ࡱ> @B?]  bjbjzz 4<1\1\ffTF;.bbbbb===$i=====bb="bb=b@T':_ 0;,uL=======F===;=============f> : Please note: this information sheet should be updated to reflect your study specifically and translated (and back translated) into the local language. Amend or take out any reference to modules/activities not included in your study and add any additional information as relevant. Using Key Informants to identify children with disabilities in [Study country or Area] Contact Details: [Organisation contact details including a named individual for contact and their phone number] INFORMATION SHEET FOR PARENTS AND GUARDIANS OF CHILDREN PARTICIPATING IN THE STUDY Background: You and your child are being invited to take part in the [Name of Study, Study Area] Study. Before you decide whether to take part or not we want to make sure that you understand why the study is being done and what it will involve. There may be words in this information sheet that are unfamiliar to you. Please ask us to explain anything you do not understand, and take your time deciding whether you would like to take part in the study. [Organisation background and relevant previous work in child disability or reason for wanting to begin work on supporting children with disabilities] What is the Purpose of the Study? Some children suffer from problems with their [conditions/functions targeted in study]. We dont know how many children have these problems in [study country/area]. The study will help us to find children who have these conditions/limitations and make sure they get the treatment they need. [Additional information on schooling if including module on education] Information from the project will also be used to estimate how many children in [study country/area] have each of these conditions/limitations so that services can be planned for them. What Do We Have to Do? If you have been invited to participate in the study it is because there is a child aged [study ages eg 0-17] years in your house who may have a problem which prevents them from doing some or all the things other children of the same age do. The first thing we will do is examine your child to see whether they have a problem or not, and whether they could benefit from treatment. If your child does have a problem which could be helped by treatment we will advise you where to take your child. We will also talk to you to find out what treatment your child has had already, and if the child has not had any treatment we would like to know why this is the case. Finally we will ask questions about whether your child goes to school and provide advice and support if this is not the case. Do I have to agree to take part? You/your child do not have to take part in this study if you dont want to. You are free to decide. If you do agree for you/your child to take part, you will be asked to sign or put your thumb print to show that you have understood this information and that you agree for you/your child to take part in the study. If you agree for you/your child to take part in the study but you do not want to give your signature or thumb print, we will ask an independent person to come and sign that they have witnessed you giving agreement. We will give you a copy of the form. If you choose that you/your child should not take part, you do not have to give any reason and your childs care will not change in any way. How many times will I/my child have to participate? If you agree, your child will be examined by [medical and non medical team] and we will ask you some questions. This will take about 45 minutes. Are there any risks in taking part? There is no risk of physical harm to your child due to the tests that the doctor will do. The tests that the doctor does will depend on the problem that your child has. If your child has a problem with their hearing, their ability to hear will be tested and their ears will be examined. If your child has problems with their arms and/or legs, then these will be examined. If your child has fits the doctor will talk to you so you can describe what happens, and the doctor will examine your child. What will be the benefits to the children? Most children will not need any further treatment. Children who need treatment in the community will be given the treatment [specific details on whether costs are covered or not and whether support (e.g. transport, group visits) can be provided]. [Mention if there are also links to education, CBR] Can I withdraw myself or my child from the study? Even if you agree for you/your child to take part, you can change your mind at any time, without giving a reason. If you decide that you/your child should stop taking part at any point in the study, your childs care will not change in any way. If your child decides they no longer wish to take part at any time, we will stop and your childs care will not change in any way. Confidentiality: Will my participation in this project be kept confidential? All the information provided by you and your child will be kept completely secret. This means that your family names or childrens names will not be written on any of the forms and only special numbers which will be given to each child will be used. Financial Arrangements We will not give you/your child any extra money to take part. [Any other financial support e.g. for attending services etc.] Who has approved this study? This study has been reviewed and approved by [name of ethics commissions who have approved study] to make sure that study participants are protected from harm. If you have any questions If you have any questions, please contact Mr/Ms [project lead] either now or at any time in the future. The postal address and telephone numbers of the Project team are given at the top of this information sheet. The telephone number of Mr/Ms [project lead] is [telephone number] Action Please read this information sheet carefully and also make sure that you understand what it is saying. If you are not able to read it yourself, ask a member of the study team to read it out to you. Please keep this information sheet with you. If you are unsure of anything that it contains, please ask one of the staff members of the study team today or at any other time. If you give your support and are happy to participate in the study, you will be asked to sign a form, in the presence of a witness from your own community.     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