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Are children with Down syndrome missing out on the benefits of regular physical activity? Samantha Downs finds out what parents think

Physical activity is an important health behaviour, which helps to prevent the development of a range of diseases and conditions including cardiovascular disease, diabetes, and obesity. The Chief Medical Officers’ current physical activity guidelines state that all children and young people aged between five and 18 years old should engage in a minimum of 60 minutes of moderate to vigorous intensity physical activity (MVPA) every day.

Moderate intensity physical activity is described as when you're working hard enough to raise your heart rate and break into a sweat, and you’re able to talk but unable to sing the words to a song. Vigorous intensity physical activity is described as; when you're breathing hard and fast and your heart rate has increased significantly. If you're working at this level, you won't be able to say more than a few words without pausing for a breath. MVPA is a combination of the two.

The majority of current physical activity research is conducted in populations without disabilities, and evidence suggests that many children are not active enough to benefit health. Despite the range of research investigating physical activity in children, little is known about children and young people with special needs, such as those with Down syndrome. However, Down syndrome can be associated with a range of health issues, such as obesity, low cardiovascular fitness and decreased muscle strength (NHS, 2010), which could be improved by engaging in physical activity.

To find out more, our team at Liverpool John Moores University conducted a research study in 2011 to explore available opportunities and perceived barriers to physical activity engagement amongst children and young people with Down syndrome. As part of this research, we interviewed the parent(s) of eight children and young people with Down syndrome. The eight children and young people were aged between six and 21 years, and the interviews with their parents explored different factors that influence physical activity engagement, based around Welk’s Youth Physical Activity Promotion Model (Welk, 1999).  

The results from this study are clustered within four main themes (which are discussed in more detail with quotes from parents below):

  • enabling factors – things that enable children and young people with Down syndrome to engage in physical activity  
  • predisposing factors – predisposed factors to physical activity engagement: is physical activity engagement worth it? Am I able to engage?
  • reinforcing factors – things and people that reinforce and influence children and young people with Down syndrome to be physically active
  • barriers to physical activity engagement.

Enabling factors of physical activity engagement

The children and young people engaged in similar types of physical activities, which tended to be of an unstructured and casual nature. Swimming was the most popular activity, followed by dancing, bowling and trampolining. Only one of the participants engaged in vigorous physical activity on a regular basis; the remaining children and young people engaged in low to moderate intensity physical activity.

“Swimming started seriously about five years ago and that has built up from going once a week to now going four times a week training for eight hours...it’s very competitive.”

Swimming was found to be one of the most popular activities in the study.It was suggested by over half of the parents that physical activity levels decline during the winter months. Previous research has also shown that seasonal variation affects physical activity levels of children without disabilities, finding physical activity levels are at the highest in summer and at the lowest during winter (Rich et al., 2012). We suggest that more indoor activities should be introduced for all children and young people to replace the outdoor activities that are less popular during winter months. Indoor activities could, for example, include dance, trampolining, gymnastics, soft ball, swimming and Zumba.

“We haven’t done much of that [walking] recently because the weather’s been bad”.

The need to develop the children and young people’s independence levels was expressed by parents of older children, who felt that by developing independence skills this would reduce the amount that their child relied on them to lead an active lifestyle as they grow into young adults. Skills such as using public transport and managing money were mentioned. Parents also explained that they wanted other individuals and support networks to be active role models, such as carers, colleges and schools. It is therefore important that care providers understand the importance of physical activity and the need for positive encouragement for people with Down syndrome.

“I think the barriers are that she can’t get herself there and she needs an extra eye”.

“I also hope that it [physical activity] wouldn’t always involve us as parents given that she is now 19”.

Predisposing factors to physical activity

Similarities were noted in relation to the activities the children and young people disliked, which included walking (especially long distances), running, and trying new activities. Along with the general dislike of walking, difficulties were also described linked to additional health problems such as poor muscle tone in the lower body and tiring easily.

“She’s got too much movement in her hips, knees and ankles and also her muscle tone is weak in the lower part of her body, so that’s probably why she doesn’t enjoy walking as much …she enjoys swimming because she’s got upper body strength that she has not always had in her lower body”.

“He can’t ride a bike...he can be quite scared of things he doesn’t know…I think he could do it but he won’t do it…he won’t go on anything”.

