Exploring parents' experiences of promoting physical activity for their child with intellectual disabilities

Physical inactivity is a growing international public health concern (World Health Organization, 2018). The need to address physical inactivity is particularly important for children and adolescents with intellectual disabilities, who participate in low levels of physical activity and are significantly less active than their typically developing peers (Boddy, Downs, Knowles, & Fairclough, 2015; Einarsson et al., 2015). These low levels of physical activity are insufficient to gain the clinically meaningful physical and mental health benefits associated with physical activity (Ahn & Fedewa, 2011; Biddle & Asare, 2011; Janssen & LeBlanc, 2010). Since children and adolescents with intellectual disabilities have various chronic health conditions and experience significant health inequalities, such as an increased prevalence of anxiety and obesity and reduced cardiorespiratory and muscular function, promoting physical activity is therefore essential to improve the health of this population (Maiano, 2010; Oeseburg, Dijkstra, Groothoff, Reijneveld, & Jansen, 2011). Children and adolescents with intellectual disabilities, however, face numerous barriers to being physically active. The socioecological model provides a useful framework for categorizing types of barriers as either intrapersonal, interpersonal, organisational or environmental, and has been used in previous studies which have categorized barriers to physical activity faced by children with intellectual disabilities (Bronfenbrenner, 1979; Must, Phillips, Curtin, & Bandini, 2015). Using this framework, existing research demonstrates that children and adolescents with intellectual disabilities face intrapersonal barriers relating to their disabilities, such as Received: 25 February 2020 | Revised: 4 June 2020 | Accepted: 20 July 2020 DOI: 10.1111/jar.12793


| INTRODUC TI ON
Physical inactivity is a growing international public health concern (World Health Organization, 2018). The need to address physical inactivity is particularly important for children and adolescents with intellectual disabilities, who participate in low levels of physical activity and are significantly less active than their typically developing peers (Boddy, Downs, Knowles, & Fairclough, 2015;Einarsson et al., 2015). These low levels of physical activity are insufficient to gain the clinically meaningful physical and mental health benefits associated with physical activity (Ahn & Fedewa, 2011;Biddle & Asare, 2011;Janssen & LeBlanc, 2010). Since children and adolescents with intellectual disabilities have various chronic health conditions and experience significant health inequalities, such as an increased prevalence of anxiety and obesity and reduced cardiorespiratory and muscular function, promoting physical activity is therefore essential to improve the health of this population (Maiano, 2010;Oeseburg, Dijkstra, Groothoff, Reijneveld, & Jansen, 2011).
Children and adolescents with intellectual disabilities, however, face numerous barriers to being physically active. The socioecological model provides a useful framework for categorizing types of barriers as either intrapersonal, interpersonal, organisational or environmental, and has been used in previous studies which have categorized barriers to physical activity faced by children with intellectual disabilities (Bronfenbrenner, 1979;. Using this framework, existing research demonstrates that children and adolescents with intellectual disabilities face intrapersonal barriers relating to their disabilities, such as reached at this point. Participants were four biological mothers, three biological fathers and one stepfather, and included one couple. The majority of participants (n = 7) were White British and married. Deprivation was assessed using the Scottish Index of Multiple Deprivation (http://www.scotl and.gov.uk/Topic s/Stati stics /SIMD), based on participant's postcodes, and categorized from most deprived (quantile 1) to least deprived (quantile 5). Five participants lived in areas of the highest deprivation, two lived in areas in quantile 2, and one in quantile 4. All the schools and clubs where participants were recruited from were based in areas of the highest deprivation.
Participants' children with intellectual disabilities were predominately male (n = 6; female = 1) and aged 10 to 18 years. Based on parent reports, intellectual disabilities ranged from mild to moderate and included additional conditions to intellectual disabilities, for example autism and epilepsy. Six children had at least one sibling, with one being an only child (full demographic data are presented in Table 1).

| Procedure
This study was approved by the Medical, Veterinary, and Life Sciences College Ethics Committee, University of Glasgow. Prior to participation, written informed consent was obtained from all participants. Identification numbers were used to ensure confidentiality.
In-depth face-to-face interviews were conducted by one researcher. Interviews were conducted at a time and place that suited the participant; five interviews were conducted at the participant's home and two were conducted at the club the participants were recruited from. Interview duration ranged from 20 to 55 min. All interviews were recorded using a Dictaphone and transcribed verbatim.
Interviews were semi-structured and based on a broad interview script. Parents were asked about their experiences of promoting physical activity for their child with intellectual disabilities, which was guided by the following topics: parental/family role in promoting activity; experiences/views of structured activity programmes and clubs; motivations for promoting/not promoting physical activity; and child's experiences of physical activity. The interview script was developed based on past literature to cover topics relevant to parents' experiences of promoting physical activity for their child with intellectual disabilities with as much breadth and depth as possible.

