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Identifying the Barriers and Facilitators to Participation in Physical Activity for Children with Down Syndrome

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Title: Identifying the Barriers and Facilitators to Participation in Physical Activity for Children with Down Syndrome
Language: English
Authors: Barr, M., Shields, N.
Source: Journal of Intellectual Disability Research. Nov 2011 55(11):1020-1033.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Physical Description: PDF
Page Count: 14
Publication Date: 2011
Document Type: Journal Articles
Reports - Research
Descriptors: Research Needs, Physical Activities, Down Syndrome, Interpersonal Relationship, Interaction, Disabilities, Interviews, Identification, Family Role, Educational Strategies, Children, Parents
DOI: 10.1111/j.1365-2788.2011.01425.x
ISSN: 0964-2633
Abstract: Background: Many children with Down syndrome do not undertake the recommended amount of daily physical activity. The aim of this study was to explore the barriers and facilitators to physical activity for this group. Methods: Eighteen in-depth interviews were conducted with 20 parents (16 mothers, 4 fathers) of children with Down syndrome aged between 2 and 17 years to examine what factors facilitate physical activity and what factors are barriers to activity for their children. The participants were recruited through a community disability organisation that advocates for people with Down syndrome and their families. Interviews were recorded, transcribed and independently coded and analysed by two researchers using thematic analysis. Results: Four themes on facilitators of physical activity were identified: (1) the positive role of the family; (2) opportunity for social interaction with peers; (3) structured accessible programmes that make adaptations for children with Down syndrome; and (4) children who were determined to succeed and physically skilled. Four themes on the barriers to physical activity were also identified: (1) characteristics commonly associated with Down syndrome; (2) competing family responsibilities; (3) reduced physical or behavioural skills; and (4) a lack of accessible programmes. Conclusions: The results highlight the important role of families in determining how much physical activity children with Down syndrome undertake and the effect that common characteristics associated with Down syndrome can have on maintaining an active lifestyle. Future research needs to concentrate on successful methods of encouraging physical activity, such as ensuring social interaction is part of the activity, and eliminating barriers to physical activity such as the a lack of appropriate programmes for children with Down syndrome. Implementing these strategies may encourage children with Down syndrome to participate more frequently in a physically active lifestyle.
Abstractor: As Provided
Number of References: 51
Entry Date: 2011
Accession Number: EJ943922
Database: ERIC
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  Value: <anid>AN0066716044;eul01nov.11;2019Jun04.10:27;v2.2.500</anid> <title id="AN0066716044-1">Identifying the barriers and facilitators to participation in physical activity for children with Down syndrome. </title> <p>Background  Many children with Down syndrome do not undertake the recommended amount of daily physical activity. The aim of this study was to explore the barriers and facilitators to physical activity for this group. Methods  Eighteen in‐depth interviews were conducted with 20 parents (16 mothers, 4 fathers) of children with Down syndrome aged between 2 and 17 years to examine what factors facilitate physical activity and what factors are barriers to activity for their children. The participants were recruited through a community disability organisation that advocates for people with Down syndrome and their families. Interviews were recorded, transcribed and independently coded and analysed by two researchers using thematic analysis. Results  Four themes on facilitators of physical activity were identified: (<reflink idref="bib1" id="ref1">1</reflink>) the positive role of the family; (<reflink idref="bib2" id="ref2">2</reflink>) opportunity for social interaction with peers; (<reflink idref="bib3" id="ref3">3</reflink>) structured accessible programmes that make adaptations for children with Down syndrome; and (<reflink idref="bib4" id="ref4">4</reflink>) children who were determined to succeed and physically skilled. Four themes on the barriers to physical activity were also identified: (<reflink idref="bib1" id="ref5">1</reflink>) characteristics commonly associated with Down syndrome; (<reflink idref="bib2" id="ref6">2</reflink>) competing family responsibilities; (<reflink idref="bib3" id="ref7">3</reflink>) reduced physical or behavioural skills; and (<reflink idref="bib4" id="ref8">4</reflink>) a lack of accessible programmes. Conclusions  The results highlight the important role of families in determining how much physical activity children with Down syndrome undertake and the effect that common characteristics associated with Down syndrome can have on maintaining an active lifestyle. Future research needs to concentrate on successful methods of encouraging physical activity, such as ensuring social interaction is part of the activity, and eliminating barriers to physical activity such as the a lack of appropriate programmes for children with Down syndrome. Implementing these strategies may encourage children with Down syndrome to participate more frequently in a physically active lifestyle.</p> <p>Keywords: children; Down syndrome; facilitator; physical activity; barrier</p> <p>Participation in physical activity is beneficial for all children, including children with Down syndrome. The benefits include improved health, prevention of chronic disease ([<reflink idref="bib38" id="ref9">38</reflink>]), increased self‐esteem and the promotion of social interaction ([<reflink idref="bib23" id="ref10">23</reflink>]). Activity participation is particularly important for a child's development and can have a positive impact on their quality of life and future life outcomes ([<reflink idref="bib26" id="ref11">26</reflink>]). It is recommended that children participate in at least 60 min of moderate‐to‐vigorous intensity physical activity everyday ([<reflink idref="bib2" id="ref12">2</reflink>]). However, a recent study found that 58% of children with Down syndrome do not meet these recommendations ([<reflink idref="bib43" id="ref13">43</reflink>]) when their levels of physical activity were objectively measured using accelerometry. This compares to an estimated 15–25% of children with typical development who do not meet the physical activity recommendations, although these latter figures are based on subjective self‐report or parent‐reported data ([<reflink idref="bib6" id="ref14">6</reflink>]; [<reflink idref="bib45" id="ref15">45</reflink>]).