Proposal
The Need for Participation of Children with Severe Disabilities in Physical and Social Activity Programs
Abstract
The research proposal has the purpose of ascertaining the need for participation of disabled children in physical and social activity programs. It has been noted in the research gap that there is less research in this field and this field requires research to explore the issue or phenomenon. In this research proposal, the target population from London and experts and parents there would participate. To find the gap and have a present idea of the issue, a rich literature review has enriched this proposal. It has set the stage for further research in the field. Benefits of physical and social activities for disabled children are numerous, but there is lack of research in the context of the UK. The literature and existing research call for the need to explore the phenomenon. For this purpose, qualitative research methodology has been proposed. It is the quality of qualitative research methodology that explores a phenomenon in its detail. Qualitative research ensures providing detailed and in-depth information about participants. As a result, a phenomenon becomes understandable. Parents and experts would be part of the research as per this proposal. Findings from proposed research would offer insights and valuable contributions to the educational system. As a result, the educational system would be more inclusive and prepared to address the social and physical needs of children with disabilities.
1-Introduction
Globally, there are around 150 million children under 14 years of age who have been diagnosed with some form of disability (University of Cambridge Research, 2017). In the UK, there are 800,000 children under the age of 16 suffering from disabilities or 1 in 20 children, and the majority of them are confined to live in their homes without formal education or social support (Bartley, 2017). The annual cost of raising a disabled child is estimated to be three times the cost of raising a non-disabled child (Bartley, 2017), the burden of which is further aggravated by the fact that families with disabled children make 23% income than those without disabled children (Office of National Statistics, 2019). Moreover, the fact that almost all the disabled children are brought up at home is alarming, as families may not be equipped with the knowledge or skills for providing for the best care. More specifically, in addition to the educational needs of such children, families may not be able to generate the adequate amount of physical, intellectual or social stimulation for them (Williams, Pollard, Langley, Houghton, & Zozimo, 2017). Research has indicated that people with disabilities do poorly in terms of educational and economic indicators, and hence are prone to chronic poverty (Shields, Synnot, & Barr, 2011). Further, people with disabilities continue to suffer from additional health-related problems (Bartley, 2017). The situation, therefore, calls for an immediate focus on the needs of children with disabilities, to develop and deliver a more comprehensive plan of care for them. The UK government has a well-developed educational law that empowers children with disability to get educated in mainstream schools without any discrimination or disadvantage (Williams et al., 2017). The public school’s system is required to identify children with special educational needs and disabilities (SEND) and to provide adequate adjustments to support their continued educational development. However, in spite of legal provisions, there has been a 57% increase in the number of children with disabilities who had to be home-schooled between 2012 and 2017 (Bartley, 2017) See Appendix. While there may be diverse reasons for this fall in enrolment, the fact remains that children with disabilities are not getting the required support. Home schooling not only places a serious burden on the parents and undermines potential learning of children with disabilities, it also fails to substitute the benefits for the physical and social activity that school-going children derive.
The current research therefore proposes to focus on highlighting the benefits that accrue to children with disabilities when they are given an opportunity to participate in the physical and social activities associated with mainstream schooling. It is expected that the research will provide useful insights and convincing evidence to make a case for raising awareness of the benefit and need of the physical and social activities for severely disabled children.
2-Literature Review
2.1-Search Strategy and Inclusion Criteria
The literature review will be undertaken by searching databases like: CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsychINFO, SocINDEX and Academic search complete. The research aims to develop an understanding of the benefits of physical and social engagement of children with severe disabilities, and as such, the following keyword phrases will be used for obtaining papers for review:
Table 1: Search Keyword Phrases
| Physical and social needs of children with severe disabilities |
| Programs addressing physical and social needs of children with severe disabilities |
| Needs of children with severe disabilities |
| Benefits of social and physical activity for children with severe disabilities |
In order to come up with relevant and latest research, the criteria for inclusion of research papers in the review will be:
Table 2: Inclusion Criteria
| Peer Reviewed Papers only |
| Papers from 2001 and later only |
| English Language |
| Papers limited to children with severe disabilities only |
2.2-Review of Literature
2.2.1-Risks and Incidence Lack of Physical Exercise and Social Engagement for Children with Severe Disabilities
There is an increasing amount of evidence from research that children with severe disabilities are largely inactive, owing to numerous factors as discussed in a later section of the literature review. In research on children suffering from Spina Bifida (SB), a congenital deformity, it was found that 76% of the surveyed participants were inactive, indicating a large gap in available support for such children to participate in physical and social activities (Schoenmakers et al., 2009). Other scholars have found that children with severe disabilities are also at a higher risk of obesity and suffer from low aerobic capacity as compared to their peers with no disabilities (Buffart et al., 2008a).
