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Is it not mad, not to have choice? by Aileen Maughan

I am currently studying a Masters in Social Work at the University of Edinburgh. Thanks to Dr.Sumeet Jain’s (Senior Lecturer in Social Work) recommendation to read the “Mad in America” magazine, I came across a radical, medication free treatment option for people within Norway’s public psychiatry system. In the “Mad in America” magazine, I discovered an article on Åsgård, a psychiatric hospital offering a medication free treatment for people with a diagnosis of psychotic disorders and bi-polar in Tromsø, Norway. Thanks to my approved application for funding from the Go Abroad Fund https://www.ed.ac.uk/global/go-abroad/go-abroad-funding, offered by the University, it enabled me to follow my curiosity and covered the cost of my flights and accommodation. I was afforded the opportunity to visit the hospital to see this treatment in practice.

The medication-free treatment interested me because I have worked with people who have had complex mental health needs in both Éire (Ireland) and Aotearoa (New Zealand). Generally, the approaches I observed were predominantly orientated around the medical model. The medical model frames the cause of an issue as biological or physical and medication is generally the primary treatment form. For example, the rational is that a neurotransmitter issue is causing the presenting symptom which is treatable with medication. While the medical model has its merits there are criticisms of using this model exclusively within the context of mental illness. It fails to incorporate the complex psycho-social factors within a person’s life. The medical model perceives the illness as a deficit of the individual, which can be pathologizing.

In my previous work experience, some of the people I have supported did not want to be on medication and complained of the side effects. The medication they were prescribed did not “cure” their symptoms. They were in repetitive cycles of unwellness which led to admission, which led to an increase in medication, and repeat. For some people, medication treatment is necessary, life-saving describe it as beneficial. However, I began to question when it doesn’t work for some individuals, why is it the only option on offer? I’ve occasionally observed that when someone refuses their medication it can be viewed by professionals as a symptom of the patient’s illness.

I was very curious and excited to visit Åsgård hospital in Tromsø, Norway that was offering medication-free treatment within their public health system. The reason for my excitement and curiosity was because a medication-free treatment offered a different route to recovery, as opposed to the medical model which primarily relies on medication. I wasn’t the only one interested, people from all over the world were either requesting treatment or were professionals asking to visit. Some of the questions I had on my mind when arriving to Tromsø were; is it successful for the patients? And how are they delivering the treatment?

The hospital I visited has a ward with six beds offering medication free treatment to patients from one region. It is important to note that the patients the hospital treat are very motivated to be there. The patients being treated are not in current acute psychosis, nor are they experiencing severe suicide ideation. Patients generally stay two to three weeks at a time and are engaged with the team as long as the patient feels necessary. The majority of the patients who come, are on medication and wanting to taper down, or come off medication altogether. This is a lengthy process and can take anywhere from six months to three years. The general report back from patients is that they experience getting their own thoughts and feelings back, which is of value to them.

I spent two days at Åsgård hospital, and I was included in every aspect of the daily schedule. This was thanks to the organisation skills of the two lovely clinical social workers who worked there, and their desire to share and open up this treatment to other professionals. The schedule included attending team meetings, speaking with members of the team individually, observing the recovery workshops with patients, and chatting with a patient.

The first thing that struck me about Åsgård hospital was the beauty that surrounded it, built along a shoreline and surrounded by mountains. The opposite of other psychiatric wards I have visited. This was the view each patient had from their rooms…

Pictured below is a cabin the staff and patients assembled and painted themselves. During the winter they come out to the cabin to light a fire to cook food, and it can be used for therapy sessions.

While I was in the hospital a patient decided to share her experience with me. This patient (let’s call them Maria), felt it important that a patient’s perspective should be included in the discussion of medication-free treatment, and agreed I could share our discussion in this written piece. Maria said that she became unwell in her early teens and was then placed on medication. The years through adolescence that Maria was on the medication, she described as a “nightmare”, with no benefits and she fears the long-term impact of this. When the symptoms of Maria’s initial unwellness weren’t changed by medication, the medication was increased or added too. Maria said that she was never asked about her symptoms, or had any open dialogue about them with her treatment team. Maria’s recovery pathway was primarily to take her medication. Maria described that when she stayed in psychiatric hospitals with locked wards, it created dependency and loss of autonomy for her. Maria said this was because staff did everything for her and this made her recovery challenging.

