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Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement

Kazmerski, Traci M. ; Miller, Elizabeth ; Sawicki, Gregory S. ; Thomas, Phaedra ; Prushinskaya, Olga ; Nelson, Eliza ; Hill, Kelsey ; Miller, Anna ; Jean Emans, S.

The patient : patient-centered outcomes research, 2019-04, Vol.12 (2), p.267-276

Cham: Springer International Publishing

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Título:
Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement
Autor: Kazmerski, Traci M. ; Miller, Elizabeth ; Sawicki, Gregory S. ; Thomas, Phaedra ; Prushinskaya, Olga ; Nelson, Eliza ; Hill, Kelsey ; Miller, Anna ; Jean Emans, S.
Assuntos: Adaptation ; Chronic illnesses ; Cystic Fibrosis ; Disease ; Education ; Feedback ; Female ; Health Administration ; Health Economics ; Health Education ; Humans ; Intervention ; Medicine ; Medicine & Public Health ; Meetings ; Original Research Article ; Patient-centered care ; Patients ; Pediatrics ; Pharmacoeconomics and Health Outcomes ; Program Development ; Public Health ; Quality of Life Research ; Reproductive health ; Reproductive Health - education ; Stakeholder Participation ; Stakeholders ; Teenagers ; Womens health ; Young adults
É parte de: The patient : patient-centered outcomes research, 2019-04, Vol.12 (2), p.267-276
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SourceType-Scholarly Journals-1
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Descrição: Purpose Stakeholder engagement, specifically integration of patient and family perspectives about what matters, is increasingly recognized as a critical component of patient-centered healthcare delivery. This study describes a structured approach to and evaluation of stakeholder engagement in the development of novel sexual and reproductive health (SRH) educational resources for adolescent and young adult (AYA) women with cystic fibrosis (CF). Methods Key stakeholders participated in a systematic series of steps to iteratively develop and adapt patient educational resources. Process measures (stakeholder recruitment, composition, co-learning, and transparency) and proximal outcomes of stakeholder involvement (impact on the development process and satisfaction) were measured via recorded stakeholder recommendations and a stakeholder survey. Results Seventeen stakeholders participated in seven group and two patient-only conference calls. The majority of stakeholders understood their roles, had their expectations met or exceeded, and were satisfied with the frequency and quality of engagement in the project. All stakeholders in attendance provided multiple concrete recommen-dations during the development process. Stakeholders explored the motivations of AYA women with CF related to SRH and agreed that the ideal resource should be online. After reviewing the design of existing resources, stakeholders decided by consensus to partner with a pre-existing young women’s health website and created 11 CF-specific SRH guides. Conclusions This study illuminates a path for a formal process of stakeholder engagement and evaluation in educational resource development centered on the SRH care needs of AYA women with CF. Similar systematic, planned processes could be extended to other populations and aspects of healthcare.
Editor: Cham: Springer International Publishing
Idioma: Inglês

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Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement

Kazmerski, Traci M. ; Miller, Elizabeth ; Sawicki, Gregory S. ; Thomas, Phaedra ; Prushinskaya, Olga ; Nelson, Eliza ; Hill, Kelsey ; Miller, Anna ; Jean Emans, S.

Cham: Springer International Publishing

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