Project information 

Parental perceptions of challenging behaviour and help seeking

Funded by University of Birmingham (Clinical Psychology) from 2011 – 2013


Ten to twenty percent of individuals with learning disabilities engage in challenging behaviour (e.g. self-injury, aggression, destruction of property). This increases to 40 – 70% for individuals who have a genetic syndrome. While it has been demonstrated that behavioural strategies are effective in reducing challenging behaviour, many parents report challenging behaviour over a number of years and follow-up studies suggest challenging behaviour is persistent over time.

The focus of this study is long-term challenging behaviour (behavioural difficulties) in people with genetic syndromes and associated learning disabilities. In particular it addresses how characteristics of individuals with genetic syndromes impact on parents’ perceptions of challenging behaviour and parents help seeking behaviour. In this study the Illness Perception Questionnaire will be modified for measuring perceptions of challenging behaviour because this questionnaire has been used extensively within the health psychology literature to study links between perceptions and help seeking behaviour. It contains a wide range of subscales and will thoroughly address parental perceptions across five areas (identity, timeline, cause, chroncity and consequences).


We aim to (i) explore the parents’ views of their children’s challenging behaviour and (ii) collect information on parents help seeking behaviours/choice of intervention.


We are hoping to recruit 76 families of children and adults with long-term challenging behaviour from a cross syndrome database held by Professor Chris Oliver. These will be families who have previously participated in research with Professor Chris Oliver and have indicated that their child engages in long term challenging behaviour. All families on our database who meet these criteria will receive a letter explaining the rationale of the research, why they have been selected and why they may wish to take part. An information sheet will be included explaining the stages of the study, participants’ right to withdraw, and how data will be stored. If families wish to take part they will be invited to complete a brief online survey asking about their experiences of challenging behaviour, their child’s characteristics and the input they have received from professionals. Some participants will also be asked whether they would be willing to complete an interview about their experiences. At the end of the study participants will receive a feedback report detailing the over-arching findings of the research.

Progress to date

The project is currently in development and we hope to gain ethical approval within the next few months so that data collection can commence next spring.

Contact details

Primary contact: Dr. Jane Waite

Dr Jane Petty

Natalie Jackson

Professor Chris Oliver