http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(4): 290–295 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2014.918186
RESEARCH PAPER
Parental perceptions of barriers to physical activity in children with developmental disabilities living in Trinidad and Tobago Janet Njelesani, Karen Leckie, Jennifer Drummond, and Deb Cameron Department of Occupational Science and Occupational Therapy, International Centre for Disability and Rehabilitation, University of Toronto, Toronto, Ontario, Canada Abstract
Keywords
Background: Parents have a strong influence on their child’s engagement in physical activities, especially for children with developmental disabilities, as these children are less likely to initiate physical activity. Knowledge is limited regarding parents’ perceptions of this phenomenon in low- and middle-income countries (LMICs); yet many rehabilitation providers work with children with developmental disabilities and their parents in these contexts. Purpose: The aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children’s engagement in physical activity. Methods: An occupational perspective was used to explore how parents speak about barriers to their child’s engagement in physical activity. Interviews were conducted with nine parents in Port-of-Spain, Trinidad and Tobago. Findings: Parent’s perceived barriers were categorized into four themes: family priorities, not an option in our environment, need to match the activity to the child’s ability, and need for specialized supports. Conclusions: Findings provide opportunities for future rehabilitation and community programming in LMICs.
Developmental disability, parent(s), participation, physical activity, Trinidad and Tobago History Received 14 January 2013 Revised 15 April 2014 Accepted 22 April 2014 Published online 14 May 2014
ä Implications for Rehabilitation
Children living with a developmental disability may engage more in solitary and sedentary pursuits as a result of parents choosing activities that do not present extensive social and physical demands for their child. Therapists can play an important role in providing knowledge to parents of appropriate physical activity and the benefits of physical activity for children with developmental disabilities in order to promote children’s participation. In environments where there is limited social support for families, therapists need to consider and be particularly supportive of parental priorities and schedules.
Background Physical inactivity is one of the main independent risk factors for non-communicable disease (NCD) [1], the advancement of secondary health conditions, co-morbidities and from an occupational perspective, a reduction in the capacity to function in activities of daily living [2]. Physical inactivity as a risk factor for chronic disease is increasingly becoming a global public health concern [3]. In low- and middle-income countries (LMICs) such as Trinidad and Tobago, deaths from chronic disease ‘‘are projected to increase from 56% of all deaths in 2005 to 65% by 2030’’ [4]. LMICs are experiencing an epidemiological transition attributable to changes in both economic development and social organization, such as increased rates of urbanization [5]. An increased burden of chronic disease places increasing demands on health and social service sectors. In LMICs, such as Trinidad and
Address for correspondence: Janet Njelesani, PhD, Adjunct Appointment as Lecturer, Department of Occupational Science and Occupational Therapy, University of Toronto, 160-500 University Avenue, Toronto, Ontario, Canada M5G 1V7. E-mail: [email protected]
Tobago, issues of access and availability of rehabilitation [6] and other social services such as physical activity programs are a concern, because of the large disparities in income and existing social segregation [7]. Rates of childhood inactivity in Trinidad and Tobago are on the rise. In 2007, a global school-based student health survey conducted in Trinidad and Tobago, found that 74.2% of its students had insufficient physical activity levels [8]. Childhood inactivity is of particular concern because physical activity habits established early in life may persist into adult years and these habits can lead to decreased risk of NCDs such as coronary heart disease and obesity [9,10]. Currently, research is increasingly focused on the physical activity patterns, needs, and benefits of more vulnerable populations, including individuals with physical and/or developmental disabilities [11–16]. Few studies were found that specifically examine physical activity determinants for children living with a developmental disability. Of the literature that was found that contributes to an understanding of the barriers to physical activity for children with disabilities, the barriers were found to be complex and multi-factorial, and included a range of personal
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DOI: 10.3109/09638288.2014.918186
(e.g. child’s preferences), occupational (e.g. cost), and environmental factors (e.g. teacher behavior, inadequate facilities) [17–19]. From an occupational perspective, the term occupation refers to groups of activities and tasks of everyday life, named, organized, and given value and meaning by individuals and a culture [20]. Within the concept, occupations include every activity in which a person participates over the course of a day, week, month, year or life. Examples of children’s occupations may include such things as getting dressed, attending school, cleaning their bedroom, and dancing. The review of the literature highlighted that environmental barriers have been studied more comprehensively, predominantly focusing on the social, policy, and program barriers [17]. Research is therefore needed that examines the range of barriers that hinder children with disabilities’ participation in physical activity including personal and occupational barriers. A developmental disability is defined as a chronic disability, ensuing from a mental and/or physical impairment, resulting in life-long functional limitations [13]. Children living with a developmental disability are more likely to be sedentary than their peers [21]. Furthermore, children living with a developmental disability also engage more in solitary pursuits [13,15,22]. Underlying children living with a developmental disability’s increased participation in sedentary solitary activities are a range of interconnected factors. The literature suggests that the nature of impairments (e.g. difficulty understanding social cues, motor coordination impairments) in addition to environmental barriers, such as lack of information on appropriate physical activity, contribute to making it difficult for children with developmental disabilities to participate in physical activities with their peers [13,15,22]. Parents have been shown to be a strong and important influence on the physical activity levels of their children. Studies have explored the value attributable to parents’ influences, for example, the benefit of positive parental role modeling, support, and enjoyment of physical activity [2,9,23–25]. Children with developmental disabilities rely heavily on parental support and interaction, and are especially reliant on their parents to facilitate their engagement in physical activity, as they often cannot ascertain informal opportunities for engagement [2], as a result of their physical, cognitive, or social impairments. Parents are integral to the process of engagement in physical activity for children living with developmental disabilities; therefore, having a greater understanding of parental perceptions on the barriers to physical activity for their children is valuable. Hence, the aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children’s engagement in physical activity.