Children who have low activity levels are likely to be at risk for components of metabolic syndrome (Buffart et al., 2008a) and secondary ailments related to obesity and an inactive lifestyle (Short & Frimberger, 2012; Buffart et al., 2008b). In addition, several studies have found that children with severe disabilities who are also inactive, are likely to suffer from several additional problems related to social adaptation, lack of control of their sensory motor functions, general lack of attention span and slowed learning process, and enhanced dependence of caregivers (Ivanyi et al., 2015).
Table 3: Summary of Research on Incidence and Risk of Inactivity among Children with Severe Disabilities.
| 76% of children with Spina Bifida in active | Schoenmakers et al, 2009. |
| Aerobic Capacity at 42% only for children with severe disabilitues | Buffart et al., 2008a |
| Obesity, low muscle strength | Short & Frimberger, 2012; Buffart et al., 2012 |
| High risk of metabolic syndrome | Buffart et al., 2008 |
| sensory-motor function impairment | Ivanyi et al., 2015 |
| Lack of adaptation and enhanced dependence | Ivanyi et al., 2015 |
| Increased cardiovascular risk | Buffart et al., 2008b; Short & Frimberger, 2012. |
2.2.2-Benefits of Physical and Social Activities for Children with Severe Disabilities
Benefits of Physical Activity
While much research evidence is available for direct linkages between physical activity and quality of life among children without disabilities, there is paucity of research in the context of children with severe disabilities. Some research with children with cerebral palsy has found that physical activity benefits include maintenance of independence and sustaining physical function in such children (Andersson & Mattsson, 2001) and one research has indicated that physical activity enhances social and physical quality of life as well as happiness among children with cereberal palsy (Maher, Toohey, & Ferguson, 2016).Similar positive benefits have been observed in several researches with children with Autism Spectrum Disorder (ASD), where researchers found that jogging led the children to decrease their maladaptive behaviors up to 40 minutes post exercise (Oriel, George, Peckus, & Semon, 2011; Nicholson, Kehle, Bray, & Van Heest, 2011). Other scholars have found similar positive outcomes in terms of reduction in maladaptive behaviours and greater attention span for children with severel disabilities, to up to 2 hours after exercise like cycling (Bass, Duchowny, & Llabre, 2009). Cycling has been shown to lead to enhanced self-efficacy in children with ASD (Todd, Reid, & Butler-Kisber 2010) and a decrease in repetitive compulsive behaviours in ASD children was reported with playing video games (Anderson-Hanley, Tureck, & Schneiderman, 2011).
There is also research that indicates that physical activity is correlated with enhanced cognitive outcomes for children without disabilities, which is presumed to make the case for existence of similar correlation between physical activity and cognitive function in children with ASD as well (Nicholson, Kehle, Bray, & Van Heest, 2011). Though direct evidence is lacking for children with severe disabilities, a substantial amount of research exists that has pointed out at significant cognitive improvements association with enhanced physical activity among children (Fedewa & Ahn, 2011; Chaddock et al., 2010).Researchers have also found that physical exercise, especially, aerobics, leads to enhanced attention span and better learning outcomes in children with severe disabilities (Pan, Tsai, & Hsieh, 2011). Similarly, scholars have found that exercise leads to better and quieter behavior from children with ASD, and better response from them during school activities (Bass, Duchowny, & Llabre, 2009). It is also important to note that positive benefits of exercise have been seen across a diverse range of exercises including swimming, cycling, horse-back riding and aerobics (Pan, 2010; Bass, Duchowny, & Llabre, 2009; Lang et al., 2010). More research is available that indicates additional activities like walking, jogging or snowshoeing can lead to positive outcomes in the form of enhanced attention span, reduction in maladaptive behaviours and greater participation in school tasks (Todd & Reid, 2006; Pan, 2008; Pan & Frey, 2006).