It was suggested by one parent that her child disliked running on the treadmill. However, when incorporated into a fun game, participants are often happy to engage. Similarly, previous research found that reasons to participate included activities that are fun or have an interesting purpose (Maye et al., 2010). Moreover, the children and young people within our study tended to engage regularly and enthusiastically in activities performed individually but that generally occur within a social environment; socialising seemed to be a key factor in increasing the motivation to engage in physical activity.

“Yes he likes to be involved in things. He likes to be around other children”.

“He really loves dancing – you know disco and music – and at family weddings what he really loves is getting his kilt on and then he gets up to every Scottish country dance.”

Parents felt their children had a lack of understanding with regards to why we engage in physical activity, the benefits to health and the importance of making healthy lifestyle choices. Parents, schools and support networks should take this on board and try to incorporate better education around these areas.

“She doesn’t quite understand. Whereas we would go and to the gym and really work hard, she doesn’t quite understand that principle…so he [the personal trainer] does battle with her a bit to get her to work hard.”

Reinforcing factors of physical activity

It was clear from this study that those who support people with Down syndrome, especially parents, play an important role in promoting physical activity engagement. In previous research by Heller et al. (2002) a lack of support and supervision was reported as a key barrier to engagement in physical activity. Parents in our study seemed concerned whether the support needed to lead an active lifestyle would continue in later life from future support networks.

“The people that provide care, if they appreciated the need for activity – whether it’s walking or whatever but not just sitting around letting them watch television…so get to a gym; get to classes where there is dancing”.

“I would hope that whoever she was in the care of, whether it is us or someone else, that they would keep up the physical activity levels”.

Parents explained that they felt support was also important for themselves and the wider care network to help them access suitable information about the different physical activity opportunities that are available to people with disabilities. Parents felt that they needed more support and better opportunities in order to involve their child in physical activity. Health and education sectors should work towards creating an improved communication link between themselves and the parent/carers. Furthermore, physical activity providers such as leisure clubs should revise their advertising strategies to ensure appropriate information is reaching this population. 

Barriers to physical activity engagement

Ear infections were mentioned by three parents within this study and they appear to have a direct effect on the amount of swimming the children and young people could engage in. It is important that parents and carers are aware of this and take necessary precautions, such as using ear plugs, wearing swimming hats and discouraging regular underwater swimming. 

“He’s had extra swimming with a one-to-one teacher…but unfortunately we had to give that up because he has got problems with his ear…his ears have hindered him from doing swimming”.

Encouraging engagement in physical activity

This small, qualitative survey suggests that there are many things that can be done to increase levels of physical activity amongst those with Down syndrome. The following are some of the key points to emerge:

  • fun, unstructured activities with an interesting purpose can really help young people to get involved in physical activity
  • opportunities for social interactions and the support of parents are positive influences for engagement
  • increasing the level of independence for people with Down syndrome during adolescence may have beneficial effects for physical activity participation in later life.
  • care workers should be encouraged to promote and take part in physical activity with the child or young person.

We are now investigating physical activity levels of children and young people with a range of intellectual disabilities. Our recent studies have measured how much time children and young people with intellectual disabilities spend being physically active and inactive, how children engage in physical activity during school playtimes and in PE lessons, and we have also worked with children to see what they think about playtimes. As part of these studies we have also interviewed school teachers to explore their perceptions regarding physical activity. Finally, we are currently running a pilot intervention study with two special needs schools in Merseyside and we are hoping this intervention will be successful in increasing children’s levels of physical activity.

Further information

Samantha Downs is a PhD student researching physical activity in children and young people with intellectual disabilities. She was part of the team that carried out the research discussed in this article at the Physical Activity Exchange Department, based within the Research Institute for Sports and Exercise Sciences, Liverpool John Moores University:
www.ljmu.ac.uk/PAexchange

Comments   

#1 RobertMKay 2014-03-06 15:05
Walking has always been an issue: my son now 19 tends to drag along ten yards behind me which makes for a dull walk. he has climbed a couple of Munros, as well as mountains in Wales and the Lakes District, but takes a long time to get up and, especially, down again. His favourite activities are ski-ing, sailing, swimming, boxing-gym, and snooker. He was deliberately excluded from the schools ski-trip to Italy, which I was pretty furious about.
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