Institute of Health Visiting Project

Experiences of challenging behaviour in young children, including those with special needs

This survey aims to find out about the experiences of parents and carers supporting young children including those who may have additional needs. We want to understand your experience of parenting a child who may display difficult or challenging behaviours. The survey is aimed at parents and family carers whose children are age 11 or under. It is part of a project led by the Institute of Health Visitors and supported by the Challenging Behaviour Foundation and other charities funded by the Burdett Trust for Nursing. The results will help to inform training and awareness raising materials for health visitors to help improve their support for all families.

If you have more than one child who is displaying difficult or challenging behaviour age 11 or under please fill the survey in for your youngest child only. You can fill in another version for the other child/ren if you wish.

The survey should take about 10 to 15 minutes to complete and you can stop part way through and come back to it.

Support

We understand that engaging with past experiences of challenging behaviour or difficult times can recall unpleasant memories and that aspects of this questionnaire may act as a trigger for this. Details of support organisations can be found in the end of the survey.

Confidentiality

We will keep your information confidential unless we have concerns about the safety of a vulnerable adult or child. In these circumstances we will follow our safeguarding policies which are available on request. All data is stored in a secure electronic format. When reporting the findings of this questionnaire we will not include any information that could personally identify you or your family member. A copy of our confidentiality policy can be provided on request.

About you

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* 1. Please type in the first 3 or 4 digits of your postcode ( ie BN6, GU12 etc.) this will not be used to identify you.

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* 2. What is your relationship to the child you have caring responsibilities for?

My Child

My Sibling

My Grandchild

My Niece or Nephew

My Foster Child

Other (please specify)

About your child

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* 3. Please tick any of the following statements which apply to your child. You can tick more than one - as many as apply.

My child has....

behavioural concerns with no additional needs

a developmental delay (e.g. learning to walk or talk later than expected)

been identified as having special educational needs

been diagnosed with a learning disability

been diagnosed with a severe learning disability

been diagnosed with a profound and multiple learning disability

been diagnosed with autism

been diagnosed with Asperger’s syndrome

a suspected learning disability (but no diagnosis)

suspected autism (but no diagnosis)

complex health needs

a physical disability

Other (please specify)

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* 4. How old is your child?

older than 11

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* 5. Is your child

Male

Female

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* 6. Does your child have any siblings?

more than 5

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* 7. Do you have any concerns about your ability to communicate with your child?

Yes

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* 8. If yes, please explain your concerns (e.g. my child cannot communicate verbally, my child does not seem to understand me).

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* 9. Do you have any concerns about your child’s interaction with others?

Yes

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* 10. If yes, please explain your concerns (e.g. my child has no interest in playing with others.)

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* 11. Do you have any concerns about your child’s development

Yes

Challenging / difficult behaviour

This section asks about behaviours your child may show which you find particularly difficult. Things which you feel go well beyond normal “toddler tantrums” which impact negatively on your child, yourself or others in the family.

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* 12. Please tick any of the difficulties or behaviours in the list below which your child has shown:

Causing harm

· hurting others (e.g. hair pulling, hitting, head-butting),
· hurting themself (e.g. head banging, eye poking, hand biting),
· destructive behaviours (e.g. throwing things, breaking furniture, tearing things up)

Eating difficulties

· eating problems which go beyond typical fussy eating (eg refusing to eat, will only eat foods of certain colour or type)
· eating inedible objects (e.g. pen lids, bedding, soil, paper, sand),
· mealtime problems (eg regularly throwing food, refusing to sit to eat)

Toileting difficulties

· compliance with toilet training (eg fear of toileting, refusal to sit on toilet)
· smearing/eating faeces

Sleeping difficulties

· struggling to rest or get to sleep, (eg not napping during the day, not going to sleep at night, not staying in bed when put to bed)
· waking too early or too often (eg waking frequently overnight, waking ready to start the day too early eg before 4 am)

Verbal/vocal behaviours

· shouting, screaming or swearing.

Other socially difficult behaviours

· other behaviours (e.g. spitting, repetitive rocking, stripping off, running away, refusing to move)

None of the behaviours in this list

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* 13. What age did your child first show challenging/difficult behaviour?

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* 14. How often does this behaviour occur?