In addition to the benefits like cognitive enhancement and social adaptation of children with severe disabilities, physical exercise also has a more direct impact on their overall health. Regular working out on treadmills has been found to help maintain a healthy body mass index (BMI) for children suffering from autism (Pitetti, Rendoff, Grover, & Beets, 2007) and horseback riding has been found to lead to increased proficiencu in motot functions and sensory intergrative functions of children with severe disabilities (Pan, 2014).
Table 4: Summary of Research on Benefits of Physical Exercise among Children with Severe Disabilities.
| Benefits of Physical Activity | Authors |
| Happiness |
Maher, Toohey, & Ferguson (2016). |
| Physical quality of life, sustaining physical function, reduction in maldaptive behavior |
Andersson & Mattsson (2001); Maher, Toohey, & Ferguson (2016); Oriel, George, Peckus, & Semon, 2011; Nicholson, Kehle, Bray, & Van Heest, 2011; Todd, Reid, & Butler-Kisber, 2010; Anderson-Hanley, Tureck, & Schneiderman, 2011; Todd & Reid, 2006
|
| Social quality of life |
Maher, Toohey, & Ferguson (2016) |
| Independence | Andersson & Mattsson (2001); Pan & Frey, 2006 |
| Cognitive enhancement | Fedewa & Ahn, 2011; Chaddock et al., 2010; Nicholson, Kehle, Bray, & Van Heest, 2011; Pan, 2008; Pan & Frey, 2006; Pan, Tsai, & Hsieh, 2011 |
| enhanced attention span | Bass, Duchowny, & Llabre, 2009; Pan, 2010; Lang et al., 2010; Todd & Reid, 2006; Pan, 2008 |
| healthy body mass index (BMI) | Pitetti, Rendoff, Grover, & Beets, 2007 |
| motor and sensory functions enhancement | Wuang, Wang, Huang, & Su, 2010 |
Benefits of Social Activities
While there is some research focused on assessing the benefits of physical exercise for children with disabilities, there is even less research that has explored the role of enhanced social interaction opportunities for children with disabilities. However, there is some research to indicate that children with disabilities are likely to be excluded from their peer group activities as inclusive classrooms are not equipped with adequate support in the form of inclusive curriculums to generate such activities. Again, while several scholars have mandated that schools should create an inclusive environment where children with disabilities get a sense of belongingness and are included in social activities with their peer group, the theoretical dictats are not translated into practical implementation (Ostrosky et al., 2015). In the same way, there are theoretical models that have been discussed in literature that rely on the presumption that social stimulation and two-way social interaction provides positive benefits for children including those with disabilities (Bloemen et al., 2015). For example, Batorowicz, King, Mishra, & Missiuna (2016) developed a model where environmental centric approaches were integrated to person-centric approach to deliver an environment that enabled children to actively interact and collaborate in a social setting. Some research is also available that directly links the development of social skills with the presence of a stimulating social interaction and opportunities for engagement with others. More specifically, it has been found that children with disabilities, when allowed to operate in an unsctructured social environment were likely to build social adaptation skills (Brooks, Floyd, Robins, & Chan, 2015).
Table 5: Summary of Research on Benefits of Social Engagement among Children with Severe Disabilities.
| Social Interaction Research | Authors |
| Integrated model of teaching involving person-centric and environment-centric approaches for optimal social interaction and social benefits | Batorowicz, King, Mishra, & Missiuna 2016; Bloemen et al., 2015 |
| Peers do not choose children with disabilities for social engagement | Ostrosky et al., 2015 |
| Unstructured social engagement leads to social skill development | Brooks, Floyd, Robins, & Chan, 2015 |
2.2.3-Barriers to Physical and Social Activities for Children with Severe Disabilities
One of the main barriers preventing physical exercise and social interaction for children with disabilities is related to the system employed by the educational organizations. While, legally, all public schools and educational centers are required to ensure that children with disabilities are not discriminated against in terms of enrolment or equal treatment, most schools fail to go beyond conforming to the mere legal requirement (Bartley, 2017). Most schools are not equipped with playgrounds and facilities that can encourage students with disabilities to participate in physical activities. Further, the school teachers are often pre-occupied focusing on the cognitive needs of children with disabilities and may neglect their social and physical exercise needs (Bartley, 2017). Schools also do not hire expert coaches who are trained to meet the needs of children with disabilities (Alesi & Pepi, 2017). In addition to the factors related to the lack of equipment, facilities and provisions within the schools, the children with severe disabilities are also prevented from participating in physical or social interaction because of parental fears. Several scholars have found that parents’ anxiety, worries, beliefs and lack of confidence impacts on the children’s engagement in activities (Pitchford, Siebert, Hamm, & Yun, 2016; Alesi & Pepi, 2017). Also, lack of adequate equipment to facilitate physical movement of children with disabilities may reduce their ability to exercise (Ivanyi et al., 2015).