| Data coding and analysis
Data were analysed using thematic analysis, which enabled the identification, analysis and reporting of patterns/themes within the data set (Braun & Clarke, 2006). This thematic analysis was conducted in accordance with Braun and Clarke's (2006) six-phase approach, which consisted of familiarization with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. To improve credibility, there was triangulation of the investigators, with two researchers independently conducting the first five phases of the analysis. Both researchers then met to discuss their interpretation of the data and agreed upon the final themes.

| RE SULTS
Four themes were identified from the data that represent parents' experiences of promoting physical activity for their child with intellectual disabilities: importance of social support; parent fears; parent responsibilities; and integrating their child into sport and play.
Nine subthemes were also identified, which have been described in Table 2.

| Importance of social support
Social support influenced parents' ability to promote physical activity. Informational support was essential for finding physical activity opportunities for their child with intellectual disabilities. Parents themselves also faced high levels of exclusion due to having a child with intellectual disabilities and felt they did not receive enough support. As a result, this has a detrimental impact of their ability to promote physical activity and identify appropriate opportunities for their child to be active.

| Informational support
Social support, in the form of informational support, was important for identifying physical activity opportunities that were suitable and inclusive of children and adolescents with intellectual disabilities. A lack of informational support left parents feeling unequipped to find activity opportunities for their child. one place that you could go and it would tell you such and such does this and that but it is very hard. [ID03] Due to the lack of available information, parents relied upon information sharing between other parents of children with intellectual disabilities. However, information on inclusive clubs/opportunities is mostly shared between parents already involved in inclusive clubs; parents who were not part of an information-sharing "circle" did not benefit from this informational support, resulting in the further exclusion of these parents.

| Social exclusion
A subtheme of social exclusion was identified relating to parents of children with intellectual disabilities. This sense of social isolation was linked to being appraised as "poor parents" based on their child's behaviour, because of their intellectual disabilities. This resulted in parents excluding themselves to avoid experiencing these negative situations.
I felt wherever I go people will be judging me so I isolated This social exclusion limits opportunities for social support and reduces parents' confidence to go out socially with their child, which limits the opportunities they have to promote physical activity. The perceptions of other people regarding intellectual disabilities also made parents feel that their child's intellectual disabilities were their fault.
It's that old baggage when a mother has a child severely handicapped, or has difficulties, or learning difficulties,

they [mother] have done something wrong in their life
and this is retribution…we are still thinking backwardly. [ID02] Other people's negative views contribute to social exclusion, which reduces access to social support and limits the parent's ability to promote and find physical activity opportunities.

| Parent fears
The theme of parent fears relates to parents' understanding and conscious decision making on the promotion of physical activity that is influenced by their fears. Parents reported fears of safety and bullying, and fears regarding their child's future and long-term health.

| Safety and bullying
All parents acknowledged some level of fear about their child participating in physical activity due to the negative behaviours of others towards their child. Bullying from other children was a concern, with their child's intellectual disabilities being the cause of bullying.
This was identified across all contexts, both structured and free-play environments.
He will say people have been hitting him. He has low tone muscle in his lip so he used to drool all the time and a lot of the kids wouldn't play with him. [ID03] Safety was also raised as a concern and prevented some parents from letting their child play outside.
It was also a risk if you are taking them outside, they can't judge if they are crossing the road, how far the car is travelling, how much time they need to cross the road and there is the danger aspect to that as well. [ID05] Therefore, parents feel they are unable to send their child to sports clubs due to fears of bullying and do not feel able to let their child play outside due to safety fears. This desire to protect their child, combined with the lack of available inclusive opportunities leaves parents with few options to promote activity safely.

| Child's future
Parents discussed worrying about their child's future, which made them want to promote physical activity so their child can gain longerterm health benefits. Parents viewed supporting physical activity in childhood as a way for their child to be healthier in adulthood.
you are sowing the seed that later on in life he will get a bike and he will actually ride a bike. So what you are doing is putting down the foundations just now for later on. [ID05] Numerous parents also reported concerns for the future when they are no longer able to support their child or when they are no longer alive. [ID04] Therefore, parents report mixed feelings regarding promoting activity. Parents want their child to get the benefits of activity and encourage long-term health; however, they also want to protect their child from the unnecessary bullying and potential safety concerns that come with physical activity. This highlights that the problem does not relate to parents not wanting to promote activity-the issue is supporting parents to overcome the barriers they face when trying to promote activity.