Maria said coming to Åsgård hospital was scary because, for the first time, she was asked what she wanted, something she had never been asked before. Maria was told that she was responsible for looking after herself, which she believes is more helpful in the long run compared to her previous experiences. Maria spoke about how this hospital focused on her strengths and on what she could do. Maria started to explore her symptoms for the first time with her professional team. She began to ask questions about the voices she heard in her head, and what it might mean. Maria said the main difference is that this hospital is focused on recovery and there is nothing they can’t talk about, which is very helpful. I asked what recovery meant to her and she responded it was to find out who she is, without being under a haze of medication. Being on medication from an early age Maria said she doesn’t know who she is, but now she can start to find out.

I asked Maria what she thinks is important for other people to understand about this model of medication free treatment. Maria explained that she is the youngest patient staying on the ward, and a lot of the people who come here are much older. The older patients have spent most of their life on medication, and they feel as if they have missed out on their life. Maria said it’s sad that young people are not given a choice about medication. Maria attributes her quality of life completely changing for the better with coming off medication and coming to Åsgård. Maria can do things now that she wasn’t able to do before. Maria recognises that of course some people need to be on medication, but not everyone does. Maria said it’s sad to think how some people’s lives are being taken away from them. Taken away from people, who with the right support, are capable of recovering without medication and forced treatment. Maria has become active in her treatment instead of being coerced. Maria believes that choice should be available for other young people and wants to share that message.

My initial question of “how are they delivering the treatment?” was answered by observing and speaking with the staff and patients. These interactions affirmed my own belief and gut feeling that one of the most influential or powerful “tools”, is treating people who have a mental illness like humans first and foremost. With respect and dignity. Seeing the individual and their humanity, not the stigma and assumptions attached to their diagnosis. Exploring symptoms with the individual and what they might mean specifically for that person, as opposed to just logging them on a system. When speaking with the Experience Consultant (peer worker) he emphasised the power of healing within authentic relationships. He spoke about building professional relationships with patients where they feel safe and can trust the team. The patients feel like they can be open about their symptoms, which is often accompanied with a sprinkle of humour. This open dialogue with a trusted member of the team is difficult to quantify, but the experience consultant described how you can observe this internal shift within patients when it occurs. Personally, I think these relationships are pretty powerful medicine. Particularly when you consider how marginalised some of these patients may feel due to the stigma attached to these illnesses.

Based on my learning from this trip my primary question changed from “Is it successful?” to ‘why isn’t there a choice’? I learned that the medication free option is not the silver bullet for psychiatry and mental illness. The symptoms are still there for some. They aren’t “cured”. However, in this safe and trusting environment patients are able to discover their own internal capacity to manage the symptoms and self-regulate. It’s hard but incredibly meaningful to them. It’s a life many would prefer to live, over a life of coercion and disempowerment. This approach is so much more than a question of successful outcomes. A medication-free approach is about a person being able to exercise their own autonomy, their own right to choose and their dignity, which fundamentally can change people (like Maria’s) direction and quality of life.

So…. Do you think it’s a bit mad that there isn’t choice for more people?

 

Professor Joyce Lishman, 1947-2021

We were all very sorry to hear about the death of Joyce Lishman last week. Joyce was one of those special people. Not only was she an academic leader, teacher, researcher, publisher and writer, she was also a proud social worker, and it was her mission throughout her life to make social work and social workers the best they could be.  But even that does not tell the whole story. Joyce was a devoted wife, partner and mother, and a loyal friend – a genuine human being who was modest about her many achievements and who genuinely cared about everything that she was involved in.

Joyce graduated from Oxford University in 1968 with a degree in Politics, Philosophy and Economics. She subsequently came to the University of Edinburgh where she undertook a Diploma in Social Study, followed by a Diploma in Social Work, graduating in 1970. She then worked as a social worker for many years, firstly in child and family psychiatry in Edinburgh, and then moving to Aberdeen where she worked on a research project investigating social work practice. The methodology used in this research as ground-breaking at the time in its use of video to analyse social work interviews. This research became the subject of her PhD at the University of Aberdeen. Joyce went on from this to develop a new social work service for children with cancer or leukaemia and their families, and a bereavement service for families where a child had died.

