Abstract
Play is a primary occupation for all children (Goldstein, 2012). All children have a right to play as highlighted in the United Nations Rights for the Child (Article 31; United Nations Children’s Fund, 1989). However, children with physical disabilities are often perceived to play less than their typically developing peers (Whittingham et al., 2010). This area is concerning for occupational therapy practitioners who aim to promote and support children in everyday occupations that are meaningful to them (College of Occupational Therapists, 2010).
Play is defined as an activity in which children experience freedom, choice, and control (Sheridan et al., 2011). It is a complex and widely debated concept that is recognized as being best defined from the perspective of the player (McInnes et al., 2009). Occupational therapy researchers have highlighted play experience as a combination of internal control, intrinsic motivation, and freedom from reality. These components of play are found within a “frame”—the frame being the nonverbal cues, such as facial expression, that indicate to someone else that a child is playing (Bundy, 2012).
Although McInnes et al. (2009) proposed that play is best defined from the perspective of the player, research outlining children’s experience of play is limited, particularly for children with physical disabilities (Graham, Nye, et al., 2017). Graham, Nye, et al. (2017) carried out a systematic thematic synthesis of the literature and found that children with physical disabilities appear to experience play differently than their typically developing peers; they can have attention drawn both toward and away from their disability in play, and the need for a helper can be experienced as normal. The authors concluded that further research is imperative from the perspective of children.
Cerebral palsy is a permanent condition defined as a group of disorders of motor function and movement due to an abnormality or nonprogressive lesion in the developing brain (Surveillance of Cerebral Palsy in Europe, 2000). Cerebral palsy is often classified and described between Levels I and V of the Gross Motor Function Classification System (GMFCS; Palisano et al., 2007), the Manual Ability Classification System (MACS; Eliasson et al., 2006), and the Communication Function Classification System (Hidecker et al., 2012). Children functioning at Levels IV and V of the GMFCS and MACS have very limited physical function and are thought to have the most limitations in opportunities for participation in leisure (Imms et al., 2017).
In this research, we aim to explore the experience of play for children with a high level of physical disability due to cerebral palsy. The data are reported in accordance with the consolidated criteria for reporting qualitative research (Tong et al., 2007).
Method
In this study, we used interpretative phenomenological analysis (IPA), which is a qualitative methodology designed to capture and interpret the meaning behind a specific experience for a specific group of participants (Smith et al., 2009). IPA is congruent with the first author’s (NG’s) minimal hermeneutic realist ontological perspective and social constructionist epistemological perspective. These perspectives adopt a view that one reality is understood from different people’s perspectives and that each person is understood in his or her own context (Larkin et al., 2006). The research method, documents, and analysis process were all reviewed by study advocates who supported the design of this project (Graham, Mandy, et al., 2017).
Ethical Considerations
Ethical approval for this study was sought and received from the University of Brighton’s research ethics committee. Safeguarding procedures were followed, data were kept securely as specified in the Data Protection Act (United Kingdom, 2018), and each participant’s confidentiality was maintained. Assent was provided by each child at the start of the project after an opportunity to read and ask questions about the child’s participant information sheet. A separate participant information sheet and consent form were provided for parents. All participants and their parents provided assent and consent to participate in the study and for the findings to be published. To protect confidentiality, we used pseudonyms for each child and any person to whom a child referred.
Participants
Children were recruited via posters and signposts from occupational therapy practitioners within charities working with children who had cerebral palsy. Children were included in the study if they had a diagnosis of cerebral palsy, were 6–12 yr old, were functioning at GMFCS Levels IV–V or MACS Levels III–V, and had a good level of communication (Communication Function Classification System Levels I–II). If a parent and child were interested in participating, they either contacted the first author directly or passed on their details via a practitioner. Potential participants fully read the study information and were aware that the study was a doctoral research project. Two potential participants decided that they did not want to discuss their experience, and therefore their data were removed from the study. Six children ages 6–11 yr participated in the study.
