Ethnographic Research in the Catalan Red Cross Telecare Service:

1. Ethnographic Research in the Catalan Red Cross Telecare Service: • A chance to rethink user-centred telecare services between social scientists and care deliverers.

2. Usability: a new requirement • The development of e-health and e-care services has been encouraged by the EU governments, at the same time that usability has turned into an important matter of concern among the developers of these kinds of services. • Usability is so important because telecare’s aim is to provide safety to vulnerable people while preserving their autonomy, but always in a very customisable way • The main goal is to produce a technology which functions as a natural extension of the user.

3. Wearing the pendant • Challenging usability MARIA (99 Y.O) ...if they need it, usually, they press the button of the pendant. What we have many times is that they don’t wear it. There are people very resistant to wear it. And this is something not very heavy, but users are resistant. Even when they are at home and nobody sees them. They leave it hanged on the bed, or behind the bedroom’s door. There are campaigns to encourage them to wear it because it is very important. “Take care, because if you fall down at home, then... What do you use it for, if you can’t reach the pendant?” It’s silly!! (Red Cross HTS volunteer)

4. User: No! (.) This gentleman comes a lot ((she laughs)) and tells me: ‘you are not wearing the pendant’. I say: ‘No, I don’t like to wear it’. • Volunteer: I tell her, ‘you have to wear it whenever you’re at home’. • U: Well • Interviewer 1: And, why don’t you wear the pendant? • U: I don’t know, I don’t know. I don’t know what’s wrong, but I don’t like it. Now, I’ve hung it…I have a crucifix on the wall behind my bed and I have the pendant there. I do like this ((stretches her arm)) and I touch it. ((laughs)) • I2: That is to say, you don’t like it because you don’t like to wear it: • I1: Because of aesthetics? Or [because] • I2: [Because of aesthetics] • I1: [Does it bother you?] • U: Not because of aesthetics! No. Because I know that it is something that has to do with... I don’t know… with illness. Or whatever. Doesn’t it? I don’t like to wear it. ((She laughs)) • I2: Right. • I1: That is to say, while you feel fine you prefer to go to the central-telephone and [press] • U: [yes, yes], that’s right. Yes. • I1: Or would you prefer making the pendant more…aesthetic. More…like a piece of jewellery. • U: It would be the same. The impression would be the same. • I1: Right: • I2: Right. • U: No, no. There are times that I really wear it, because…Do you know when I wear it? [When] • I2: [When?] • U: I’m climbing the stepladder • I2: Right • U: That’s when I wear it. • I1: When you see that there is danger. • U: [yes] • I2: That is, when you see that there is a possibility of falling down or/ • U: /If it is possible that I fall down, I wear it. • I2: But when you feel safe, then/ • U: /walking I’m safe. I can fall down, but I don’t ((she laughs))

5. a very specific and circumstantial aid for an autonomous but cautious user, • a technology for disabled people, which means, according to the user, that wearing the pendant means she is disabled, • or something totally useless for a resigned user who knows that is impossible to foresee what is only known by God • We are facing a more complex process than adjusting the technology to the user’s needs. • We are dealing with a process in which different definitions of the technology and of the user is at stake.

6. sonotone bastón the pendant becomes usable when... • it is embedded in different sorts of networks and new potential uses emerge have not necessarily been included in the design might emerge.

7. Usability critiques • are sometimes too focused on the user-technology relationship and tend to leave out the relationships with the family, the neighbours and the caregivers, which might affect its use • sometimes assume that any technological use depends on efficiency.

8. Towards an action-research methodology to study the development and implementation of telecare devices • Action-Research methodology in which the actors—from operators and volunteers to relatives, caregivers and users– are joined as participant-researchers might be an interesting and useful way of studying telecare technologies’ usability.

9. Three reasons for using action-research • usability not only depends on the adjustment between the object and the characteristics and necessities of the user, but mainly on how those different actors define the object, and the other way around • splitting apart research and intervention in this case is very difficult and futile, since the process of engaging the users, relatives, caregivers, operators, volunteers and technicians in a study concerning how they define a specific technology and how it gets embedded in their daily life, might be an instrument to negotiate those different definitions and look for a new one, perhaps much more common and productive. • we thought that action-research methodology could be a very useful tool in studying the development and implementation of care technologies because their use mainly depends on the existence of a dense and reliable social network

10. Changes in care • Changing gendered care roles • For me, it was really hard, I cried a lot. I .... because it seems like you’re neglecting him, like you’re abandoning him, that you actually are a bad daughter, you know? Just for going on holiday! But once you are on holiday, you think: ‘I’m not even having such a great time, am I? And he’s at home all alone!’ But yeah, it’s a change in your mindset that you have to make. I think it’s up to both of us. (daughter of a user with a heart condition) • If you don’t wear it I won’t go out tonight. Of course, since she wants me to go out and have a nice time, then she wears the pendant. So, when I was on holiday I asked her: ‘Mum, are you wearing the pendant?’ ‘Yes, yes, I’m wearing it.’ Just to keep an eye on her. But the problem is that she forgets to put it on. One day she forgot and she told me: ‘Oh! I knew that you were coming back in the evening so if I had fallen, you would have come and picked me up’. And I told her: it doesn’t work that way! (Daughter of a very elderly user)

11. Changing family role • Changing the notion of care • O1: It’s complicated. I don’t know... I guess it’s complicated because.... Maybe nobody shows them how the service works. So, the troubles we are seeing are... maybe because they are from South America and it might be hard to understand us. If they press the button and you try to ask them for information, they get really nervous. I’m very pragmatic, I rather prefer to directly speak with the user. It’s smoother. If the caregiver is acting as mediator, then it gets harder and more complicated. (...) • O2: Besides, they forget to do the mobility check more often than the users do, which is something that the caregiver must do if the user feels fine and there’s nothing wrong. • O4: Or they get very nervous and say things that are not real • O1: Or they exaggerate a lot

12. Summing up • a) The study must not focus just on users’ necessities, it must also encompass the appropriation process. • b) Action-research methodology would be a useful approach because it is necessary to involve all these actors in order to study the appropriation of care technologies and also to take part in this process to make the user’s social network stronger.