Table 6: Summary of Research on Barriers to Physical and Social Activities for Children with Severe Disabilities
| Barriers | Authors |
| Parental Beliefs | Pitchford, Siebert, Hamm, & Yun, 2016; Alesi & Pepi, 2017 |
| Unavailability of special needs coaches and trainers in schools | Alesi & Pepi, 2017 |
| Lack of walking aids for facilitating physical movement | Ivanyi et al., 2015 |
2.3- Research Gap
It is observed from the preliminary review of literature that physical exercise leads to several positive benefits in terms of behaviour management, cognitive enhancement, and overall health management of children with severe disabilities. However, it is also noted that there is lack of research in the context of the UK and more specifically, research from the perspective of parents or care givers is almost non-existant. Also, there is very little research that has dealt with the social interaction needs of children with disabilities. More profoundly, there is a lack of focus on evaluating the existing classrooms, which claim to be inclusive but may fall short on inclduing children with disabilities into any meanigful social interactions. Both physical and social activities have been found in literature to be linked with positive outcomes in terms of physical health, cognitive development, and social adaptation for children with disabilities. The fact that in spite of theoretical and empirical evidence supporting physical and social interaction for children with disabilities, there is lack of focus on developing such schools and institutions that may be equipped to deliver such tangible inclusion. Also, as noted in the introduction, the UK has seen a rise of 57% of children who are home schooled and do not have a constructed and structured developmental program to support them. There is a gap in literature, especially in the context of the UK and London, regarding the assessment of children with disabilities with respect to their physical exercise and social engagement needs. The current research is therefore proposed to address the issue in the context of children with disabilities residing within London, UK, and to propose a set of recommendations for meeting their needs.
3-Research Objectives
The following research objectives are therefore derived from the research gap:
– To explore from the perspectives of experts and parents the benefits of physical and social engagement for children with severe disabilities
– To explore from the perspectives of experts and parents, specific needs of children with disabilities in London regarding their physical and social engagement.
-To understand the barriers to engaging children with severe disabilities in physical exercise and social engagement
-To develop an understanding of how to make the educational system more sensitive and proactive for providing for the physical and social engagement of children with severe disabilities.
4-Research Questions
- What are the benefits of social and physical activities for severely disabled children?
- Is there a need to provide social and physical activity programs for severely disabled children in London, UK?
- What are some of the barriers that children with severe disabilities face to participating in physical exercise and social activities in London, UK?
- What recommendations can be made to the educational institutions to become more inclusive of children with severe disabilities in terms of providing opportunities for physical and social activities?
5-Research Methodology
The research proposes to adopt a phenomenological perspective that will help in attaining the research objectives and answering the research questions. As the preliminary review of literature has indicated, there is lack of research in the context of ascertaining whether the physical and social activity related needs of children with severe disabilities are adequately met, especially in the context of the UK. The current research will endeavour to explore the perspective of the parents and childcare experts, in order to develop a holistic understanding of the situation. A phenomenological perspective is therefore suited as it enables the inclusion of the opinions and perceptions of the people who are directly involved in the situation, and who may have expertise in the subject area (Bresler & Stake, 2017). A phenomenological stance is opposed to a positivistic perspective that postulates that reality is objective and independent of the context; instead, phenomenological perspective allows for the context to provide deeper and relevant insights into the problem under study (Creswell & Poth, 2016).
The research will be conducted using a qualitative research methodology approach. For the research, qualitative data would be gathered. Qualitative research would enable the research to have exploratory data on the issue with the help of parents and experts. As a result, it would be easier to reach findings. It is the attribute of qualitative research methods that enables expansive exploration of the problem (Creswell & Poth, 2016). Another possibility for methodology of proposed research may be mixed methods because it removes limitation of one research method (Bresler & Stake, 2017). But it may make the research lengthier and more complex. Considering the qualitative research methodology would be effective and would serve objective the best. As such, qualitative interviews are proposed for data collection from participants. The qualitative interviews will be conducted using experts from the care giving profession and parents of children with severe disabilities. Interview is the data collection tool that helps discover maximum information from participants.
