Las estrategias de comunicación de las organizaciones de pacientes con enfermedades raras (ER) en España

Esparcia, Antonio Castillo; Villafranca, Paloma López

doi:10.1590/1413-81232015218.19852015

Cited by 11 publications

(5 citation statements)

References 7 publications

(1 reference statement)

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“…Public awareness (including through wider media presence and public health campaigns), was listed by 30% of the respondents as one of three priorities to improve information sharing and communication for rare disease(s) in Northern Ireland. A study by Castillo-Esparcia and López-Villafranca (41) investigated engagement of rare disease organizations with the public via media coverage and although a focus on human stories raised awareness, it did not increase knowledge of the public to specific diseases. Another study of online communication of rare disease organizations found that although most had websites, only a minority used their website to communicate with the media (42).…”

Section: Discussionmentioning

confidence: 99%

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

Crowe

McKnight

McAneney

2019

Front. Public Health

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Objective: By definition a rare disease affects fewer than 1 in 2,000 people but collectively 1 in 17 people are affected at some time in their lives. Rare disease patients often describe feeling isolated and unsupported. The needs of individuals living with rare disease(s) are not well met globally and have not been specifically explored in Northern Ireland. Methods: An online survey was conducted in spring of 2017, focused on information and communication needs, to identify overarching themes. Databases were searched to place responses in an international context. Results: There were 240 survey respondents with four overarching themes identified: sources of information; medical care; rare disease community; and public awareness. Thirty relevant papers resulted from the literature search. A coordinated and transparent approach for improved medical care is needed where researchers, practitioners, and policy makers work with patients, carers, and rare disease advocates to ensure a fully considered rare disease strategy is implemented. In line with that developed by many other countries, a physical or virtual Northern Ireland reference network or center of excellence for rare diseases would provide an important strategic link. Sustainable funding, resources for rare disease charities, and more cross-border working would help build a local rare disease community. Major challenges highlighted include finding the right health and social care information. The internet was the most regularly accessed, and perceived as the easiest way, to source information on rare disease. Improved signposting to accredited information, ideally by the creation of a locally relevant online information hub, a local rare disease registry that can integrate with international systems, a local rare disease coordinator, and improving public awareness are urgent needs. Conclusions: Aligned to internationally reported outcomes, practical issues for future development based on the voices of individuals living, and working with a rare condition are described. It is essential that ongoing research evaluates changes to ensure that the best possible structures and mechanisms are put in place to improve communication and information systems for those affected by a rare condition(s).

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Section: Discussionmentioning

confidence: 99%

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

Crowe

McKnight

McAneney

2019

Front. Public Health

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“…Consequently, social and environmental barriers limit the ability to participate in social roles and activities (Bogart & Irvin, 2017). Similarly, the psychological and emotional reactions associated with the diagnosis can negatively influence the process of adaptation to the disease and the quality of life (Castillo-Esparcia & López-Villafranca, 2016). In reality, these emotions are the adjustment to a multi-component process that generates a response to the adaptive challenges of a particular situation (Nesse & Ellsworth, 2009).…”

Section: Introductionmentioning

confidence: 99%

Emotional experience of the diagnostic process of a rare disease and the perception of support systems: A scoping review

Llubes-Arrià

Sanromà-Ortíz

Torné-Ruiz

et al. 2021

Journal of Clinical Nursing

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“…Also, there has been research regarding how individual rare disease groups need to improve medical communication with patients (9,10,25,27,28). One study was conducted in Spain using a retrospective analysis of rare disease organizations and a telephone interview (29). This study is different to ours not only because of the focus on one country.…”

Section: Discussionmentioning

confidence: 90%

“…This study is different to ours not only because of the focus on one country. Castillo-Esparcia et al (29) sought to understand the association between media hits, funding and public image.…”

Section: Discussionmentioning

confidence: 99%

A qualitative needs assessment of external communication by rare disease associations

Levine

Delval

Kitchen³

et al. 2023

Preprint

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- Background. There is widespread acknowledgment amongst the rare disease community that effective communication strategies are lacking to explain diagnostic issues and therapeutic challenges to the public. The goal of this study was to objectively assess the communication needs of rare disease associations using validated techniques. - Methods. Sixty-minute structured interviews and objective analysis of transcribed responses were conducted and analyzed for 20 rare disease organizations. - Results. Associations uniformly agreed that effective communication was important to educate the public, advance advocacy and raise funds. However, there was no consensus as to how this should be achieved. Only seven of the 20 organizations had formal communication plans. Only few organizations had staff dedicated to external communication. - Conclusions. Strategic improvement in rare disease communication may increase the awareness of rare diseases and advance science. Communication challenges included staffing, funding, technological resources, training and expertise.

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Las estrategias de comunicación de las organizaciones de pacientes con enfermedades raras (ER) en España

Cited by 11 publications

References 7 publications

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland

Emotional experience of the diagnostic process of a rare disease and the perception of support systems: A scoping review

A qualitative needs assessment of external communication by rare disease associations

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