children with disabilities' perceptions of activity participation and environments_ a pilot study

VOLUME 76 NUMBER 3 CANADIAN JOURNAL OF OCCUPATIONAL THERAPY JUNE 2009 133

Key words Participation Children Disability Photographs Case study

Johanna Harding Kimberly Harding Patricia Jamieson Maria Mullally Carolyn Politi Erline Wong-Sing Mary Law Theresa M. Petrenchik

childhood has also been identified as an important predictorof future life satisfaction (Kinney & Coyle, 1992).

Research pertaining to children with disabilitiesidentifies this population as particularly vulnerable to limitedparticipation, which results from the interaction betweenchildren and their physical and social environments (Forsyth& Jarvis, 2002; Law et al., 1999; Law, King, et al., 2006).Recent studies have shown links between household income,parent education level, or geographic region and the childsparticipation (Law, King, et al., 2006; Sloper, Turner,Knussen, & Cunningham, 1990). Furthermore, King et al.(2006) identified the childs functional ability, child activity

In the International Classification of Functioning,Disability and Health, the World Health Organization(WHO) defines participation as involvement in a lifesituation (2001). Participation in out-of-school-time (OST)activities plays an important role in the promotion ofchildrens health, well-being, and development. Participationin such activities is positively associated with childrensmental and physical health and the development of essentialskills, competencies, and social relationships (Forsyth &Jarvis, 2002; Larson & Verma, 1999; Mahoney, Larson, &Eccles, 2005; Simeonsson, Carlson, Huntington, McMillen, &Brent, 2001). Involvement in the everyday activities of

RsumDescription. Les interactions entre les enfants et leur environnement physique et social permettent dobserver que ceux et cellesqui sont atteints dun handicap sont particulirement vulnrables aux restrictions de participation. But. Cette tude avait pourobjectif de mieux comprendre la perception des enfants handicaps lgard de leur participation des activits se droulant divers endroits en dehors des heures de classe.Mthodologie.Une tude de cas a t utilise afin dexaminer la perception de sixenfants diffrents au moyen de la Childrens Assessment of Participation and Enjoyment (CAPE), de photos prises lors des activitsen dehors des heures de classes et dentrevues semi-structures. Rsultats. Les rsultats de la mesure CAPE indiquent que lesenfants participaient le plus souvent des activits de loisirs. Les photos et les entrevues ont permis de faire ressortir quatrethmes principaux mettant en valeur le lien profond qui existe entre les activits des enfants et les diffrents endroits o elles ontlieu. Consquences. En plus daider les ergothrapeutes mieux comprendre comment les enfants handicaps conoivent leurparticipation et peroivent les endroits o se droulent leurs activits, cette tude pilote dmontre comment la photographiepeut permettre de faire participer des enfants la recherche.

AbstractBackground. Children with disabilities are particularly vulnerable to participation restrictions resulting from the interactionsbetween children and their physical and social environments. Purpose. The purpose of this study was to gain a betterunderstanding of how children with disabilities view their participation in out-of-school-time (OST) activities in a range ofenvironmental settings.Methods. A case-study design was used to examine six childrens views on their OST activities using theChildrens Assessment of Participation and Enjoyment (CAPE), photographs of their OST activity settings, and semi-structuredinterviews. Findings. CAPE results indicated that the children participated most often in recreational activities. Through the useof photographs and interviews, four major themes emerged that emphasized a deep interconnection between childhoodactivities and settings. Implications. This unique pilot study contributes to developing an understanding for occupationaltherapists about how children with disabilities view their participation, their activity environments, and how photographs canbe used to engage children in research.

Children with disabilities' perceptions of activity participation andenvironments: A pilot study

Mots cls Participation Enfants Handicap Photos tude de cas

CAOT PUBLICATIONS ACE

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preferences, and family participation in social andrecreational activities as major determinants of the childsparticipation. In addition, they found that child and familypreferences were important predictors of childrens partici-pation following adjustment for the childs functional ability.They also found that factors such as family cohesion andparental perceptions of environments were relativelyunsupportive, and supportive relationships for the childindirectly influenced child participation (King et al.).

Research on childrens issues has typically beenconducted by gathering information about the child fromsources such as parents and health care professionals withoutseeking the unique perspective of the child (Driessnack,2005; Kortesluoma, Hentinen, & Nikkonen, 2003).Researchers have acknowledged the importance of capturingchildrens unique perspectives, which differ from adultconcerns and perceptions (Coles, 1986). Despite thisrecognition, interviewing children poses unique challengesand many of the traditional adult interviewing techniques arenot effective for eliciting childrens perspectives (Bradding &Horstman, 1999, as cited in Driessnack). Nonetheless,understanding children with disabilities unique perspectivesis essential to the future development of programs, services,and opportunities to effectively meet their activity needs.

Two theoretical frameworks were used to guide theexploration of children with disabilities perspectives of theirOST activities and their environments: The InternationalClassification of Function and Disability ([ICF]; WHO, 2001)and the Canadian Model of Occupational Performance([CMOP]; Canadian Association of Occupational Therapists[CAOT], 1997). The ICF recognizes that disability is auniversal human experience and shifts the focus from thecause of a specific disability to the impact it has on the livesof people in society. The ICF takes into account the socialmodel of disability, which regards disability as a social issueand not an individuals attribute (Forsyth, Colver, Alvanides,Woolley, & Lowe, 2007). The CMOP is an occupationaltherapy model that depicts the dynamic interaction thatexists between persons, environment, and occupation(CAOT). Spirituality lies at the centre of the model,representing the idea that spirituality resides in persons, isshaped by the environment, and gives meaning tooccupations (CAOT, p. 33).

In the present study, photographs were used as amedium to give a voice to children with disabilitiesapopulation whose perspective has often been overlooked inpast research. The photographs were used as a tool during theinterview process to elicit information and descriptions ofsupports and barriers to childrens OST activityenvironments. Please note that typically developing childrenwere not used as a comparison in this study. The purpose ofthis study was to gain a better understanding of how childrenwith disabilities view their participation in OST activities and

settings. The knowledge gained in this pilot study mayinform the practice of occupational therapists and otherhealth care professionals and will contribute to the futuredevelopment of a larger research study.

MethodsA case study design was used to gain a better understandingof the OST activities and activity settings of children andyouth with disabilities. Case studies are useful whenexploring new or complex phenomena in order to obtain amore holistic view of the phenomenon of interest (Fitzgerald,1999; Tellis, 1997). In this study, cases consisted of a child oryouth with a disability and a parent, as appropriate. This pilotstudy is a collective case study; that is, it examines multiplecases in order to develop a greater understanding of aphenomenon and explore new or under-researched areas(Fitzgerald; Stake, 1995).

ParticipantsEthical approval for the study was obtained from McMasterUniversity and a childrens rehabilitation centre in southernOntario. This centre previously completed research withCanChild Centre for Childhood Disability Research and hadexpressed an interest to be involved in any CanChild researchthat focused on childrens participation. CanChild works inpartnership with all Ontario childrens rehabilitation centres.Prior to participation in the study, written consent wasobtained from the parents or the guardians of participantsand assent was obtained from the child participants.Participants were able to withdraw from the study at any timewithout consequence.

Recruitment packages were sent to the childrens rehabil-itation centre and then mailed by the administrator to eligiblefamilies. Included in the study were children and youth ofeither sex, between the ages of 8 and 13, living with adisability, and attending the centre where recruitment wasdone. Children were excluded if they were unable tocommunicate their activities and experiences (as judged bytheir parents at time of recruitment), or if participants ortheir parent(s)/guardian(s) felt uncomfortable or unable torespond to interview questions and questionnaires inEnglish. Children under the age of eight years were excludedfrom the study as children of this age have been found to beless able to reliably recall and articulate their activity partici-pation and activity settings (Zwiers & Morrissette, 1999).

Study participants consisted of six English-speakingCaucasian children ages 8 to 13 with various physical anddevelopmental disabilities. Four participants had physical ormotor impairments and two participants had developmentaldisabilities. The sample consisted of five males, including oneset of brothers, and one female. Five participants were from atwo-parent family, and one participant was from a single-parent family. Five participants lived in a major urban


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community (population over 100,000), and one participantlived in a rural community (population less than 3,000). Themajority of the participants lived in a household with anannual family income of $60,000 or more.

Data collectionMeasuresParticipants views of their OST activities, their environments,and their associated meanings were captured using multiplemethods, including a standardized assessment, the ChildrensAssessment of Participation and Enjoyment (CAPE; King etal., 2004), photographs, and semi-structured interviews.Quantitative data and photographs were used selectively toenhance the qualitative interview data. The use andintegration of multiple sources of data help to support casefindings and reduce the likelihood of misinterpretation (Yin,2003). Specifically in relation to research with children, it hasbeen noted that the use of multiple methods may producericher data and a better representation of childrensexperiences, especially if the methods help to engage thechildrens attention and interest (Darbyshire, MacDougall, &Schiller, 2005).

The CAPE is a standardized assessment of childrensactivity participation outside of school-mandated activities. Itmeasures five dimensions of activity participation: thenumber of activities a child/youth does, how often, withwhom, where, and their level of enjoyment. The CAPEincludes 50 activities within 5 activity types: recreational,active physical, social, skill-based, and self-improvementactivities. The psychometric properties of the CAPE havebeen reported (King et al., 2004; Law, Baum, & Dunn, 2005).Test-retest reliability for the five scales on the CAPE rangefrom poor to good (0.64 to 0.86) based on intra-classcorrelation coefficients. Internal consistency ranges frompoor to adequate (0.32 to 0.62) based on Cronbachs alpha.Content validity was addressed in the tool development, and

construct validity has been established by comparison withknown predictors of childrens participation and thePreferences for the Activities of Children (PAC; King et al.,2007). Despite having some variability in its validity andreliability, the CAPE was the most appropriate measure as itis a self-report measure for children/youth ages 6 to 21 years,and is one of the few existing instruments that directlymeasures participation (King et al., 2006). Based on theCMOP theoretical framework depicting the dynamicinteraction that exists between person, environment, andoccupation (CAOT, 1997), the CAPE allows the child to placeimportance on activities that are meaningful to them ratherthan on parental and other individuals beliefs of what theyconsider is meaningful to the child. Thus, the CAPE was usedin this pilot study as a measure that may be useful for a pointof comparison in future studies.

Phase one of the CAPE is a self-administered question-naire that measures the first two dimensions: which activitiesthe child participated in and how often they had participatedwithin the previous four-month period. How often a childparticipated is measured on a scale of 1 (1 time in the past 4months) to 7 (1 time a day or more). Phase two of theCAPE measures the last three dimensions: where and withwhom the child took part in activities and the childs level ofenjoyment. Level of activity enjoyment is measured on a scaleof 1 (not at all) to 5 (love it).

Children took photographs with parental/guardian helpas needed, using a disposable camera over a period of at leastseven days. These photographs were used as a tool tofacilitate semi-structured interviews with the participants.

The student researchers conducted semi-structuredinterviews in the participants homes to discuss the content ofphotographs the child/youth had taken. To address theuniqueness of interviewing children, special attention wasgiven to building rapport with participants, using both open-and closed-ended questions, minimizing leading, and havinga parent/guardian present or involved as needed (Irwin &Johnson, 2005). Participants were asked to select their twofavourite places and one least favourite place. Next, aninterview guide with open- and closed-ended questions wasused to gain more information about the activity settings andparticipants perspectives of these environments. Questionsasked in the interview guide included, Tell me about thisplace and what you do here, and Tell me what you like/dontlike about this place. Why? They were developed from theresearchers reflections on what basic questions would helpencourage a child to describe an activity environment. Thesequestions allowed the participants to explore the positive aswell as negative aspects surrounding their activityenvironments rather than placing a focus on their disability.Examples of further questions beyond the interview guideincluded how the participant felt in a given environment andwhat was special about it; these were consistent with the


TABLE 1Participant information.

Participant Sex Age Type of disability Mobility

1 M 8 Emotional/Behavioural/ Independent

Developmental

2 M 13 Emotional/Behavioural/ Independent

Developmental

3 M 11 Cardiopulmonary Independent/Wheelchair

4 M 13 Physical/Motor Independentimpairment Wheelchair

5 M 10 Physical/Motor Independent/impairment Wheelchair

6 F 13 Physical/Motorimpairment Wheelchair

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CMOP, which places importance on the meaning behind theactivity (CAOT, 1997). The open-ended interview questionsprovided the child participants the opportunity to identifyand explore the meaning of their activity environments.Questions asked were also consistent with the ICF, whichrecognizes that disability is a universal human experienceand shifts the focus from the cause of a specific disability tothe impact it has on the lives of people in society (Forsyth etal., 2007).

