NW England: Greater Manchester AHSN Hackathon 'Young Carers'

Date: Thursday 31st July

Time: 8.30 – 17.00

Lunch and refreshments will be provided


On the 31st July GM AHSN invite you to an all-day hackathon focussed on developing solutions that can make a difference to the lives of young carers.

There are currently over 700,000 carers in the UK. In the addition to the difficulties of caring for a sick relative, many are placed at a disadvantage in terms of their academic and social lives. The hackathon is your opportunity to make an impact, test your skills and work collaboratively to help develop solutions to this often overlooked social problem. The event is open to everybody, regardless of experience, though we’re particularly looking for:

• Carers and anybody with experience of the challenges faced
• Software developers
• Web developers
• Designers/ UX experts
• Health and social care professionals
• Marketers
• Project managers
• Researcher
• Coders

The GM AHSN has worked with young carers to identify key challenge areas in:

• Support for epilepsy
• Alert systems for schools and offices
• Time management for young carers
• Social Networking for young carers

(Click here for more info on challenges)
The hackathon will bring together all the right people to help develop your idea in super quick time: You can meet and work with people with skills and experience from the healthcare and technology industries, all with the common goal of wanting to make a difference. The event will be attended by a group of young carers from the Manchester based charity Family Action, who will be acting as mentors and contributing to the development of your concepts.

Prizes

As a prize, the winning team will be rewarded with a day of free consultancy from Inventya, to help develop and commercialise your idea. Inventya is a science and technology commercialisation consultancy with an 80% success rate in helping early stage companies win funding for R&D and technology product development.


If you’d like more information, please contact sarah.dougan AT gmahsn.org

My source: @Stefan
 
[ I can't make it :( ]

Care pathways: 15 minutes on Monday - how far is that?

On Monday I have a quick visit for 15 minute slot on care pathways at an interprofessional study day for 2nd and 3rd year students.

After the short presentation I'll ask the question of what difference the students can make to the patient's care pathway. There may be value in continuing the 'journey' metaphor?

They can ensure the care pathway is well-documented (otherwise it doesn't exist, and travel on it never happened) they can check it is accessible (an achievable goal) and that it does not trip anyone up (we don't do - iatrogenic).

There are further tests: is it navigable, tried and tested, a safe (evidenced-based) route? As the student's contemplate a major step in their health career, we really need them to focus on the health career of the persons in their care.

[ There won't be time for this: but do we need to wait until the 'end' for the outcome and capturing that (feedback). Or can do we this verbally, incrementally (positive impact on quality)? ]

I could ask them all to stand and make like sign-posts, but for the risk of poked eyes. It's true though, sign-posting is an important job, but how we do that is another post (the value of self-discovery as learning).

Once medically fit the key thing should be checking the person's (not viewing them totally as patient) wayfaring skills.

OK, who took my care pathway?

Can they read the map (are they health literate)? Can they find a map? Do they have a stay-well, recovery and well-being ... compass (a conceptual framework, an app, care plan)? If there literally is no self-care pathway under the patient at present, then the student can help them and their carer if necessary to find or create this compass - across the required care domains.

THEN this person (potential future patient) can avoid having to step off their self-care pathway and onto the health care pathway. You see there's a risk and a cost in that particular transfer.




Image source: http://www.farlandgroup.com/customer-journey-mapping/

The Case for Information: Investment in patient information improves outcomes and reduces costs

A new Patient Information Forum (PiF) research report highlights how providing information to patients and their carers improves outcomes, reduces costs and gives people a better experience of care.

PiF commissioned research to identify the benefits of investing in health information. The project, which looked at over 300 studies, found that there are good business reasons to justify the investment of more time, money and training in health information provision and support. These include positive impacts on service use and costs, substantial capacity savings, and significant returns on investment by increasing shared decision-making, self-care and the self-management of long-term conditions.

To access the report please see:
http://www.pifonline.org.uk/the-case-for-information-investment-in-patient-information-improves-outcomes-and-reduces-costs/

My source: Irina Johnston, CHAIN Administrative Assistant

Call for papers: the science and practice of people-centred health systems

Cover: Health Policy and Planning

The journal Health Policy and Planning and the organizers of the Third Global Symposium on Health Systems Research [ next in 2014 ] are pleased to issue a call for papers for a special supplement on the theme of "The science and practice of people-centred health systems". The theme for the call is also the theme of the Symposium. Full text of the call.

People-centred health systems are founded on pro-people philosophies of social justice and equity, recognize the role of social exclusion and inequities as determinants of poor health, and can also actively work to address them. They consider the health needs and preferences of individuals, families and communities, and create the channels through which these can be articulated and realized. They also recognize and actively progress people’s rights to participate in and determine how health systems are organized, resources are allocated, and services are delivered.

The idea of people-centred health systems also encompasses the rights and needs of people who work in and for the health system in various roles - as carers, health workers, advocates, administrators, planners and researchers. It also recognizes that important decisions that determine health system performance at all levels are made by specific people (individuals and groups in the public and private sectors) - highlighting the importance of collecttive duties toward the advancement of health, and of identifying responsibility and ensuring accountability for health system outcomes. 

Finally, the concept of people-centred health systems also acknowledges that health systems operate in broader social, political and economic contexts that are of human creation, and the need to respond to all factors that affect health rather than focusing only on biomedically driven solutions.

Full manuscripts on the theme of “the science and practice of people centred health systems” should be submitted to Health Policy and Planning by 18 November 2013 through the submission link on the journal website (http://heapol.oxfordjournals.org/).  Original research articles as well as review papers are invited. Submissions that have a first-author who is a resident in a low and middle-income country are particularly encouraged.  Accepted papers will be published as a special journal supplement prior to the Symposium, which will take place in Cape Town, South Africa, 30 September - 3 October, 2014. 

The full text of the call contains suggested topics, details of the selection process and author information.

For further queries, contact Kabir Sheikh (kabir.sheikh AT phfi.org) or Michael Kent Ranson (ransonm AT who.int).

c/o HIFA2015

£150k NHS Innovation Challenge Prize for Dementia in collaboration with Janssen Healthcare Innovation

We would like to draw your attention to the following information. Please circulate as appropriate. Thank you.

 

NHS Innovation Challenge Prize for Dementia in collaboration with Janssen Healthcare Innovation

 

Prize fund: up to £150k

 

If you are working in partnership to deliver integrated care that’s making a difference to the lives of people with dementia, their carers and families – then enter the challenge and share your best practice.

 

Closing date: 4 September 2013

 

For more details please see: http://www.nhschallengeprizes.org/

-------------------------------------------------------------------------

 

Regards,

Irina Johnston

CHAIN Administrative Assistant

 

If you wish to publicise information on the CHAIN Network please email your request to: enquiries@chain-network.org.uk

 

CHAIN - Contact, Help, Advice and Information Network – is an online international network for people working in health and social care. For more information on CHAIN and joining the network please visit website: http://chain.ulcc.ac.uk/chain/index.html

Dementia Awareness Week - journal papers (still available 26th)

Definition: 

Awareness - something that must last beyond a week. For some people - carers and families - awareness is a living constant.

Dear list members 

(these papers appear to be still accessible - PJ).

In support of Dementia Awareness Week we are giving away free access to a selection of content from Emerald’s Health & Social Care Collection of journals on dementia and related conditions.

These papers help to raise awareness of the available research and practice issues involved in working with people with dementia. 

Well-being and dementia – how can it be achieved

Bob Woods

Promoting self-directed support for people living with dementia: overcoming the challenges

David Moore, Kirsty Jones

Support workers' knowledge about dementia: a vignette study

Daniel L. Herron, Helena M. Priest

Like these? View the full selection of free articles on our website

Best wishes

Laura

Laura Wilson

Editorial Assistant | Emerald Group Publishing Limited

My source: MHHE list

KT-EQUAL events: inc. Food and Nutrition in Later Life; Meeting the Needs of People Living with Dementia and their Carers ...

Dear KT-EQUAL supporters,

Hello. Here's an update about some of our activities and other news that may be of interest to you.