Protocol
At the point of meeting each participant, the first author went through the consent process before proceeding to the rest of the protocol. Each child participated in three interviews (between 60 and 90 min) carried out on separate occasions in their own home. Each interview consisted of an opportunity for the child to participate in 5–10 min of play activity, chosen by themselves, either alone or with a playmate. This activity was video recorded and then used later in the interview when it was played back and paused at different points for discussion and questioning (e.g., “What were you thinking?” “What were you doing there?” “How did that feel?”). After the initial play video had been recorded, the interview started with discussion around what was important to each child, how the child saw him- or herself, and what the child liked to do. This dialogue progressed to specific discussion about play and play activities that the child participated in.
The focus of IPA research is being able to gain an in-depth response from participants; for this reason, the first author often asked children to talk about how certain experiences felt and the meaning of this experience. The opportunity to discuss the play video and draw play activities and to talk about what was most important to each child provided good depth of data. Interviews occurred with parents in the house; however, the parents did not directly take part in the interview so that the child could express his or her experience without potential bias or change because of parental presence.
The interviews were video recorded and transcribed in full. Video recording took place to fully capture tone and nuances of each child’s communication. Although the children had good communication abilities, they all had considerable physical disabilities. Therefore, some responses were made via augmentative and alternative communication with body language adding tone and meaning to speech, or communication was made through physical indicators of yes or no, which could not be tracked through audio recording alone.
Data Analysis
The transcripts were analyzed ideographically according to the principles of IPA (Smith et al., 2009). Field notes made at the time of the interviews and reflexive 1 journal entries made after each interview contributed to the analysis process. The first author carried out all the interviews and analysis processes with support of research supervisors (the other three authors). The analysis process occurred through reading and rereading transcripts and then making word-processed notes of conceptual, descriptive, and linguistic comments in relation to parts of the data. An example of this process is seen in Table 1. Each participant’s data were aggregated into themes and subthemes and their own narrative summary before the first author aggregated themes across all the participants’ data. Several iterations of laying out the different themes and subthemes on pieces of paper on the floor and drawing these together enabled the first author to reach the final superordinate and subordinate themes.
Example of Data Analysis Process Taken From Abi (Interview 3)
Note. In the Initial Noting column, descriptive comments are in roman font, linguistic comments are italicized, and conceptual comments are underlined. P = participant; R = researcher.
Results
Participant data are summarized in Table 2. Three superordinate themes were reached to capture the experience of play for participants, who had a high level of physical disability due to cerebral palsy: making choices and controlling play, participating in play differently than peers, and connecting with others in play. Data saturation was not sought in this study because IPA recognizes that different people will have different experiences, and therefore it is not possible to capture a comprehensive single perspective (Smith et al., 2009). In accordance with the principles of IPA, the development of superordinate and subordinate themes considered topics that appeared to be the most meaningful to the participants (Smith et al., 2009).
Participant Demographic Information
Note. CFCS = Communication Function Classification System; CP = cerebral palsy; GMFCS = Gross Motor Function Classification System; MACS = Manual Ability Classification System.
Although the majority of the participants shared most of the themes, some themes, such as the importance of communication for connection, were more significant for particular participants (Tom and Daniel). An overview of the themes and subthemes can be seen in Table 3 and is further discussed in the following sections.
Overview of Superordinate and Subordinate Themes
Making Choices and Controlling Play
When children discussed their experience of play, it became evident that they often perceived themselves as independent despite having physical support. It appeared that in these moments of play children embodied their helper so that they became a part of their own experience of play. This theme was seen within the following exchange with Abi (Interview 3):
Researcher: OK, so who helps you roll the dice?
Abi: I do it on my own, do you remember, shut the box? [Referring to a game in which the researcher physically supported Abi rolling the dice.] Like that, rolling the dice.
Researcher: Rolling the dice like that, but in the shut box . . . I was holding your hand?
Abi: Oh yeah.
