needs to be more capacity building for young people in communities and more training to enable them to handle situations and to be better caregivers to themselves.
Santie - money would be very nice but we can’t sit back and wait for it. We have to have the will and then we have to find the way. We need to continue to advocate for more access and more investment.
Fahmy Hanna, WHO
Welcomed the group and introduced each speaker, He asked them, in the context of COVID-19, what was your biggest achievement/innovation in continuation of services and engaging service users and caregivers?
Aakanksha Kapoor, Minds At Play, Neevam Foundation
Minds At Play started last year to bring emotional wellbeing curriculums into schools in New Delhi. When the COVID-19 outbreak started all the interventions stopped as we were working only in-person. And the biggest achievement was within a few weeks, using existing technologies, we were able to translate all the offline curriculums into online curriculums and make them more pandemic specific. Now the curriculums address the issue of COVID-19 and how children and their families can cope.
For children without access to zoom or smartphones we created WhatsApp groups to communicate through parents and older children. While in other instances we used YouTube or audio notes. We encourage children to send their work through video and audio notes. Slowly we are getting children to move onto zoom.
Fahmy Hanna, WHO
This is a great example of innovation and how to shift from one electronic tool to another. As a reminder to the audience, this webinar is being recorded and there is a hashtag #COVID19MH to tweet to ask questions or share comments.
Jasmine, what has been the biggest achievement?
Jasmine Kalha, Centre for Mental Health Law and Policy
The Atmiyata project started in 2017 and has scaled up from a pilot to a rural district of 1 million adults and 615 villages in India. We know there is a large mental health care gap (70-90%) and we have focused on the WHO mental health pyramid of care - investing in self care and community care. We have invested in community based interventions and aim to help reduce poverty and isolation. We use existing social capital to provide services available at people's doorstep at no financial cost.
Since 2017, we have recruited 500 volunteers. Volunteers deliver basic counselling sessions; they also refer people to mental health services. We use evidence based techniques and address issues people have such as conflict, violence, alcohol use. We look at economic aspects too. The model is based on the language of distress not illness - people are trained to understand their stress, the impact of their environments, the social determinants that impact the way they experience distress etc. We use a strength based perspective.
We have a new evaluation which looks positive and we plan to scale up the programme. You can see some videos we have produced here.
Fahmy Hanna, WHO
I have had the pleasure of visiting and seeing for myself the work of Atmiyata.
Santie: What was the biggest achievement?
Santie Terreblanche, Cape Mental Health
Cape Mental Health is a non-profit providing mainly day-care to adults and children with learning disabilities, and adults with psycho-social disabilities. This implies that people come to “clubhouses” in person. (In South Africa children with severe intellectual disabilities are not integrated into the school system.)
At Cape Mental Health we had to find ways to put everything on line. Fundamentally, we could either see ourselves as victims, or try to find another way. This is what we did.
We have had to move our programmes off-site. The first wave of COVID hit us a bit later than China and Europe, so we had more time to prepare. We anticipated the lockdown, and we were prepared for it a week before. Initially, ~50% of staff were remotely involved in the new model online, now 85% of staff are actively involved and that means job descriptions changed, of course.
It took 2-3 weeks to get the organisation’s staff and those they worked with to adapt. The achievement was to maintain the integrity of the programme [that delivers mental health services to children with learning disabilities]; duplicating the structured day that was usually delivered in the facility so that the carer and the parent could do it at home e.g. the song at the opening etc. We also had to do a lot of training for parents e.g. not to schedule learning slots but use times of feeding, bathing etc. We have managed to reach out to 100% of our service users. And have had very good feedback but we have to maintain themes, topics, activities for the children to feel supported.
Fahmy Hanna, WHO
I like the idea of the mindset and how to find an alternative way.
Moving on, what are the challenges facing you in continuation of services and engaging service users and caregivers and how are you overcoming those challenges?
Aakanksha Kapoor, Minds At Play, Neevam Foundation
The biggest challenge has been lack of human interaction. The facilitator and children usually create a physical safe space when meeting face to face and they adapted well to working online. But the children we didn’t previously know took longer to get the ground-rules set up, explain the point of these sessions and help them get used to it. This took 3-4 sessions.