Methodology We employed a descriptive qualitative approach to inquiry as a means for ‘‘articulating, appreciating, and making visible the voices, and concerns’’ [26] of Trinidadian parent’s perceived barriers to their child with a developmental disability’s engagement in physical activity. A descriptive qualitative approach was suitable considering the scarcity of the research examining this phenomenon and population, which created a need for a fundamental understanding of parent’s subjective experiences. We used an occupational perspective as the theoretical framework to guide our study. An occupational perspective is defined as a way of looking at or thinking about human doing, it considers contextual factors; assumes occupations are connected to health and well-being; attends to the form, function, and meaning of occupations; and can contribute to being, becoming, and belonging [27]. An occupational perspective was used to guide our study
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as we held the assumption that the interrelationship of personal (i.e. child with developmental disabilities), contextual (i.e. family perceptions and Trinidadian society), and occupational (i.e. playing soccer) factors influence a child’s engagement in physical activity. Participant recruitment Parents caring for children with developmental disability living in the country of Trinidad and Tobago were recruited for our study. We gained access to this population through the Trinidad and Tobago working group at the International Center for Disability and Rehabilitation within the University of Toronto. Participants from a children’s center, which was affiliated with the international working group were recruited using purposive sampling techniques. Inclusion criteria included mothers and/or fathers of a child diagnosed with a developmental disability who was attending the children’s center, whose children had a moderate to severe developmental disability (as classified by the children’s center) that did not directly impact their physical ability (e.g. all participants’ children had independent mobility). Exclusion criteria included participants who were not fluent in English, not willing to be tape recorded, or not a citizen of Trinidad and Tobago. Following permission to conduct research, recruitment of parents began by obtaining a list of names that had been identified by the center’s director. We then used purposeful sampling from the list to select and invite parents of varying gender and age of their children to achieve a balance of representation (see Table 1 for participant demographics). The participants had children who ranged in age from 10 to 17 years old. The children’s diagnoses included Down Syndrome, Developmental Delay not otherwise specified, and Autism. Participants included five mothers, two fathers and one set of parents (mother and father). Data generation was stopped after nine participants had been interviewed as at that time we had a rich and full analysis that was sufficiently grounded and conceptualized. Pseudonyms are used in this article to maintain participant anonymity. Methods Ethics approval was obtained through the University of Toronto Research Ethics Board. In-country approval was gained from the institution where the research was conducted upon confirmation of ethics approval from the University of Toronto. Data were collected using semi-structured interviews with nine participants. The in-depth interviews were guided by an unstructured interview guide, which directed the discussions towards exploring
Table 1. Participant demographics. Participant no.
Sex of parent
Age of child
P1
Female
17
P2 P3
Female Female
10 17
P4
Female
10
P5 P6
Female Female
14 12
P7
Male
17
P8 P9
Male Male
13 12
Sex of child
Child’s health conditions
Female Kidney disease, scoliosis, developmental delay Male Autism, developmental delay Male Down syndrome, developmental delay Male Down syndrome, developmental delay Male Autism, developmental delay Male Genetic syndrome, developmental delay Female Kidney disease, scoliosis, developmental delay Female Developmental delay Male Developmental delay
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participants’ perceptions in regards to their child’s engagement in physical activity. The topics of the interview guide included: questions pertaining to the child’s general physical activity (e.g. Tell me about your child’s involvement and interests in physical activity.), the family’s physical activity (e.g. Tell me about how your family keeps physically active.), and environmental influences on physical activity (e.g. What opportunities for physical activity in your child’s life have been offered to you?). Interviews ranged from 30 to 45 min in length and occurred at the children’s center. We digitally recorded and transcribed all the interviews verbatim. Transcription encompassed a verbatim account of all verbal utterances. Data analysis Thematic analysis guided by an occupational perspective was completed as described by Braun and Clarke [28] by all four of us authors. Analysis began with each of us repeatedly reading the data. Individually, we extracted data in order to define and develop inductive codes based on constructs within an occupational perspective including personal, contextual, and occupational factors that were barriers to children’s engagement in physical activity. We then grouped together similar codes. We then came together as an entire team to discuss all of the generated codes and decided the significance and relevance of each code based on its content, frequency, and context. Two of us (K.L., J.D.) then used the developed codebook to analyse the data and compared our analysis with each other. As a team we came together again to discuss and group the codes into preliminarily themes. Collectively we assigned each emerging theme a name that captured its essence. The next phase involved considering the relationships between codes and the various levels of themes, through the use of thematic maps. Following the generation of themes, as a team we discussed the organization of themes to ensure the themes were internally coherent, consistent, and distinct. Finally, through a consensus process involving all members of the research team, the final four themes were established.
