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While transitioning through the course of CCCs and digital health experiences, we must ensure that a person does not become defined as a ‘disease’ or ‘patient’ or be ‘stolen’ by technology

If the relevant information is communicated appropriately, people with CCCs living in a rural community can play a central role in communicating and understanding the causes of their illness, protecting their health and taking appropriate actions, choosing appropriate treatments for acute episodes of ill health, and in the everyday management of their CCCs. In context, ensuring that each healthcare encounter is communicated appropriately requires the experience of and engagement in equal, trust-centred relationships between healthcare users and providers, each accepting the other’s responsibility and ability to:

 process information and react to changes in information;

 establish nonlinear interdependencies with multiple care providers (including

nonverbal communication);

 create order in a system without a clear hierarchical direction;

 allowthe environment to influence each other’s decisions and development.

Each partner in the research community required ongoing support from more than four healthcare providers. Most partners described themselves as their disease: I’m diabetic, asthmatic (CH1), rather than as a person living with a disease, e.g., ‘I have diabetes and asthma’, or by the number and frequency of healthcare appointments that they have to attend:

I got the [CCCs] nurse to make an appointment in [Town] next Thursday… straight after one another all at the [hospital]. I haven’t had my strength and balance test from a physio for a while so I’m doing the whole lot (O1).

This is because healthcare provision has communicated paternalistically with them as patients or referred to them in silos of disease. People living with CCCs make lifestyle compromises because of their inability or unavailability to access health, social, recreational, physical, and cognitive stimulation and the potential of burdening others. Those who cannot, or require additional support to, perform conventional tasks and social obligations lose the capacity and motivation needed to maintain their established lifestyle. Without the development of an equally valued lifestyle, there is a possibility of a decline in physical and psychological health and a change in identity: they accept being defined and communicated with as a ‘patient’.

Their experience of MyHR involved and motivated the people living with CCCs to resume or assume personal responsibility, engage, recognise, and question their role in the management of their multiple CCCs, and disclose their concerns. Engaging with MyHR provided the basis for a longitudinal SDHR, a personal shared health summary of their multiple CCCs. Engaging with MyHR exposed their capability and vulnerability. The sharing of information identified resilience and the potential to build resilience, and the capacity to communicate and to reduce their overall burden of physical and psychological health issues.

Using digital technology allows a person who is compromised by their reduced ability to verbally communicate or to remain socially independent beyond the home environment to remain involved and to build alternative social communities and family communication networks. Those who struggle with digital technology, partly because of their CCCs but in most cases because of their fear of inability or failure, require support to become engaged and empowered. If it is communicated in a supportive and relevant way, digital technology can emphasise doing rather than being and provide an opportunity to be personally responsible, engaged and integrated with their healthcare provision.

However, those who use and value digital technology as their only source of family and community communication and socialisation may risk social isolation. Their personality may become defined by how they engage with their digital community or family, a ‘like’ or a ‘nice’; they lose contact with and the skills required to engage in their real world. Their ideas form and are confirmed by what they read, rather than being endorsed by what they say, feel, see, smell, or touch. They become defined by how they engage with digital technology:

I’m not talking to people as much, I feel I’m talking into myself … I just click like and type nice as long as they know that I’m there taking part (O1).

People living with CCCs in a rural community play an important role in understanding the causes of their illness, protecting their health and taking appropriate action, choosing appropriate treatments for acute episodes of ill health, and managing their chronic illness. These roles must be recognised and supported to ensure that a person does not become defined as a ‘disease’ or ‘patient’ or as ‘stolen’ by technology. Healthcare providers can ensure that, wherever possible, people living with CCCs, who are the most likely healthcare users, are involved in communications and making informed decisions about their healthcare. The partners believed that what people living with CCCs want most of all is relevant, quality, healthcare provision and that information is available at specific transition stages. They want:

 communication whereby they can express their experience and emotions;

 to engage with the process to increase their understanding and knowledge of everything involved in the ongoing transition;

 to find the path that allows them to regain some order in their lives;

 to learn the skills to allow them to work independently through situations as they arise in the future.

Mainstream clinical information and facts about CCCs are not always appropriate to everyday living and the management of CCCs. Of more interest to those living with CCCs are treatment options, factors for success (prognosis), and how to obtain support to manage their CCCs. If people living with CCCs are to play an active role in decisions about their future care, they need to be encouraged and empowered by well-trained healthcare providers. This requires enabling healthcare user communication, engagement, and empowerment activities including:

 local coaching and advocacy to increase people’s confidence in taking a proactive communication role in consultations;

 continued provision of healthcare provider development courses that repeatedly integrate communication skills;

 engagement with or continued use of MyHR, as a prompt with questions to ask in the

form of access to events and shared health summaries from previous consultations and the creation of topic lists for later discussion.

For a person living with CCCs, engaging with MyHR as an empowerment technique can increase their knowledge and recall and their feeling of involvement in their care, reduce misunderstanding and marginalisation, and improve the healthcare user/provider relationship. For the healthcare provider, engaging with MyHR as an empowerment technique may increase clinical continuity and improve their knowledge of how living with CCCs affects and effects the concerns of the person living with CCCs.

If these communication barriers are overcome, it would be possible to make a significant difference in the contextual knowledge about CCCs and the way people with CCCs communicate with healthcare providers. This would not increase costs, but may actually

reduce them by improving healthcare user and provider understanding, and by reducing the number and length of healthcare provision sessions required and prescriptions issued. Improved medication compliance also increases the chance that treatment will be effective.