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Who are we?. The National Institute for Intellectual Disability (NIID) has been established at Trinity College to promote the inclusion of people with intellectual disability and their families.
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Who are we? The National Institute for Intellectual Disability (NIID) has been established at Trinity College to promote the inclusion of people with intellectual disability and their families. Life Experiences of Families of People with Intellectual Disabilities: A National Survey Why are we writing to you? The National Institute for Intellectual Disability at Trinity College Dublin has been awarded funding under the European Commission to listen to families and document their lived experiences. We intend to do this through a National Survey of Families of People with Intellectual Disabilities. We are inviting to join us in this effort as the National Survey would offer an opportunity to present information on why you need what you need and what difference does it make to your lives. How do we intend to develop and carry out this National Survey? First we would carry out small group discussions (focus groups). These small group discussions will be held in up to 4/5 locations across the country. Second, based on themes emerging from the small group discussions the national survey will be developed. Third, the national survey will be widely distributed and data collected. • Who is guiding the work on the National Survey? • This work is being developed under the guidance of an advisory group. Members of this group include: • People with intellectual disabilities; • Family members; • Representatives of service-providing agencies; • Representatives of public bodies in the field of intellectual disabilities; • Academic researchers in the field of intellectual disabilities. What would we like to talk about in the small group discussions? We would like to talk about “what is life like for you as a family?” Also, about your family experiences when things have really gone well for you - as well as when things have not gone as well. What made things go well for you and what made things not go well for you. The discussions would include but not be limited to services, supports, needs, and wants. Based on themes emerging from the small group discussions the national survey questionnaire will be developed. This pilot project was funded by the Learning Innovations Projects fund administered by CAPSL, Trinity College Dublin Contact us: EMAIL & POSTAL Address – Amy or Molly in NIID & website Orla and Theresa www.tcd.ie/capsl
Who will carry out the small group discussions? We intend to involve family members to assist carrying out small group discussions. Family members over the age of 18 can indicate their willingness to assist carrying out small group discussions. Training through a series of workshops in a town/city close to you will be provided. If you decide not be assist in carrying out small group discussions that is OK. We would be pleased if you consider taking part in them. So how will the information be collected & stored? The self-completed national survey questionnaire will be mailed to you with a return self-addressed stamped envelope. The small group discussions will be audio recorded. The information gathered in both small group discussions and the national survey will be kept confidential. The information from the national survey stored on computer will not allow identification of personal details about you from your responses. The information gathered will be the ‘voice of ALL families’. The strength of the information will be in its diversity as well as its depth and breadth. This National Survey will inform what life is like for families and be beneficial to bring about change as per their aspirations.
Please complete the following details and return them in the envelope provided: • 1. Name: • 2. Address: • 3. Telephone Number (Optional): • 4. Your relationship with your family member with an intellectual disability: (circle one) • Parent (Biological, Step, Foster or Adoptive) • Other relative (Grandparent, Aunt, Uncle, Sibling) • Other non-relative (Family Friend) • 5. Your age: • 17-29 30-39 40-49 50-59 60-69 70 and above • 6. Age of your family member with an intellectual disability: • 0-6 7-18 19-29 30-39 40-49 50 and above • Indicate where your family member with an intellectual disability lives: • With me at the family home: • Outside of the family home: • Community • Residential • Independent • 8. Please indicate: • (a) I would like to take part in the small group discussion • Yes No • (b) I would like to assist in carrying out small group discussions • Yes No • (c) I would like to complete the national survey (when developed) • Yes No • Do not hesitate to make contact NIID if you have any questions regarding this • national study. You can reach us at: niid.survey@tcd.ie Telephone: 01 896 2247
Consent Form Title of Project: National Survey of Families of People with Intellectual Disabilities Name of Investigators: Dr. Hasheem Mannan; Dr. Philip Curry; Dr. Patricia O’Brien & Prof. Roy McConkey • I confirm that I have been given and have read and understood the information sheet for the above study and have asked and received answers to any questions raised. • I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without my rights being affected in any way • I understand that the researchers will hold all information and data collected securely and in confidence and that all efforts will be made to ensure that I cannot be identified as a participant in the study (except as might be required by law) • I give permission for the researchers to hold relevant personal data and to use quotes of what I said but without identifying me. • I agree to take part in the above study Name of participant: Signature: Date:
