CENTERING LIVED EXPERTISE: CO-DESIGNING WITH SURVIVORS
Co-design is a process that actively involves all stakeholders – survivors, children, advocates, administrators, policymakers – to ensure that...
Trauma Informed and Ethical Data Collection
A trauma informed approach to evaluation recognizes that power dynamics exist within all levels - design, data collection, analysis, and our storytelling strategies. Our approaches should then recognize the impact of trauma on the people we are engaging with and plan our strategies to support and empower everyone involved accordingly.
According to the Substance Abuse and Mental Health Services Administration, a trauma-informed approach realizes the prevalence and widespread impact of trauma on our communities, recognizes the signs and symptoms of it, and integrates knowledge about trauma to avoid re-traumatization. According to the National Child Traumatic Stress Network – Trauma-informed organizations infuse and sustain trauma awareness, knowledge, and skills into their organizational cultures, practices, and policies. Organizations that value trauma informed care should also design evaluation and data collection strategies to reflect this approach. A trauma informed approach to evaluation recognizes that power dynamics exist within all levels – design, data collection, analysis, and our storytelling strategies. Our approaches should then recognize the impact of trauma on the people we are engaging with and plan our strategies to support and empower everyone involved accordingly.
Data Collection Strategies:
When designing data collection strategies, take care to choose the appropriate approaches for your needs (Wilder Research). There are many steps in collecting stories for evaluation. These procedures, can be co-developed with the evaluation team and other key constituents. For example, will you ask sensitive and personal questions about individual experiences or are you seeking to understand the experiences of a group? Consider that participants may be more comfortable participating in individual interviews over focus groups or listening sessions when being asked personal questions. Surveys can offer even more privacy for responding to sensitive questions however it is harder to monitor and attend to feelings of distress should they arise. Many approaches to data collection exist each with their strengths and limitations. Having a deep understanding of the community being served will help guide you to the appropriate approach. Additional things to consider in relation to ethical data collection:
Who will collect stories and examine data? Trusted Insider or an anonymous outsider to the community?
How will you maintain confidentially and secure access of data in accordance with state and federal regulations?
How will you engage families to participate?
How will you gather informed consent and assent?
How will you ensure informed consent and safety when collecting data from children/youth?
How will you respond to participants who become triggered or need support as a result of sharing their experiences?
How will you support data collection staff who may experience secondary trauma from data collection or analysis processes?
Informed Consent:
When collecting information, the informed consent process ensures that a survivor participant understands the kinds of information they will be providing, what will happen to their information, and clearly states that their participation is voluntary. A trauma informed consent process offers multiple decision points for participants to engage/disengage in data collection and is transparent about what they will be asked and the resources available to them is they become distressed (Wilder Research). Children should also be given the same informed consent process using developmentally appropriate language. Additionally, children should be given the opportunity to accept or decline to participate in data collection activities.
Data Security:
Program staff are likely familiar with collecting and storing private information about parent and child survivors of DV. Often, we have policies (protocols, procedures, and approaches) that outline how we will keep client records confidential and secure. It is important that we put into place similar procedures when collecting information for evaluation purposes. In an evaluation life cycle, it is important to consider how data will be stored and how and when it will be shared and with whom.
The National Network to End Domestic Violence (NNEDV) offers a brief checklist to assess client safety and data security when planning, designing, and implementing data systems.
Before beginning data collection:
Minimize data collected
Develop and implement clear data security policies and procedures
Conduct privacy impact assessments
Keep evaluation data separate from program data
Limit access levels
Critical elements to include when designing data systems:
Test your security
Keep victim data away from the internet
Utilize anti-virus software
Use alphanumeric passwords and change them frequently
Use encryption
Plan for ongoing maintenance, audits, and training:
Update operating systems
Audit for quality assurance
Use skilled technology professionals
Seek ongoing education
Sharing Data/Results Back to the Community
If you have asked members of the community or participants in your program to give you input or share their experiences for your program design or evaluation efforts, it is important to share back the information. Sharing how the information they shared impacted, shaped or changed the project or contributed to the program’s success is an important way to build trust, strengthen engagement and be accountable to the community. It can also demonstrate your program’s willingness to take the input of community members seriously and show people that their voices and experiences matter. Communicating the evaluation results back with the community is just as important as collecting input in the first place!
Additional Resources:
- Trauma-Informed Evaluation Tip Sheet for Collecting Information from Wilder Research
- Data Security Checklist from NNEDV
- Safety Net Project: The Safety Net Project develops resources and information on the use of technology
- Using a trauma-informed, socially just research framework with marginalized populations: practices and barriers to implementation
- Confidentiality: VAWA, FVPSA, and VOCA