Down’s Syndrome: Your Experiences Questionnaire
We are writing a self-help book for parents who have a child with Down’s Syndrome. We want to make sure that this book looks at the issues that are important to parents and which will help families. We want to include tips from parents who have experienced parenting a child with Down’s Syndrome. It would be really helpful if you could share your experiences with us.
At the end of the questionnaire is a form to fill in giving consent for use to use your information in the book, which will be published byNeed2Know Books in 2010. We can use a made up name if you prefer to remain anonymous.
Thank you for taking the time to complete this survey. Your experiences will be valuable to other parents.
Victoria Dawson and Antonia Chitty
- When did you find out that your child has Down’s Syndrome?
- What were your feelings on hearing the news?
- Did you and your partner react to the diagnosis in the same way? YES/NO
- If NO how did your reactions differ and did this cause any difficulties in the relationship?
- Which professional shared the diagnosis with you?
- How would you describe the way the professional told you?
- How did your family react to the news about the diagnosis?
- Is there any advice that you would like to give to new parents who have a child with Down’s Syndrome?
- Did your child access the Portage service? YES/NO
- If YES how useful did you find this?
- Did your child go to nursery? YES/NO
- If NO why not?
- If YES what was this experience like?
- Has your child been educated in mainstream or special school or home educated? Mainstream / Special school / Home Education
- Tell us about how you chose your child’s school/home education.
- How have you found the education system?
- What have been / are your concerns about your child’s education?
- Do you have any tips to share for other parents about their child’s education?
- Has your child used Makaton?
- If YES did you use it at home? YES/NO
- IF YES what training did you receive if any?
- What health difficulties has your child faced? Circle or tick those which apply:
- Sight problems: needs glasses / lazy eye or squint / cataract / keratoconus
- Hearing problems / glue ear
- Speech and language problems
- Mobility problems
- Heart problems
- Digestive problems: vomiting / diarrhoea/ constipation / feeding issues / reflux (delete as appropriate)
- Mental health problems / depression
- Do you have any tips to share for dealing with health problems?
- Which professionals have you come across?
- Other doctor:
- Health visitor
- Speech Therapist
- Occupation Therapist
- Specialist Teacher
- Tell us about your positive and negative experiences with these professionals:
- Does your child require any specialist resources or equipment to support their needs?
- Have you any other children? Please state sex and age(s):
- Tell us about how your other children have been affected (positively and / or negatively) by being the sibling of a child with Down’s Syndrome?
- Do you have any respite care for your child? YES/NO
- If YES how often?
- If NO would you like respite? YES/NO
- Please explain why/not.
- Do you find going on holiday difficult? YES/NO
- If YES why?
- What tips could you share with other families to make family life easier?
- Do you go to any support groups? YES/NO
- If YES do both parents go?
- Have support groups been helpful? YES/NO
- Tell us about your experiences at help groups
- Does your child have challenging behaviour? YES/NO
- If yes how do you manage it?
Stress and Sleep
- What elements of parenting your child are stressful?
- What do you do to relax?
- What barriers stop you relaxing?
- Does your child have sleep difficulties? YES/NO
- If YES what are they?
- Have you sought advice from anyone around the sleep difficulties? YES/NO
- If YES from who and what support were you given?
- Do you have any tips to share for dealing with sleep problems or stress?
- Have you had any guidance around what benefits you could claim? YES/NO
- If yes, tell us what helped and what wasn’t so useful.
- Have your finances been affected as a result of having your child? YES/NO
- If yes, tell us how.
- Have you claimed anything from the Family Fund? YES/NO
- If yes, would you be willing to share what was funded to help other parents to see the kind of things that are accepted.
- Have you made financial provision for your child’s future? YES/NO
- If yes, tell us how you have done this
- Do you have any financial tips to help other parents?
Working with Professionals
- Which professionals do you come into contact with on a regular or occasional basis?
- How do you find meeting with professionals?
- What tips can you give to other parents about meeting with professionals?
- Are professionals empathic to your situation? Please provide good and bad examples:
- What has your child taught you?
- Please describe your child’s personality
- What has your child achieved that has made you proud?
- What would you say to parents that have just found out that their baby has Down’s Syndrome?
- How has your child enriched your life?
Please add anything that has not been covered that you feel is important to share with other parents:
Finally, please answer the following questions:
1. I am happy for you to use my quotes in the ‘looking after your relationship’ book: Yes /No
2. If I use your case study, I can use either a pseudonym (made up name) OR just your first name Just indicate which you’d prefer:
I am happy for you to use my first
I would like you to make up a name for me
3. You may / may not contact me again for further information.
Many thanks, Antonia and Vicki
Return this questionnaire by email to firstname.lastname@example.org or by post to 7a Channel View, Bexhill, TN40 1JT by 20 September 2009.