-----------------------------------------

Upcoming events programme
You are warmly invited to join our upcoming events:

------------------------------------------
Food and Nutrition in Later Life
------------------------------------------
When:    8 January 2013
Time:     9.30am - 16.15pm
Where:   University of Reading

The day features talks from experts, as well as an interactive "hands-on" showcase.  The event should be informative and fun, and provide an opportunity to meet and network with others who have personal or professional interests in food and nutrition for older people. The programme has been designed to appeal to a wide audience, including older adults, practitioners from health and social care, academic researchers, industry and charities.

Free to attend with lunch and refreshments included.

For further details and to book: http://kt-equal.org.uk/calendar/96/60-Nutrition-in-Older-Age

------------------------------------------
Thinking outside the box - meeting the needs of people living with dementia and their carers
------------------------------------------
When:    24 January 2013
Time:     9.00am - 16.45pm
Where:   The Forum, St James Parade, Bath, BA1 1UG

Dementia is a major challenge facing our health and social services over the next 20 years.  This has now been recognised by the government and significant resources are being directed towards early diagnosis, new treatments and management of people with dementia.

This funding will only be effective if we can develop news ways of supporting and managing people with dementia and there carers.  This will require a multidisciplinary team approach to problem solving and service delivery.  Health and Social Care Practitioners are familiar with the concept of multidisciplinary team working but often lack insights into dynamics of group working. We need to ensure that the interventions are effective and consider outcome measures that are appropriate for a long term neurodegenerative condition that are appropriate for patients and carers.

This event aims:

- to help researchers, health and social care professionals to think differently about meeting the needs of people who are living with dementia
- to consider the range of outcome measures that might be used to assess the benefit of an intervention
- to make researchers aware of the challenges and opportunities of multidisciplinary working
- to inform new researchers of the needs of people with dementia
- to trigger ideas for new research and provide a forum where participants can develop potential proposals

Please note that this event has limited places to ensure that representatives from several disciplines have the opportunity to participate.

Free to attend with lunch and refreshments included.

For further details and to register interest: http://kt-equal.org.uk/calendar/96/61-Thinking-outside-the-box-meeting-the-needs-of-people-living-with-dementia-and-their-carers

------------------------------------------
Design for Living in Later Life
------------------------------------------
When:    31 January 2013
Time:     10.00am - 16.30pm
Where:   The Open University, Milton Keynes

This event brings together the latest research ideas and developments about creating lifetime environments for people of all ages.

Free to attend with lunch and refreshments included.

For further details and to book: http://kt-equal.org.uk/calendar/96/54-Design-for-Living-in-Later-Life

------------------------------------------
Keeping safe and maintaining independence: older people and sight loss
------------------------------------------
When:    7 February 2013
Time:     9.30am - 15.45pm
Where:   Weetwood Hall Conference Centre and Hotel, Otley Road, Leeds, LS16 5PS

This workshop event is concerned with sight loss in later life and how we can enable people to live a quality life despite the difficulties that arise from diminished vision.

This event aims to raise awareness of sight loss and its impact and to increase knowledge and understanding of how to support people with sight loss. The programme will showcase new developments in research and practice that have the potential to inform practitioners.

Free to attend with lunch and refreshments included.

For further details and to book: http://kt-equal.org.uk/calendar/96/62-Keeping-safe-and-maintaining-independence-older-people-and-sight-loss

------------------------------------------

New posts on the KT-EQUAL blog which may be of interest to you:

Housing LIN newsletter – Housing with Care Matters, December 2012

This reflects back on some of the successes the Housing Learning and Improvement Network (LIN) had in 2012, including the recent 2nd annual conference attended by over 300 people.

The conference also saw Norman Lamb, Minister for Care and Support Services, announce an additional £40m in this financial year for Disabled Facilities Grants. Details of this and a number of other recent policy and funding announcements to do with housing, care and support are featured in this end of year newsletter along with information on new learning resources from the Housing LIN, important new publications such as HAPPI2, calls for information, and details of Housing LIN forthcoming regional meetings and events.

New dementia website launched: dementiakt.ca

The Canadian Dementia Knowledge Translation Network (CDKTN) and the National Core for Neuroethics are pleased to announce the launch of the online Dementia Knowledge Translation (KT) Learning Centre. This website is targeted towards new and established dementia researchers engaged in KT.

