Wheelchair seating equipment for children: parents’/carers’ views and experiences

1. School of Health and Social Care Wheelchair seating equipment for children: parents’/carers’ views and experiences Gillian Taylor and David Porter April 2009

2. Background The idea for this study came from: • Informal feedback from parents/carers reporting difficulties in using equipment with their children • Observation that equipment provided may not be used (supported by previous research) • Understanding that the perceived benefits of supportive seating will not be realised if the equipment is not used School of Health and Social Care

3. Our question... What makes children's wheelchair seating equipment more or less useable within everyday family life? School of Health and Social Care

4. Aims • To provide an insight into parents’/carers’ experience of using wheelchair seating equipment in their daily routines • To provide information that may be of interest and use to designers / manufacturers / providers of equipment School of Health and Social Care

5. Method • Exploratory study using a qualitative approach • Data collection via face to face unstructured interviews • Interviews audio-recorded and transcribed • Thematic data analysis using NVivo software School of Health and Social Care

6. Participants and inclusion criteria • Primary carers of 12 children who were provided with supportive seating on a non-powered wheelchair or buggy base • Seating included at least pelvic and thoracic support and had been provided at least 3 months prior to joining the study • Children were aged 2 – 12 years • Children were living at home in Oxfordshire, Warwickshire, Northamptonshire and Gloucestershire School of Health and Social Care

7. The interviews • Invited to talk about their experiences of using the equipment within everyday scenarios e.g. typical school day, family outing, weekend activities • Final question – what, if anything, would you change about your current equipment? • Interviews lasted 40 min – 1.5 hours School of Health and Social Care

8. Results Four main themes emerged: • Perceived importance of the equipment to the families • Equipment characteristics and how they impact on: • family activities and daily living • welfare of child and carer • Emotional aspects of using the equipment • Provision and maintenance of the equipment School of Health and Social Care

9. 1. Perceived importance of the equipment • All participants highly valued the equipment and saw it as essential in their daily lives “life without this (wheelchair) would be impossible” “it’s about him (child) being able to participate in life and us still having a family life …. this chair is absolutely key to it” School of Health and Social Care

10. 2. Equipment Characteristics • 21 equipment characteristics were identified in the data • Focussing this morning on the top 3 themes that: • were common to all participants • had the greatest effect on family activities and daily living School of Health and Social Care

11. Equipment Characteristics a) Size, weight and foldability Comments related to: • Transporting the chair (space in vehicle and lifting it in and out) “It’s a lovely chair to push but to lift it in and out of the car as much as I do … minimum three times a day usually … that’s a lot of lifting… and when I’m having one of my bad back days it is really difficult” School of Health and Social Care

12. Equipment Characteristics: size, weight and foldability • Living accommodation (moving around and storage when not in use) • Time and effort involved in handling equipment– affect on family activities/outings “it was only when the (wheelchair accessible) vehicle came that I realised how little we were doing, we were literally going to school and nothing else” School of Health and Social Care

13. Equipment Characteristics: size, weight and foldability • Difficulty visiting other people’s houses • Going on holiday (transport and accommodation) • Equipment restricting other family members (grandparents, siblings) helping with the care of the child School of Health and Social Care

14. Equipment Characteristics b) Adjustability Comments related to: • Need for correct height for pushing (welfare of carer) • Usefulness of recline facility for personal care “now she’s bigger we don’t want to keep lifting her onto a toilet floor, which is not hygienic and not nice for her but not good for us handling either … for our backs…so we open up the chair and change her within the chair…. one of the biggest problems with disabled children is changing them when you are out” School of Health and Social Care

15. Equipment Characteristics: adjustability • Benefit of being able to fold handles down to reduce size in public places (e.g. cafés) • Need for easy strap adjustment for different thicknesses of clothing • Need to be able to lock swivelling wheels for different surfaces • Benefit of height adjustment for child’s inclusion in activities (school, playing with siblings, meals) School of Health and Social Care

16. Equipment Characteristics c) Protection of child from the weather Comments related to: • Difficulty of getting rain covers for wheelchairs • Frustration that rain covers are not provided with the chairs and the financial implication of this for families School of Health and Social Care

17. Equipment Characteristics: protection from weather • Importance of having protection from the weather because of: • children’s particular sensitivity to cold, sun, wind, flickering sun (re photosensitive epilepsy) • difficulty of putting coats on children with severe spasticity • difficulties of wearing thick coats when using thoracic supports • the British weather! School of Health and Social Care

18. Equipment Characteristics d) Some other issues common to many participants • Manoeuvrability (at home and confined public places) • Wheels and suspension (affecting activities involving uneven surfaces) • Space to carry things • Positioning of brakes (for controlling chair down hills) School of Health and Social Care

19. 3. Emotional aspects of using the equipment Comments related to: • Emotion surrounding getting first wheelchair “the point at which you go to wheelchair services is the point at which the reality of having a child with disabilities is coming home to you……I’m not the only person who when offered a proper wheelchair just burst into tears” School of Health and Social Care

20. Emotional aspects of using the equipment • Dealing with reactions/perceptions of other people when out and about • Emotional stress when day-to-day living is difficult “I know people even now who, although their children are older they’re not as big as J and they’re still using car seats ….they’re almost crying at the thought of having to go out because of how difficult it is” School of Health and Social Care

21. 4. Provision and maintenance of equipment Comments related to: • Praise of wheelchair services “I found the company very good to deal with” “the wheelchair service have been wonderful” School of Health and Social Care

22. Provision and maintenance of equipment • Doubts and frustration about the range of equipment available and whether it is restricted by funding “You’re assuming that they are giving you the best and that it isn’t just about the money. But as you are more and more in the system, you do wonder if it is just about what they can afford and if it’ll do an okay job” • Importance of quick response when repair or maintenance is required School of Health and Social Care

23. Summary • This has been a very quick overview of the results • Families highly valued their wheelchair seating equipment and it was generally used • Certain aspects of wheelchair seating equipment have a real impact on everyday family life • There are emotional issues surrounding the use of wheelchair seating equipment - some equipment characteristics can affect parents’ ability to cope with these School of Health and Social Care

24. Thanks to … • you for listening • Elizabeth Casson Trust for funding the study • colleagues at Oxford Brookes University for their support • study participants Contact details: gtaylor@brookes.ac.uk dporter@brookes.ac.uk School of Health and Social Care