Advocacy engagement: The role of information literacy skills.

P Nzomo, P Fehrmann - Journal of Information Literacy, 2020 - ERIC
… such as self-advocacy, social advocacy, patient advocacy, parent advocacy, and policy
advocacy, our paper examines what role IL skills play in making one an effective advocate. …

The global role of patients, advocates and caregivers in rare diseases

M Nori, D Fisher-Vance, L Wuerth, R Colenso… - Future Rare …, 2023 - Future Medicine
… In response to this challenge, many patients, advocates and caregivers (PACs) have
established their own disease-specific advocacy and support groups to share knowledge and best …

FACES: An advocacy intervention for African American parents of children with autism

JN Pearson, H Meadan - Intellectual and developmental …, 2021 - meridian.allenpress.com
… Following approval from the institutional review board, participants were recruited through
community agencies and organizations (eg, parent support groups) in a large, Midwestern city…

Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis and Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy …

SC Titgemeyer - 2022 - kups.ub.uni-koeln.de
… to a support group were more likely support group participants [20]. Therefore, health
professionals ought to get better acquainted with the topic of social media support groups if they …

Self-advocacy and advocacy

R Garbutt, AM Callus - Intellectual Disabilities-E-Book: Toward …, 2022 - books.google.com
… ’s role includes building up the skills of the members of the group and supporting the group
in … Self-help groups in Japan: historical development and current issues. International Journal …

A blueprint for advocacy in neonatology

DK Hubbard, L Gievers, K Rao, JAF Zupancic… - …, 2022 - publications.aap.org
… (1) As neonatologists, we advocate for patients every day in the clinical care we provide;
however, there is an urgent need for us to move beyond problem-solving for individual patients

Rare disease, rare information: Investigating healthcare information use in online global disability support groups

T Wang - 2022 - search.proquest.com
… in a lack of knowledge among medical and healthcare providers, resulting in delayed or no
support groups, hospitals can establish digital platforms that provide systematic healthcare

Examining physician interactions with disease advocacy organizations

C Horrow, JE Pacyna, C Cosenza… - AJOB empirical …, 2019 - Taylor & Francis
… ,” or “Disease Advocacy Organizations.” For the purpose of this survey, we will use the
acronym “DAO” throughout to refer to all advocacy groups in general. …

Ongoing Information and Support Needs of Parents of Children with Epilepsy

MC Secco - 2020 - search.proquest.com
… All attendance at ESWO programs including children’s programs and parent support
groups is entered into the client’s case file. Requests for school, healthcare and community-based …

E-Learning Module and Parent Advocacy: A Qualitative Delphi Study

KA Mulvaney - 2021 - search.proquest.com
The problem that was addressed in this qualitative study is a lack of understanding of the
requirements for an online e-learning module on effective parent advocacy for 2e students who …