Rarely

Sometimes (e.g every month or so)

Most weeks

Most days

Daily

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* 15. What impact did the difficult /behaviour have on your family’s daily life before your child started school (answer for now if they do not go to school)? Tick as many as apply.

Physical harm to my child or their siblings

Physical harm to parents/carers

Emotional well being of siblings affected

Emotional well being of parents/carers affected

Financial impact (e.g. parent unable to work)

Not applicable

No behaviour at pre-school age

Other (please specify)

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* 16. What impact did the behaviour have on your ability to access services like your GP, health visitor, nursery or childcare or community facilities like parks?

unable to attend nursery or access normal activities

partly able to attend nursery or access normal activities

no impact

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* 17. What impact did the behaviour have on your ability to link up with other families with young children?

no contact with others

minimum contact with others

no impact

Information and support with challenging behaviour

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* 18. During the pre-school years, were you given any information or support about supporting a child whose behaviour is difficult or challenging?

Yes

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* 19. If yes, who provided the information or support with challenging behaviour?

Portage

Nursery

Childminder

Children’s centre

School or College

Learning disability nurse

Social worker

A local or national charity (if so which)

Early Intervention Team working with an Early Help Plan

Paediatrician

Health Visitor

Child and adolescent mental health services (CAMHS)

Social Communication Team

Learning Behaviour Advisory Team

Private support please state

Other (please say who)

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* 20. How useful was the information or support?

Extremely useful

Very useful

Somewhat useful

Not so useful

Not at all useful

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* 21. Did you discuss challenging/difficult behaviour with your health visitor?

Yes

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* 22. If yes, what was their response?

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* 23. Did you find the health visitor response helpful?

Extremely helpful

Very helpful

Somewhat helpful

Not so helpful

Not at all helpful

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* 24. Do you have any other comments about support or information you received about supporting a child whose behaviour is challenging or difficult in the pre-school years?

Tools and strategies

This section asks about any tools or strategies in place around your child’s behaviour

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* 25. Do/have you used any of the following to try and prevent challenging behaviour? Please tick as many as apply.

A Positive Behaviour Support plan

A Visual Timetable

Putting in place a regular routine

Sensory Play

Intensive Interaction

Low arousal environment

Reducing difficult demands

Supporting alternative communication methods

Other (please specify)

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* 26. Do you use any of the following to respond to difficult /challenging behaviour?

Time out, including naughty step/spot where you can see your child and their movement is not restricted

Using stair-gates, cot or play-pen to keep your child in one area where you can see them Using stair-gates, doors, cot or play-pen to keep your child in one area/room alone

Holding your child to restrain them

Using a pushchair or car seat (when not travelling) to restrict your child’s movement

Using a specialist chair with straps to restrain movement

Equipment such as arm splints or a helmet

Medication specifically to address behaviour (including sleep)

Exclusion from activity (e.g. not allowed to play outside or watch TV with siblings)

Other (please specify)

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* 27. Please explain in your own words your feelings about using this approach.

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* 28. As far as you are aware, are/were any of the following approaches used by any of the services your child attended in the pre-school years e.g. childcare, nursery, hospital visits, respite care, short breaks? (tick as many as apply)

A Positive Behaviour Support plan

A Visual Timetable

Putting in place a regular routine

Sensory Play

Intensive Interaction

Low arousal environment

Reducing difficult demands

Supporting alternative communication methods

Time out, including naughty step/spot where your child’s movement was not restricted

Using stair-gates, cot or play-pen to keep your child in one area of a room with others present

Using a room where your child was left alone

Holding your child to restrain them

Using a pushchair or car seat (when not travelling) to restrict your child’s movement

Using a specialist chair with straps to restrain movement

Equipment such as arm splints or a helmet

Medication specifically to address behaviour

Exclusion from activity (e.g. not allowed to go on trips with other children or participate in the same activities)

Suggestions to improve support in future

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* 29. What additional support for difficult behaviour would have improved your experience when your child was younger? (tick as many as apply)

Understanding the reasons for the behaviour

Information about what to do at home

Knowing how to prevent difficult behaviour

Knowing what to do when behaviours occur

Linking with other families

Support tailored to our individual child and situation

Training for families to gain the same skills as professionals

Emotional support

Practical support

Support for siblings

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* 30. What would you have liked your health visitor to have known or done to support your child and family better?