</p> <p>The reasons for the differences in the level of engagement in physical activity between children with Down syndrome and children with typical development are not well established. Several musculoskeletal, cardiovascular and biological characteristics of Down syndrome, such as congenital heart disease ([<reflink idref="bib39" id="ref16">39</reflink>]), lower muscle strength and cardiovascular fitness ([<reflink idref="bib19" id="ref17">19</reflink>]), developmental delay ([<reflink idref="bib8" id="ref18">8</reflink>]) and lower running performance ([<reflink idref="bib35" id="ref19">35</reflink>]) may influence the amount of activity these children participate in and explain these differences. However, there are also social, environmental and familial factors ([<reflink idref="bib42" id="ref20">42</reflink>]) that might be influential. The variables consistently associated with physical activity in children with typical development include activity preference, achievement orientation, physical competence, previous engagement in physical activity, parental support and opportunities to exercise ([<reflink idref="bib41" id="ref21">41</reflink>]). By comparison, children with intellectual disabilities (ID) are additionally thought to be prevented from engaging in physical activity because of a lack of cognitive ability and a lack of social or behavioural skills ([<reflink idref="bib24" id="ref22">24</reflink>]; [<reflink idref="bib34" id="ref23">34</reflink>]). These differences suggest that children with Down syndrome may be particularly disadvantaged relative to their ability and opportunity to participate in physical activity, and therefore the barriers and facilitators to their engagement in activity may be different from children with typical development.</p> <p>Our research team published a study investigating the barriers and facilitators to physical activity among adults with Down syndrome ([<reflink idref="bib31" id="ref24">31</reflink>]) and we were interested to examine if the same barriers and facilitators to physical activity exist for children with Down syndrome. A number of previous studies have examined the barriers to physical and leisure activities for children with disability where the participants included children with ID ([<reflink idref="bib32" id="ref25">32</reflink>]; [<reflink idref="bib9" id="ref26">9</reflink>]; [<reflink idref="bib29" id="ref27">29</reflink>]; [<reflink idref="bib44" id="ref28">44</reflink>]; [<reflink idref="bib24" id="ref29">24</reflink>]; [<reflink idref="bib7" id="ref30">7</reflink>]; [<reflink idref="bib34" id="ref31">34</reflink>]). These studies reported a range of personal, social, environmental and programme factors that hindered engagement in physical activity by children with disability including lacking the necessary physical and social skills, a lack of accessible facilities and programmes, a lack of appropriately trained staff, an emphasis on competitive sport and negative attitudes towards disability. Only one USA‐based study has focused on children with Down syndrome ([<reflink idref="bib34" id="ref32">34</reflink>]). In this study, four focus groups were conducted, including a total of 21 parents (16 mothers, 5 fathers) of children with Down syndrome aged 3 to 22 years (mean age 9.8 years). The key factors reported to hinder the participation of children with Down syndrome in physical activity were a lack of appropriate programmes, lack of parent education and a widening gap in physical skills between children with Down syndrome and their peers. The main facilitator of physical activity identified was the involvement of a child's parent, sibling or their peer in the activity.</p> <p>Physical inactivity increases the risk of obesity, type II diabetes and cardiovascular disease ([<reflink idref="bib37" id="ref33">37</reflink>]; [<reflink idref="bib40" id="ref34">40</reflink>]) and may exacerbate other health conditions associated with Down syndrome, such as hypotonia, hypothyroidism and cardiac abnormalities ([<reflink idref="bib14" id="ref35">14</reflink>]; [<reflink idref="bib20" id="ref36">20</reflink>]; [<reflink idref="bib18" id="ref37">18</reflink>]). A deep understanding of the barriers and facilitators to participation in physical activity by children with Down syndrome is important for health care professionals, sports and recreation industry personnel and people working in the disability sector. It would assist them to design effective intervention strategies, programmes and opportunities that promote long‐term health and well‐being, increase participation and maximise the social benefits associated with physical activity. Participation is thought to be influenced by environmental factors such as where a child lives ([<reflink idref="bib16" id="ref38">16</reflink>]). Additional barriers and facilitators to engagement in physical activity therefore may exist for children with Down syndrome in different cultural or policy contexts. In order to establish why Australian children with Down syndrome do not participate in enough physical activity, it is important to examine the barriers and facilitators of physical activity within their context. The aim of this study is to explore the barriers and facilitators to physical activity for children with Down syndrome living in Victoria, Australia.</p> <hd id="AN0066716044-2">Methods</hd> <p>An explorative qualitative study underpinned by the phenomenological theoretical framework was undertaken. Phenomenology is the study of 'the lived experience' ([<reflink idref="bib12" id="ref39">12</reflink>]). Researchers employing a phenomenological approach take the view that there is no 'correct' answer, but that individuals have a range of subjective experiences. In the context of this study, we conducted 18 in‐depth interviews with parents of children with Down syndrome to explore their experiences of their child's engagement in physical activity and the factors that made this easier or more difficult. Data collection and analysis were completed concurrently so that the initial coding was used as a foundation for future data collection ([<reflink idref="bib11" id="ref40">11</reflink>]). New areas of information arising from the data were pursued in subsequent interviews to gain a detailed understanding of these issues ([<reflink idref="bib36" id="ref41">36</reflink>]; [<reflink idref="bib11" id="ref42">11</reflink>]).