Findings Four themes were generated: (1) family priorities, (2) not an option in our environment, (3) need to match the activity to the child’s ability and (4) need for specialized supports. Family priorities Each family had their own personal priorities, essential routines, or concerns that they felt took precedence over physical activity and hence were a barrier to their child’s engagement in physical activities. For some parents physical activity was limited by other priorities such as work, chores, and/or other siblings’ needs. Parents often felt that life simply got in the way. One father comments on the aforementioned as follows: ‘‘The physical things kinda lacked a little because of work schedules. I also have another child, another boy, and he’s getting ready for an exam so I tend to spend more time concentrating on his work. We used to get out - walk jog that kind of thing, we’ve held up on that for a while, the physical activity part of it does lack a little (P9)’’. Throughout the interviews there was the general impression that parents did not prioritize physical activities in comparison to other aspects of their child’s development. These other concerns were highlighted when a direct question was posed regarding physical activity, with participates redirecting their
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responses to express other occupational concerns such as vocational pursuits: ‘‘It’s not just his physical thing; it’s just everything in general. That is just one part of it. What is he really going to do by the time he gets to twenty-one? What is his world going to be like? I mean, he loves animals but is it something that we can kind of push him into or guide him in that direction? I don’t know. Maybe a vet assistant kind of thing (P5)’’. Throughout the interviews parents examined their competing demands, describing the time constraints these imparted, subsequently influencing the time they could allocate towards physical activity, ‘‘He likes to golf. Again, it’s just some other of coordinating and get all that time and making that time. You have to really make that time to do something like that (P2)’’. One parent, for example, discussed the lack of time she had to take her daughter to the physical activities that she enjoyed, ‘‘. . . so I will totally endorse physical activity as part of every child’s upbringing. It’s just with the other things I have to do with her unique situation, time is of the issue (P1)’’. Not an option in our environment Many of the participants perceived their child’s participation in physical activity was not made an option due to various environmental barriers incumbent in their neighborhoods. Despite their efforts, these barriers were perceived to be beyond their control and limited their children’s ability to participate in physical activity. Participants persistently highlighted the lack of convenient physical activity facilities in their neighborhoods. One mother elucidated this issue stating, ‘‘Community centres in Trinidad would not be like in US, we really have no area to go as a family for sports (P3)’’. Even when facilities were available, parents expressed that the facilities were often not accessible. The dissatisfaction with physical education and sports facilities among parents stemmed from the recognition that so much as facilities were available, resources were concentrated in a relatively few privileged schools, where additional costs resulted in parents perceiving them as nonoptions. Parents also acknowledged long drives and lack of resources nearby to carry out physical activity as barriers, one mother said: ‘‘Here we don’t have those type of facilities, its not that accessible. It probably is but you have to drive to get there. It’s a long drive to get there, and most of the time, days are so short. So you don’t get things done (P4)’’. The type of immediate physical environment in which families lived also mediated parent’s perceptions of where is acceptable for their children to play. For example, one father expressed how the presence of the homeless at parks were a deterrent to their child’s use of parks and playgrounds: ‘‘Parks are not really great, homeless people hang around, you don’t really want your kids around that (P8)’’. Elaborating on the physical environment, different aspects of the weather, such as the heat and the time of day, was highlighted as a common construct perceived by parents as a barrier to their child’s engagement in physical activity outside their home environment. For other parents weather was perceived as a barrier possibly exacerbating their child’s symptomology and thus limiting their child’s participation in physical activity, one mother reported: ‘‘. . . because you find that, you know, it’s very hot sometimes. He runs around a little bit. Sometimes
Parental perceptions of physical activity
DOI: 10.3109/09638288.2014.918186
I think the heat has something to do with it too. You know, he gets very tired (P2)’’. Need to match the activity to the child’s ability All of the parents who participated in our study had children with developmental disabilities. Many parents expressed attitudes and beliefs about the lack of adequate skills and confidence in their children, which generated the perception that their child could not participate in physical activity due to their child’s impairments. Parents’ believed that individual traits must be considered when reflecting upon their child’s engagement in physical activity, one mother said: ‘‘He needs more physical activity. His condition needs to be considered in that. He’s not tired and these things contribute to how he will perform (P6)’’. Parents generally perceived their child’s skill in performing physical activity as low and thereby limited their engagement in physical activity; one father described how his son’s physical skills hampered his ability to engage in physical activity: ‘‘I think there’s too much effort involved. The fact that he is going to have to wait for the ball to come and the swinging motion kind of thing, and then he has to wait until the ball comes. I don’t think he has that patience, coordination kind of thing. The attentiveness is three or four times and then after that he, you know, might as well give this up (P9)’’. Parents were protective of their children and emphasized their safety with regards to the risk physically active occupations can bring. Parents consistently believed that their own vigilance was an important factor influencing the participation of their children in physical activities. Parents were also more cautious about the activities their children participated in because of their child’s impairments. This caution arose out of concern for their children’s safety. Throughout the interviews parents viewed their children’s peer relations in physical activity and sport settings as barriers to participation. Parents regarded same aged peers, without a developmental disability, as generally not interested in the same physical activity pursuits as their child, thus prompting more solitary and inactive activities, one mother commented: ‘‘Because I mean nobody else will want to play what he wants to play so he gets bored (P3)’’. The social demands existent in team sports, such as the ability to understand and communicate with other team members represented a further barrier that limited some children’s engagement in physical activity. Need for specialized supports Most parents held the belief that their children should be physically active, although most were not satisfied with their child’s current level of physical activity. They thought more support could be made available to enhance their children’s physical activity: ‘‘No. I am not (satisfied with her level of physical activity). No. Certainly in the school, I don’t think that they engage her in any’’ (P7). Parents believed their children engaged in very little physical activity during the school day because of barriers such as a lack of staff knowledge on ways to adapt programs for their child: ‘‘Human resources, human resources, we don’t have any of that particular person who understands’’ (P6) and ‘‘They really don’t know how to be with special needs children – Trinidad is not prepared for that’’ (P5). Financial resources were identified as another barrier by parents as to why their child was not participating in a greater amount of sports and physical activity at school: ‘‘There is always people that come in outside of that so there’s always an additional cost for it’’ (P4).