Researcher: But I was just, I was just helping?
Abi: Yeah.
This theme was also demonstrated across the interviews, for example, when Ben talked about it being “just me” playing despite having highlighted previously that he had an adult supporting him (Interview 2).
The participants all appeared to view themselves as physically strong and successful; they had a different definition of success that enabled them to celebrate their achievements in play. This view was seen within Ben’s comments “I am the beast at rugby” (Interview 1) and when playing that he was “win[ning] the World Cup” (Interview 3).
The children experienced a sense of making choices and having control through choosing to compromise. Tom discussed how he chose a certain color, the first option given to him, “because it was easier” (Interview 2). He did not mind compromising because it meant that he could quickly participate in the play. Children were happy with this compromise at times and did not see it as a problem. Jess commented, “Sometimes I play catch with [my teaching assistant], just ’cause no one plays with me I just play with her instead; I know it may sound a bit boring, but I still do” (Interview 1).
Conversely, children were forced to compromise at times because of their disability, which meant that an activity was no longer perceived as play. This outcome was seen within Abi’s discussion of her experience of her peers always playing netball at playtime when she commented, “Then I can’t play it, because it’s not adapted” (Interview 1).
Participating in Play Differently Than Peers
All participants negotiated a sense of identity in which their disability was a part of themselves. In referring to her cerebral palsy, Abi commented, “It feels normal, it doesn’t hurt me” (Interview 1). Jess (Interview 3) discussed participation in a mermaid game in which she and her parents were mermaids and her twin sister, who did not have a disability, was rescued:
So Mummy’s the queen, Daddy’s the king, and me and Josie are the princesses, and Josie is just a mermaid who gets trapped, and I see her and I free her, and she becomes my friend, and she becomes another one of us, so it is really fun.
It is possible that the imagery used here is an inverted view of Jess’s experience—a mermaid has no legs yet is able to move about in the water. Jess experienced a daily need for physical help and support; yet within this play, she could move about freely and became the person who helped others. Jess’s discussion of this play appeared to demonstrate a negotiation of identity through the opportunity to explore freedom in this way.
All the children also had a sense of their disability as a part of themselves through the embodiment of their equipment, such as their wheelchairs. This perception occurred to the extent that it was often not mentioned unless it was prompted by the first author. Abi discussed how she wanted to “put a wheelchair on it” (Interview 3) in relation to representing herself on her iPad game because it was part of her identity. Tom spoke about “using a wheelchair” in his head when participating in an imaginary game (Interview 3). These comments suggested that for some children embodiment occurred to the extent that their equipment was always a part of their perception of self.
An important finding of this study was that these children experienced an opportunity to engage in play through watching in a way that was different to their typically developing peers. Jess commented, “I do watch other people play, which is quite nice cause I like doing it, and it means I’m not left out” (Interview 1). Lucy spoke about how she engaged through commenting on others’ play when watching by doing things such as “beep my horn” (Interview 3).
All the children talked about an experience of extreme emotion in which their frustration and excitement were shown in play. This response appeared to be different to the experience of their typically developing peers because of the intensity of emotion and link between emotion and physical ability. Lucy commented how it felt “bad” when she dropped a piece of a game and that she “felt frustrated with [her]self” (Interview 3). Jess exclaimed “kill that” (Interview 2) when she made a mistake in her drawing because of her lack of motor control. The participants also talked about extreme excitement, and on several occasions, they discussed the fun they experienced in play. Daniel suggested that fun is “where you laugh and giggle and when you’re having a good time” (Interview 2).
Finally, children appeared to experience play differently than their typically developing peers through experiencing a new spatiality in their imaginary play—an imaged self without a disability. Spatiality refers to the characteristics of a space and environment that affect participation (Simonsen, 2007). It appeared that within the space of their imaginations, the children remained themselves but free from the constraints of a physical disability. Lucy highlighted that in her imaginary play, “My body’s just moving how I want it to move!” (Interview 3). Although children continued to be themselves but without a physical disability on several occasions, children also sometimes became someone else in their imagination. Ben said he was “actually Andy Murray” (Interview 2) when he participated in imaginary tennis. Daniel spoke of being “like a real ninja . . . because I might be a ninja” (Interview 1).