All interviews were conducted by pairs of entry-levelmasters occupational therapy students. Each pair of studentsinterviewed at least one participant, and there were sixstudent researchers in total. The same pair of researcherscarried out both interviews (phase two of the CAPE and thesemi-structured interview) with a given participant in orderto establish and maintain rapport. Researchers did not haveknowledge of participants or the recruitment agency prior tothe study. Before conducting interviews, each member of thestudy team used self-reflection to identify potential personalpreconceptions relevant to the study and also identified andbracketed their assumptions about expected results.

ProcedureFamilies who expressed interest in participating in the studywere contacted by a member of the study team to arrange aninitial home visit. Prior to the visit, families received apackage in the mail containing a letter of information,consent form, self-report demographic questionnaire, andphase one of the CAPE to complete on their own.

In the initial meeting at the participants home, theresearchers facilitated completion of phase two of the CAPEby the participant with the assistance of a parent, asappropriate. Participants were then given a disposable cameraand instructed to take photographs of their usual OST activitysettings over a minimum of seven days. The families receivedpostage-paid envelopes in which to return the cameras to thestudy team. Photographs were then developed and returned toparticipants during the second meeting. At that time, thecontent of the photographs was discussed with the partic-ipants in semi-structured, home-based interviews. Interviewslasted an average of 30 minutes and no longer than one hour.Interviews were tape-recorded, transcribed, and reviewed bythe interviewers to check for accuracy. The total timecommitment for each participant, including both home visits,was no more than two hours. Data for this pilot study wascollected over the five-week time period available for thestudent research project. Transcription of the interviews wascompleted by an outside source and checked by the pairs whohad completed the interviews.

Data analysisDescriptive statistics (means, medians, and standarddeviations) for CAPE data were calculated and served to

describe five dimensions of the participants activity partici-pation. Using the CAPE data, participation intensity was alsocalculated by dividing the sum of item frequency by thenumber of possible activities in each activity-type scale. Thephotographs that study participants took were used toillustrate and enrich interview findings. The content of thephotos was not analyzed per se, but all researchers viewed thephotos during the coding process to be aware of OST activityenvironments that participants had photographed.

The six researchers analyzed the Interview transcriptsusing an inductive content-analysis approach (Graneheim &Lundman, 2004). This process involved coding statementsbased on their key concepts, clustering these codes intothemes, and then refining the themes. An editing approach toanalysis was also used in that codes emerged from the dataand were not predetermined (Miller & Crabtree, 1999).Coding was done manually, and negative case analysis wasused to ensure that all data were represented in the finalthemes. The entire student research team established acoding scheme based on the first two transcripts, and onepair of student researchers coded the remaining fourtranscripts once an understanding of the phenomenon hadbeen established. Maintaining at least two researchers in thisrole guaranteed triangulation. To ensure that all researchershad an understanding of each participants perception of OSTactivities, each team member read all six interviewtranscripts. Themes were subsequently developed by allresearchers from an inductive analysis of the codes. Thisinvolves grouping related codes and identifying them under atheme so that each code is captured in one of five themes.Theoretical saturation cannot be presumed as sampling wasnot continued to the point of redundancy in the data becausethe time available for data collection was limited.

The quantitative and qualitative data were used todevelop a description of the nature and context of OSTactivities for the study participants. A decision trail wasdocumented by the researchers as a group throughout theanalysis process.

TrustworthinessSeveral strategies were implemented during the researchprocess to ensure the trustworthiness of the results (Letts etal., 2007). Credibility was ensured by using multiple methodsof gathering data, using a reflective approach on the part ofthe research team to increase awareness of personal bias,triangulation in the use of quantitative and qualitative data,and having multiple researchers. The time constraints of thestudy precluded the use of member-checking to verify dataand interpretation. Dependability was reinforced by thedescription of an audit trail. Confirmability was alsosupported by having a team of researchers along with expertinput from experienced research supervisors.