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Discussion The literature on family-centered practice for families of children with disabilities indicates that it is important for service providers to understand family belief systems with respect to the involvement of all family members [29]. Understanding a family’s beliefs can also assist service providers in engaging parents in the rehabilitation process, while creating stronger clinician-client relationships and the enhanced ability of service providers to tailor recommendations to fit family values and priorities [29]. Therefore, it is reasonable to believe that before beginning any type of rehabilitation for children one must first understand parents’ perceptions. This research sought to understand parent’s perceptions of barriers to physical activity for their children with developmental disabilities. Thematic analysis of the data generated four themes. These themes provide a framework to address specific interventions and to recommend strategies. Attention to the perspectives, values, priorities, and concerns of families is part of the comprehensive approach to practice that is characteristic of expertise in service delivery [30]. Competing demands and time pressures was a barrier to physical activity identified by the participants; a social environmental barrier commonly found in other studies including those with children with disabilities in high-income countries and children without disabilities [31–33]. More specifically, in this study the parents’ own judgment of their family’s priorities, or their sense of what was best for their family, seemed to dictate their child’s exposure and participation in physical activity. Given this finding, there is a need for environments that are supportive of parental priorities and schedules, particularly where there is limited family or social support to help encourage these children who are living with a developmental disability to engage in physical activity. Similarly, to the literature on environmental barriers to physical activity for children with disabilities in high-income countries [18] and as is commonly discussed in the literature concerning LMICs [16,34], in our study unavailability and access to physical activity programs was a significant factor in the participation of children with a developmental disability. This unavailability of programs and/or the fact that they are often not conveniently located or accessible appears to be the most commonly cited environmental barrier by parents [17] and thus was not unexpected as a finding in our study. In the theme Need to Match the Activity to the Child’s Ability, parents’ demonstrated a belief that individual traits must be reflected upon when engaging their child in physical activity. The idea of taking into consideration children’s personal barriers has received some attention in the literature [17]; however, this finding is unique in that it illuminates the interaction among personal and occupational barriers on a child with a developmental disability’s participation in physical activity. For example, several parents reported a lack of engagement in any sport whereby their child did not have the ability to continuously control the situation, i.e. a child attempting to play a game of soccer which requires reacting to others actions and following rules whereby the ball can be taken away at any given point. These findings suggest that parents may develop a greater predilection for certain physical activities or occupations if allowed to choose activities based on their child’s physical abilities, leading them to chose physical activities that do not present extensive social and physical demands. Contrasting the findings of Martin and Choi [2], the current study showed that parents did not perceive their children’s peer relations in physical activity and sport settings as facilitators to participation in physical activity. Rather, peers were seen to
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misunderstand the child with a developmental disability or were unable to effectively engage with them due to differences in ability and communication. Parent vigilance was another important factor influencing the participation of children in the study. Like those parents in a study by Veitch, Bagley, Ball, and Salmon [35], parents in the present study were more cautious about the activities their children participated in, out of genuine concern for their children’s safety. Consistent with the findings of Bois et al. [36], parents recognized that their children enjoyed playing games and sports; however, they did not view their children as being particularly skilled. It may be useful for rehabilitation practitioners to educate parents that, regardless of their perceptions of ability, that all children can benefit from receiving adequate support for physical activity. Lin et al. [37] discussed how parent’s educational level and preference toward physical activity were determinants that could significantly predict a child living with a developmental disability’s engagement in physical activity. Parental desires to increase personal knowledge and education was distinctive to this research, unlike in other contexts where ‘‘a wide variety of sporting activities are accessible to children with disabilities, and guidelines are available which recommend activities’’ [14]. Trinidad and Tobago does not have the social service options available, or a widespread understanding of children living with developmental disabilities. Parent’s perceived their lack of awareness of safe physical activities and guidelines as a limitation to their child’s participation and expressed a desire to be educated around potential physical activity pursuits available to and appropriate for their child. Furthermore, parental interviews suggested there is a lack of information given to parents regarding school facilities. One participant described her desire for a playground within the school. Her perception contradicts with what is actually offered at the school, as there is indeed a playground at the children’s center. Implications for practice and future research The findings provide important new information that may be useful for family-based physical activity interventions targeting children with developmental disability in Trinidad and Tobago and other contexts where similar barriers are found. At the broad level rehabilitation therapists could play an advocacy role in the education or government system, for example by developing a curriculum or a grant proposal for a physical activity program that includes a range of occupations accessible for children living with developmental disabilities. At the organizational level, therapists can advocate for improvements to be made in the accessibility of sites in schools and neighborhoods where children can engage in physical activity. At the individual level, therapists could strengthen parents’ capacity by providing education to increase their autonomy and competence to promote their child’s engagement in physical activity. In order to continue to provide effective intervention further research should be conducted in Trinidad and other countries. Specifically related to this research, this study would benefit from expansion to parents from other LMICs. Future research may also explore the benefits of knowledge translation and the importance of family involvement and collaboration for increased engagement in physical activity in children living with a developmental disability.
Conclusion This research provides an initial understanding of parental perceptions of barriers to physical activity for children living with a developmental disability in Trinidad and Tobago. Familycentered practice espouses the belief that parents know their children best. Parents thus need to be supported by appropriate
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rehabilitation and community programs that offer a range of options and activities to overcome the perceived barriers and meet the diverse needs of children in their community.
Acknowledgements We would like to express a deep thanks to all of the participants who partook in the interview process.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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20. Canadian Association of Occupational Therapists. Enabling occupation: an occupational therapy perspective. Ottawa (Ontario): CAOT Publications ACE; 1997. 21. Taylor WC, Baranowski T, Rohm Young D. Physical activity interventions in low-income, ethnic minority, and populations with disability. Am J Prevent Med 1998;15:334–43. 22. Buttimer J, Tierney E. Patterns of leisure participation among adolescents with a mild intellectual disability. J Intellect Disabil 2005;9:25–42. 23. Heah T, Case T, McGuire B, Law M. Successful participation: the lived experience among children with disabilities. Can J Occupat Therap 2007;74:38–46. 24. Kasari C, Sigman M. Linking parental perceptions to interactions in young children with Autism. J Autism Dev Disord 1997;27:39–56. 25. Pan CY, Frey GC. Identifying physical activity determinants in youth with autistic spectrum disorders. J Phys Act Health 2004;2: 410–20. 26. Weaver KD, Olson JK. Understanding paradigms used for nursing research. J Adv Nurs 2006;53:459–69. 27. Njelesani J, Tang A, Jonsson H, Polatajko H. Articulating an occupational perspective. J Occupat Sci 2012. doi:10.1080/ 14427591.2012.717500. 28. Braun V, Clarke V. Using thematic analysis in psychology. Qualitat Res Psychol 2006;3:77–101. 29. Law M, Teplicky R, King S, et al. Family-centred service: moving ideas into practice. Child: Care Health Dev 2005;36:633–42.