------------------------------------------

Invitation to take part in a study

I am sending some details passed onto us by one of our members, based at TRL:

We are currently undertaking a European study regarding older road users and what different countries do about supporting mobility. The aim of our project is to investigate travel patterns and road safety amongst older road users across Europe, see how they are changing and look at what work is being undertaken to support improving mobility. As part of this we are looking to undertake interviews with possible major players as to what they are doing. Would anyone be interested in taking part in a telephone interview with one of our researchers on this topic?

If you are interested please contact Jenny Stannard, Principal Project Manager and Road Risk Consultant.
email: jstannard@trl.co.uk

It would be helpful if you would contact Jenny by 18 January 2013 if you would like to take part.

------------------------------------------

Recent Highlights

A new BBC film highlights the work of our i-design team in Cambridge: how do older people use technology? http://www.bbc.co.uk/news/technology-20664470

Falling off the Bandwagon: Sustaining digital engagement by older people - a series of consultation events have recently been undertaken exploring potential solutions to the challenges faced by older IT users. A major consultation event took place at St Georges House, Windsor focusing on solutions and how to implement them.  http://www.stgeorgeshouse.org/consultations/social-and-ethical-consultations/recent-consultations/

We were delighted that The Princess Royal presented a keynote address at our recent 'Showcase world class occupational therapy research to meet the needs of an ageing population' event. This event took place at the College of Occupational Therapists where The Princess Royal is Patron. It was a unique opportunity to bring together leading experts to discuss ways of meeting the challenges of an ageing population. http://blog.kt-equal.org.uk/

------------------------------------------

I hope that this is helpful. It's been a pleasure to meet with some of you over the course of this year - look forward to further developments in 2013. If you have any queries and or comments/suggestions please do not hesitate to contact me.

As this eventful year draws to a close, we would like to thank you for all your continued support and extend seasons greetings.  All the very best for 2013.

Bangar
--------
S Bangar
KT-EQUAL Research Co-ordinator
School of Health and Related Research (ScHARR)
University of Sheffield
Regent Court, 30 Regent Street
Sheffield  S1 4DA

http://www.equal.ac.uk/

*Please note: I work 4 days each week.

_______________________________________________
Sparc-network mailing list <Sparc-network@lists.reading.ac.uk> (... and my source)
http://www.lists.rdg.ac.uk/mailman/listinfo/sparc-network

RFID Tags Track Possible Outbreak Pathways in the Hospital

There is no substitute for providing evidence that confirms many common-sense assumptions about what happens in the clinical environment that is the ward - in this case paediatrics.

See the links below for details and explanation.

My source: John Matson. Graphic Science. Scientific American, November 2012, page 76.
See also the original PLoS ONE paper.

The Bigger Picture - Hockney: Hodges' model 4 dynamic perspectives

In the decades to follow the patient, the carer, the health and social care professional must all be dynamic. All must be capable of movement - that is taking in several perspectives. As always composition is vital. So is choreography. As Hockney indicates the picture comprises both ordinary perspective and reverse perspective.


If static, found only for a moment: an assessment, plan, evaluation. A snapshot. Then moving a-gain.

Ever seeking the dynamic.
 
Acknowledgement: David Hockney


My source:
'The mass media has lost its perspective'.
David Hockney, The Financial Times, Page 11, October 27-28, 2012 

Image source:
http://www.tumblr.com/tagged/a-bigger-picture

Additional post:
http://hodges-model.blogspot.co.uk/2012/01/bigger-picture-david-hockney-ra.html

SCIE Research briefing 43: Effective supervision in social work and social care

This research briefing provides an overview of the evidence concerning the value of supervision in supporting the practice of social care and social work. It is relevant to both children’s and adult social care services and includes a consideration of supervision in integrated, multi-professional teams. While the focus is on social work and social care, some of the research reviewed includes participants from other professions such as nursing and psychology.

The briefing covers evidence on the use of different models of supervision and outcomes for workers, employers, service users and carers. It considers evidence on the costs of supervision and concludes with implications for policy-makers, practitioners, organisations, service users, carers and researchers.

