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 P.; Prushinskaya, Olga; Nelson, Eliza; Hill, Kelsey; Miller, Anna; Emans, S. Jean

doi:10.1007/s40271-018-0342-4

Cited by 9 publications

(7 citation statements)

References 31 publications

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“…The proposed storyboard content and functionality for MyVoice:CF drew from our prior work related to reproductive health in this population 6,8,9,11,13,[25][26][27][28][29] and the iterative input from our stakeholder panel. The initial storyboard highlighted the proposed content and illustrations for the tool using Microsoft PowerPoint.…”

Section: Storyboard and Prototype Developmentmentioning

confidence: 99%

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Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis

Stransky

Pam²,

Ladores

et al. 2022

Journal of Patient Experience

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Objective: More people with cystic fibrosis (pwCF) are reaching adulthood and considering their reproductive futures. Unfortunately, many pwCF report gaps in their reproductive healthcare. We describe measures of stakeholder engagement in developing a reproductive goals decision aid for women with CF called MyVoice:CF. Methods: Stakeholders reviewed the content, design, and usability of the tool, which was informed by prior research related to CF family planning experiences and preferences as well as a conceptual understanding of reproductive decision making. We evaluated stakeholder engagement via process measures and outcomes of stakeholder involvement. We collected data via recorded stakeholder recommendations and surveys. Results: Fourteen stakeholders participated and the majority described their role on the project as “collaborator”, “advisor”, or “expert.” Most felt their expectations for the project were met or exceeded, that they had contributed significantly, and that they received sufficient and frequent information about the process. All stakeholders provided recommendations and clarified aims for a CF-specific family planning tool, including its content and focus on facilitating shared decision making. Discussion: Utilizing meaningful stakeholder contributions, we developed MyVoice:CF, a novel web-based decision aid to help women with CF engage in shared decision-making regarding their reproductive goals. Practical Value: Our findings from working with stakeholders for MyVoice:CF indicate that disease-specific reproductive health resources can and should be designed with input from individuals in the relevant communities.

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Section: Storyboard and Prototype Developmentmentioning

confidence: 99%

“…We further incorporated the perspectives of pwCF by drawing on our prior work related to reproductive health in this population. 6,8,9,11,13,[25][26][27][28][29]…”

Section: Systematic Development Processmentioning

confidence: 99%

Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis

Stransky

Pam²,

Ladores

et al. 2022

Journal of Patient Experience

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“… 8 A modified M-PACE approach has previously been used to create patient-centered educational materials for women with cystic fibrosis. 9 M-PACE is a five-step process entailing: (1) development of a panel of partners, (2) generation of recommendations, (3) evaluation of existing resources, (4) summarization of collaborator feedback, and (5) development and adaptation of educational resources. 8 This study was based in Pittsburgh, Pennsylvania and involved virtual interviews and correspondence with individuals across the United States occurring from August 2021 to January 2022 using methodology adapted from participatory research.…”

Section: Methodsmentioning

confidence: 99%

“…We drew upon evidence-based participatory research frameworks and evaluation processes in developing our methodology. 8 – 10 In doing so, we address a gap in the existing literature on the engagement of community partners in curriculum development beyond roles as educators of teaching sessions.…”

Section: Introductionmentioning

confidence: 99%

Structured Engagement of Community Partners to Revise a Pregnancy Options Counseling Curriculum for Pediatric Residents

Kirkpatrick

Goldman

Bell

et al. 2023

Journal of Medical Education and Curricular Development

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OBJECTIVE The engagement of community partners, including patients, is increasingly recognized as important in developing medical education curricula. Structured methodology for partner engagement in curriculum development is lacking in the existing literature. This article describes a structured approach to engaging community partners to provide input on revising a curriculum for pediatric residents about pregnancy options counseling with adolescents. METHODS We used the five-step Method for Program Adaptation through Community Engagement: (1) development of a panel of community partners including patients and professionals, (2) and (3) partner evaluation of the existing curriculum and recommendations for revisions, (4) summarization of partner feedback, and (5) development of the revised curriculum. We surveyed partners about their perceived impact on the revision and satisfaction with the process. RESULTS Seventeen partners participated. Five experienced adolescent pregnancy, while the remaining 12 included healthcare and social service professionals. All partners provided multiple recommendations, generating 124 discrete recommendations. Twenty recommendations were suggested by multiple individuals. The authors reviewed all recommendations by category during consensus meetings and determined which recommendations would be incorporated into the revised curriculum to meet stated learning objectives. We implemented 14 of these 20 recommendations, including adding a values clarification exercise, information about mental health crisis resources, and more detail about adoption. We also incorporated 15 individual recommendations pertaining to curriculum clarity. Recommendations from professionals and patients were similar. Fourteen out of 17 participants completed the survey at the close of the project. All respondents understood their roles, were satisfied with their degree of engagement, and felt that their expectations for participation were met or exceeded. CONCLUSIONS This study describes a methodology for a formal process to engage community partners in curriculum development and revision processes. Such methodology can ensure that medical education curricula are optimally attuned to the needs of key community members and integrate the patient’s voice.

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“…The discussion among stakeholders has arisen attention in various fields such as public and management, medical, environmental planning and so forth. [13][14][15]. The definition of a stakeholder is quite similar in these fields.…”

Section: The Relations Between the Government The Npos And The Peoplementioning

confidence: 99%

Multi-Conflicts between the Government, the Non-Profit Organisation and the People after a Serious Landslide Disaster Based Upon Qualitative Analysis

Chuang

2019

Sustainability

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Due to the increasing number of intensified extreme events, post-recovery has become a serious challenge worldwide. The common issues faced during the recovery process are fragmentation and coordination problems, the lack of capacity and commitment and the variations in recovery. This study explores the conflicts between various stakeholders via NVivo, based upon the recovery process in Typhoon Morakot. A qualitative analysis was conducted with the software NVivo 10; the findings showed the following: the stakeholders include the government t, the non-profit organisations (NPOs) (mainly charity funds) and the people. For short-term sheltering and long-term settlement, the government plays the leading role in the rebuilding work, supported by NPOs. However, this study discovers that people are disappointed with the government’s rebuilding efforts. As a result, people opt to self-rescue management. Furthermore, the supplementary NPOs sometimes play leading roles in the rebuilding, resulting in conflicts between people. Overall, the government does not take quick and proper actions, resulting in the delay of the rebuilding progress and the dilemma of role misallocation of various stakeholders. As a whole, post-disaster recovery should take the local victims’ preferences into consideration and this might be helpful to speed up the recovery process.

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

Cited by 9 publications

References 31 publications

Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis

Engaging Stakeholders in the Development of a Reproductive Goals Decision AID for Women with Cystic Fibrosis

Structured Engagement of Community Partners to Revise a Pregnancy Options Counseling Curriculum for Pediatric Residents

Multi-Conflicts between the Government, the Non-Profit Organisation and the People after a Serious Landslide Disaster Based Upon Qualitative Analysis

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