frånvaro är också närvaro

Una en rosa La Seu

“I know different people have very different ways of understanding illness… Please help me understand how you see things.”

Anthropologist Arthur Kleinman suggested that by exploring the explanatory model of illness we can better understand our patients and families, in effect making sense, out of nonsense. To understand others, ask What, Why, How, and Who questions:

• What do you think has caused your problems?
• Why do you think it started when it did?
• What do you think your sickness does to you?
• How severe is your sickness? Will it have a long or short course?
• What kind of treatment do you think you should receive?
• What are the most important results you hope to receive from this treatment?
• What are the chief problems your sickness has caused for you?
• What do you fear most about your sickness?

Empathic listening is a good starting point to elicit patient stories and it gives good grounds for the next two steps: interpretation and translation.

 

We can only take or leave the healthcare the CF center offer us

Here is an application to my reality (as a CF parent interested in the works of Richard Normann around co-production) to the article by Gail Wilson (Wilson, Gail (1994). Co production and self-care : new approaches to managing community care services for older people [online]. London: LSE Research Online.) Citations are from this paper by Wilson.

We can only take or leave the healthcare the CF center offer us. The CF care in Sweden is teambased, but it is operated within the bureaucratic model of organisation at the Karolinska Universty Hospital in Huddinge just outside Stockholm

Consumer orientation might be a good way to guide healthcare towards our needs, but still it is the same type of collaboration that is offered us. Take it or leave it. Competition and market orientation does not affect this. Our experience from this mainly in the competitive primary care services offered in Stockholm and Lidingö.

Look closer at the theories of co-production in relation to the Stockholm CF Center that we belong to and the possibility to reshape care here! Look closer at the relationship between the co-production of care of children with CF and self care by us parents!

“In human service agencies co-production is a way of theorising the division of labour between patients and professionals or between formal and informal carers. In this paper the emphasis is on the division between professionals and frail elders who live in the community. One key characteristic of a service industry is that consumption involves a range of activities by the consumer, or user, as well as by the provider (Sasser, Olsen and Wyck, 1978; Normann, 1991).”

For example, care cannot be delivered to my daughter who has CF unless we medicate and do inhalation with exericises at home, learn new breathing techniques, take care of equipment, make sure we get what we need from the pharmacy and eventually attend monthly and yearly controls for evaluations and tests. On the other hand, we could never do without the professional CF care. Since my daughter is only eight, it is a necessity that we engage in these activities.

While co-production in terms of this (team)work to be performed is recognised and much cherished in the public discussions on the future of healthcare, the implications on the delivery organisations have not been discussed in any impressive way, as we do more and more at home (much thanks to the fact that we get better and better).

“The model of independent firm competing with others to deliver a unique and defined product is clearly unsatisfactory but the widget has taken a remarkable hold over management education.”

“The model is one of the manager with a defined span of control operating within a single clearly bounded organisation. However recent work indicates that managers who have anything to do with community services (including hospital discharge) find themselves managing services which depend on the input of other professionals and other agencies (Dockrell and Wilson, forthcoming).”

In the average CF family, we work around two hours per day, every day, 365 days per year, to do the things that need to be done to live with cystic fibrosis. This amounts to at least 700 hours per year. During the seven and a half years we have lived with CF in our family, we have spent at least 5,000 hours. The 220 CF patients at the Stockholm CF center have spent far more than one million man hours during this period!

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cont’d

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Ice and steam

Sonia made it quite clear today answering my Qs.

Q: Is ice water?

A: Yes.

Q: Is water ice?

A: Yes.

Q: Is steam water?

A: Yes.

Q: Is ice steam?

A: No.

 

Postmodern Self exists in a wilderness of mirrors

Some fun from Rural Sociology; University of Missouri Columbia

 

 

 

While culture cannot specify the actual working details of the self, it does provide a broad outline for the possibilities“

Identity

• Self Concept            Ideas and feelings about ourselves
• Social Identity          “Looking Glass Self” – reflection of how we perceive others see us
• Ideal Self                   What we ought to be (self-actualization or conformity to roles)

 

• Postmodern Self  exists in a wilderness of mirrors – self concept is reflexive; social self – reflection of context and situation; ideal “mirror on the wall … fairest of them all”
• Self Esteem – difference between Self Concept and Ideal Self
• Western phenomena that individual self exists outside the collective social group
• Identity is contextual; therefore; our social identity lives in a wilderness of mirrors

 

 

 

 

You do not have money to learn our language

Today, a eight-year-old boy on the tram asked me: “what do you work with?”. I said I work with helping us grown-ups to better understand what children need and also helping grown-ups that sometimes can not take care of their children. I said: “you know, it is difficult for us grown-ups to understand children”. He said: “yes, I know”. I said: “do you know why it is this way?”. He said: “it is because you do not have money enough to learn our language”. Then after some thoughts, he reflected: “and I also think that the French and the Italian should learn how to speak English”.

Patient interfaces as border objects

Thinking about patient interfaces as border objects.

 

The mutually constitutive nature of context and activity, in relation to collective learning, knowing and understanding. Efforts to engineer uniformity in teams’ performance are unlikely to succeed across contexts.

“Teams appeared to agree on the most likely problem their patient faced and what would be required in order to deal with it. However, the ways in which this might be achieved revealed substantial differences in activity across the three teams. Further analysis of dissimilarities in team account of activity highlighted emergent differences in relation to the objects used to mediate their activity. In other words, although teams talked about arranging ambulances, admitting the patient to hospital, or trying to help her remain in her own home through the mobilisation of social work services, it appeared that these things meant something different for each of the three teams. Detailed analysis of teams’ discussions, in light of other interview, observational and documentary data, enabled further exploration of these emergent differences. The meanings which teams attributed to these mediating means were related to the way these things were used and to the specific cultural, historical and social characteristics of each primary care team’s activity. Activity thus shaped and was shaped by context, which in turn shaped the content of learning. The way in which meaning was understood was therefore also inherently contextual.

The focus on object-oriented activity revealed the presence of other overlapping and interdependent teams or activity systems (eg. social work and policy makers). Each primary care team’s activity was related to the exact articulation between these overlapping teams. The caveats, contradictions and local implications related to strategic policy initiatives as they were filtered and translated by each primary care team emerged in collective discussion of object-oriented activity. Therefore, although it may have initially have seemed that each primary care team was doing the same thing differently, it became clear that activity differed in similarly different ways across the three primary care teams, in relation to the inherently contextual activities of other, linked, teams in other areas of healthcare, in social work, and at policy level. These linkages between interdependent activity systems revealed the co- configuration of “superordinate objects” (Blackler & Regan, 2006b), such as organising to meet the healthcare needs of populations, and the central importance of meaning in relation to knowing and learning within such activities.”

Source: GreigEGOSprecoll2009 : Meaning attribution in inter-organisational, inter-disciplinary work groups – implications of context for organisational learning and knowledge transfer.

Influence network mapping

 

Challenges and rationale of Net-Map
Power is the determinant of development processes, especially in land and water governance settings.
R. Cleveringa 2007, pers. comm.

Resonance – a matter of time more than pitch

Chimes is about creating a grounding chord out of which  each and every tone can emerge independently. Today, listening to my son playing his Bebot, made me think about resonance again. And now, I am thinking about the reverb and time, that resonance in people about people in the Buberesque meeting might be very much about time, even less than pitch?