| Parent responsibilities
Parents put a great deal of pressure on themselves to ensure that all their child's needs are met, including finding opportunities for activity. However, the responsibilities faced by parents resulted in numerous sacrifices, which further contributed to parents' social exclusion.

| Putting their child first
Parents described always prioritizing their child, which resulted in, sometimes significant, sacrifices. This is in complete contrast to the lack of support or interest from others and is another way in which parents are not given the support they need. Prioritizing their child was discussed relating to various aspects of parent's lives. One parent reported leaving their job, as they perceived they and the child's mother were the only people who could ensure all their child's need are met.
I had to leave my job, I don't think anyone could cope with him besides me and his mother because his condition needs understanding and it's hard. [ID04] However, not all parents were in supportive relationships, with one parent discussing that her child's father did not accept their child's intellectual disabilities and was aggressive towards the child. This resulted in the mother prioritizing her child and leaving that relationship. This sense of putting their child first was also relevant to teaching their child new skills. One father acknowledged that other people would not be willing to put in the time or effort to teach their child the skills required to be active; therefore, it was the responsibility of the parent to persevere to support their child and enable understanding and skill development.

A lot of people won't persevere …So a lot of people cop out. I think what you have to do with a lot of children with additional needs is persevere and really ingrain into
it. There is no reason why they can't do it. [ID05]

| Finding inclusive opportunities
Parents discussed that many inclusive clubs and programmes were closing due to lack of funding, which left parents with limited options.
This includes school clubs that are stopping due to lack of funds: This also applies to inclusive sports clubs.
your child is happy with this one and the next time you go it's not there because they could not provide it, they don't have funding. [ID04] Parents also discussed that they found it difficult to identify inclu- Although parents highlighted the lack of available information relating to inclusive opportunities for activity, parents also discussed that they still feel a responsibility to try and find information through whatever means they can.

| Integrating their child into sport and play
The theme of integrating the child into sport and play relates to the difficulties that parents, and their child, have experienced in these contexts. Specifically, how stigma and difficulties relating to intellectual disabilities have negatively impacted inclusion. These are important issues as they impact children's views of physical activity, which can impact inclusion and limit the benefits that children and adolescents gain from physical activity.

| Stigma and lack of understanding
Parents discussed that they felt their child with intellectual disabilities was excluded from mainstream sports clubs as coaches and staff did not have the knowledge required to enable their child to be included.
We took him to an athletics clubs when he was younger and he was put in with the girls because he was smaller than everybody else. They didn't know what to do with him and that was a big problem. [ID06] Parents were aware of the negative attitudes and prejudice their child faced because of their intellectual disabilities, and emphasized a desire to protect their child from it. This negatively impacted parents' promotion of physical activity.

"The thing I say about protecting them [children with in-
tellectual disabilities] is protecting them from other people's attitudes." [ID05] One parent also discussed that in addition to facing prejudice because of her child's intellectual disabilities, she also experienced racism. Therefore, this intersectionality of having a disabled child and being from an ethnic minority resulted in further exclusion and discrimination when trying to integrate into physical activity contexts.

| Disability-related barriers
Parents discussed problems finding inclusive opportunities that accounted for disability-related factors, which impacted children's ability to participate in physical activity. Parents discussed how their child faced numerous physical barriers to participation. These included the contrast between children's chronological and developmental age, where their child wanted to play with younger children but risked hurting them as they were bigger and stronger.
Communication and emotional levels also negatively impacted children with intellectual disabilities integrating into sport and play.