In 1985, Joyce joined Robert Gordon Institute of Technology, Aberdeen, as a Lecturer in Social Work and was later promoted to Senior Lecturer. By 1993, she had become the first woman Professor at what is now called Robert Gordon University (RGU) and Head of the School of Applied Social Studies, a position she held until her retirement in 2011. During her time at RGU, Joyce continued to research and write on social work practice as well as leading in the development of social work education in Scotland. She was Chair of the Heads of Social Work Education Group for a number of years, and through this work, promoted much stronger links between social work programmes and with the Scottish Government. She also played a key role in the development of knowledge within social work worldwide, through her editorship of the pioneering book series, ‘Research Highlights in Social Work’, published by Jessica Kingsley in London. This series not only put social work research in Scotland on the global map, but also contributed to the creation of a firm evidence-base for social work policy and practice across the world. Joyce was responsible for taking 26 books through to completion, on subjects as diverse as co-production, child protection and women offenders. But it was her writing on practice learning and on communication that has probably had greatest impact on the profession. Students, practice educators and social workers themselves all remember fondly what they learned from Joyce, as the flurry of tweets over the last week demonstrates.

In retirement, Joyce continued to champion social work through her appointment as council member of the Scottish Social Services Council. She also developed her connections with the voluntary sector in Scotland. She was a co-founder of the venture philanthropy organisation, ‘Inspiring Scotland’, as well being a Director of the ‘Aberlour Childcare Trust’ and a trustee of ‘Voluntary Services Aberdeen’. In 2018, as part of its social work centenary year, The University of Edinburgh awarded Joyce the Degree of Doctor honor causa, in recognition of her contribution to social work and social work education worldwide.

When Joyce was invited to write her story for our centenary pages, she was asked what her thoughts were, looking ahead. Her response was so ‘Joyce’. She said, “Times are tough for new graduates…”

Viv Cree

Emerita Professor of Social Work Studies

The University of Edinburgh

2nd February 2021

If you want to read more about Joyce please see our Centenary Alumni pages http://www.socialwork.ed.ac.uk/centenary/people/alumni/joyce_lishman

4 Ways of Conducting Participatory Research With Children

children drawing

In a report by the World Bank Group (2018), 10 countries had a significant number of migrant children who had been living without their parents. This movement of the children within national boundaries has been enormous in India. Among the many organisations that work towards combating this phenomenon is Salam Balak Trust (SBT) and this is where this research had taken place. SBT pioneers in aspects of inclusion and providing basic education, medical health facilities and institutional care to migrant children. The children in their centres mostly hail from states of Delhi, Bihar, Jharkhand, West Bengal, Orissa, Punjab, and Maharashtra.

Participatory research methods help us to better understand the lives and experiences of children. The creative and visual methods help in developing communication, bond, faith and enhanced engagement. Moreover, it allows researchers to initiate discussions to explore the any topic that one is interested in exploring with children in comparison to other mundane methods. However, there can be some disadvantages for incorporating such methods. For example, not all children consider it to be fun and others may be inhibited by their capabilities. Older children may call it ‘babyish’ and not interesting. Beginning such methods with very small exercises acting as icebreaker games creates a happy and comfortable environment.

Participatory methods have proved to be an extremely handy tool for children in the age bracket of 10 years and above. As a researcher working on child migration in an urban setup, the approach was to enable participants to use and engage using the tools in order to gain in-depth knowledge on the marginalised and often neglected section of our society.  It was quite an emotional experience for both participants and the researcher that enables children to not only have time full of fun and frolic but as well as engage with other children to enhance stimulation. Pain and Francis (2003) explains how participatory techniques create a space of inclusive accounts among the participants by enabling them to make use of their own words and frameworks of understanding through a range of exercises such as mapping, drawings and similar techniques.

 

  1. Drawing maps or plans

A popular participatory method used in many studies to gather information about significant spaces for children and to explore their perceptions of these places. This tool enables children and young people to explore the risks they face such as in their local communities, to identify protection factors in their local communities, also identifying the risks they most want to change. It provides views and opinions on their current situations. For instance, drawing a village or a community with the help of other children of the group or the researcher.

  1. Thought showers

A popular tool to explore their views and ideas. Children are asked to write or draw a picture in the middle of a large piece of paper to enquire what ideas come into their heads associated with that word or thing. The picture drawn will act as a stimulus for children to think about the journeys and decisions taken, fears faced and cultural context of the environment they are and have come from. Such as, how do you feel around say, a brother or father, how do you like your village and similar circumstances.