</p> <hd id="AN0066716044-3">Participants</hd> <p>Purposive sampling was used to ensure the participants were parents of children with Down syndrome to increase the likelihood of relevant themes being identified and data saturation being reached ([<reflink idref="bib4" id="ref43">4</reflink>]). Participants were included if they were the parent of a child with Down syndrome aged 17 or under and were available to complete an interview in English. The participants were recruited through a not‐for‐profit, membership‐based association that advocates for people with Down Syndrome and their families in the community and provides information, resources and support services for their members. Members of this organisation were sent a flyer advertising the study. The flyer was also published in the association's online newsletter. Participants contacted the researchers directly if they were interested in taking part. Further recruitment occurred via snowballing, with participants recommending the study to other potential participants. This allowed the sample to develop as the study evolved, until little new information was obtained ([<reflink idref="bib11" id="ref44">11</reflink>]). A total of 20 parents (16 mothers, 4 fathers) of 18 children with Down syndrome (10 girls, 6 boys) aged between 2 to 17 years (mean age 9.9 ± 4.8 years) took part. Thirteen of the participants lived in a metropolitan area and seven participants lived in a regional area.</p> <p>The children had a wide range of physical activity experiences. The types of formal activities that they participated in were dance classes, swimming lessons, basketball, football, karate, tennis lessons and gymnastics. The younger children primarily engaged in informal play or physical activity at home such as walking, jumping on the trampoline, bicycling and running around with siblings. Parents also described how their children had attempted other types of physical activities for short periods before stopping because of the child's disinterest or the activity being unsuitable.</p> <hd id="AN0066716044-4">Procedure</hd> <p>Ethics approval was obtained from the relevant University committee. Written informed consent to take part in the study was received for all participants.</p> <p>In‐depth interviews lasting 20–50 min were conducted by one researcher (M.B.) at a time and place convenient for the participant. Four interviews were conducted by telephone as participants were unable to attend a face‐to‐face interview. Where both the mother and father were available for interviews, both parents were interviewed together.</p> <p>Interviews were recorded via an MP3 voice recorder. An interview schedule (Table 1) was used to guide the conversation and to ensure the interviews were sufficiently comprehensive so that they provided the participants with the opportunity to talk about a range of their experiences ([<reflink idref="bib30" id="ref45">30</reflink>]). The interviews began with two general questions about the participant's child and their engagement in physical activity. These questions helped to establish the topic of interest and to develop a rapport between the interviewer and participant(s). A series of focused questions on the factors that encouraged (facilitators) and hindered (barriers) their child's participation in physical activity followed. The questions to identify facilitators of physical activity were asked prior to questions identifying barriers to activity with the aim of creating a positive atmosphere in which physical activity was discussed ([<reflink idref="bib31" id="ref46">31</reflink>]). All questions were asked as open‐ended questions so that the participants could express their experiences and opinions in their own words and without directing the participants towards any preconceived responses. Prompts were used if the participant had difficulty generating or elaborating on ideas.</p> <p>1 Interview schedule</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Interview process</bold></th><th><bold>Explanation, questions and prompts</bold></th></tr></thead><tbody valign="top"><tr><td>Researcher introduction</td><td>Final‐year physiotherapy student</td></tr><tr><td>Purpose of study</td><td>To identify the barriers and facilitators to physical activity for children with Down syndrome</td></tr><tr><td>Opening question (to build rapport)</td><td>Tell me a bit about your child including their age, sex and physical level of functioning?</td></tr><tr><td>General physical activity question (creates a context for responses)</td><td>How much physical activity does your child participate in and what type of activity?</td></tr><tr><td>Facilitators</td><td>What are some factors that you believe encourage or facilitate your child to be physically active?</td></tr><tr><td>Prompts: friendship, programmes, enjoyment, financial support, accessibility, functional ability, general health, school</td></tr><tr><td>Barriers</td><td>What are some of the factors that you believe hinder or prevent your child's participation in physical activity?</td></tr><tr><td>Prompts: health, family, attitudes, services available, supervision requirements, functional ability</td></tr></tbody></table> </ephtml> </p> <hd id="AN0066716044-5">Data coding and analysis</hd> <p>The interviews were transcribed verbatim and the participants' names were replaced with a pseudonym to maintain confidentiality. Thematic analysis was used to ensure the themes were derived from the data and were not the preconceived ideas of the researcher ([<reflink idref="bib4" id="ref47">4</reflink>]). Familiarisation was used to engross the researchers in the raw data ([<reflink idref="bib36" id="ref48">36</reflink>]). Each transcript was read in depth, several times by the two researchers. Initial coding involved data being broken down into as many categories as possible, with similar data grouped in the same category ([<reflink idref="bib48" id="ref49">48</reflink>]). Once coding was complete, the data categories were organised and grouped into themes ([<reflink idref="bib48" id="ref50">48</reflink>]) (see Figs 1,2). All coding and recording of themes was performed using NVivo Software (Version 8).</p> <p>Graph: 1 Facilitators of physical activity for children with Down syndrome.</p> <p>Graph: 2 Barriers of physical activity for children with Down syndrome.