"Yes it [intellectual disabilities] does limit him…He is not so good at making friends, he does make friends but obviously the communication is an issue and he doesn't understand when he is playing with the wee ones, he doesn't understand his own strength"
[ID03] "it is difficult [playing with other children] because of his difficulty in expressing and communicating." [ID05]

| Benefits of inclusive clubs
Parents discussed the numerous benefits of physical activity they had seen for their child, which encouraged parents to promote activity and resulted in feelings of pride. Interestingly, parents consistently noted the biggest improvements they saw in their child was related to confidence. Parents discussed having a knowledge of the benefits of physical activity for their child. This is important as parents' understanding of the benefits of physical activity can determine whether or not parents encourage and support their child to be active (Columna et al., 2019). This was confirmed in the present study as all parents reported being proactive in searching out information and activity opportunities, with their motivations including wanting their child to be healthy. In order to find information about available inclusive activity opportunities, parents emphasized the importance of social support networks of other parents of child with intellectual disabilities. However, this was not available to all parents, with high levels of social exclusion discussed. This could be partially attributed to the phased closing of many special education needs schools in Scotland, with children integrating into mainstream schools (Scottish Government, 2012). Therefore, this might limit the opportunities for parents to develop social support networks with other parents of children with intellectual disabilities. This highlights that although parents want their child to be active, the barriers they face limit opportunities and restrict parental promotion of physical activity.
Experiencing stigma due to having a child with intellectual disabilities was reported, to varying extents, by all parents in the present study. This is termed "courtesy stigma," where parents of people with intellectual disabilities experience abuse or are considered to blame for their child's intellectual disabilities (Birenbaum, 1992). However, this is the first time the effect of courtesy stigma has been discussed in a physical activity context, whereby experiences of stigma contributed to parental social isolation and exclusion to avoid this negative experience, which then reduced the opportunities for their child to be active. Furthermore, an intersection between race/ethnicity and intellectual disabilities was also described by one participant, a single mother and seven participants lived in areas of high deprivation that could result in additional barriers to accessing opportunities for their children to be active, for example financial barriers. It is therefore important to consider multiple sources of inequalities that may further reduce access to physical activity resources for parents.
Parents also discussed that their child faced prejudice from other children and parents because of their intellectual disabilities, which was severe enough for some parents to regard this as bullying.
Again, stigma is commonplace against children and adolescents with intellectual disabilities, as people with intellectual disabilities are one of the most stigmatized groups in society (Ali, Hassiotis, Strydom, & King, 2012). This highlights that stigma and exclusion of children and adolescents with intellectual disabilities is not specific to physical activity environments but represents a wider societal issue.
These negative experiences of children occurred in both free-play environments and in mainstream sports clubs, which is concurrent with previous literature (Grandisson, Tétreault, & Freeman, 2012;Menear, 2007). Children's negative experiences of mainstream clubs, including poor relationships with staff and other children, is a concern, as it has been suggested that developmental benefits of activity are dependent on social and contextual factors, for example interactions and relationships with peers, coaches and parents.
Therefore, children who are participating in mainstream clubs, but are not fully integrated, may not be getting the same developmental benefits as their typically developing peers (Holt & Neely, 2012). In the context of outdoor free play, parents' safety concerns limited children's opportunities for activity, which is a previously reported concern of parents of children and adolescents with intellectual disabilities (Alesi & Pepi, 2015;Barr & Shields, 2011). Therefore, as issues are present in both mainstream clubs and outdoor free-play contexts, parents rely on inclusive clubs to provide safe and supporting environments for their child to be active.
Parents whose children were involved in inclusive clubs spoke highly of the benefits, for example increased confidence, suggesting that inclusive clubs are effective and positive for children and adolescents with intellectual disabilities and their parents. Nevertheless, many parents found it difficult to find inclusive opportunities due to a lack of information and availability of inclusive clubs. Availability was linked to limited funding opportunities for clubs and to travel times. Issues relating to the time and cost requirements of inclusive programmes have been previously reported (Grandisson et al., 2012;Levinson & Reid, 1991;Menear, 2007). However, this was the first study to report that inclusive clubs are closing due to lack of funding. As international community-based activity programmes, such the Special Olympics, are less prevalent in the UK compared to other countries, for example the USA, most UK-based inclusive sports clubs are independently run and reliant on volunteers and donations (Harada, Siperstein, Parker, & Lenox, 2011). Therefore, this could be a problem specific to the UK due to recent recessions and austerity, which disproportionately impact people with intellectual disabilities, in particular voluntary and community organisations (Jones, Meegan, Kennett, & Croft, 2016;Malli, Sams, Forrester-Jones, Murphy, & Henwood, 2018).
From a theoretical perspective, the socioecological barriers that parents reported their children to experience are all supported by previous research (Columna et al., 2019;McGarty & Melville, 2018;Sterman et al., 2016). This demonstrates that the barriers faced are consistent across countries, which has important implications for future research. Due to these common contextual factors, if an effective intervention is developed, it has the potential to be generalized across countries.