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30. King G, Baxter D, Rosenbum P, et al. Belief systems of families of children with autism spectrum disorders or down syndrome. Focus Autism Other Dev Disabil 2009;24:50–64. 31. Allison KR, Dwyer JJ, Makin S. Perceived barriers to physical activity among high school students. Prevent Med 1999;28:605–15. 32. O’Dea JL. Why do kids eat healthful food? Perceived benefits of and barriers to healthful eating and physical activity among children and adolescents. J Am Diet Assoc 2003;103:497–501. 33. Salmon JL, Owen N, Crawford D, et al. Physical activity and sedentary behavior: a population-based study of barriers, enjoyment, and preference. Health Psychol 2003;22:178–88. 34. Mutua NK, Miller JW, Mwavita M. Resource utilization by children with developmental disabilities in Kenya: discrepancy analysis of parents’ expectation-to-importance appraisals. Res Dev Disabil 2002;23:191–201. 35. Veitch JL, Bagley SG, Ball KT, Salmon J. Where do children usually play? A qualitative study of parents’ perceptions of influences on children’s active free-play. Health Place 2006;12:383–93. 36. Bois JE, Sarrazin PG, Brustad RJ, et al. Elementary school children’s perceived competence and physical and physical activity involvement: the influence of parents’ role modeling behaviors and perceptions of their child’s competence. Psychol Sports Exerc 2005; 6:381–97. 37. Lin JD, Lin PY, Lin LP, et al. Physical activity and its determinants among adolescents with intellectual disabilities. Res Dev Disabil 2010;31:263–9.
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RESEARCH PAPER
Parental perceptions of barriers to physical activity in children with developmental disabilities living in Trinidad and Tobago Janet Njelesani, Karen Leckie, Jennifer Drummond, and Deb Cameron Department of Occupational Science and Occupational Therapy, International Centre for Disability and Rehabilitation, University of Toronto, Toronto, Ontario, Canada Abstract
Keywords
Background: Parents have a strong influence on their child’s engagement in physical activities, especially for children with developmental disabilities, as these children are less likely to initiate physical activity. Knowledge is limited regarding parents’ perceptions of this phenomenon in low- and middle-income countries (LMICs); yet many rehabilitation providers work with children with developmental disabilities and their parents in these contexts. Purpose: The aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children’s engagement in physical activity. Methods: An occupational perspective was used to explore how parents speak about barriers to their child’s engagement in physical activity. Interviews were conducted with nine parents in Port-of-Spain, Trinidad and Tobago. Findings: Parent’s perceived barriers were categorized into four themes: family priorities, not an option in our environment, need to match the activity to the child’s ability, and need for specialized supports. Conclusions: Findings provide opportunities for future rehabilitation and community programming in LMICs.
Developmental disability, parent(s), participation, physical activity, Trinidad and Tobago History Received 14 January 2013 Revised 15 April 2014 Accepted 22 April 2014 Published online 14 May 2014
ä Implications for Rehabilitation
Children living with a developmental disability may engage more in solitary and sedentary pursuits as a result of parents choosing activities that do not present extensive social and physical demands for their child. Therapists can play an important role in providing knowledge to parents of appropriate physical activity and the benefits of physical activity for children with developmental disabilities in order to promote children’s participation. In environments where there is limited social support for families, therapists need to consider and be particularly supportive of parental priorities and schedules.
Background Physical inactivity is one of the main independent risk factors for non-communicable disease (NCD) [1], the advancement of secondary health conditions, co-morbidities and from an occupational perspective, a reduction in the capacity to function in activities of daily living [2]. Physical inactivity as a risk factor for chronic disease is increasingly becoming a global public health concern [3]. In low- and middle-income countries (LMICs) such as Trinidad and Tobago, deaths from chronic disease ‘‘are projected to increase from 56% of all deaths in 2005 to 65% by 2030’’ [4]. LMICs are experiencing an epidemiological transition attributable to changes in both economic development and social organization, such as increased rates of urbanization [5]. An increased burden of chronic disease places increasing demands on health and social service sectors. In LMICs, such as Trinidad and
Address for correspondence: Janet Njelesani, PhD, Adjunct Appointment as Lecturer, Department of Occupational Science and Occupational Therapy, University of Toronto, 160-500 University Avenue, Toronto, Ontario, Canada M5G 1V7. E-mail: [email protected]
Tobago, issues of access and availability of rehabilitation [6] and other social services such as physical activity programs are a concern, because of the large disparities in income and existing social segregation [7]. Rates of childhood inactivity in Trinidad and Tobago are on the rise. In 2007, a global school-based student health survey conducted in Trinidad and Tobago, found that 74.2% of its students had insufficient physical activity levels [8]. Childhood inactivity is of particular concern because physical activity habits established early in life may persist into adult years and these habits can lead to decreased risk of NCDs such as coronary heart disease and obesity [9,10]. Currently, research is increasingly focused on the physical activity patterns, needs, and benefits of more vulnerable populations, including individuals with physical and/or developmental disabilities [11–16]. Few studies were found that specifically examine physical activity determinants for children living with a developmental disability. Of the literature that was found that contributes to an understanding of the barriers to physical activity for children with disabilities, the barriers were found to be complex and multi-factorial, and included a range of personal
Parental perceptions of physical activity
DOI: 10.3109/09638288.2014.918186
(e.g. child’s preferences), occupational (e.g. cost), and environmental factors (e.g. teacher behavior, inadequate facilities) [17–19]. From an occupational perspective, the term occupation refers to groups of activities and tasks of everyday life, named, organized, and given value and meaning by individuals and a culture [20]. Within the concept, occupations include every activity in which a person participates over the course of a day, week, month, year or life. Examples of children’s occupations may include such things as getting dressed, attending school, cleaning their bedroom, and dancing. The review of the literature highlighted that environmental barriers have been studied more comprehensively, predominantly focusing on the social, policy, and program barriers [17]. Research is therefore needed that examines the range of barriers that hinder children with disabilities’ participation in physical activity including personal and occupational barriers. A developmental disability is defined as a chronic disability, ensuing from a mental and/or physical impairment, resulting in life-long functional limitations [13]. Children living with a developmental disability are more likely to be sedentary than their peers [21]. Furthermore, children living with a developmental disability also engage more in solitary pursuits [13,15,22]. Underlying children living with a developmental disability’s increased participation in sedentary solitary activities are a range of interconnected factors. The literature suggests that the nature of impairments (e.g. difficulty understanding social cues, motor coordination impairments) in addition to environmental barriers, such as lack of information on appropriate physical activity, contribute to making it difficult for children with developmental disabilities to participate in physical activities with their peers [13,15,22]. Parents have been shown to be a strong and important influence on the physical activity levels of their children. Studies have explored the value attributable to parents’ influences, for example, the benefit of positive parental role modeling, support, and enjoyment of physical activity [2,9,23–25]. Children with developmental disabilities rely heavily on parental support and interaction, and are especially reliant on their parents to facilitate their engagement in physical activity, as they often cannot ascertain informal opportunities for engagement [2], as a result of their physical, cognitive, or social impairments. Parents are integral to the process of engagement in physical activity for children living with developmental disabilities; therefore, having a greater understanding of parental perceptions on the barriers to physical activity for their children is valuable. Hence, the aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children’s engagement in physical activity.
