Aims of study: To ascertain what out-of-school activities C&YP currently engage in and to determine the facilitators and barriers to participatio

Greenop, DT

Knight, KH

Porcellato, LA

Vickerman, P

LJMU Research Online (Liverpool John Moores University)

Factors affecting UK physically disabled children and young people participating in mainstream out-of-school activities: the children, young people and family perspectiveKate Knight Faculty of Health and Applied Social Sciences, Liverpool John Moores UniversityLorna Porcellato, Philip Vickerman and Daz Greenop  Liverpool John Moores University   Disability issues are high on the current political agenda, with the launch of the cross-government Disability Strategy in September 2012 (DWP, 2012) There are around 770,000 disabled children aged 0-16 in the UK.   This equates to one child in 20 being disabled (Every Disabled Child Matters, 2011) Disabled children and young people (C&YP)  wish to “have friends of the same age or who share similar experiences and to do the same things as others their age.”  This suggests a desire for inclusion in mainstream activities (DH, 2004) Research supports the need for social inclusion, (Lawlor et al., 2006; Knight et al., 2009; Sloper et al., 2009) however there is a paucity of UK peer-reviewed evidence As service users of social out-of-school activities, it is vital to hear the voices of disabled C&YP and their families. To date,  little is known locally about their views (Knight et al., In press)AimsMethodsBackgroundReferences  To ascertain what out-of-school activities C&YP currently engage in To determine the facilitators and barriers to participation Qualitative study using creative focus groups and semi-structured interviews Ethical approval obtained from LJMUSample • 8 disabled C&YP aged 11-15 years • 7 mothers of disabled C&YP aged 8-15 years• 3 fathers of disabled C&YP aged 13-15 years• 1 sibling aged 13 years• Total of 10 C&YP represented• One County within the North West of EnglandProcedure• Age and developmentally appropriate creative focus groups conducted within specialist disabled group settings  • Creative focus groups use activities and play• Gatekeeper co-facilitated to ensure the C&YP felt comfortable with researcher• Semi-structured interviews with parents and children who chose to be interviewed as a family in a location of their choice• Digitally recorded focus groups and interviews were transcribed and analysed thematically using Nvivo 10Choice of out of school activity was individualised and influenced by location, previous experience and friendships. 2 C&YP did not access any activities at all, 7 accessed specialised disabled groups and 1 accessed only mainstream.  Facilitators to Participation • Social benefitsParticipation had perceived social benefits for everyone interviewed: Barriers to participation• Awareness Other people’s awareness of the needs of disabled C&YP affected participation in all of the cases described by parents: • AccessAccess is an issue for the wheelchair users:• Personal care Three mothers of C&YP needing personal care or assistance felt that groups did not always cater for their children’s needs and this meant they did not attend or required someone to accompany them.  This impacts on social interaction and increases the need for parental respite:“His dad did help him,  if I was on my own , I would have really struggled with that, because I can’t lift him anymore, so he was luckily that he had his dad to take him and actually go on the trips, so there is not much confidence in the group to take him on his own” (Mother talking about a mainstream youth group).Department of Health (DH, 2004) National Service Framework for children, young people and maternity services: Disabled Child (Standard 8) London, DoH.Department of Work and Pensions (DWP, 2012) Fulfilling Potential, The discussion so far. Report, September, London, DWP.Every Disabled Child Matters (2011) Available at: http://www.ncb.org.uk/edcm/about_us.aspx (accessed on 14 July 2011).Knight A, Petrie P, Zuurmond M, and Potts P (2009) `Mingling Together`: Promoting the social inclusion of disabled children and young people during the school holidays. Child and Family Social Work 14: 15-24.Knight K, Porcellato L, and Tume L (In press) Out –of –school lives of physically disabled children and young people in the UK: A qualitative literature review.  Journal of Child Health Care. In Press.Lawlor K, Mihaylov S, Welsh B, Jarvis S, and Cover A (2006) A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in Northeast England.  Pediatric Rehabilitation 9(3): 219-228.Sloper P, Beresford B, and Rabiee P (2009) Every Child Matters Outcomes: what do they mean for disabled children and young people? Children in Society 23: 265-278.“I think it is about their lack of awareness and confidence” (Father talking about a mainstream youth group) “I choose activities coz I enjoy them or I like the sport, I would also choose them as well if there are people that are disabled they can help you with it” (15 year old male) “ I enjoy the actually playing but also the social side as well meeting everyone, meeting new friends and seeing the friends that I have got” (15 years old male)“There are clubs they say oh we do all inclusive sports but actually they don’t because they don’t do personal care or one-to-one to me it should allow parents a little bit of respite for an hour“ (Mother of 8 years old male) “The (outdoor sports club) club has no wheelchair access to their toilet” (15 year old  male)Provisional Findings“When you ring up and explain they think you are from out-of-space and until they meet him they don’t understand what he is about” (Mother of 8 year old male) Implications o C&YP and families must be listened to in relation to out-of-school provisiono Social interaction/inclusion has positive benefits on all C&YP and familieso Effective out-of-school provision can provide respite for families “The ones who are missing out are the ones who have the toileting issues” (Mother of 13 years old male) May 2013Designed by Georgina (16 years) k.h.knight@ljmu.ac.uk

Factors affecting UK physically disabled children and young people participating in mainstream out-of-school activities: the children, young people and family perspective

Factors affecting UK physically disabled children and young people participating in mainstream out-of-school activities: the children, young people and family perspective

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