Download here: 
http://www.scie.org.uk/publications/briefings/briefing43/

My source: Jill Anderson via MHHE list

End of Life Care (Pathways), Nursing and Thresholds

There is a controversy (Telegraph) that has been growing for some time, concerning the Liverpool Care Pathway for end of life care. This is a very demanding and yet rewarding aspect of nursing. I have experience of end of life nursing care in a non-specialist capacity, having worked on wards for older adults and being involved with people who have mental health and life-threatening physical health problems.

It pains me greatly not just as a scouser that something with 'Liverpool' in it should become a cause of distress, a center for debate and review. Is the pathway green and shady? Is it comprised of stepping stones, with room for two, and with time granted for your next step? Or is there a danger in some instances the path can become tarmac clad, without the succor of a services stop for basic sustenance? Can a pathway become a motorway? What does that sign say? "DON'T HOG THE MIDDLE LANE!"

What pains me seriously is that what can be a invaluable, evidenced based palliative care resource can be undermined due to the complexity of the generic and palliative care situation.

If we truly practice person-centered care then there are no care pathways.

Or, to put it another way: there are as many care pathways as there are patients and carers.

Whether you believe in social medicine, or private; whether you are laissez-faire, or leave such matters to a higher power there is no escaping the need for organisation - for order.

The mix and concentration of people, knowledge, resources and time dictates that tasks, roles and processes be delineated and assigned. We need to assure a given level of quality, and to predict things, not everything is as difficult as the weather: or death. Pathways can assist in specific contexts.

Is there scope for personalisation on a pathway? ...

Steps and pace can vary and to the left and right of center. There are many pathways though: some valid - evidenced, award winning; while others might be broad, narrow, twisted - to become a disorientating ethical loop...

Being placed on a pathway denotes a decision point, a threshold. We need to remember in all fields of health and social care practice that there are multiple thresholds to be taken into account, communicated effectively and revisited:

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

'me' - existence, resilience, assets, personhood, ethics, personal values, mood, personalised care, understanding of treatment, communication skills, self-expression, loss, orientation, observation, distress, psychological assessment, sedation, beliefs, choices, :theology PURPOSE	'me' - existence, feeding, nutrition, fluids,  evidence base, Liverpool care pathway, quality of life measures, referral thresholds, prediction, resilience, reductive - holistic assessment, medication, distance, where: home-hospital-hospice? pain management, decision locale, specialism, basic nursing care, resilience PROCESS
memories, good-byes, love, compassion, carer under stress, reassurance, counselling skills, meetings with family, empathy and rapport, patient and relative engagement, life history, relative's recognition that loved one is dying, care strategies,  patient experts, patient - carer experience, communities of PRACTICE	consent, advocacy, mental capacity,  integrated working, effectiveness, independent autonomy, service access, bed availability, health & nursing in the media, scope of nursing, scope of medicine, law, medicolegal issues, whistleblowing, complaints, formal review, appeals, organisation, argumentation, professionalism, ageism, POLICY (re-PURPOSED)

The relative position of concepts above does not indicate priority.

"The LCP is not the answer to all our needs for care of the dying but is a step in the right direction."

Marie Curie Palliative Care Institute
Liverpool Care Pathway for the Dying Patient (LCP)

IPONS 2012 Leeds: Dementia and Robots - SF and Isaac Asimov ruined me, what about you?

Just before I disappear for 11 days holiday...

In the 1970s I could go into (the old) Smiths in Wigan with £1 and buy three paperbacks. I built quite an SF library that includes Heinlin, Clarke, Smith, Aldiss, Van Vogt, and Asimov, all a bit musty now and boxed.

Robots featured in many of those old books and Issac Asimov in particular with his Three Laws of Robotics. As a result I've tended to take robots for granted, not just in fiction and film but health care too. Big mistake!

It's almost as if every decade we should watch Blade Runner again and reflect. Take our bearings, triangulating them with these other things-beings. ...

The demographic time bomb is proving quite an incentive for developments in leading edge robotics. 

One of the IPONS keynotes with Dr Susan Barnes and Dr Theodore Metzler presented Three Dialogues Concerning Robots in Elder Care.

