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What are the best practices for collecting data from participants with disabilities?

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Data collection is a crucial part of any data management project, but it can also pose some challenges when working with participants who have disabilities. Disabilities can affect how people access, understand, and respond to data collection methods, such as surveys, interviews, or tests. Therefore, data collectors need to follow some best practices to ensure that their data collection is ethical, inclusive, and reliable. In this article, we will discuss some of these best practices and how they can help you collect data from participants with disabilities.

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1 Know your participants

Before you design your data collection method, you need to know who your participants are and what kind of disabilities they have. Different types of disabilities may require different accommodations or adaptations to make your data collection accessible and comfortable for them. For example, if your participants have visual impairments, you may need to provide large print, braille, or audio versions of your data collection materials. If your participants have cognitive or learning disabilities, you may need to simplify your language, use visual aids, or allow more time for them to complete your data collection. Knowing your participants will help you tailor your data collection method to their needs and preferences.

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Mohammed Rhamnia

Concepteur-Développeur Fullstack Symfony/Angular
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- Approche Sensible: Adapté chaque session avec sensibilité et engagement, en se concentrant sur l'accessibilité et la communication. - Interaction et Feedback: Interaction directe avec les participants pour intégrer leurs expériences et retours, améliorant l'inclusivité des ateliers. - Partage d'Expériences: Organisé des moments de partage, comme des petits-déjeuners informels, pour encourager le dialogue ouvert. - Feedback Individuel: Mis en place des sessions de feedback pour adapter le contenu et le format des ateliers aux besoins des participants. - Partage Personnel: Partagé ma propre histoire, renfor?ant la connexion et inspirant les participants.

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2 Choose an appropriate data collection method

Depending on your research question and your participants' disabilities, you may need to choose a data collection method that suits both. Some data collection methods may be more suitable for certain disabilities than others. For example, if your participants have hearing impairments, you may want to avoid using phone interviews or audio recordings and opt for written or online surveys instead. If your participants have mobility impairments, you may want to avoid using physical tests or tasks and opt for self-report or observation methods instead. Choosing an appropriate data collection method will help you avoid potential barriers or biases that could affect your data quality.

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NANA NYARKO MENSAH

Project and Product Manager| Data Analyst | Client Relations | Consulting | 3+ years Experience Designing and Conceptualising Software Applications, Digital Product Management, Health Technology, Data Engineering
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When collecting data from people with disabilities, prioritizing inclusivity is crucial. Opt for diverse data collection methods to accommodate varying abilities. Use accessible surveys, consider alternative formats like audio or Braille, and provide assistive technologies to ensure a seamless experience. Additionally, engage with the disability community for feedback on your approach to enhance inclusiveness and effectiveness.

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3 Provide informed consent and confidentiality

One of the most important ethical principles of data collection is to obtain informed consent from your participants and protect their confidentiality. This means that you need to explain the purpose, procedures, risks, and benefits of your data collection to your participants in a clear and accessible way. You also need to respect their right to withdraw or decline from your data collection at any time without any negative consequences. Additionally, you need to ensure that their personal and sensitive data is stored and handled securely and anonymously. Providing informed consent and confidentiality will help you build trust and rapport with your participants and protect their rights and dignity.

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NANA NYARKO MENSAH

Project and Product Manager| Data Analyst | Client Relations | Consulting | 3+ years Experience Designing and Conceptualising Software Applications, Digital Product Management, Health Technology, Data Engineering
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Ensuring informed consent and confidentiality is paramount in data collection from individuals with disabilities. Clearly communicate the purpose, risks, and benefits of participation, using accessible formats. Respect privacy concerns, allowing participants to control the extent of information shared. Implement robust security measures to safeguard sensitive data, instilling trust and promoting a safe environment for open and honest engagement.

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4 Use multiple sources and methods of data

Another way to improve your data quality and reliability is to use multiple sources and methods of data collection. This means that you can collect data from different types of participants, such as those with different disabilities, backgrounds, or perspectives. You can also collect data using different methods, such as combining surveys, interviews, and observations. Using multiple sources and methods of data collection will help you capture the diversity and complexity of your research topic and reduce the risk of missing or misleading data.

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NANA NYARKO MENSAH

Project and Product Manager| Data Analyst | Client Relations | Consulting | 3+ years Experience Designing and Conceptualising Software Applications, Digital Product Management, Health Technology, Data Engineering
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Diversifying data collection sources and methods is key when engaging individuals with disabilities. Combine surveys, interviews, and observational data to gain a comprehensive understanding. Leverage both online and offline platforms, recognizing that not all disabilities may have the same accessibility requirements. This approach enhances the richness and reliability of your data, fostering a more inclusive and representative perspective.

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NANA NYARKO MENSAH

Project and Product Manager| Data Analyst | Client Relations | Consulting | 3+ years Experience Designing and Conceptualising Software Applications, Digital Product Management, Health Technology, Data Engineering
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Diversifying data collection sources and methods is key when engaging individuals with disabilities. Combine surveys, interviews, and observational data to gain a comprehensive understanding. Leverage both online and offline platforms, recognizing that not all disabilities may have the same accessibility requirements. This approach enhances the richness and reliability of your data, fostering a more inclusive and representative perspective.

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5 Validate and verify your data

Finally, after you collect your data, you need to validate and verify it. This means that you need to check if your data is accurate, consistent, and complete. You can do this by using various techniques, such as cross-checking, triangulating, or testing your data. You can also ask your participants to review or confirm your data, especially if you have used qualitative methods, such as interviews or focus groups. Validating and verifying your data will help you identify and correct any errors or gaps in your data and enhance your data credibility.

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6 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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NANA NYARKO MENSAH

Project and Product Manager| Data Analyst | Client Relations | Consulting | 3+ years Experience Designing and Conceptualising Software Applications, Digital Product Management, Health Technology, Data Engineering
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Consider the intersectionality of disabilities and acknowledge the unique challenges various individuals may face. Tailor communication and support based on diverse needs, such as cognitive or sensory differences. Additionally, provide reasonable accommodations to empower participation, address any accessibility barriers promptly, and continuously iterate based on feedback from the community to refine your approach.

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What are the best practices for collecting data from participants with disabilities?

1

2

3

4

5

6

1 Know your participants

2 Choose an appropriate data collection method

3 Provide informed consent and confidentiality

4 Use multiple sources and methods of data

5 Validate and verify your data

6 Here’s what else to consider

Data Management

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What are the best practices for collecting data from participants with disabilities?

1

2

3

4

5

6

1 Know your participants

2 Choose an appropriate data collection method

3 Provide informed consent and confidentiality

4 Use multiple sources and methods of data

5 Validate and verify your data

6 Here’s what else to consider

Data Management

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