  1. Drawings

As a method, it is regarded as an appropriate warm-up activity to enable the children to become familiarized with the adult researcher. The use of drawing gives children time to think about what they wish to portray. The image can be changed and added which gives children more control over their form of expression, unlike an interview situation where responses tend to be quicker and more immediate.

  1. Tree activity

This is specially designed as an assessment exercise helping to initiate discussions on resilience and stress factors in the lives of participants. To initiate this activity, pens, A4 size paper and a quiet space are the basic requirements. Children are often good at making and listening to stories. Hence, in this activity they think of themselves as a tree and draw or write on the roots about the things or people who keep them safe and sound. This activity is great when one wants to know about personal/innate attachments of the child in the family or maybe how he/she deals with a person they don’t like.

While the roots represent resilience factors in the life of the child, the trunk will show the strengths and positives surrounding them. The leaves and branches will explain the vulnerabilities, risks, negatives and stress factors in their lives. In this activity, questions such as who looks after you, supports physically and emotionally, what qualities this person has that makes the child comfortable, what skills did you use? How did you feel after you coped with it?

From the many experiences during the 6 months duration of incorporating participatory  methods, I have learnt a lot.. For example,  the activities that are prescribed and many more that one wants to conduct needs proper planning and execution. Chances of children leaving during the activity is normal and high. Therefore, it must be planned and initiated according to the age and interest related children groups. One should know the characteristics and interests of the children they  want to involve to make smooth beginnings and endings of each activity.In addition, it is recommended to create small groups of less than 10 people (in each group) in order for children to enjoy the whole process in a group setting and gauge their interests for longer hours. At the end, just go with the flow and enjoy the journey with children!!

The author of this blog is Yukti Lamba, PhD Candidate in Social Work at the University of Edinburgh.

REFERENCES

World Bank Group. (2018). Migration and Remittances. IDEAS Working Paper Series from RePEc.

Pain, R., & Francis, P. (2003). Reflections on participatory research. Area, 35(1), 46–54. https://doi.org/10.1111/1475-4762.00109

Darbyshire, P., Macdougall, C., & Schiller, W. (2005). Multiple methods in qualitative research with children: more insight or just more? Qualitative Research, 5(4), 417–436. https://doi.org/10.1177/1468794105056921

Morrow, Virginia. (2008). Ethical dilemmas in research with children and young people about their social environments. Children’s Geographies.

Punch, S. (2002). Research with Children: The Same or Different from Research with Adults? Childhood: A Global Journal of Child Research, 9(3), 321–341. https://doi.org/10.1177/0907568202009003045

Wosu, H., & Tait, A. (2013). Direct work with vulnerable children : playful activities and strategies for communication. London: London : Jessica Kingsley Publishers.

 

 

How do you compose out of darkness a song of light?

How do you compose out of darkness a song of light?

Quote from Kei Miller, Poet

Tonight I stumbled on this beautiful quote from a podcast on the Scottish Poetry Library website.  It made me think about the purpose of social work and how dark and heavy these strange times can feel at the moment.

This is the first blog for our new Social Work Departmental blogspot.  Our plan is to use this space to grapple with the dark and spread light.  As a department we have been thinking about doing this for a long time.  The recent COVID-19 crisis has focused our minds and we have been asking ourselves, how can we reach out and create community in these times of social distancing?

Writing more often, in different formats to reach a range of communities of interest seemed one important way to do this.  Blogs are short pieces of writing which are freely available to anyone with the time to read them.  We will be writing blogs about lots of different things.  Blogs may highlight:

  • new projects or research publications
  • innovations or reflections on learning and teaching for social work students and practice educators
  • work in progress
  • insights for practice from our discussions with students and practitioners
  • theoretical developments

Blogs will be written by staff and students from across the department.  We also hope to feature blogs from our friends and collaborators in practice, including practitioners and those with lived experience.  We will invite researchers from other disciplines to write about their own research and how it might be of use for social workers.

We hope to start some conversations about the things that matter most to us as a group of social work academics, questions like:

  • What is social work for?
  • How do we change the larger social structures that continue to replicate conditions of inequality and adversity, whilst also meeting the needs of individuals?
  • How do we best nurture hopeful and creative social work practice and research?

We hope you will read our blogs, contribute to conversations and perhaps write a blog yourself.

We would love to hear from you.

Dr Autumn Roesch-Marsh, Senior Lecturer in Social Work

You can follow us on Twitter @SocialWorkEdinU

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