Methodology We employed a descriptive qualitative approach to inquiry as a means for ‘‘articulating, appreciating, and making visible the voices, and concerns’’ [26] of Trinidadian parent’s perceived barriers to their child with a developmental disability’s engagement in physical activity. A descriptive qualitative approach was suitable considering the scarcity of the research examining this phenomenon and population, which created a need for a fundamental understanding of parent’s subjective experiences. We used an occupational perspective as the theoretical framework to guide our study. An occupational perspective is defined as a way of looking at or thinking about human doing, it considers contextual factors; assumes occupations are connected to health and well-being; attends to the form, function, and meaning of occupations; and can contribute to being, becoming, and belonging [27]. An occupational perspective was used to guide our study
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as we held the assumption that the interrelationship of personal (i.e. child with developmental disabilities), contextual (i.e. family perceptions and Trinidadian society), and occupational (i.e. playing soccer) factors influence a child’s engagement in physical activity. Participant recruitment Parents caring for children with developmental disability living in the country of Trinidad and Tobago were recruited for our study. We gained access to this population through the Trinidad and Tobago working group at the International Center for Disability and Rehabilitation within the University of Toronto. Participants from a children’s center, which was affiliated with the international working group were recruited using purposive sampling techniques. Inclusion criteria included mothers and/or fathers of a child diagnosed with a developmental disability who was attending the children’s center, whose children had a moderate to severe developmental disability (as classified by the children’s center) that did not directly impact their physical ability (e.g. all participants’ children had independent mobility). Exclusion criteria included participants who were not fluent in English, not willing to be tape recorded, or not a citizen of Trinidad and Tobago. Following permission to conduct research, recruitment of parents began by obtaining a list of names that had been identified by the center’s director. We then used purposeful sampling from the list to select and invite parents of varying gender and age of their children to achieve a balance of representation (see Table 1 for participant demographics). The participants had children who ranged in age from 10 to 17 years old. The children’s diagnoses included Down Syndrome, Developmental Delay not otherwise specified, and Autism. Participants included five mothers, two fathers and one set of parents (mother and father). Data generation was stopped after nine participants had been interviewed as at that time we had a rich and full analysis that was sufficiently grounded and conceptualized. Pseudonyms are used in this article to maintain participant anonymity. Methods Ethics approval was obtained through the University of Toronto Research Ethics Board. In-country approval was gained from the institution where the research was conducted upon confirmation of ethics approval from the University of Toronto. Data were collected using semi-structured interviews with nine participants. The in-depth interviews were guided by an unstructured interview guide, which directed the discussions towards exploring
Table 1. Participant demographics. Participant no.
Sex of parent
Age of child
P1
Female
17
P2 P3
Female Female
10 17
P4
Female
10
P5 P6
Female Female
14 12
P7
Male
17
P8 P9
Male Male
13 12
Sex of child
Child’s health conditions
Female Kidney disease, scoliosis, developmental delay Male Autism, developmental delay Male Down syndrome, developmental delay Male Down syndrome, developmental delay Male Autism, developmental delay Male Genetic syndrome, developmental delay Female Kidney disease, scoliosis, developmental delay Female Developmental delay Male Developmental delay
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participants’ perceptions in regards to their child’s engagement in physical activity. The topics of the interview guide included: questions pertaining to the child’s general physical activity (e.g. Tell me about your child’s involvement and interests in physical activity.), the family’s physical activity (e.g. Tell me about how your family keeps physically active.), and environmental influences on physical activity (e.g. What opportunities for physical activity in your child’s life have been offered to you?). Interviews ranged from 30 to 45 min in length and occurred at the children’s center. We digitally recorded and transcribed all the interviews verbatim. Transcription encompassed a verbatim account of all verbal utterances. Data analysis Thematic analysis guided by an occupational perspective was completed as described by Braun and Clarke [28] by all four of us authors. Analysis began with each of us repeatedly reading the data. Individually, we extracted data in order to define and develop inductive codes based on constructs within an occupational perspective including personal, contextual, and occupational factors that were barriers to children’s engagement in physical activity. We then grouped together similar codes. We then came together as an entire team to discuss all of the generated codes and decided the significance and relevance of each code based on its content, frequency, and context. Two of us (K.L., J.D.) then used the developed codebook to analyse the data and compared our analysis with each other. As a team we came together again to discuss and group the codes into preliminarily themes. Collectively we assigned each emerging theme a name that captured its essence. The next phase involved considering the relationships between codes and the various levels of themes, through the use of thematic maps. Following the generation of themes, as a team we discussed the organization of themes to ensure the themes were internally coherent, consistent, and distinct. Finally, through a consensus process involving all members of the research team, the final four themes were established.