</p> <hd id="AN0066716044-6">Rigour and trustworthiness</hd> <p>A form of member checking (respondent validation) which was primarily validation of interview content rather than validation of the interpretation of data was completed by sending the transcripts of the interviews to participants by mail. Participants were asked to comment on whether the transcript was a true reflection of their thoughts. Any points of confusion were clarified and participants were encouraged to alter or add any relevant information to the transcript. This helped ensure that the transcript was an accurate interpretation of the meaning that the participants intended to convey. Participants were asked to return the updated transcript in a reply paid envelope. Fifteen participants returned the updated transcript. Two participants provided additional comments about what they perceived as the barriers and facilitators to physical activity and three participants made minor clarifications to an answer. The other 10 participants validated that the transcript was a true and accurate record of the interview and said they had nothing else to add. The credibility of the data was also enhanced by having more than one researcher code the data; two researchers analysed the data independently and then compared and discussed the themes they identified. This is known as multiple coding or triangulation through multiple analysts ([<reflink idref="bib4" id="ref51">4</reflink>]).</p> <p>The transferability of the study data was improved by providing 'rich thick descriptions', whereby direct verbatim quotations from the interviews were included in the study report to exemplify how data were interpreted and to provide an authentic account of a personal experience ([<reflink idref="bib11" id="ref52">11</reflink>]). This gives the reader a clear sense of the evidence on which the analysis was based.</p> <p>The dependability of the data was enhanced through the choice of methodological framework (phenomenology), using methods of data collection that were consistent with the aims of the research, and establishing coherent links between the data and reported findings through accurate transcription and member checking ([<reflink idref="bib30" id="ref53">30</reflink>]). Similar categories of coded data emerged from the data of subsequent interviews; this added to the trustworthiness of the findings.</p> <hd id="AN0066716044-7">Results</hd> <p></p> <hd id="AN0066716044-8">Facilitators of physical activity for children with Down syndrome</hd> <p>Four main facilitation themes were identified: (<reflink idref="bib1" id="ref54">1</reflink>) the positive role of the family; (<reflink idref="bib2" id="ref55">2</reflink>) opportunity for social interaction with peers; (<reflink idref="bib3" id="ref56">3</reflink>) structured accessible programmes that make adaptations for children with Down syndrome; and (<reflink idref="bib4" id="ref57">4</reflink>) children who were determined to succeed and physically skilled (Fig. 1).</p> <hd id="AN0066716044-9">The positive role of the family</hd> <p>Parents identified themselves as having a positive influence on their child's participation in physical activity. When parents enjoyed sport, recognised the importance of fitness and were actively involved, their child was more inclined to participate in physical activity. Proactive parents reported sourcing opportunities for their child to participate in physical activity and were happy to put in time and effort initiating activities and educating instructors to ensure that their child had a range of physical activity opportunities.</p> <p>The biggest facilitator is to be involved yourself . . . the more you can do together, the better it is. – Jade (mother of a 14‐year‐old girl)I spend a lot of time up skilling teachers and instructors . . . so they understand her and can get the best out of her. – Clare (mother of a 6‐year‐old girl)</p> <p>Siblings were also perceived to assist with engaging their brother or sister with Down syndrome in physical activity; they were described as encouraging informal daily activities, generating the child's interest in formal activities and providing a positive role model.</p> <p>He enjoys doing what they [siblings] are doing . . . if they are on their bikes, he will jump on his bike. – John (father of an 11‐year‐old boy)</p> <hd id="AN0066716044-10">Opportunity for social interaction with peers</hd> <p>Children with Down syndrome were portrayed as enjoying social interaction, suggesting their peers were a powerful facilitator of physical activity. Social interaction was suggested to be a particularly powerful facilitator in children who were good verbal communicators. For some families, social interaction was the primary reason their child enjoyed taking part in sporting activities.</p> <p>He loves the interaction with people and that is pretty common with people with Down syndrome. They love interacting with other people. – Grace (mother of a 16‐year‐old boy)He will sit down with kids that are in basketball or footy . . . he will sit down and talk and they talk back to him . . . that is a big thing. – Ken (father of a 12‐year‐old boy)</p> <p>Parents explained that being with peers gave purpose to the activity their child was engaged in; it made the activity more meaningful and enjoyable for their child. They also provided examples of how their children would often try to emulate their peers and described the encouragement peers provided as being a crucial component to their child's ongoing participation.</p> <p>He really loves being with his mates . . . kicking the footy and the soccer ball, playing basketball. – Hannah (mother of a 10‐year‐old boy)She wants to be like her peers, be with her friends. – Clare (mother of a 6‐year‐old girl)</p> <hd id="AN0066716044-11">Structured accessible programmes that make adaptations for children with Down syndrome</hd> <p>Structured activity programmes were identified as an important facilitator of activity irrespective of whether the programme was mainstream or segregated. Parents believed that programmes which catered specifically for children with Down syndrome in particular facilitated participation, as they provided direct attention and guidance. Mainstream programmes that made appropriate adaptations and broke down new skills into manageable components also facilitated a child's participation.</p> <p>She didn't want to get on the horse, so she led the horse . . . then she sat on the horse . . .  it's breaking it right down to the bit that is non‐threatening that seems to help. – Lucy (mother of a 13‐year‐old girl)</p> <p>Both individual and team activities were perceived to facilitate engagement in activity. Some parents highlighted that individual activities were more appropriate for their child so that they could work on developing skills and an understanding of the activity at their own pace. In contrast, other parents found a team environment better facilitated their child's participation by providing the opportunity for imitation and social interaction. Personal achievements or being a part of a winning team also gave children a motive to participate.