Thank you so much for completing our survey. Your response will help to inform resources and training for Health Visitors.

If you need further support, you can find below organisations that can support you and your relative.

- The Challenging Behaviour Foundation provide information and support to families caring for individuals with severe learning disabilities, who may display behaviour described as challenging.
Tel: 0300 666 0126, email support@thecbf.org.uk, website: https://www.challengingbehaviour.org.uk/

- Contact support families of disabled children and can put you in contact with other families.
Tel: 0808 808 3555, website: www.cafamily.org.uk

- Family Lives offer advice about issues like behaviour.
Parent helpline: 0808 800 2222 Website: http://www.familylives.org.uk/how-we-can-help/confidential-helpline/

- National Autistic Society (NAS) offer support and information on their helpline: 0808 800 4104, www.autism.org.uk
This is a link to the NAS ‘Your Community’ which includes a discussion forum: www.community.autism.org.uk

- Mencap can provide online support for family carers who have a relative with a learning disability (or child with developmental delay). You can call their helpline Mencap Direct: 0808 808 111 or go to www.mencap.org.uk/familyhub

- The Sleep Charity offer a range of support and services from working directly with families who are approaching crisis point to delivering training to professionals and corporate clients.
Tel: +44 (0)1302 751 416 Website: https://thesleepcharity.org.uk/

Institute of Health Visiting Project

Question Title

* 1. Please type in the first 3 or 4 digits of your postcode ( ie BN6, GU12 etc.) this will not be used to identify you﻿.

Question Title

* 2. What is your relationship to the child you have caring responsibilities for?

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* 3. Please tick any of the following statements which apply to your child. You can tick more than one - as many as apply.My child has....

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* 4. How old is your child?

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* 5. Is your child

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* 6. Does your child have any siblings?

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* 7. Do you have any concerns about your ability to communicate with your child?

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* 8. If yes, please explain your concerns (e.g. my child cannot communicate verbally, my child does not seem to understand me).

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* 9. Do you have any concerns about your child’s interaction with others?

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* 10. If yes, please explain your concerns (e.g. my child has no interest in playing with others.)﻿

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* 11. Do you have any concerns about your child’s development

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* 12. Please tick any of the difficulties or behaviours in the list below which your child has shown:

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* 13. What age did your child first show challenging/difficult behaviour?

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* 14. How often does this behaviour occur?

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* 15. What impact did the difficult /behaviour have on your family’s daily life before your child started school (answer for now if they do not go to school)? Tick as many as apply.

Question Title

* 16. What impact did the behaviour have on your ability to access services like your GP, health visitor, nursery or childcare or community facilities like parks?

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* 17. What impact did the behaviour have on your ability to link up with other families with young children?

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* 18. During the pre-school years, were you given any information or support about supporting a child whose behaviour is difficult or challenging?

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* 19. If yes, who provided the information or support with challenging behaviour?

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* 20. How useful was the information or support?

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* 21. Did you discuss challenging/difficult behaviour with your health visitor?

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* 22. If yes, what was their response?

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* 23. Did you find the health visitor response helpful?

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* 24. Do you have any other comments about support or information you received about supporting a child whose behaviour is challenging or difficult in the pre-school years?

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* 25. Do/have you used any of the following to try and prevent challenging behaviour? Please tick as many as apply.

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* 26. Do you use any of the following to respond to difficult /challenging behaviour?

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* 27. Please explain in your own words your feelings about using this approach.

Question Title

* 28. As far as you are aware, are/were any of the following approaches used by any of the services your child attended in the pre-school years e.g. childcare, nursery, hospital visits, respite care, short breaks? (tick as many as apply)

Question Title

* 29. What additional support for difficult behaviour would have improved your experience when your child was younger? (tick as many as apply)

Question Title

* 30. What would you have liked your health visitor to have known or done to support your child and family better? ﻿

* 1. Please type in the first 3 or 4 digits of your postcode ( ie BN6, GU12 etc.) this will not be used to identify you.

* 3. Please tick any of the following statements which apply to your child. You can tick more than one - as many as apply.

My child has....

* 10. If yes, please explain your concerns (e.g. my child has no interest in playing with others.)

* 30. What would you have liked your health visitor to have known or done to support your child and family better?