We were introduced to general developments including Asimo, which I remember seeing on QI:



- and a specific nursing example:


Through their three dialogues ranging through the developments of artificial intelligence and consciousness, Drs Barnes and Metzler also introduced Paro a Therapeutic Robot, which is modeled after a baby harp seal. For many years dolls of various sorts have been used in residential and nursing homes to provide comfort for selected residents. This is an example of personalised care. I know because there are times when it has seemed not quite right. The paradox is that this arises not necessarily from the client's response to the doll, but sometimes that of the other residents. The response of relatives and visitors can also vary, especially when efforts are ongoing to find ways to help someone settle. Seeing - and hearing someone who is agitated is distressing for all.

Needless to say the keynote prompted many robot related questions. Are we deceiving people who are cognitively impaired? Is this a variation of covert administration of medicine? It was later afternoon 1500 hours or thereabouts, which had me thinking about the phenomena of sundowning. A time of day when some residents can feel they need to be elsewhere. Former responsibilities and roles come back to the fore with what can be chaotic results.

This excellent keynote also made me think about how care needs are matched to technologies. What is the ethical spectrum of telecare, of remote care, of robotics (surgical, locomotion, dementia care)?

A person living with dementia at home may benefit from have a robotic carer / assistant who can respond to the repetitive questions that often follow. A robot is not going to get frustrated, angry (Asimov's Laws?) by such behaviour, unless it were conscious?

On the other hand don't we need the frustration of a family member, a carer, a human to alert society at large to this local crisis - situation? What are the reporting capabilities of the robot system?

I realised many years ago the notion of windows of opportunity in terms of supporting independence - delivering care. There may be an optimum period in a person's health career to introduce day care, respite care, care at home, a robot ...?

Nursing (like me) needs to wake up.

The next twenty - thirty years are going to be a real challenge in all sorts of ways and for many reasons. Throughout that time and beyond a good dose of philosophical thought will be the order of the day. IPONS got me thinking anew: perhaps you too? The society are planning changes to the website, membership and journal options.

Back at month end.
P.S. ICN abstract submitted. Prospect of a public health presentation next month.

Your help needed to develop an instrument to measure ‘e-health literacy’

Researchers from the University of Copenhagen, Denmark and Deakin University, Australia are developing an instrument to measure ‘e-health literacy’ in current and future users of healthcare.

To develop this instrument they are undertaking a comprehensive consultation with a wide range of stakeholders. This includes the perspective of users of the healthcare system, as well as the perspective of ‘experts’, i.e. researchers, healthcare professionals, managers and policymakers.

They are looking for help with this task to ensure that the research is comprehensive, asking for your views and observations on what a person needs to be able to do in order to use digital health services (e-health). To do this there is an online survey, which takes about 3 to 5 minutes to complete.

Please complete the survey no later than Wednesday, 1 August 2012. The researchers will collate statements from all respondents over the next month or so. In a second e-mail, they will ask you to group and rank individual statements in terms of importance.

The output will be a comprehensive map of the key elements of e-health literacy. This information will be integrated with data generated from workshops with both health care users and professionals. The final goal is the production of an internationally relevant tool to measure e-health literacy.

If you wish to receive a copy of the results of this research, please indicate this on the last page of the survey.

Please follow this link to the survey:www.survey-xact.dk/LinkCollector?key=DCXCFD3F3N36

My source: Patient Information Forum via twitter

Reflections on: Designing for Self-Care - the home-clinic difference

As much as I might like to I will not be able to attend Copenhagen and the workshop details of which I posted yesterday. Reading the call for papers prompted the following reflections - many of which may not be relevant to the actual workshop content, but hopefully help illustrate Hodges' model:

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

literacy - health literacy, cognitive access, insight, memory, education, communication, attitudes, motivation*, beliefs, BEFORE-AFTER holistic measures, mental health, mood, context, therapeutic modalities, self-recording, person-al purposes - process reconciliation, coding / classification, self data capture, expectations, general health perception, sleep, leisure, independence level (self-efficacy), individual 'clinic' need / attendance, rating of existing clinical relationships, DOO - (presence of) differences of opinion*

physical interface modalities: touch, gesture, eye movement, video interviews; clinical diagnoses (primary), observations, assessment-measures, data capture, medications, lab tests, pain, 'distances' (several not just home-clinic); treatment/drugs - training, mobility (room count, vistas), info prescription, other media - learning materials, self-care tasks (granularity, number, complexity, ...), clinic-al purposes - process reconciliation, evidenced interventions, coding / classification, home adaptations?, experience of telecare? mobile apps? home IT / comms, chronological:pathological age definitions: long term- / chronic

life story, narrative medicine, quality of life, care history - duration / exposure to care systems, domestic relationships, primary care / nursing (multidisciplinary care) relationships, perceived integration of care, social network, access to day care / respite care, definitions - shared vocabulary, self-care folksonomy? (virtual) community creation (outcomes)? affordances, meaning of 'clinic' attendance, 'CKO-X' Carer's Knowledge of

autonomy, power in the home: My space?, service interfaces, available specialist services, responsiveness, support, best interests, privacy, budgets (self), protocol - referrals, political emphasis: physical-mental health? predefined benefits, economic impacts, savings, policy reach, implications for commissioning

As the workshop concerns home - clinic difference and designing for self-care this prompted me to a more detailed consideration of the 'distances' involved. Not just in the physical geographical sense of home-clinic travel (car, walking, public transport, disabled transport) but when last the citizen (patient) visited various locations.

There are many other dimensions of course ... the final context reduces the above to something manageable.

1st Int. Workshop on Designing for Self-Care: Acknowledging the home-clinic difference

Hi,
We invite position papers and works-in-progress papers for the first international workshop on "Designing for self-care: Acknowledging the home-clinic difference" to be held alongside NordiCHI on 14th October, at the IT-University of Copenhagen.

Kindly consider submitting your work, and / or share with your network.

Regards,
Naveen Bagalkot

 ----------------------------- Call For Papers -----------------------------

Image source: The CfP website

Workshop theme: Supporting the movement of care across boundaries

Increasingly successful healthcare involves moving the care activities across the clinic-home boundaries. The field of HCI has increasingly explored ways to design digital technological tools to support this movement of care beyond the boundaries of a clinic.

However, the clinic and the home offer different settings, shaping the care activities in different ways. Acknowledging this difference of settings, opens up the space for various positions that designers can take for the design for self-care. We identify three key positions:

• Home as a place for caring: A focus on supporting the citizens to perform self-care activities at home that may (or may not) involve a larger network of family, friends, home care nurses, volunteers and home care workers.
• Clinic as a place for caring: A focus on supporting the care-givers at the clinic to prescribe home-based care activities to the citizens, and monitor how these are being complied with.
• Moving across the boundaries: A focus on supporting the citizens to move across the clinic-home boundaries, bringing with them materials from the clinic to home, and sharing the self-care activities from home with their care-givers at the clinic.

We offer these three positions as a starting point to invite researchers and practitioners working in this space of designing digital technological tools for self-care to become part of the workshop discourse. In particular we invite them to submit their positions in a 4-page ACM SIGCHI extended abstract format, based on their own empirical experiences and / or theoretical deliberations.

  

Workshop goals

• To bring together researchers from HCI and interaction design, and professional caregivers, to discuss and outline the challenges and promises posed by the different individual settings for care, and moving across these settings.
• To share insights from a range of cases about the challenges and successful strategies in designing digital technology for self-care.
• To explore promising design strategies and approaches for dealing with the challenges and promises posed by the different settings of care.

Workshop Outcomes

All accepted papers should bring a poster representing their paper to the workshop. This will be used during the workshop and its discussions. While shorter presentation of each paper will take place, the focus will be on more interactive sessions where the participants will interview each other, group work and plenum discussions. The workshop aims to share current work, methods, challenges and insights when working with, or designing for, home-based care.

  

Proceedings

The workshop will produce its proceedings in the form of an online database, which will be open to access by all interested researchers, practitioners and students. We are also looking into options to publish the proceedings with an ISBN number so that it is publicly available, and the possibility to make a journal special issue after the workshop. The proceedings will include:

• The call for position papers, which highlights the motivations and the theme of the workshop.
• The accepted position papers, and the respective posters.
• The minutes of the plenary discussions and the summary of the group work.

