| Literature DB >> 33227007 |
Vetta L Sanders Thompson1, Nora Leahy2, Nicole Ackermann2, Deborah J Bowen3, Melody S Goodman4.
Abstract
BACKGROUND: Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience.Entities:
Year: 2020 PMID: 33227007 PMCID: PMC7682898 DOI: 10.1371/journal.pone.0241839
Source DB: PubMed Journal: PLoS One ISSN: 1932-6203 Impact factor: 3.240
Summary of items removed throughout measure development & validation process–Delphi rounds 1 & 2.
| Orig. EP | New EP | Delphi Round 1 | Delphi Round 2 | ||
|---|---|---|---|---|---|
| # of Items | Items | # of Items | Items | ||
| 1 | 1 | 0 | - | 0 | - |
| 2 | - | 4 | 1.) Show appreciation for community time and effort | - | - |
| 2.) Highlight the community's involvement | |||||
| 3.) Give credit to community members and others for work | |||||
| 4.) Value community perspectives | |||||
| 3 | - | 3 | 1.) Help community members with problems of their own | - | - |
| 2.) Get findings and information to community members | |||||
| 3.) Help community members disseminate information using community publications | |||||
| 4 | 2 | 1 | 1.) Ask community members for input | 0 | - |
| 5 | 3 | 0 | - | 2 | 1.) Seek input from all partners at every stage of the process |
| 2.) Seek help from all partners at every stage of the process | |||||
| 6 | 4 | 1 | 1.) Help community members achieve social, educational, or economic goals | 1 | 1.) Help all partners gain important skills from involvement |
| 7 | 5 | 0 | - | 1 | |
| 1.) Build on strengths within the community/ target population | |||||
| 2.) Build on resources within the community/ target population | |||||
| 8 | 6 | 2 | 1.) Demonstrate that community members are really needed to do a good job | 2 | 1.) Demonstrate how all partners’ ideas improve the work |
| 2.) Enable community members to voice disagreements | 2.) Make final decisions that reflect the ideas of all partners involved | ||||
| 9 | - | 1 | 1.) Demonstrate that community members' ideas are just as important as academics' ideas | - | - |
| 10 | 7 | 1 | 1.) Include community members in plans for sharing findings | 1 | 1.) Share the results of how things turned out with all partners |
| 11 | - | 3 | 1.) Make plans for community-engaged activities to continue for many years | - | - |
| 2.) Make commitments in communities that are long-term | |||||
| 3.) Want to work with community members for many years | |||||
| - | 8 | - | - | 0 | - |
| 16 | - | 7 | - | ||
1 EP1: Focus on local relevance and social determinants of health; EP2: Acknowledge the community; EP3: Disseminate findings and knowledge gained to all partners; EP4: Seek and use the input of community partners; EP5: Involve a cyclical and iterative process in pursuit of objectives; EP6: Foster co-learning, capacity building, and co-benefit for all partners; EP7: Build on strengths and resources within the community; EP8: Facilitate collaborative, equitable partnerships; EP9: Integrate and achieve a balance of all partners; EP10: Involve all partners in the dissemination process; EP11: Plan for a long-term process and commitment.
2 EP1: Focus on community perspectives and determinants of health; EP2: Partner input is vital; EP3: Partnership sustainability to meet goals and objectives; EP4: Foster co-learning, capacity building, and co-benefit for all partners; EP5: Build on strengths and resources within the community or patient population; EP6: Facilitate collaborative, equitable partnerships; EP7: Involve all partners in the dissemination process; EP8: Build and maintain trust in the partnership.
Summary of items removed throughout measure development & validation process–Delphi rounds 3–4.
| EP | Delphi Round 3 | Delphi Round 4 | ||
|---|---|---|---|---|
| # of Items | Items | # of Items | Items | |
| 1 | 0 | - | 0 | - |
| 2 | 0 | - | 1 | 1.) Create a shared decision making structure |
| 3 | 0 | - | 0 | - |
| 4 | 0 | - | 0 | - |
| 5 | 1 | 1.) Help to fill gaps in community/patient population’s strengths and resources | 0 | - |
| 6 | 1 | 1.) Foster collaborations in which all partners have input | 1 | 1.) Enable all people involved to voice their views |
| 7 | 2 | 1.) Interested partners are involved with sharing findings | 0 | - |
| 2.) The partners meet to communicate about the project | ||||
| 8 | 0 | - | 0 | - |
| 4 | - | 2 | - | |
1 EP1: Focus on community perspectives and determinants of health; EP2: Partner input is vital; EP3: Partnership sustainability to meet goals and objectives; EP4: Foster co-learning, capacity building, and co-benefit for all partners; EP5: Build on strengths and resources within the community or patient population; EP6: Facilitate collaborative, equitable partnerships; EP7: Involve all partners in the dissemination process; EP8: Build and maintain trust in the partnership.
