Self-care: The Long Answer (Ack. HSJ)

Here is another item from the HSJ:

"There is often a Berlin Wall between formal and informal caring environments both in the NHS and in social care," he says [Alex Fox, Shared Lives Plus]. He argues that patient care needs to be de-institutionalised.
"If we are going to get anything from all the effort and heartache that has gone in to the NHS reforms, CCGs need to take a holistic view of a person, like good GPs do, and understand that a range of factors go in to someone's health and wellbeing and it is finding models that fit personalised and self-care."

Helen Mooney, (2012). The Long Answer, Health Service Journal supplement (Long term conditions). 28 June. p.1.

Staying with the vertical axis of Hodges' model there is something beyond the delineation of INDIVIDUAL and GROUP (POPULATION) that this axis performs. It bisects the horizon of external reality that is frequently differentiated into what is HUMANISTIC and what is often described as MECHANISTIC. If not these terms then the humanities and the sciences.

From a mental health perspective and taking the above reference to 'institution' literally we can reflect upon how the Victorians sought to standardise provision of care for the mentally ill with the asylums. This was a scientific and political solution to an interpersonal and social problem. Institutions continue to be disempowering, in physical and psychological care. In a way this Victorian solution is still ongoing. On the journey from institution, to community, to home, to self... there is still a long way to go.

The system created to the mechanistic right within the model was custodial. As far as society was concerned the people there were forgotten. A community within a community was re-created. The person, the individual was lost and we are still trying to find them. Progress has been made and can be mapped across Hodges' model. As one example how has the student nurse's learning experience changed over the decades?

That INDIVIDUAL-GROUP axis, the red line in the figure is the Berlin Wall that we are still trying to tear down.

There is another view on this which I'll save for the future.

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