1 Understanding the Impact of Physical, Social and Attitudinal Environments on the Participation of Children with Cerebral Palsy in North East England “The individual is rarely going to be altered very much whereas the environment slowly but surely can.” Thomas Shakespeare. Project Report Paediatric Life course Epidemiology Research Group School of Clinical Medical Sciences (Child Health) University of Newcastle University 2 CONTENTS INTRODUCTION TO DOCUMENT.................................................................................... 4 Background to study ...................................................................................................................... 4 Roles of Professionals involved in study....................................................................................... 5 Funding and Ethical approval ........................................................................................................ 5 Study design................................................................................................................................... 5 Study methods................................................................................................................................ 6 PROFILE OF THE CHILDREN WITH CEREBRAL PALSY AND THEIR FAMILIES........ 8 FINDINGS FROM 12 SEMI-STRUCTURED INTERVIEWS WITH FAMILIES OF CHILDREN WITH CP, A SUMMARY OF MAIN THEMES .............................................. 10 KEY TO DATA ................................................................................................................ 12 MOBILITY........................................................................................................................14 Table 2. Environmental facilitators and barriers influencing Mobility ...................................... 14 Facilitators and barriers to mobility in ICF format...................................................................... 15 Factors related to the family ........................................................................................................ 17 Personal factors of the child......................................................................................................... 18 Facilitators to mobility................................................................................................................. 20 Barriers to Mobility...................................................................................................................... 21 Barriers in the open space community environment.................................................................... 23 Impact of access barriers on choice ............................................................................................. 26 Toilet provision............................................................................................................................ 29 TRANSPORTATION ....................................................................................................... 32 Environmental barriers and facilitators to transportation in ICF format ..................................... 32 Private Transport:......................................................................................................................... 35 Difficulties with parking.............................................................................................................. 38 Public Transport........................................................................................................................... 40 Long distance transport:............................................................................................................... 44 Time ............................................................................................................................................. 47 SOCIAL ENVIRONMENT................................................................................................ 49 Barriers to Leisure and recreation............................................................................................... 49 Table of barriers and facilitators to participation in leisure and recreation in ICF format.......... 49 Support and relationships............................................................................................................. 57 Support and Supervision............................................................................................................... 58 Table of barriers and facilitators to participation in ICF format.................................................. 58 Attitudinal barriers: ...................................................................................................................... 63 Table of attitudes in ICF format, showing barriers or facilitators to participation...................... 64 Other people's attitudes:............................................................................................................... 65 Negative attitude and exclusion practices of services and institutions........................................ 71 3 Parental attitude to disability ....................................................................................................... 74 HEALTH RELATED SERVICES ..................................................................................... 76 Table of barriers and facilitators.................................................................................................. 76 Dealing with the health care service and health professionals: a table of environmental factors influencing participation, in ICF format ...................................................................................... 77 The Attitude of health professionals /Ethos of the Health Service.............................................. 82 Services, systems and policies ..................................................................................................... 84 EDUCATION ................................................................................................................... 87 Table of barriers and facilitators to education, in ICF format ..................................................... 87 Special school .............................................................................................................................. 92 Distance to travel ......................................................................................................................... 98 Table of proximity of the school from the child residence.......................................................... 98 School ethos and attitude of the staff......................................................................................... 104 FINANCIAL BURDEN ................................................................................................... 110 Table of facilitators and barriers................................................................................................ 110 Finances: table of environmental factors influencing participation, in ICF format................... 111 Attitudes..................................................................................................................................... 115 Benefits ...................................................................................................................................... 118 Extra cost of the assistive equipment /adaptations .................................................................... 124 THE HOME ENVIRONMENT: BARRIERS TO PHYSICAL INDEPENDENCE AND MOBILITY...................................................................................................................... 130 Barriers in the home and barriers to physical independence in ICF format .............................. 130 Design of the house:................................................................................................................... 133 Adaptations to the house............................................................................................................ 134 Accessibility............................................................................................................................... 135 Bathroom equipment:................................................................................................................. 136 INTERVIEWER FEEDBACK ......................................................................................... 144 APPENDIX 1: ................................................................................................................ 146 Subject letter .............................................................................................................................. 146 Information sheet ....................................................................................................................... 148 APPENDIX 2 ................................................................................................................. 150 Topic guide ................................................................................................................................ 150 Checklist .................................................................................................................................... 150 4 Introduction to document This document is a comprehensive report of a qualitative study using interviews with parents to ascertain the environmental factors influencing the participation of 12 children with cerebral palsy