A quasi-random sampling technique will be employed for selecting the samples. While a random sampling technique is considered to yield a more representative sample, often, based on the needs of the research and the limitations, it is a better approach to use a non-random approach (Bresler & Stake, 2017). In the current case, the research suffers from the limitation that it may not be possible to randomly select the experts or the families, and the selection may depend on the availability and consent of the participants. London-based non-governmental organizations (NGOs) that work with families with children with severe disabilities will be contacted in order to gauge their readiness to participate in research. These organizations will be asked to give permission to interview experts on their panel. It is expected that about 10 such interviews can be arranged. Next, the list of parents with children with severe disabilities will be obtained from the NHS database. From this list, 10 families residing in London will be shortlisted and will be chosen for the interview. These will be contacted over the phone to request participation, and if they agree, will be sent further details. Time for the interview would be finalized with them. It is expected that at least 50% of the respondents (50), will agree to participate in the research.
data collection will include qualitative, face-to-face or direct personal interviews with the experts and parents. Direct personal interview method is considered as a suitable method when phenomenological study is involved and the participants are experts and knowledgeable on the subject area, and hence are expected to provide detailed insights and information (Creswell & Poth, 2016). Parents would also offer their valuable information because they are guardian of disabled children and would provide valuable input to the research. Also, qualitative interviews allow the researcher to obtain further information in the form of contextual cues related to body language, non-verbal cues and voice intonations. A semi-structured questionnaire will be used that will contain open-ended questions, and which will allow the researcher to modify the questions during the interviews and needed (Creswell & Poth, 2016). The data will be collected in the form of notes that will be used to conduct a thematic content analysis to develop themes.
The data or responses from parents and experts and its content analysis would help understand the phenomenon. As a result, the information would be shared and analyzed to get findings. The use of qualitative research is because of its ability to offer maximum information on the phenomenon under study. Experts have their valuable information while parents have their direct experience because they are parents of their children.
The final data analysis will include the qualitative findings from the experts and parents to develop the discussion. The research is expected to provide insights about the need for physical and social engagement for children with severe disabilities, and to develop an understanding of the extent of unmet needs. The findings will be used to make recommendations for developing targeted physical and social engagement provisions for children in schools and extended school facilities.
The research will ensure validity and reliability by adhering to research rigour and ensuring that the research objectives and research questions are rooted in the research gaps, and that all data collection activities are performed with utmost ethical considerations (Bresler & Stake, 2017). The research participants will be provided with an informed consent form detailing the purpose of the research and their contributions, and only if they sign and give voluntary consent, will they be included in the research. Further, the research will also ensure that the participants’ privacy and confidentiality of their responses is maintained. Additionally, suitable measures will be taken to ensure that the participants are comfortable and there is no threat to their safety or security during the data collection phases. The participants will also be made to understand that they are free to leave the research at any point they deem to do so.
5-TimeLine
The research will be conducted over a period of 1 year. The following table gives the breakdown of the time plan.
Table 7: Time Plan
| Month 1 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | Month 8 | Month 9 | Month 10 | Month 11 | Month 12 | |
| Preliminary review of literature and research questions | * | |||||||||||
| Literature Review | * | * | * | * | ||||||||
| Design and Preparation | * | * | ||||||||||
| Data Collection | * | * | * | |||||||||
| Data Analysis | * | * | ||||||||||
| Report Writing | * | * | * | * | * | |||||||
| Revision and Final Paper | * | * | * | * |
6-Conclusions
The research proposal outlined the purpose of the research as the need to ascertain the benefits associated with physical exercise and social engagement for children with severe disabilities in the context of London and from the perspective of the parents and their care givers. The preliminary review of literature had indicated that while there is some research exploring the benefits of physical exercise and social interaction, there is little research from the the context of the UK and with the aim of understanding the specific needs of children in London. The research gaps indicate scope for evaluating the existing needs as perceieved by the people involved in caregiving for children with severe disabilities and then making recommendations for making the educational system more inclusive. The research is therefore proposed to develop an understanding of the situation using the parents and experts and by using a qualitative research approach involving qualitative interviews. The research findings are expected to provide insights which can help make the educational system more inclusive and better prepared to address the physical exercise and social interaction needs of children with disabilities.
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