Healthcare experiences of people with Down syndrome who are Black and/or Spanish-speaking
Who designed this study? This study was created by the Massachusetts General Hospital Down Syndrome Program. Brian Skotko, MD, MPP is the principal investigator for the study.
What is the research study's goal? Our goal is to better understand the barriers and facilitators that face the Black/African American and primarily Spanish-speaking populations in accessing healthcare for their loved ones with Down syndrome. We then hope to create tangible solutions to confront these barriers and better engage minority populations in their Down syndrome community and healthcare.
Who is sponsoring this research study? This study is part of a portfolio of projects that Patient-Centered Outcomes Research Institute (PCORI) has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.
How was I selected? You were either suggested by one of our members of our Caregiver Working Group or your local Down syndrome organization, or you clicked on the link to this survey in our social media posts.
Why am I being asked to participate and how many others are participating? Caregivers of people with Down syndrome who are Black/African American or speak Spanish as their primary language are encouraged to fill out this survey. We will collect at least 100 responses to this survey.
How long will it take? This survey will take approximately 15 minutes to complete.
Will I be compensated? There is no financial compensation for your participation.
How is my privacy being protected? Your answers are confidential. If quotations from respondents are shared with the public (in the form of a research publication), they will be anonymous. We will not be reporting individual respondent's names. While there is always a risk of a breach of confidentiality, we have implemented several safety measures to ensure that personal data is protected. The likelihood that this data will remain secure is very high.
How will my responses be used? We intend to publish our findings so that the advocacy, caregiver, clinical, and research community can benefit from the understandings. If appropriate, we will also seek publication of the findings in a medical journal to have an impact and reach on clinicians and researchers now and in the future. No information will be published in any manner that would personally identify you, and your information collected will not be used for clinical care.
What are the risks and possible discomforts? A foreseeable risk and discomfort of participating in this study is the time and effort of filling out the survey. If you feel distressed, you can skip any question. The only other risk is related to privacy and confidentiality. We have implemented several safety measures to ensure that personal data is protected.
Aside from this survey, what other information will be gathered? No information will be collected from other sources.
What happens if I do not complete the survey? Participation is completely voluntary; if you personally do not wish to complete the survey, you can stop at any time and this decision will not affect your current medical care, care you receive at Partners now or in the future, or any benefits you receive now or have a right to receive.
Who can I contact if I have questions about the study? If you have questions about the study, you can contact the PI, Dr. Brian Skotko at +1-617-724-9086 or dsc2u@mgh.harvard.edu. If you'd like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at +1-857-282-1900 or IRB@partners.org.
We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice, and does not describe all details of this requirement. During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy.
