Blog Archives

Parkinson’s palliative and end of life care

We are delighted to launch the next course created in partnership with Parkinson’s UK. ‘Parkinson’s palliative and end of life care’ is aimed at health professionals working with people with Parkinson’s. The course aims to encourage early conversations about advance care planning, and the need to make decisions about treatments which people may or may not wish at the end of their life. The course explores the role of the multi-disciplinary team which may be involved at this stage in a person’s life and looks at each member’s role in supporting and managing the person’s physical, social, psychological and spiritual needs (and those of their carers) throughout this journey.

 

The course highlights the importance of people with Parkinson’s understanding the condition’s trajectory and the possible impact in the advanced stage so that they can make informed decisions in advance about what they would like to happen towards the end of their life and to consider any involvement of their relatives/carers.

This course is part of a suite of courses by Parkinson’s UK which address key issues for people with Parkinson’s, their carers and the health and social care professionals working with them. We are delighted to be able to support Parkinson’s UK to create this course as an open course which means it can be reused or adapted by others or embedded in other courses provided that the original authors are attributed. This ability for others to reuse and adapt the content was a key attraction for Parkinson’s UK, and they hope that health and social care lecturers will integrate the materials into their courses. This would substantially increase the support for health and social care professionals and therefore for people with Parkinson’s.

 

Sign up for the new ‘Parkinson’s palliative and end of life care’ course

View the Parkinson’s UK collection of courses.

 

Pic credit: By AlexandreDulaunoy (Own work) [CC BY-SA 3.0], via Wikimedia Commons

Some Reflections on “The Gathering” 2017

At the SCVO Gathering in February we had a stall where we collected information about Third Sector engagement with free open online materials, we used an interactive poster as a survey tool, with a good response rate, and we ran a workshop on day 2, which 21 people came to. A fuller report on the outcomes of this is forthcoming, but we thought it was worth sharing an impressionistic account of the workshop.

OEPS stall at the Gathering 2017

Figure 1: The OEPS stall at ‘The Gathering’ by OEPS CC-BY-NA-SA 2.0

In the workshop OEPS and Parkinson’s UK shared our experience of the opportunities and challenges of working with each other to create OER (for example Understanding Parkinson’s) and we also explored Scottish Union Learn’s work supporting users of OER. We kept it brief, because we wanted to allow space for others to explore this area. We asked two sets of questions, one set were a “what if”, and the second to think about what openness might enable.

In the first set we asked people to imagine a future where education is free and open, and then reflect on what it would enable for them as an organisation that uses, or may produce, resources to support their clients. On the broader scale while people did think it might be empowering and allow some to overcome barriers, they were concerned who would be empowered, and whether it might accentuate inequalities. They saw it would give them reach as organisations and might reduce costs of delivery and development, but were worried about the ability of their organisations to cope.  While they recognised the opportunities for organisations and clients, this concern around capacity was also expressed in relation to delivery. There was a lot of concern expressed about business models of openness and how this might be supported in the long term

In the second set we asked them to dig a little deeper and reflect on what open would enable, getting them to think about what would need to happen to make it happen, what needed to change within their organisation and what it would enable them to do for their clients. There was a focus on strategic leadership within the organisation and the need for resources (both finance and people) to be allocated to the area. There were also responses around lowering the bar, with organisations feeling that developments costs and technical difficulties were still prohibitive. People felt funders would need to recognise the costs of being open and there would need to be clear and transparent ways of establishing the value for their clients. The emphasised that costs should not just be for development work or one off pilots, but also for maintaining and developing their staff and supporting clients on a long-term basis. In some ways this is a broader issue for the Third Sector, with the tendency for funding to be short term being a long-term problem. Thus the concern was not openness, which was seen as positive, but openness without long-term support.

Tag cloud of participant responses in the Gathering Workshop

Figure 2: Tag cloud of participant responses to questions in the Gathering Workshop. OEPS CC-BY-NC-SA 2.0

The tag cloud is based on the comments on the big bits of paper on the tables.  It may appear that worries dominated hopes, however, going around the tables and in plenary people were more positive about the possibilities for them and for clients. They recognised that they needed to operate in this space in order to meet the needs of their clients in an increasingly digitised world. They were not approaching it from wide-eyed techno-utopianism, but recognised the challenges for them and their clients. Those challenges relate to open and online in a broader context, of how to support people into the digital world, and questions within the Third Sector more broadly around strategic change, and how to sustain activities. I think this is probably a question we need to ask ourselves in the OER/OEP community.  It is all very well having resource to make something open, but what about the resources to ensure it is used and that it remains useful, so asking how to enable things to be open, what openness enables, and how to ensure it is sustained.

Ronald MacIntyre and Pete Cannell

 

Resources:
If you retain, reuse, revise, remix or redistribute these then please tell us what you’ve done with them and share back any remixing or revisions.

Slideshare of the workshop

OEPS_workshop_worksheets_print_ready

OEPS_interactive_poster_print_ready

Storify: OEPS @ the Gathering 2017

 

 

“The Gathering”

“Hands at the Cuevas de las Manos “, Santa Cruz Province, Argentina Image Source: Mariano, https://en.wikipedia.org/wiki/Argentina#/media/File:SantaCruz-CuevaManos-P2210651b.jpg, (CC BY-SA 3.0)

“Hands at the Cuevas de las Manos “, Santa Cruz Province, Argentina Image Source: Mariano, https://en.wikipedia.org/wiki/Argentina#/media/File:SantaCruz-CuevaManos-P2210651b.jpg, (CC BY-SA 3.0)

OEPS will be attending the Scottish Council for Voluntary Organisations (SCVO) event “The Gathering” on the 22 and 23 of February 2017 with a stall (near the entrance) and a workshop on the 23 of February at 10 am. Why are we operating in this space, after all OEPS is an HE project isn’t it?  The short answer is many of OEPS key partnerships are with Third Sector organisations, and we have something to share about our experiences. Our starting point was research in widening participation which suggests the most effective way to draw someone distanced from learning into education is through partnerships with organisations they trust – see a recent OEPS post about Barriers to participation in online learning. So, we also have plenty to learn from attending.

Rather than reflect on OEPS interest, perhaps a more interesting thing to consider is why the Third Sector is operating in this space. When we consider the role of the Third Sector, we typically think about their role in filling gaps, the spaces left by the public and private sectors, structural holes often experienced most acutely by the most vulnerable in our society. Exclusion is experienced across a range of axes, and these can layer over and accentuate each other.  Our partners tell us education is one of these, and access to good quality free and open as a resource for educators and learners is vital.

We will share our experience of partnership working and using approaches informed by participatory design to develop approaches to engaging people in the design, production and use of OER. Partners from Parkinson’s UK and Scottish Union Learn will be on hand to share experiences. However, we are also aware our experiences are partial, a snapshot.  The workshop is an opportunity for us to share the issues but also to share the questions and learn together. In particular looking at what a future which assumes education and information is free and open look like for Third Sector organisation and for learners/clients they support.

We still have a few spaces left. You will need to register for “The Gathering”  (which is free) before being able to book the workshop.

We look forward to seeing you at the event.

Ronald Macintyre

OEPS Summer Newsletter out now!

It’s been a busy few months! To help keep you up to date with all the project’s activities and what we’ve been up to, we’ve just published our summer newsletter.

So what’s new?

Don’t delay, catch up with all the news and download your copy today!

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Photo credits: featured image is “All His” by Scottish Dream Photography and is licensed CC BY-NC-ND 2.0