Jan 072016
 
MAN on the MoonSyria

Living well right to the very end:

Natural, healthy and health promoting, what are the essentials of an end-of-life caring network? The basics are a kitchen table (or similar), teapot, mugs, and cake or biscuits. In other words the caring networks we are talking about are ‘grassroots up’ by and with local people, and – if not in a war zone – are usually taking place in somebody’s HOME. They involve us in talking, sharing, caring, giving practical help, and – if we want to and we have a mind for it – some writing.

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What do we KNOW about ‘Grassroot Up’ (by and with local people)  end-of-life Caring Networks?

From community development research  (Ref 1) we can say that caring networks are:
1. Benevolent, competent and capable of a variety of caring jobs
2. Usually have x1 person with experience of death
3. Can be any size, but the minimum seems to be x3 people
4. Comprise friends, family, neighbours, work colleagues (etc) – the involvement of friends is central and consistent
5. There is both a core network and an outer set of networks
6. Formal care providers and services (when mentioned) are in the outer networks
7. Can arise spontaneously or be initiated and facilitated
8. It is usually a primary carer who does most of the negotiating and organising

 Where does WRITING come into end-of-life Caring Networks?

“80% of us say we want to die at home, but only 22% do so”

Living as well as we can and for as long as we can in the PLACE of our choice: so how do we communicate the change that most of us want? It involves us participating in a movement for wellbeing –and social change. It is a movement towards openness and democracy, and challenges the concept of a managed death which requires professional support and knowledge where most dying takes place in hospitals – ‘cellular, private, curtained, individualised and obscured’ (Ref 2).

There are many different ways for us to give VOICE and find the right WORDS, and we don’t need to be the smartest cookie in the supermarket multipack to do it. Our caring networks will help us say the things we want and tell our stories. We can take everything that has happened to us, turn it, distil it, and receive it back – and we can write it down if we want to – in the hopes it might help us, move people that read what we write, or be useful to others.

DIFFERENT WAYS of Writing in ‘Grassroots Up’ end-of-life Caring Networks

1. Bringing our Dying Home: Creating Community at end of life

https://caringatendoflife.files.wordpress.com/2011/09/2012-bringing-our-dying-home.pdf
This 2 year research project took place in Australia 2009-2010 with 94 people providing a rich visual, spoken and written mix of narratives about their informal caring networks. The project found people who resisted the managed death approach, and grew caring networks that broadened and deepened connections over time and supported those who were dying to remain in their place of preference. The research method for network analysis included large sheets of ‘butchers paper and textas’ on which people wrote, drew and illustrated their growing caring networks (Ref 3)

2. Macmillan’s Online Community: “I had the same thing happen to me”

http://community.macmillan.org.uk/
This online community has forums, blogs, cancer patient support groups, all of which of course involve visitors and participants in writing on Desktop PC/Apple/Smartphone devices.

The story is spoken by Helen. She gives an account of her cancer journey and the positive effect of being connected through the Macmillan online community. Helen’s words for this much praised video have been scripted and are accompanied by an animated cartoon.

3. Diealog Programmes: Compassionate Community Hubs

http://diealog.co.uk/
This EOLC community-centred peer support/self-management approach (Ref 4) brings together local people to co-create and grow their caring networks. Diealog ‘Buddy Groups’ form an essential part of sustaining and supporting these caring networks, and rippling out engagement activities include writing at workshop events and written stories which are published online.

Main themes from written feedback from Diealog ‘Buddy Groups’ participants (2013-2014) were:
“Staying connected, and as much social contact as I want”
“Being supported and supporting each other as I age and face my own dying”
“Practical stuff mainly, small acts of kindness and tasks of caring (and for carers)”
“Feeling better and healthier in myself and more confident and in control of my future dying”
“Being able to think about and decide my wishes, especially the place and way I want to die”
“Helping each other with information about services and other resources”
“Having ‘buddies’ there to help me (if I want) to talk with my family, or doctors and nurses”
“Being able to be as open and honest with my ‘buddies’ as I want, and feeling safe talking about everything”
“Feeling I am helping others, and our ‘buddy group’ effect is rippling out and changing attitudes”
“Keeping things light-hearted – normal and ordinary – and being serious at the same time”

4. Seven Songs for a Long Life: “Singing is pure medicine for the soul.”

http://www.sevensongsfilm.com/film
Film-maker Amy Hardie spent 3 years in a collaborative filming process at Strathcarron Hospice in Scotland with patients and staff, and has made a documentary in which stories of vulnerability are told, some are written down, and songs are created and performed.

Public showings of the film are frequently followed by a workshop in which we are invited to write answers to the following questions (these are much the same as patients are asked when they are first interviewed at Strathcarron Hospice):
1. What’s a good day for you?
2. If you had a terminal diagnosis with not long to live – but you didn’t know exactly how long – and your only symptom is that you get tired easily; what would be a good day then?
3. What qualities that you’ve expressed in your life do you want to be remembered by?
4. What actions do you take at the moment that express these qualities?
5. After a life-limiting diagnosis, can you still express these qualities in your daily life, or are there other things you might do?

What are the main OUTCOMES of ‘Grassroots Up’ (by and with local people) end-of-life Caring Networks?

Evidence from social network analysis (Ref 5) shows that the main impact of improved EOLC caring networks is increased social cohesion/social capital, achieved through growing and deepening our connections, and rippling out effects that reach other people in our local communities.

Direct therapeutic benefits from specific writing activities are difficult to research, but writing activities are almost always integral in one form or another to the primary increased social cohesion/social capital outcome. Writing activities also frequently contribute to the following related measurable benefits of caring networks:
1. Person-centred improved health status, and wellbeing
2. Empowerment, know-how and skills to act
3. Mutually beneficial interactions with formal carers.

References

Ref 1. End of Life at Home: Co-creating an Ecology of Care
Horsfall, D., Yardley, A., Leonard, R., Noonan, K., & Rosenberg, J. P. (2015). Penrith, N.S.W.: Western Sydney University. http://researchdirect.uws.edu.au/islandora/object/uws%3A32200

Ref 2. Reflections on the Death Scene
Bruce Buchan, Margaret Gibson and David Ellison (2011)
Cultural Studies Review volume 17 number 1, pp 3-15
http://www98.griffith.edu.au/dspace/bitstream/handle/10072/44078/71172_1.pdf?sequence=1

Ref 3. Bringing Our Dying Home: How caring for someone at end of life builds social capital and develops compassionate communities
Horsfall, D., Noonan, K., & Leonard, R. (2012).
Health Sociology Review, 21 (4): 373-382
http://researchdirect.uws.edu.au/islandora/object/uws:14861

Ref 4. Public Health Approaches to End of Life Care: a Toolkit
Aliki Karapliagkou, Allan Kellehear, (2014)
http://www.ncpc.org.uk/sites/default/files/Public_Health_Approaches_To_End_of_Life_Care_Toolkit_WEB.pdf

Ref 5. Identifying changes in the support networks of end-of-life carers using social network analysis
Leonard R., Horsfall D., Noonan K. (2013)
BMJ Supportive and Palliative Care doi:10.1136/bmjspcare-2012-000257
http://spcare.bmj.com/content/early/2013/11/19/bmjspcare-2012-000257