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ResultsResults from the CAPE were used to gain a generaldescription of the participants participation over the four-month period from December to April prior to theinterviews. The CAPE was used to determine the intensity ofactivity (what form of activities children participated in themost) and the enjoyment of activities. CAPE results groupactivities based on type as well as their formal or informalnature. The five activity types include recreation activities(e.g., puzzles and watching television), physical activities(e.g., swimming and track and field), social activities (e.g.,playing with friends and talking on the phone), skill-basedactivities (e.g., music lessons or horseback riding), and self-improvement activities (e.g., reading and going to thelibrary). Formal activities have designated leaders and rulesor goals, whereas informal activities involve no planningprior to the activity.

The results of the mean intensity scores from the CAPEindicate that subjects participated the most in recreationalactivities (mean = 4.07, standard deviation [SD] = 1.02)followed by social (mean = 3.20, SD = 0.87), self-improvement (mean = 2.77, SD = 1.40), active physical(mean = 1.53, SD = 1.35), and skill-based activities (mean =

0.85, SD = 0.67). Intensity scores for each subscale vary byparticipant as shown in Figure 1. The mean intensity forformal and informal activities was also calculated.Participants in the study participated in more informalactivities (mean = 3.15, SD = 0.72) than formal activities(mean = 1.19, SD = 0.85). Figure 2 illustrates the intensitiesfor participants formal and informal activities.

Participants mean enjoyment indicated participantsenjoyed physical activities most (mean = 4.42, SD = 0.49),followed by social (mean = 4.38, SD = 0.28), recreational(mean = 4.21, SD = 0.48), self-improvement (mean = 3.05,SD = 0.73), and skill-based (mean = 2.83, SD = 0.96)activities. Specific enjoyment scores for each participant forsubscales can be seen in Figure 3. Participants demonstratedcomparable mean enjoyment for both informal and formalactivities. Figure 4 demonstrates individual participantenjoyment scores for formal and informal activities.

Table 2 presents the activity environments that participantsidentified when discussing the photographs of their favouriteand least favourite activity settings, as well as the activities theydo there. Four themes emerged from these discussions:experience of place, connecting with the natural environment,negotiating the environment, and supports and barriers.


FIGURE 1Intensity of participation divided by activity type, from the Childrens Assessment of Participation and Enjoyment.

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FIGURE 2Intensity of participation divided by formality of activities from the Childrens Assessment of Participation and Enjoyment.

FIGURE 3Enjoyment of participation divided by activity type, from the Childrens Assement of Participation and Enjoyment.

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Experience of placeParticipants articulated both positive and negative experiencesof place in relation to their level of enjoyment, likes anddislikes, and feelings about being in that place. Experience ofplace was intertwined with, and thus difficult to differentiatefrom, the activity done there. Participants enjoyed a variety ofactivities that they often found meaningful.

Positive experiences were often described as fun andmatched their interests and abilities while negative

experiences did not match their interests. Participants likedvarious aspects of the environment, including the people, theactivity, and nature. They also reported that feeling acceptedand having a choice of activity was important to them in theirexperience of place. Participants had positive feelings inmany places; they felt happy, excited, free, relaxed, good,important, and accepted. Places were described as special andcomfortable.

P4: Its a comfortable place . . . theres special things wedo every Sunday in service. We come in, we . . . theresthe greeting. And then theres a few songs of praise thenyouve got announcements and celebrations. Its funsome of the things that come up. Our minister or one ofour ministers celebrates every time that the Leaf s win agame.Conversely, some of the negative feelings related to place

and activity included feelings of anger, fear, or annoyance.Participants health status also affected their experience.

Participants often reported that there was nothing thatthey disliked about their favourite places. When describingtheir least favourite place, participants identified aspects ofthe activity and environment that they disliked, but alsonoted many positive aspects.


TABLE 2Participants photographs of activity environments.

Participant Favourite places Least favourite place

1 Butterfly Respite home Church

conservatory

2 Park Grocery store Library

3 Road/Street The path Park

4 Bedroom Church Garden

5 Bedroom Park Library

6 Barnyard Living room Movie theatre

FIGURE 4Intensity of participation divided by formality of activities from the Childrens Assessment of Participation and Enjoyment.