Connecting With Others in Play
Connecting with others appeared to be an important aspect of each child’s play. This aspect occurred through humor as shown in Tom’s use of laughter as a means to connect when something went wrong. Tom also chose to deliberately communicate the wrong response by telling the first author that he did not like minions when he did. He laughed a lot during this exchange and confirmed to the first author that he chose to do this behavior because it was a good way to make other people laugh.
Connecting through communication appeared to also be a means by which the participants experienced play. The importance of communication was seen in how participants said things such as “I’m not very quiet, I’m quite loud” (Daniel, Interview 2) and how telling stories and instructing others were important parts of play.
Discussion
The findings of this study have highlighted several aspects of play experience for children with a high level of physical disability that are not widely discussed within the research literature. Children were found to embody their helpers to the extent that they perceived themselves as independent despite having physical support. Embodiment of objects, such as wheelchairs, has been discussed within the research literature (Galli et al., 2015; Papadimitriou, 2008; Sawadsri, 2011) and was also demonstrated in these findings. The possibility of embodying a person as part of an experience has been less explored.
Blanchard and Øberg (2015) discussed how a newborn baby and a physiotherapy practitioner can become an embodied unit when both the infant and practitioner closely recognize and understand the nonverbal cues of the other. Although written from the perspective of the practitioner, and not the child, it is possible that this possibility may be true from the child’s perspective. The current study would suggest that becoming an embodied unit occurs to the extent that a child with physical disabilities, who is physically facilitated to participate in an activity, can perceive independence. Within this research project, this occurrence was named vista play, which is captured by the following definition: an internally experienced participation in an activity that is seen as pleasing and enables an anticipated sense of freedom, choice, and control. It is therefore important for practitioners to both understand how a child and helper can become an embodied unit and to recognize vista play as a possible means of participation for children with a high level of physical disability.
Identity is an important consideration for children with a high level of physical disability. Engagement in meaningful occupations, such as play, is often seen to be an important expression of identity and being (Wilcock, 1993). Discussion with the children in the current study suggested that they negotiated their identity through a constant fluctuation between their sense of self with a physical disability and their imagined self without a disability. Although it has been shown that most children participate in imaginary and superhero play (Thiel, 2015), researchers have not explored the concept of children imagining themselves as the same but without one characteristic, such as their physical disability. This occurrence appears to be a different kind of imaginary play.
It has been theorized that children develop their identity and personality through a negotiation of their internal and external perceptions and thoughts (Erikson, 1959) and that they develop their sense of self across time (Rochat, 2003). It is possible that as the participants developed, they used their play to negotiate their sense of self. It is important to consider whether this identity negotiation will continue into teenage and adult years. Research discussing identity development for children with physical disabilities is limited, and this topic requires further research and exploration. As occupational therapy practitioners consider the study findings, they should be aware that children may need support in the process of negotiating their identity and disability. Practitioners should recognize children’s expression of themselves without a physical disability in their imaginary play. Educating parents and allowing opportunities for expression of this imagined self may enable children to feel that their play experience is valued.
Children participated in play in different ways than their typically developing peers, such as through watching. This behavior has been referred to in previous studies as vicarious play (Graham et al., 2015) and onlooker play (Tamm & Skär, 2000). Although both of these studies suggested that this kind of play was possible, one study was from the parents’ perspective, and the other study contained children with a range of physical disabilities. This study highlights, from the perspective of children with a high level of physical disability, that they can experience participation through watching.
