This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Research
Manuel Armayones Ruiz
Universitat Oberta de Catalunya
Corresponding Author
ORCiD: https://orcid.org/0000-0001-6345-8711
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background.
The diagnosis or even the suspicion of a disease on their children has an emotional impact on their parents and generates a need to acquire relevant knowledge and skills in a short period of time. For a range of motives, these parents will sometimes face communicative and cognitive barriers in their communication with the professionals that care for their children. These barriers can have a negative effect on knowledge acquisition, treatment adherence and, more generally, affect their relationship with clinicians. To overcome these barriers, we developed JUNTS framework following three steps: carrying out 10 semi-structured interviews with parents of child’s affected by a rare disease. Secondly, we carried out interviews with health professionals and patient’s organization staff. The third and last steep was to organize a meeting of the whole research team and patient’s association staff of Spanish Federation of Rare Disease and list a set of design trends that could help parents to solve the main communicational and linguistic barriers.
Results.
The JUNTS Framework presented here helps parents manage the communicative situations they find themselves in the relationship with health professionals, by exploiting a polyphonic design that includes different levels of involvement. One of the characteristics that makes this approach particularly unique is that parents and representatives of patient-support associations work jointly with health professionals, psychologists and language experts in designing the contents of a parents-support application. The Framework exploits a modular structure centred around a series of short challenges with different types of user involvement (visual, textual and hypertextual). For optimal adherence and to ensure patients complete the whole route through the support material, elements of persuasive design have been integrated.
Conclusions.
In this paper, we outline how the JUNTS framework has been designed and used to develop the web app COMjuntos based in JUNTS framework. This web app facilitates medical communication and has been specifically designed to help parents who have a child with a rare disease empower themselves in the main communicative situations with health professionals. The JUNTS framework can be adapted to any other type of chronic disease or condition.
Keywords
health literacy, medical communication, medical apps, medical language, rare diseases, doctor-patient communication
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This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Research
Manuel Armayones Ruiz
Universitat Oberta de Catalunya
Corresponding Author
ORCiD: https://orcid.org/0000-0001-6345-8711
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
History
CURRENT STATUS: Posted
Version 3
Posted 29 Sep, 2020
No community comments so far
No comments provided
No comments provided
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Internal Medicine
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background.
The diagnosis or even the suspicion of a disease on their children has an emotional impact on their parents and generates a need to acquire relevant knowledge and skills in a short period of time. For a range of motives, these parents will sometimes face communicative and cognitive barriers in their communication with the professionals that care for their children. These barriers can have a negative effect on knowledge acquisition, treatment adherence and, more generally, affect their relationship with clinicians. To overcome these barriers, we developed JUNTS framework following three steps: carrying out 10 semi-structured interviews with parents of child’s affected by a rare disease. Secondly, we carried out interviews with health professionals and patient’s organization staff. The third and last steep was to organize a meeting of the whole research team and patient’s association staff of Spanish Federation of Rare Disease and list a set of design trends that could help parents to solve the main communicational and linguistic barriers.
Results.
The JUNTS Framework presented here helps parents manage the communicative situations they find themselves in the relationship with health professionals, by exploiting a polyphonic design that includes different levels of involvement. One of the characteristics that makes this approach particularly unique is that parents and representatives of patient-support associations work jointly with health professionals, psychologists and language experts in designing the contents of a parents-support application. The Framework exploits a modular structure centred around a series of short challenges with different types of user involvement (visual, textual and hypertextual). For optimal adherence and to ensure patients complete the whole route through the support material, elements of persuasive design have been integrated.
Conclusions.
In this paper, we outline how the JUNTS framework has been designed and used to develop the web app COMjuntos based in JUNTS framework. This web app facilitates medical communication and has been specifically designed to help parents who have a child with a rare disease empower themselves in the main communicative situations with health professionals. The JUNTS framework can be adapted to any other type of chronic disease or condition.
Figure 1
Figure 2
Figure 3
Figure 4
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