Findings Four themes were generated: (1) family priorities, (2) not an option in our environment, (3) need to match the activity to the child’s ability and (4) need for specialized supports. Family priorities Each family had their own personal priorities, essential routines, or concerns that they felt took precedence over physical activity and hence were a barrier to their child’s engagement in physical activities. For some parents physical activity was limited by other priorities such as work, chores, and/or other siblings’ needs. Parents often felt that life simply got in the way. One father comments on the aforementioned as follows: ‘‘The physical things kinda lacked a little because of work schedules. I also have another child, another boy, and he’s getting ready for an exam so I tend to spend more time concentrating on his work. We used to get out - walk jog that kind of thing, we’ve held up on that for a while, the physical activity part of it does lack a little (P9)’’. Throughout the interviews there was the general impression that parents did not prioritize physical activities in comparison to other aspects of their child’s development. These other concerns were highlighted when a direct question was posed regarding physical activity, with participates redirecting their
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responses to express other occupational concerns such as vocational pursuits: ‘‘It’s not just his physical thing; it’s just everything in general. That is just one part of it. What is he really going to do by the time he gets to twenty-one? What is his world going to be like? I mean, he loves animals but is it something that we can kind of push him into or guide him in that direction? I don’t know. Maybe a vet assistant kind of thing (P5)’’. Throughout the interviews parents examined their competing demands, describing the time constraints these imparted, subsequently influencing the time they could allocate towards physical activity, ‘‘He likes to golf. Again, it’s just some other of coordinating and get all that time and making that time. You have to really make that time to do something like that (P2)’’. One parent, for example, discussed the lack of time she had to take her daughter to the physical activities that she enjoyed, ‘‘. . . so I will totally endorse physical activity as part of every child’s upbringing. It’s just with the other things I have to do with her unique situation, time is of the issue (P1)’’. Not an option in our environment Many of the participants perceived their child’s participation in physical activity was not made an option due to various environmental barriers incumbent in their neighborhoods. Despite their efforts, these barriers were perceived to be beyond their control and limited their children’s ability to participate in physical activity. Participants persistently highlighted the lack of convenient physical activity facilities in their neighborhoods. One mother elucidated this issue stating, ‘‘Community centres in Trinidad would not be like in US, we really have no area to go as a family for sports (P3)’’. Even when facilities were available, parents expressed that the facilities were often not accessible. The dissatisfaction with physical education and sports facilities among parents stemmed from the recognition that so much as facilities were available, resources were concentrated in a relatively few privileged schools, where additional costs resulted in parents perceiving them as nonoptions. Parents also acknowledged long drives and lack of resources nearby to carry out physical activity as barriers, one mother said: ‘‘Here we don’t have those type of facilities, its not that accessible. It probably is but you have to drive to get there. It’s a long drive to get there, and most of the time, days are so short. So you don’t get things done (P4)’’. The type of immediate physical environment in which families lived also mediated parent’s perceptions of where is acceptable for their children to play. For example, one father expressed how the presence of the homeless at parks were a deterrent to their child’s use of parks and playgrounds: ‘‘Parks are not really great, homeless people hang around, you don’t really want your kids around that (P8)’’. Elaborating on the physical environment, different aspects of the weather, such as the heat and the time of day, was highlighted as a common construct perceived by parents as a barrier to their child’s engagement in physical activity outside their home environment. For other parents weather was perceived as a barrier possibly exacerbating their child’s symptomology and thus limiting their child’s participation in physical activity, one mother reported: ‘‘. . . because you find that, you know, it’s very hot sometimes. He runs around a little bit. Sometimes
Parental perceptions of physical activity
DOI: 10.3109/09638288.2014.918186
I think the heat has something to do with it too. You know, he gets very tired (P2)’’. Need to match the activity to the child’s ability All of the parents who participated in our study had children with developmental disabilities. Many parents expressed attitudes and beliefs about the lack of adequate skills and confidence in their children, which generated the perception that their child could not participate in physical activity due to their child’s impairments. Parents’ believed that individual traits must be considered when reflecting upon their child’s engagement in physical activity, one mother said: ‘‘He needs more physical activity. His condition needs to be considered in that. He’s not tired and these things contribute to how he will perform (P6)’’. Parents generally perceived their child’s skill in performing physical activity as low and thereby limited their engagement in physical activity; one father described how his son’s physical skills hampered his ability to engage in physical activity: ‘‘I think there’s too much effort involved. The fact that he is going to have to wait for the ball to come and the swinging motion kind of thing, and then he has to wait until the ball comes. I don’t think he has that patience, coordination kind of thing. The attentiveness is three or four times and then after that he, you know, might as well give this up (P9)’’. Parents were protective of their children and emphasized their safety with regards to the risk physically active occupations can bring. Parents consistently believed that their own vigilance was an important factor influencing the participation of their children in physical activities. Parents were also more cautious about the activities their children participated in because of their child’s impairments. This caution arose out of concern for their children’s safety. Throughout the interviews parents viewed their children’s peer relations in physical activity and sport settings as barriers to participation. Parents regarded same aged peers, without a developmental disability, as generally not interested in the same physical activity pursuits as their child, thus prompting more solitary and inactive activities, one mother commented: ‘‘Because I mean nobody else will want to play what he wants to play so he gets bored (P3)’’. The social demands existent in team sports, such as the ability to understand and communicate with other team members represented a further barrier that limited some children’s engagement in physical activity. Need for specialized supports Most parents held the belief that their children should be physically active, although most were not satisfied with their child’s current level of physical activity. They thought more support could be made available to enhance their children’s physical activity: ‘‘No. I am not (satisfied with her level of physical activity). No. Certainly in the school, I don’t think that they engage her in any’’ (P7). Parents believed their children engaged in very little physical activity during the school day because of barriers such as a lack of staff knowledge on ways to adapt programs for their child: ‘‘Human resources, human resources, we don’t have any of that particular person who understands’’ (P6) and ‘‘They really don’t know how to be with special needs children – Trinidad is not prepared for that’’ (P5). Financial resources were identified as another barrier by parents as to why their child was not participating in a greater amount of sports and physical activity at school: ‘‘There is always people that come in outside of that so there’s always an additional cost for it’’ (P4).