Internet safety is also a big issue. We have had to inform the children (and their carers) what are the safe ways of using social media etc.
Lastly, the challenge is to access good data. We had assumed that a cheaper internet would mean that access was greater but access is poor, and many people are excluded (not just from our programmes, but also from school as a whole). We are trying to figure out the best approaches e.g. providing cheaper smartphones and data packages to children through re-leveraging a part of our grant money.
Fahmy, WHO
As you say, innovation can bring across new challenges, like internet security. Jasmine, your project is focused on Maharashtra, and this is hugely impacted by COVID-19. What have been your challenges?
Jasmine Kalha, Centre for Mental Health Law and Policy
The challenge has been how much you adapt and for how long to continue the feasibility of the model you use. We have had to move from face to face to a phone-based approach. But mutual trusting relationships do take time to be built and volunteers need time to get to know people before they open up.
To start with we also found it hard to reach our volunteers because there was a period when they themselves were going through their own distress and were not able to work. They needed to get support from their mentors.
The biggest challenge is safe spaces for counseling interactions and privacy. When there are restrictions in movement it gets challenging to reach people e.g. a woman who wants to speak to a volunteer about domestic violence but is constantly surrounded by family members. Another challenge is lack of clarity on COVID-19 related guidelines by the government - any guidance is met with some distrust.
We have now got contact with all volunteers and are ensuring they are OK. The priority is their safety during the pandemic. We have seen new people reaching out to volunteers. And we are lucky to have flexible funding thanks to the Mariwala Health Initiative (MHI) to adapt.
In summary, we are trying to reach out to everyone in an equitable way while not risking the health and safety of our volunteers.
Fahmy Hanna, WHO
It is important to see the leadership of the team in addressing these challenges. Santie what have been your biggest challenges?
Santie Terreblanche, Cape Mental Health
We operate mainly in previously disadvantaged communities, in townships and neighbourhoods where poorer communities are located.Resources are scarce, people live in shacks sometimes. We have to use what they have available. As a result, high-tech programmes may not work for them, even if we can set them up. There is also a high cost of data in South Africa so we had to find creative ways to ensure whatever we sent was as low data as possible.
Whatever activities we had needed to have low costs and use what is available to people e.g. potatoes, bananas, onions to practice counting. Dish washing to explore different textures, temperatures or counting cups etc. There is limited space where children need to practice motor skills - to jump, kick, catch etc. The expectations of caregivers need to be very realistic.
In South Africa we have 11 official languages and we need to be able to engage in all the languages required (in the Cape that is three languages).
And now caregivers have started to return to work, the person in the household with the phone is leaving the house and there is no communication so we have to send the programme a day in advance instead of on the day. Lockdown fatigue has set in: and people are asking when will it ever be the same. We need to keep supporting and making sure caregivers are not burnt out. Providing respite care is a key part of our work and we can’t provide that right now. We are particularly concerned about aging parents with adult dependents. Our staff, too, need a lot of mental health support. At this point, it’s endurance that will make or break the programme – being able to carry on.
Fahmy Hanna, WHO
In response to an invitation from Sarah of UnitedGMH, here is a brief update on the recent work of WHO on mental health. We have published the following new guidelines:
One of our most successful initiatives is a children’s story book, “My Hero is You,” for children aged 6-11 years on coping with COVID-19. It is now available in an unprecedented 112 languages online including local languages in India, South Africa etc. There is a dedicated website that includes different adaptations including a braille one and different sign language versions.
For our panelists, what are the technical tools you are using to develop your services in context of COVID-19?
Jasmine Kalha, Centre for Mental Health Law and Policy
We have managed to translate our tools into the six regional languages and used dissemination through WhatsApp and YouTube etc. And we have worked with a well known personality in Gujarat. We have adapted WHO materials and that of the government to what would be easily understood by our communities in terms of visuals and messages to make the tools most effective.