</p> <p>He can see what is going on so he knows what to do . . . team environment sports have more role models for him. . . . He looks at the scoreboard now and gets upset if they are losing – he really wants to win and understands the concept of winning. – Olivia (mother of a 10‐year‐old boy)</p> <p>Dancing was the most commonly identified physical activity that children with Down syndrome were reported to participate in. This activity was observed by parents to help overcome shyness and increase independence.</p> <p>Just about all people with Down syndrome love music and dance. – Grace (mother of a 16‐year‐old boy)Their eyes lit up, they were completely in the zone, they were all singing and wiggling . . . it is just a joy to see how powerful music is, for them to move their bodies, they just can't help themselves. – Clare (mother of a 6‐year‐old girl)</p> <hd id="AN0066716044-12">Children who were determined to succeed and physically skilled</hd> <p>Certain physical skills and personality traits of the child were recognised as facilitators to participation in activity. When children had the physical skills, coordination and cognitive ability to understand rules, they were more likely to participate in formal activities. Also, children who were enthusiastic and determined individuals were more likely to persist with an activity and succeed in achieving their goals.</p> <p>He knows that if he is playing basketball in his team that there are rules so if he is pulled up he stops and thinks about it but then he understands the rules. – Olivia (mother of a 10‐year‐old boy)Last year he couldn't do it [fireman poles], he didn't have the confidence . . . we worked at it and now he will go to any playground . . . and it doesn't matter how high it is, he will go down it . . . he conquers everything. – Hannah (mother of a 10‐year‐old boy)</p> <p>Parents noticed that when their child enjoyed an activity, they rarely needed external encouragement to participate and often felt a sense of normalisation that they were unable to achieve in other facets of their lives. Other parents remarked that their child was more likely to take part in physical activity if they were praised or rewarded for their contribution. They responded positively to instructors who provided them with equal opportunities and made the activity enjoyable</p> <p>She is being independent [bike riding] . . . she feels a sense of freedom and feels good because it is something she can do. – Amy (mother of a 17‐year‐old girl)She likes to be applauded, she wouldn't want to kick a ball or go to the park for her own sake, it would be because we are telling her how fantastic she is. – Clare (mother of a 6‐year‐old girl)</p> <hd id="AN0066716044-13">Barriers to physical activity for children with Down syndrome</hd> <p>Four main themes were identified as barriers of physical activity: (<reflink idref="bib1" id="ref58">1</reflink>) characteristics commonly associated with Down syndrome; (<reflink idref="bib2" id="ref59">2</reflink>) competing family responsibilities; (<reflink idref="bib3" id="ref60">3</reflink>) reduced physical or behavioural skills; and (<reflink idref="bib4" id="ref61">4</reflink>) a lack of accessible programmes (Fig. 2).</p> <hd id="AN0066716044-14">Characteristics commonly associated with Down syndrome</hd> <p>The most frequently identified barriers to activity related to common characteristics or conditions associated with Down syndrome and not with ID in general. These included hypotonia, obesity, congenital heart defects and communication impairments.</p> <p>Congenital heart defects were identified as a barrier to activity in younger children with Down syndrome, because of decreased energy levels and endurance. However, the amount of physical activity they performed increased once the defects had been treated. Parents were conscious of the general physique of their children with Down syndrome, their increased risk of obesity and the potential barriers to participation that being overweight may cause. Half of the parents interviewed considered hypotonia and delayed development of communication skills (verbal and interpretative) affected their child's ability to participate in physical activity. The latter barrier was predominantly evident in a mainstream setting where the ability of children with Down syndrome to understand rules and interpret instructions was limited. Other conditions mentioned as potential barriers included recurrent chest and ear infections, asthma, vision impairments, hearing deficits, continence, arthritis, spinal problems and leukaemia.</p> <p>Because she is overweight, she is clumsy and she isn't that perfect ballerina that the dance schools aspire to. – Clare (mother of a 6‐year‐old girl)Her whole build – she has flat feet, short arms, short legs . . . all those sorts of things are barriers. – Katie (mother of a 16‐year‐old girl)His muscle tone prevents him from doing things. – Lily (mother of an 8‐year‐old boy)Her ability to interpret commands, whistles and instructions are limited. – Martin (father of a 6‐year‐old girl)Kids are kids, they don't like to be held back, it is like 'well if you can't tell me what you want, I am going to go play.' So she is left out a bit because of that. – Georgia (mother of a 5‐year‐old girl)</p> <hd id="AN0066716044-15">Competing family responsibilities</hd> <p>Parents reported that they themselves often acted as a barrier to their child's participation in activity. Some children required one‐on‐one supervision to participate because of safety concerns or behavioural issues. If parents were required to provide the supervision, they often encouraged their child to engage in sedentary activities instead because they didn't have the time to supervise a physical activity. The time and finances involved in raising a child with a disability while trying to manage the responsibilities of home and work often meant that their child's physical activity needs were not a priority.</p> <p>I have all these great ideas of how I am going to get her on a bike but I never actually get to do it. – Rebecca (mother of a 9‐year‐old girl)</p> <p>Parents also described themselves as being overprotective. Some parents found they were less inclined to search for physical activity opportunities and discouraged their child's participation in formal sporting activities as a protective mechanism if they felt their child would be vulnerable in this setting.