Does your brother or sister have a Mucopolysaccharidosis (MPS) condition? If so, you are invited to take part in a research survey about the experiences and perceptions of siblings who have brothers or sisters with MPS. This form will give you an overview of what the research is about and what your participation will involve, as well as information about the consent and assent processes. Take the time to read this information carefully and to understand the information below.

Background:

Previous research studies have found that a health condition can influence the experiences and perceptions of multiple family members. A few studies have identified the experiences of parents who are living with and caring for children, adolescents, and young adults with Mucopolysaccharidosis (MPS). However, to date, there has been no research on the experiences of siblings who have brothers or sisters with MPS. Siblings often have the longest relationships of their lives together and often assume important roles in the family. Research that is focused on siblings has the potential to enhance the understanding of how MPS touches the entire family. Therefore, researchers at Massachusetts General Hospital are conducting this study to understand the views, experiences, and perceptions of siblings who have brothers or sisters with MPS. Results from this study may help inform and guide the ways health care providers, family members, and policy makers recognize, include, and support siblings of individuals with MPS.

What is the purpose of this study?

We would like to understand your views and experiences having a brother or sister with Mucopolysaccharidosis (MPS). Your responses to this survey will help us understand the following:

  • What is it like to have a brother or sister with MPS?
  • What do you want others to know about your experiences having a brother or sister with MPS?
  • What programs or resources would be helpful for siblings who have brothers or sisters with MPS?

Who is eligible?

To participate in this study, you must:

  • Have a brother or sister who has been diagnosed with a Mucopolysaccharidosis (MPS) condition
  • Live in the United States
  • Be at least 8 years of age (please refer to the Consent and Assent section below)

Individuals who have a diagnosis of MPS are not eligible to participate in this study. Birth, adoptive, half-, and step- siblings are invited to participate.

What would I have to do?

This study is for siblings who have brothers or sisters with a Mucopolysaccharidosis (MPS) condition. If you choose to participate, you will be asked to complete an online survey about your experiences with your brother or sister who has MPS. The survey should take approximately 15 minutes to complete. In the survey, you will respond to questions about yourself, your sibling with MPS, and your experiences and perceptions. The survey includes 17 statements to which you will rate your degree of agreement on a scale, as well as 5 open-ended questions. Your responses to the survey will be kept anonymous and stored in a private, secured database available only to the researchers. To ensure timely publication of your results, please submit your responses to this survey by Friday, April 26, 2019.

Consent and Assent:

In order to understand the experiences of as many siblings as possible, siblings ages 8 and older are invited to participate in this study. Siblings will be asked to first indicate their age in order to continue with this study. Siblings above the age of 18 may consent to participate in this study. If a sibling is under the age of 18, permission from a parent or legal guardian is required to participate.

Parents and legal guardians of siblings under the age of 18 will be provided with a cover letter outlining the research study and a consent form requesting permission for their children to participate. Parents will also be provided with the investigators' contact information should they have any questions. On the parental consent form, parents will be asked to submit their email address and the email address of their child who meets the eligibility criteria. After receiving consent, the investigators will then e-mail a survey and assent form to the siblings and copy parents and/or legal guardians to this e-mail correspondence. If a sibling does not have his or her own email address, parents will be asked to submit a phone number. The investigators will then work with the parents and siblings to conduct the study over the phone. In all cases, if parents will assist their son or daughter, we ask that they be instructive, but not directive. We ask that parents simply interpret any difficult words or phrases as needed, but do not direct siblings in responding in any particular way. The results will only be as meaningful and believable as they are truthful.

All siblings will be provided with a cover letter outlining the research study and what their participation will involve. For siblings under the age of 18, assent will be collected via the electronic survey or verbal assent will be obtained over the phone before proceeding with the survey. For siblings ages 18 and older, consent will be collected via the electronic survey.

Communication:

Unencrypted email will be used for communication, when applicable. The Partners standard is to send email securely. This requires you to initially set up and activate an account with a password. You can then use the password to access secure emails sent to you from Partners HealthCare. If you prefer, the researchers can send you "unencrypted" email that is not secure and could result in the unauthorized use or disclosure of your information. If you want to receive communications by unencrypted email despite these risks, Partners HealthCare will not be held responsible. Your preference to receive unencrypted emails will apply to emails sent from this research group and study only. All subjects will be asked to acknowledge and indicate whether they agree to receive unencrypted emails by checking the appropriate option in the consent and assent forms.

What are the risks?

The risks of participating in this study are minimal and would only include thinking about questions that might be considered sensitive in nature. For example, should you complete this survey, you will be asked questions about whether you view your relationship with your brother or sister as a positive experience and other related emotions. At the end of the survey, you will have an opportunity to explain what you wish others would know about your experiences as a sibling and provide advice for other families and professionals. All responses will be kept confidential and anonymous. All data will be presented in aggregate form so that no individual participants can be identified.

Will I benefit if I participate?

The benefits to participating in this study include having your opinions become part of a national research project. Furthermore, the information gathered in this survey will highlight the experiences and perceptions of siblings who have brothers or sisters with MPS, and this information may help inform health care providers, family members, and policy makers about siblings' experiences and assist in the development of resources for siblings in the future.

Do I have to participate?

Participating in this study is completely voluntary. If you choose to participate in this study, you may withdraw at any time during the survey with no consequences. You are not giving up any of your legal rights by participating in this study. Once received, your responses to the survey will be kept strictly confidential. All responses will be kept anonymous and will be analyzed and reported without specific reference to you.

Will I be paid for participating or do I have to pay anything?

You will not be compensated for participating in this study. You are not expected to incur any costs.

Will my responses be kept private?

At all times, your responses to this survey will be kept anonymous and confidential. If you chose to receive this survey via e-mail or over the phone, your responses will be stored in a private, secured, password-protected database along with all other responses made available only to the research team. Data may be used for future academic presentations and publications but will be presented in aggregate form so that responses are not identifiable. Any quotes we present will be screened to ensure individual participants are not identifiable.

Questions?

This study has been approved by the Partners Human Research Committee. If you have further questions about this study, please contact the research assistant, Nathan Grant, at NGRANT6@mgh.harvard.edu, or the Principal Investigator, Dr. Brian Skotko, at bskotko@mgh.harvard.edu. Thanks, in advance, for your thoughtful consideration of this project. We look forward to hearing from you.

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