Demographic characteristics of interview participants.
| Demographic Characteristic N | ||||
|---|---|---|---|---|
| High School | 2 | |||
| Some college or associate degree | 4 | |||
| College degree | 2 | |||
| Graduate Degree | 7 | |||
| Missing | 1 | |||
| African American/ Black | 1 | 10 | 0 | 11 |
| White | 1 | 3 | 0 | 4 |
| Missing | 0 | 0 | 1 | 1 |
| Total | 2 | 13 | 1 | 16 |
Summary of cognitive interview analyses: factors related to comprehension, response and suggestions for change.
| Literacy: self & others | Comments/Suggestions | |
| Dissemination, dissemination activities, disseminate | Sharing results or sharing data | |
| Memorandum of Understanding | Roles and responsibilities | |
| Intellectual property | Articles and presentations | |
| Management responsibility | ||
| Accountable | ||
| Inclusion, inclusiveness, inclusive quality | ||
| Representation | ||
| Collaboration, collaborative | ||
| Equitable | ||
| Coalition | ||
| Fosters | Encourages, supports | |
| Incorporate factors | Delete and use examples | |
| Capacity | ||
| Governance | ||
| Mutually agreed upon, agreed-upon | ||
| Food access | Places to buy or get food | |
| Stakeholder (termed jargon) | ||
| Vague | ||
| Culture, cultural factors | (examples, context) | |
| Issues | (examples, context) | |
| Plan | (context) | |
| Problem Solving | ||
| Resources | (what resources, context) | |
| Capacity | (context) | |
| Environment | (context) | |
| Partner, partners, academic partners (there seems to be a desire to specify “all” | All partners, less confusion; who is included | |
| Leadership responsibility (also listed as preferred) | ||
| Quality Stem | Confusing, only specifies academic researchers; too wordy | Take word |
| Recommended Changes | Additions | “Unsure, undecided,” numbers to ground the quantity scale |
| Complex Questions | All partners assist in establishing roles and responsibilities for the collaboration | Reference single issue |
| All partners have the opportunity to share ideas, input, leadership responsibilities, and governance (for example—memorandum of understanding, bylaws, organizational structure) as appropriate for the project. | It is always appropriate to share information in the partnership; too wordy | |
| Incorporate factors (for example—housing, transportation, food access, education, employment) that influence health status, as appropriate. | Delete “as appropriate.” Always appropriate. | |
| Examine data together to determine the health problems that most people in the community think are important. | All partners look at the data to determine the health problems the community thinks are important. | |
| Partners agree on ownership and management responsibility of data and intellectual property. | Partners agree on ownership of data for publications and presentations. | |
| Not important | Community has confidence they will receive credit for their contributions. | Researcher focused |
| All partners have the opportunity to be coauthors when the work is published. | ||
| Factors cited for importance | Trust, benefit, respect, power, control, decision making (mutual), value community | |
Average of participants (N = 16) choosing response options over all items.
| Quantity Response | Quality Responses | Difficulty of Choosing Response | |||
|---|---|---|---|---|---|
| Response Option | Average, % | Response Option | Average, % | Response Option | Average, % |
| Never | 5.1 | Poor | 9.4 | Extremely Easy | 48.1 |
| Rarely | 9.0 | Fair | 8.6 | Somewhat Easy | 26.1 |
| Sometimes | 27.0 | Good | 19.2 | Neither Easy nor Difficult | 9.8 |
| Often | 36.5 | Very Good | 26.8 | Somewhat Difficult | 14.9 |
| Always | 22.4 | Excellent | 35.9 | Extremely Difficult | 1.2 |
*Asked after responding to item using quality scale.