</p> <p>I don't want him to get disappointed or hurt . . . that is probably my weakness, I am protecting him too much. – Hannah (mother of a 10‐year‐old boy)We can't leave her on her own so she has to have someone with her all the time. So that makes caring for her constant . . . a fulltime job. – Amy (mother of a 17‐year‐old girl)</p> <hd id="AN0066716044-16">Reduced physical or behavioural skills</hd> <p>Parents indicated that children with poorer motor skills and a lack of coordination were less likely to engage in physical activity. They talked about the issue that as their children got older, the gap in physical and cognitive skills between them and their typically developing peers widened, limiting their participation even more, especially in mainstream activities.</p> <p>The guys at footy are fantastic with him but they are getting older so therefore the gap becomes wider . . . it is more in an intellectual way that the gap gets wider. – Grace (mother of a 16‐year‐old boy)All the kids can ride their bicycles and he can't . . . he is getting frustrated that he can't keep up with the other kids and some of them are even younger then him. – Hannah (mother of a 10‐year‐old boy)</p> <p>Behavioural issues such as non‐compliance were also highlighted by parents as a barrier to participation in formal activities in particular. Typical comments included their child's increased frustration when engaging in a challenging activity unless managed carefully by parents or instructors.</p> <p>He will get frustrated . . . if he is playing cricket and he goes out on the second ball he is not happy about it . . . he has had to learn that that is just the way it is. – Olivia (mother of a 10‐year‐old boy)</p> <p>The participants went on to say that if their child didn't enjoy an activity, they would not initiate it or participate in it. In fact, parents indicated that if their child was given a choice they would often choose a passive activity</p> <p>She is more of an arty sort of girl, she likes to colour and jigsaws and sing. . . . She is not sporty. – Katie (mother of a 16‐year‐old girl)</p> <hd id="AN0066716044-17">A lack of accessible programmes</hd> <p>Parents reported a lack of mainstream programmes that were willing to enrol their child with Down syndrome. They believed that a lack of staff, time restraints and a lack of education were reasons that prevented their child from being included. Other parents believed that a lack of advertised events meant that they were less proactive in sourcing out programmes as they did not feel welcome. Parents expressed frustration because of preconceived ideas, inaccurate stereotypes and the implications of using the word 'disability', believing that they automatically generated negative attitudes and exclusive behaviours which prevented their child's participation in formal activities.</p> <p>You don't often see an advertisement . . . come and join your local football club, all abilities welcome. – Olivia (mother of a 10‐year‐old boy)Attitude is one of the bigger problems with sport. – Martin (father of a 6‐year‐old girl)</p> <hd id="AN0066716044-18">Discussion</hd> <p>Children with Down syndrome were more likely to engage in physical activity when their parents and families provided ongoing encouragement and were actively involved themselves or when there was social interaction as part of the activity. These themes are consistent with previous literature which suggests that a child's physical activity levels strongly correlates to parent encouragement, role modelling and active involvement ([<reflink idref="bib5" id="ref62">5</reflink>]) and that people with Down syndrome like to participate in activities with other people ([<reflink idref="bib34" id="ref63">34</reflink>]; [<reflink idref="bib31" id="ref64">31</reflink>]). Educating and promoting physical activity to parents ([<reflink idref="bib15" id="ref65">15</reflink>]), providing structured opportunities for families to participate in physical activity together and emphasising a social component in activity programmes may increase the amount of activity that children with Down syndrome undertake.</p> <p>A child's attributes or their associated conditions were reported as being both a barrier and a facilitator of physical activity (for example hypotonia, congenital heart disease, obesity and decreased cognitive ability were perceived as barriers; good physical and communication skills were perceived as facilitators). These conditions may decrease activity levels because of their influence on body structure and function. These findings are consistent with previous literature examining adults with Down syndrome which found obesity, heart conditions and gout were barriers to participation ([<reflink idref="bib31" id="ref66">31</reflink>]). Parental over‐protectiveness or concerns that activity might exacerbate these conditions may also be a factor. Physical activity is beneficial for many of these conditions ([<reflink idref="bib42" id="ref67">42</reflink>]; [<reflink idref="bib39" id="ref68">39</reflink>]); so there is a role for health professionals and recreation industry staff to help educate families who are unaware of the benefits of activity. A related subtheme, also consistent with previous literature ([<reflink idref="bib34" id="ref69">34</reflink>]), was that as children with Down syndrome get older it becomes difficult for them to keep up with their peers. Children with proficient motor skills were reported as more likely to enjoy physical activity and found it easier to participate. In some cases, these children had participated in early intervention programmes or one‐on‐one therapy to promote the development of their motor skills. Research suggests that children who participate in early intervention programmes are less likely to experience a decline in function with age, have a higher level of intellectual functioning ([<reflink idref="bib10" id="ref70">10</reflink>]) and can significantly improve their walking, balance and jumping skills ([<reflink idref="bib49" id="ref71">49</reflink>]). Skills programmes aimed at developing running, jumping, climbing, balance and balls skills from a young age in children with Down syndrome might have a long‐term influence on the amount of physical activity they undertake and should be considered part of family activities, structured therapy, early intervention programmes and school curriculum.