Santie Terreblanche, Cape Mental Health
We use whatever tools we can. I haven’t seen any of my colleagues or the people in our centers face to face for 16 weeks. We have to work as a community and maintain that - many staff members live in townships and have very little resources. Their activating skills have improved over time. They are playing to the camera and using the same voice people are used to; they maintain the atmosphere of the facility in the videos they send out; they try to recreate that sense of belonging for the service users. It is extremely important to create the sense of belonging. They demonstrate how to do things in their own homes.
The key is to maintain contact - it can be just a cell phone - calls, texts etc. We give our staff data packages. Although we haven’t budgeted for this, we have had to be created to make it happen. The success of the programme lies in how well you can use different elements to create a sense of community, and infuse it with hope that we can be together again.
Fahmy Hanna, WHO
So Santie, you have decided to invest in your staff who are delivering the programme in order to better support the service users.
Aakanksha Kapoor, Minds At Play, Neevam Foundation
We are sort of in the middle of the approaches of Santie and Jasmine. We piggy-back on WHO and other big organisations’ information. And as soon as we find the information we disseminate it on WhatsApp and via the Zoom classes. However, we need to constantly look at and review, disseminate tools that we find.
We also looked at - given our work with children - play and art based activities from what is available globally online. We have taken inspiration from a lot of materials available globally and made them more culturally specific games e.g. tippy tap. We try to give examples as worksheets and ask children to create them using materials at home. Minds At Play is a technical tool - using Cognitive Behavioural Therapy (CBT) and mindfulness to address stress and anxiety and depression from a preventative aspect. We help children identify safety spaces and safe people so when they feel stress they can identify it, seek help and access care.
Fahmy Hanna, WHO
A question from the audience. “I am in Mumbai and have been in lockdown. What are the self care tips for me (as someone with bipolar)?”
Jasmine Kalha, Centre for Mental Health Law and Policy
We will share a link for an online group to support bipolar people in Mumbai. We use active listening and problem solving to support people in this position. There are also lots of WHO resources that can be very helpful, for example this one on staying healthy at home.
One peer support run by Mr. Vijay Nallawalla: https://www.bipolarindia.com
Another resource is Patients Engage by Ms. Aparna Mittal https://www.patientsengage.com
Fahmy Hanna, WHO
I would also recommend you remain socially close to family and friends and not stay socially alone. If he/she is taking medication and receiving therapy then they should continue communicating with their healthcare provider to see if they need communication or support.
Santie - your group is a very vulnerable group. Who are the most vulnerable in this group and how are you supporting them?
Santie Terreblanche, Cape Mental Health
Children and adults with severe intellectual disabilities are the most vulnerable. They rely very heavily on caregivers and rely a lot on the support of the CMH centre (when it was open). We need to educate the caregiver that care is not enough. There must be stimulation, routine, structure, challenges – we all enjoy challenges, and people with disabilities need these to improve.
Carers also need to learn to wear different hats. This can confuse the carers and the service users (mum vs teacher vs therapist). But you need to enable them, as they are the hands and feets of the service. The programme needs to be easy enough to achieve.
Carers also need patience – we are all more irritable in lockdown. So at times we need to protect the person with the disability from physical or verbal abuse because of the frustrations of people around them.
Fahmy Hanna, WHO
What is one key lesson you want to share?
Jasmine - we need to invest in and scale up evidence based, community based interventions.
Aakanksha - one learning from working with children and communities: there needs to be more capacity building for young people in communities and more training to enable them to handle situations and to be better caregivers to themselves.
Santie - money would be very nice but we can’t sit back and wait for it. We have to have the will and then we have to find the way. We need to continue to advocate for more access and more investment.
Fahmy Hanna, WHO
Thank you - to read more see the MH Innovation Network website and the resources they have shared. And through the UnitedGMH BluePrint Group newsletter and website we will share all the resources. Thank you to all participating and organisers.
Sarah Kline, UnitedGMH
Thank you. We look forward to seeing everyone next week for a discussion on integrating mental health into health systems. Register here.