This type of participation may be disregarded because of being perceived as less active; however, consideration of occupational therapy literature would suggest that it is important to consider occupational engagement rather than performance (Doble & Santha, 2008; Polatajko et al., 2007). This interpretation means that a person could be fully engaged within an activity without physically participating. Each child’s perspective of participation should be considered; however, it is important that occupational therapy practitioners recognize the possibility of children experiencing participation in play through watching, both in everyday practice and as part of parent education.
The participants generally reported experiencing a sense of belonging within their play. Times in which children discussed feelings of exclusion were minimal; when this exclusion occurred, children often used strategies for connection to enable a greater sense of belonging. Belonging is an important part of occupation and health; connectedness with others provides context to the experience of an occupation (Hutchinson et al., 2017; Wilcock, 2007). Because the children in the current study had significant physical disabilities, this condition affected their physical participation (Imms et al., 2017). However, they were able to connect with others through other skills such as their communication and humor. Humor was often used when children made a mistake or needed an opportunity for reconnection within a difficult situation. This behavior has been reported in adult-based research (Demjén, 2016; Kuiper, 2012; Martin & Kuiper, 2016) but has yet to be discussed for children. Children with physical disabilities have been reported to have higher scores in the “clowns/jokes” section of the Test of Playfulness (Harkness & Bundy, 2001).
This finding supports the current research, suggesting that children with physical disabilities may use humor to a greater extent than their peers. The use of communication in specifically enabling participation has also been rarely discussed within the literature. One study suggested that alternative augmentative communication can enable greater participation (Dattilo et al., 2008). Further research is needed with regard to the extent that children develop and refine skills such as humor and communication when they have a physical disability.
Occupational deprivation can occur through factors outside of a person’s control (Durocher et al., 2014). The children reported times in which they experienced exclusion because they could not physically participate. Occupational therapy practitioners can help children to develop their component skills for play, such as being able to express their communication or humor to others or being able to use a powered wheelchair so that they can independently move around with their peers. A sense of belonging affects both identity development (Shotter, 1993) and health and well-being (Wilcock, 2007). It is therefore important that practitioners consider how they promote opportunities for belonging and support children’s strategies for connection in play because this technique may reduce the potential of children experiencing occupational deprivation.
Study Limitations
This research is limited to some extent by the participants who were recruited. The nature of each participant’s disability meant that it was difficult to gain in-depth responses within interviews. Questions and answers often involved short responses because of communication difficulties and the developmental stage of the children. However, we were satisfied that a sufficient depth of data was reached through multiple interviews and visual methods. Because recruitment occurred through charities working with children with cerebral palsy, it was likely that all the families were highly motivated to participate. This attribute limits the transferability of the study; however, the findings continue to provide a rich account of play experience for children with a high level of physical disability that has important implications for practice and further research.
Implications for Occupational Therapy Practice
This study highlights that occupational therapy practitioners need a greater awareness of the experience of play for children with a high level of physical disability so that they can support caregivers and other practitioners to recognize the value of play experienced by these children. In addition, the findings of this study have the following implications for occupational therapy practice:
Occupational therapy practitioners need to understand how a child and helper can become an embodied unit and to recognize vista play (in which the children experience play as independent despite having an adult physically supporting them) as a possible means of participation for children with a high level of physical disability.
Occupational therapy practitioners can support and recognize children’s process of identity negotiation within their play between themselves with a physical disability and their imagined self without a disability.
Play through watching is an important aspect of participation for children with a high level of physical disability, and occupational therapy practitioners can educate parents about this concept.
Children with a high level of physical disability experience belonging through their humor and communication skills. Occupational therapy practitioners can recognize and support opportunities for belonging through the development of these skills.
Conclusion
This research shows that children with a high level of physical disability as a result of cerebral palsy experience play in ways that are different than their typically developing peers. Parents and professionals can increase their awareness of the experience of play for this population so that their play can be more widely recognized.
Footnotes
Acknowledgments
We acknowledge the input of the research advocates who contributed to the design of this study.
Reflexive practice is a terminology used in IPA that refers to an analytical reflection and cycle of reflecting upon the research process.