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Discussion The literature on family-centered practice for families of children with disabilities indicates that it is important for service providers to understand family belief systems with respect to the involvement of all family members [29]. Understanding a family’s beliefs can also assist service providers in engaging parents in the rehabilitation process, while creating stronger clinician-client relationships and the enhanced ability of service providers to tailor recommendations to fit family values and priorities [29]. Therefore, it is reasonable to believe that before beginning any type of rehabilitation for children one must first understand parents’ perceptions. This research sought to understand parent’s perceptions of barriers to physical activity for their children with developmental disabilities. Thematic analysis of the data generated four themes. These themes provide a framework to address specific interventions and to recommend strategies. Attention to the perspectives, values, priorities, and concerns of families is part of the comprehensive approach to practice that is characteristic of expertise in service delivery [30]. Competing demands and time pressures was a barrier to physical activity identified by the participants; a social environmental barrier commonly found in other studies including those with children with disabilities in high-income countries and children without disabilities [31–33]. More specifically, in this study the parents’ own judgment of their family’s priorities, or their sense of what was best for their family, seemed to dictate their child’s exposure and participation in physical activity. Given this finding, there is a need for environments that are supportive of parental priorities and schedules, particularly where there is limited family or social support to help encourage these children who are living with a developmental disability to engage in physical activity. Similarly, to the literature on environmental barriers to physical activity for children with disabilities in high-income countries [18] and as is commonly discussed in the literature concerning LMICs [16,34], in our study unavailability and access to physical activity programs was a significant factor in the participation of children with a developmental disability. This unavailability of programs and/or the fact that they are often not conveniently located or accessible appears to be the most commonly cited environmental barrier by parents [17] and thus was not unexpected as a finding in our study. In the theme Need to Match the Activity to the Child’s Ability, parents’ demonstrated a belief that individual traits must be reflected upon when engaging their child in physical activity. The idea of taking into consideration children’s personal barriers has received some attention in the literature [17]; however, this finding is unique in that it illuminates the interaction among personal and occupational barriers on a child with a developmental disability’s participation in physical activity. For example, several parents reported a lack of engagement in any sport whereby their child did not have the ability to continuously control the situation, i.e. a child attempting to play a game of soccer which requires reacting to others actions and following rules whereby the ball can be taken away at any given point. These findings suggest that parents may develop a greater predilection for certain physical activities or occupations if allowed to choose activities based on their child’s physical abilities, leading them to chose physical activities that do not present extensive social and physical demands. Contrasting the findings of Martin and Choi [2], the current study showed that parents did not perceive their children’s peer relations in physical activity and sport settings as facilitators to participation in physical activity. Rather, peers were seen to
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misunderstand the child with a developmental disability or were unable to effectively engage with them due to differences in ability and communication. Parent vigilance was another important factor influencing the participation of children in the study. Like those parents in a study by Veitch, Bagley, Ball, and Salmon [35], parents in the present study were more cautious about the activities their children participated in, out of genuine concern for their children’s safety. Consistent with the findings of Bois et al. [36], parents recognized that their children enjoyed playing games and sports; however, they did not view their children as being particularly skilled. It may be useful for rehabilitation practitioners to educate parents that, regardless of their perceptions of ability, that all children can benefit from receiving adequate support for physical activity. Lin et al. [37] discussed how parent’s educational level and preference toward physical activity were determinants that could significantly predict a child living with a developmental disability’s engagement in physical activity. Parental desires to increase personal knowledge and education was distinctive to this research, unlike in other contexts where ‘‘a wide variety of sporting activities are accessible to children with disabilities, and guidelines are available which recommend activities’’ [14]. Trinidad and Tobago does not have the social service options available, or a widespread understanding of children living with developmental disabilities. Parent’s perceived their lack of awareness of safe physical activities and guidelines as a limitation to their child’s participation and expressed a desire to be educated around potential physical activity pursuits available to and appropriate for their child. Furthermore, parental interviews suggested there is a lack of information given to parents regarding school facilities. One participant described her desire for a playground within the school. Her perception contradicts with what is actually offered at the school, as there is indeed a playground at the children’s center. Implications for practice and future research The findings provide important new information that may be useful for family-based physical activity interventions targeting children with developmental disability in Trinidad and Tobago and other contexts where similar barriers are found. At the broad level rehabilitation therapists could play an advocacy role in the education or government system, for example by developing a curriculum or a grant proposal for a physical activity program that includes a range of occupations accessible for children living with developmental disabilities. At the organizational level, therapists can advocate for improvements to be made in the accessibility of sites in schools and neighborhoods where children can engage in physical activity. At the individual level, therapists could strengthen parents’ capacity by providing education to increase their autonomy and competence to promote their child’s engagement in physical activity. In order to continue to provide effective intervention further research should be conducted in Trinidad and other countries. Specifically related to this research, this study would benefit from expansion to parents from other LMICs. Future research may also explore the benefits of knowledge translation and the importance of family involvement and collaboration for increased engagement in physical activity in children living with a developmental disability.
Conclusion This research provides an initial understanding of parental perceptions of barriers to physical activity for children living with a developmental disability in Trinidad and Tobago. Familycentered practice espouses the belief that parents know their children best. Parents thus need to be supported by appropriate
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rehabilitation and community programs that offer a range of options and activities to overcome the perceived barriers and meet the diverse needs of children in their community.
Acknowledgements We would like to express a deep thanks to all of the participants who partook in the interview process.
Declaration of interest The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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