</p> <p>Our study identified more facilitators to activity than previous studies, perhaps because this was a specific aim of the study. Contextual factors might also be relevant; the Victorian Government implemented a 10‐year State Disability Plan in 2002 promoting the participation of people with a disability in physical activity ([<reflink idref="bib46" id="ref72">46</reflink>]). Other Australian‐based programmes promote integration by providing resources and guidelines to assist with the participation of individuals with ID in physical activity ([<reflink idref="bib23" id="ref73">23</reflink>]). For example, the <emph>Coaching Athletes with Disabilities</emph> ([<reflink idref="bib3" id="ref74">3</reflink>]) and the <emph>Willing and Able</emph> programme ([<reflink idref="bib13" id="ref75">13</reflink>]) were designed for teachers and coaches to assist people with disability to develop and learn activity skills. They provide information, planning tools, guidelines and suggestions about how to plan and conduct activities for people with varying abilities. Many of the principles and practices were reported to have been adopted by national sports groups and also to have provided links between schools and community organisations in encouraging active recreation ([<reflink idref="bib23" id="ref76">23</reflink>]). These initiatives could be one of the reasons why parents in this study identified successful facilitators to physical activity.</p> <p>Many of the perceived facilitators are similar to those for children with typical development such as programme availability, enjoyment, skill level, parent support and sibling involvement ([<reflink idref="bib47" id="ref77">47</reflink>]; [<reflink idref="bib41" id="ref78">41</reflink>]). Structured accessible programmes were reported as an important facilitator regardless of whether they were mainstream or segregated. This suggests that individuals developing physical activity programmes for children with Down syndrome can draw on successful strategies used to promote physical activity among children with typical development. It is also suggested that instructors and coaches who understand the physical limitations that Down syndrome may present with and are able to make appropriate adaptations to physical activity, provide these children with opportunities which cater for their individual needs and abilities. However, parents of children with Down syndrome are often required to educate instructors and coaches about how to engage their children with Down syndrome in physical activity, something which is not required of parents of typically developing children. Therefore, support strategies for instructors and coaches also need to be developed so that this additional burden is offloaded from parents of children with disability.</p> <p>Many of the children in this study had difficulty participating in activity because of a lack of social, cognitive and physical skills. This is similar to children with ID and physical disability ([<reflink idref="bib29" id="ref79">29</reflink>]; [<reflink idref="bib44" id="ref80">44</reflink>]; [<reflink idref="bib24" id="ref81">24</reflink>]; [<reflink idref="bib25" id="ref82">25</reflink>]). Key differences in the barriers to activity identified for children with ID compared with children with physical disabilities were that for the latter, a lack of physical access, equipment and assistive devices were major barriers ([<reflink idref="bib21" id="ref83">21</reflink>]; [<reflink idref="bib1" id="ref84">1</reflink>]; [<reflink idref="bib27" id="ref85">27</reflink>]; [<reflink idref="bib25" id="ref86">25</reflink>]; [<reflink idref="bib28" id="ref87">28</reflink>]), while a lack of cognitive ability and communication skills were more significant barriers for children with ID. This suggests flexible and accessible physical activity programmes are needed to cater for the diverse needs of children with different disabilities.</p> <p>Many of our data are consistent with the Health Belief Model. This is an established health behaviour theory which attempts to explain and predict health‐related behaviours ([<reflink idref="bib17" id="ref88">17</reflink>]). It suggests that individuals are more likely to engage in behaviours if they understand the benefits, if they believe the benefits outweigh the barriers of engaging in the activity and if the behaviour is related to a positive experience ([<reflink idref="bib22" id="ref89">22</reflink>]). Parents in this study acknowledged the positive impact that activity has on their child's fitness levels, communication, physical and social skills. However, these children were often inactive as the perceived benefits didn't outweigh the existing barriers such as a lack of programmes, negative attitudes or exclusive behaviours. This suggests the negative effect of past experiences and the barriers to activity were more likely reasons for inactivity than a lack of knowledge.</p> <p>A strength of this study is that it deepens understanding of why an estimated 58% of Australian children with Down syndrome do not partake in enough physical activity ([<reflink idref="bib43" id="ref90">43</reflink>]). Data on the facilitators of activity will also inform future studies to identify and implement successful activity programmes to encourage and enhance the participation of children with Down syndrome. Our findings may also be used by clinicians and health promotion personnel to provide advice, encouragement and support to parents, teachers and programme instructors in order to increase the amount of physical activity that these children undertake.</p> <p>One of the limitations of the study was that it only included parents of children with Down syndrome. The barriers and facilitators identified by this group are likely to reflect family issues and not a broader spectrum of issues such as policy. Findings from previous studies suggest parents provide in‐depth information on family matters such as financial issues, time constraints and accessibility to programmes ([<reflink idref="bib32" id="ref91">32</reflink>]; [<reflink idref="bib9" id="ref92">9</reflink>]; [<reflink idref="bib29" id="ref93">29</reflink>]; [<reflink idref="bib34" id="ref94">34</reflink>]), children identify personal or peer‐related determinants of physical activity ([<reflink idref="bib21" id="ref95">21</reflink>]; [<reflink idref="bib1" id="ref96">1</reflink>]; [<reflink idref="bib25" id="ref97">25</reflink>]) and support people (e.g. personnel from school boards and recreation departments) provide data relating to programmes and policies ([<reflink idref="bib50" id="ref98">50</reflink>]). Multiple sources could be used in future research to ensure comprehensive data are obtained ([<reflink idref="bib33" id="ref99">33</reflink>]).