Child Development, Disability and Complex Health Needs

Lead: Esther Crawley, Alan Emond and Cathy Williams, with Tom Allport, Lucy Beasant, Pete Blair, Amberly Brigden, Pauline Emmett, Toity Deave, Matthew Ellis, Jean Golding, Steve Gregory, Mariusz Grzeda, Jenny Ingram, Debbie Johnson, Carol Joinson, Anna Pease, Raghu Lingam and Caroline Taylor.

Collaborators: Jon Pollock and Sue Roulstone (UWE), Bhupinder Sandhu (UHBristol), Kate Northstone and Jon Heron (ALSPAC), Captain Joseph Hibbeln (NIH, USA)and Medicines for Children Network .

Our main interests in this area are:

The epidemiology of developmental conditions in childhood and adolescence
Evaluating methods to promote the early identification of developmental problems in childhood
Building up the evidence base for clinical practice with disabled children in community child health

Child Development

Child and Adolescent Continence

Carol Joinson is currently principal investigator on a Medical Research Council (MRC) research project entitled ‘Increasing understanding of risk factors and outcomes associated with continence problems in children and adolescents’ (£420,064 FEC: MR/L007231/1). The aim of the research is to examine risk factors associated with continence problems in children and adolescents using data from the ALSPAC cohort. Young people across the UK will also be interviewed to examine the impact of incontinence on mental health, relationships, social activities, school attainment and aspirations for the future.

The study findings will increase our understanding of the risk factors associated with persistent continence problems and address the need for evidence-based, age appropriate information resources for young people that can help to improve their health and quality of life.'

Keyworking and Education, Health and Care (EHC) Planning in Bristol and Devon

Matthew Ellis and Julie Mytton have been funded by The Strategic Clinical Network (South West) for Women and Children to evaluate the patient experience of participating in this new multi-agency assessment by following families in the first wave of the new process through their planned 20 week assessment process.

The objectives of this evaluation are:

To compare and contrast patient experience in families with designated keyworkers and those without designated keyworkers
To develop economic measures to evaluate the cost- benefit of keyworkers, in the model of multi-agency assessments for special needs
To explore and pilot patient reported outcomes for the EHC process

Families are being asked to keep a diary during the process, to record their contact with health and educational professionals and their key worker if they have one. We are interviewing families, their keyworkers as well as collecting process data from NHS and Local authority databases. Focus groups with families of preschool and school aged children with complex needs will explore their expectations and suggested outcomes of the new EHC process. We will be sharing our findings with network members regionally and nationally in 2015.

Complex Health Needs

♦ Chronic Fatigue Syndrome (CFS/ME)

Lead: Esther Crawley, with Lucy Beasant, Amberly Brigden, Simon Collin, Debbie Johnson, Roxanne Potgieter and Sophie Velleman

♦ Complex Visual Impairment

Lead: Cathy Williams with Jocelyn Cherry, Ed Mountjoy, Anna Pease, Flors Vinuela Navarro (Cardiff) and Alex Creavin.