Submission format

Maximum four pages in ACM SIGCHI extended abstract format.

  

Contact details

Email the position papers to: rehabws2012 (at) yahoo.com

More details can be found on: http://users-cs.au.dk/gronvall/nordichi_rehab2012/index.html

106? No! That's not the meaning of 'personalised' care [I]

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Person-alised care c/o Andrea, Jamal, Leila, Kareem, Nada, Cassie, Graham, Addy, Gizela, Sandra, Kate, Tony, Em, ...	Diagnosis - dementia, confusion, agitation Care needs include: personal hygiene, dressing, washing ...
Carer - support relationship building trust, empathy, rapport...	106 Policy, Governance, Audit, Outcomes, Feedback, Commissioning, ...

What is the meaning of continuity?

BBC News: Dementia patient 'had 106 carers'.

States of mind and policy [I]: 25% of hospital beds...

The repeated things that some people say, what does that denote?

The repeated things that other people say, what does that demonstrate?

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

In which care domain does the Person living with dementia reside?	1 : 4 - 25% of occupied beds [ diagnosis? ]
... and what of their carers... with their expertise?	there is a strategy - yet more hospital champions are needed and training.

My source:
BBC Radio 4 & RCN Students mail list

Student placements and public engagement - over the years

Mentoring student nurses has always been and remains a non-trivial professional obligation. It is something that I have always enjoyed. I make a point of not wittering on and on about h2cm - well maybe a little :) . To save the student's patience and assure my time it is good to ensure a well-rounded placement.

Over the years I've engaged in community service and research projects so looking to the humanistic domains comes naturally. It's been quite interesting watching the various efforts the health sector has made to engage the public. There's no imperative, but I make a point of highlighting the possible learning to be had in contacting the local public involvement and engagement people. Students have found this to be quite enlightening. Encounters with the Community Health Council [CHC] especially so, although that seems a long time ago now.

The Health Service Journal (still catching up) reminded me of all this in the summer, c/o Calkin & West, 4 August 2011 pp. 4-5. This news item spanned my whole career outlining the history of such bodies:

• Community Health Councils: 1974 - 2003
• Patient and Public Involvement Forums 2003 - 2008
• Local Involvement Networks 2008 - 2012
• HealthWatch 2012 - ?

I even remember the demise of the CHC being reported. Actually no, correct that: I remember the report of the CHC's teeth being taken out before their end. As you look at the timeline represented above it seems to suggest either less stability, or less significance has set in; maybe both. The title of the above piece reads: Plans for engagement are 'insulting'.

Whether or not the CHC ever had sharp canines (with an extra full-moon glisten) and a bite force like a croc is something for the archaeologists to check. One thing for sure, it seems subsequent bodies have no need of dental check-ups, being sans teeth.

Working in the community it was heartening to see the CHC doing its work locally. I also read recently (HSJ I'm sure) how public involvement was finally enshrined in the The National Health Service Act 2006. So you see how progressive the CHC was. It is a great shame this momentum cannot be maintained - for reasons we'll return to in 2012.

For now, as students enter their third year I think it helps to bring life to the POLITICAL care domain. It matters. This ongoing issue is central to health services provision, planning, innovation and the commons ...

Carer's Rights Day ('Care' a concept going global)

I do wish I had time to update the intro pages which can be accessed on the h2cm homepage. I've assigned the SOCIOLOGY care (knowledge) domains intro to the public and this includes carers.

Today is Carers Rights Day.

In Hodges' model the carer is closer to the policy maker than the 'patient', 'client' - person they care for. This does not make protecting carer's rights any easier. This conceptual proximity to the powers-that-be does not reduce the need for an amplified voice. The focus for tomorrow is Money Matters.

The significant realization many years ago was that carer's actually span all ages. What I have learned over the past two years in my role is that even when a family member goes into residential care, the worry, the caring does not stop.

This past July I heard last minute (dinner time) about Disability Awareness Day which was held locally in Warrington, Cheshire. It was a great day and for people in the NW - and beyond - make a date for 2012 15th July.

As to 'care' going global more to follow ...