Children and young people with chronic/life-limiting illnesses

 

Current projects

Behavioural approaches to the management of sleep and behaviour problems among disabled children

Stress, burnout and well-being in staff working in health care settings

Transition to adult services and adulthood for young people with autistic spectrum conditions

 

Completed projects

Care and support needs of children with cancer and leukaemia and their families

Children's, young people's and parent's access to and use of Patient Advice and Liaison Services (PALS)

Children's National Service Framework External Working Group on Disabled Children

Coordination of the Quality Matters research initiative

Community equipment: Use and needs of disabled children and their families

Disability Survey 2000: survey of young people with a disability sport

Evaluation of a national specialist mental health service for deaf children

Evaluation of the Contact a Family Volunteer Area Representatives Scheme

Evaluating the Integrated Children's System: specific study in relation to children with a disability

Expert opinions: a national survey of parents caring for a severely disabled child

Exploration of different models of multi-agency partnerships in key worker services for disabled children: Effectiveness and costs

Experiences of teenagers and young adults when faced with possible or actual fertility impairment following cancer treatment

Getting research into practice: implementing a key worker service

Housing and disabled children: a review of policy levers and opportunities

Housing and disabled children: secondary analysis of existing datasets

Housing disabled children and their families: a qualitative study

Housing disabled children and their families: obtaining national evidence

Identification of the information needs of chronically ill or physically disabled children and adolescents and development of recommendations for good practice

Improving communication between health and education for children with chronic illness or physical disability

Information to families with disabled children

Integrating services for disabled children consultancy project

Involving children young people with a chronic illness or disability in the process of local decision making about the development of health services

The ‘Life in Paediatric Oncology Project’ (LIPOP): Development and validation of a measure of work-related stressors and rewards

Literature review and staff consultation on stress and coping in staff working in paediatric oncology

Meeting the housing needs of disabled children and their families: changing policy and practice

Messages from the Family Fund Trust

Models of care closer to home for children and young people who are ill

Models of multi-agency services for transition to adult services for disabled young people and those with complex health needs: Impact and costs

National survey of minority ethnic families caring for a severely disabled child

Outpatient physiotherapy for young people with congenital heart disease

Participation of disabled children and young people under Quality Protects

Priorities and perceptions of disabled children and young people and their families regarding outcomes of social care

Quality of life in children with congenital heart defects

Research reviews on prevalence, detection and interventions in parental mental health and child welfare

Researching the lives of disabled children and young people, with a focus on their perspectives. ESRC research seminar series

Review of evidence on disabled children and young people's access to positive and inclusive activities

Service support for children with a chronic illness or physical disability in mainstream schools

Sharing value: developing a website and print directory of user-commended support services for disabled children and their families

Supporting families with two or more severely disabled children

Technology and time: home care regimes and technology dependent children

Transition to adult services of disabled young people leaving ‘out of authority’ residential schools

Understanding the impact of parental inflammatory bowel disease on children