</p> <p>A second limitation was that participants self‐selected into the study and that parents who were interested in physical activity were more inclined to participate. It is also possible that these parents were predisposed to being active and that their children were more physically active than other children with Down syndrome. However, these individuals were also likely to be familiar with physical activity opportunities and were able to provide insight into why their children participate in physical activity and how they have overcome barriers. They may have been more resourceful in overcoming existing barriers to activity. This information may be useful for providing guidance to parents whose children are currently inactive. Future research needs to concentrate on understanding more about the individuals who find it difficult to engage in activity and establishing why they cannot overcome their perceived barriers to activity. Furthermore, data on the socio‐economic status of the participants were not collected. Such information would be beneficial in further research studies as time availability and access to resources appear important to engagement in physical activity for children with a disability and this may differ depending on socio‐economic background.</p> <hd id="AN0066716044-19">Conclusion</hd> <p>The results of this study highlight the importance of supporting and educating families to encourage the participation of their child with Down syndrome in physical activity, the need to participate in an active lifestyle from an early age and the effect that common characteristics associated with Down syndrome can have on maintaining an active lifestyle. Although many of the factors influencing a child with Down syndrome's physical activity levels are similar to children with other disabilities and those with typical development, there are also several determinants which are unique and specific to children with Down syndrome. Future research needs to concentrate on successful methods of eliminating barriers to physical activity including negative attitudes to disability in the community, and a lack of appropriate programmes for children with Down syndrome. 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  Data: Identifying the Barriers and Facilitators to Participation in Physical Activity for Children with Down Syndrome
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  Data: <searchLink fieldCode="DE" term="%22Research+Needs%22">Research Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Physical+Activities%22">Physical Activities</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Relationship%22">Interpersonal Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Interaction%22">Interaction</searchLink><br /><searchLink fieldCode="DE" term="%22Disabilities%22">Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Interviews%22">Interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Identification%22">Identification</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Role%22">Family Role</searchLink><br /><searchLink fieldCode="DE" term="%22Educational+Strategies%22">Educational Strategies</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Parents%22">Parents</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1365-2788.2011.01425.x
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0964-2633
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Many children with Down syndrome do not undertake the recommended amount of daily physical activity. The aim of this study was to explore the barriers and facilitators to physical activity for this group. Methods: Eighteen in-depth interviews were conducted with 20 parents (16 mothers, 4 fathers) of children with Down syndrome aged between 2 and 17 years to examine what factors facilitate physical activity and what factors are barriers to activity for their children. The participants were recruited through a community disability organisation that advocates for people with Down syndrome and their families. Interviews were recorded, transcribed and independently coded and analysed by two researchers using thematic analysis. Results: Four themes on facilitators of physical activity were identified: (1) the positive role of the family; (2) opportunity for social interaction with peers; (3) structured accessible programmes that make adaptations for children with Down syndrome; and (4) children who were determined to succeed and physically skilled. Four themes on the barriers to physical activity were also identified: (1) characteristics commonly associated with Down syndrome; (2) competing family responsibilities; (3) reduced physical or behavioural skills; and (4) a lack of accessible programmes. Conclusions: The results highlight the important role of families in determining how much physical activity children with Down syndrome undertake and the effect that common characteristics associated with Down syndrome can have on maintaining an active lifestyle. Future research needs to concentrate on successful methods of encouraging physical activity, such as ensuring social interaction is part of the activity, and eliminating barriers to physical activity such as the a lack of appropriate programmes for children with Down syndrome. Implementing these strategies may encourage children with Down syndrome to participate more frequently in a physically active lifestyle.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: Ref
  Label: Number of References
  Group: RefInfo
  Data: 51
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2011
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ943922
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ943922
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/j.1365-2788.2011.01425.x
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 14
        StartPage: 1020
    Subjects:
      – SubjectFull: Research Needs
        Type: general
      – SubjectFull: Physical Activities
        Type: general
      – SubjectFull: Down Syndrome
        Type: general
      – SubjectFull: Interpersonal Relationship
        Type: general
      – SubjectFull: Interaction
        Type: general
      – SubjectFull: Disabilities
        Type: general
      – SubjectFull: Interviews
        Type: general
      – SubjectFull: Identification
        Type: general
      – SubjectFull: Family Role
        Type: general
      – SubjectFull: Educational Strategies
        Type: general
      – SubjectFull: Children
        Type: general
      – SubjectFull: Parents
        Type: general
    Titles:
      – TitleFull: Identifying the Barriers and Facilitators to Participation in Physical Activity for Children with Down Syndrome
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Barr, M.
      – PersonEntity:
          Name:
            NameFull: Shields, N.
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 11
              Type: published
              Y: 2011
          Identifiers:
            – Type: issn-print
              Value: 0964-2633
          Numbering:
            – Type: volume
              Value: 55
            – Type: issue
              Value: 11
          Titles:
            – TitleFull: Journal of Intellectual Disability Research
              Type: main
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