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Limitations of public places and accessibility contributedto negative experiences of place. Participants were able toidentify ways of changing limitations within theirenvironments, specifically related to their dislikes.

P3: Ah, mostly a playground should be more . . . like aplayground should be more tarmac and it should bemore accessible.Two participants valued independence in activities while

two other participants valued being alone in their bedrooms.Figure 5 shows one participants photograph of a favouriteactivity setting.

When asked why this was a favourite place, theparticipant explained:

P5: Well . . . a lot of its because I really like playing withmy stuffed animals in there and also I just like playing inthere mostly.

Connecting with the natural environmentThe theme of connecting with the natural environmentevolved from the way the participants described theirinteraction with their natural environment through their fivesenses. Participant Fours description of a garden illustratesthis theme:

P4: I like the garden ... there was one plant, there were afew plants there ... I really liked. There was onesomebody started it looked like it was fake, a plasticplant. It looked that way but it was completely real. Inthat same garden there was a fuzzy plant, a soft one.Uhm ... there were some special things for people. Therewere gardens for you to look at, smell, touch ... I likedsome of the grass there. Driving by in my chair it wouldbrush on me; thats so nice. I like it. It ... in the end I ... webegan calling it tickle grass.Connections with animals and nature were very

apparent. Participants noted colourful butterflies, ticklegrass, fuzzy plants, puff ball spores, nuzzling a horse, looking

at and smelling gardens, and watching wildlife and nature.Figure 6 portrays a butterfly garden, an environment inwhich Participant One was able to come into physical contactwith the creatures.

The participant explained the experience of being in abutterfly garden, stating:

P1: Not a glass window; you actually get to ... touch them ...

Negotiating the environmentNegotiating the environment is a theme that emerged fromparticipants discussing moving around in, getting to, andensuring safety in different environments. Participants werethus required to negotiate environments in order tosuccessfully participate within them. For example, ParticipantTwo described negotiating the grocery store as follows:

P2: I just go zoom and right out.Participants revealed an awareness of their individual

needs, adaptability, problem-solving skills, and positiveattitudes while in different environments. They reportedusing different assistive devices depending on the activity aswell as occasionally having assistance from others to getaround. Various means of transportation were used to accessthe activity environments, for example, walking, takingpublic buses, riding bikes, and using wheelchairs; partic-ipants also relied on adults for transportation. The type oftransportation used also depended on time considerationsand proximity of the place, especially for one participant wholived in a rural location. As participants and their parentswere keenly aware of their needs, safety was ensured byvarious means depending on the nature of the environmentand the activity. For example, cell phone technology andcommunity support were described. Participant Six discussesnegotiating the environment as seen in Figure 7.

P6: Once I went at the theatre to get, I think it was adrink, and one of the staff . . . people he helped me back


FIGURE 5Experience of place (Participant 5); A photographicexample relating to the experience of place theme.

FIGURE 6Connecting with the natural environment (Participant 1);A picture of a butterfly garden corresponding to thetheme of connecting with the natural environment.

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into the theatre, which was really good because theres[a] heavy door on the theatre which I cant really pushopen by myself and then theres the ramp to get up to likeall the seating which some . . . if I have like my electricchair I can handle it, but if I have like my manual one I .. . I cant get it open on my own.

Supports and barriersParticipants consistently identified aspects of theirenvironments and activities that acted as supports or barriersto their participation. These supports and barriers were partof both the physical and social environment, and participantsspoke predominantly of supports rather than barriers.Features that made an environment accessible as well as thosethat made a place physically comfortable were noted assupports. Social supports came in the form of friends, nicehelpers, pets, and neighbours. Participants health issues werea barrier to their participation in some settings.

For some participants, weather was not an issue, whereasfor others, different aspects of the weather, such as snow andmuddy terrain, restricted their participation in certainenvironments, especially if it made the use of wheelchairsdifficult, as illustrated by Participant Fives comment:

P5: Yeah, its annoying when I get stuck because I dontreally mind using my wheelchair that much.Participants also said that their parents sometimes

imposed different kinds of restrictions on them, such asmaking guidelines in relation to their safety or not allowingthem to watch certain movies. Only a few social barriers werenoted, such as having different interests than others or notbeing able to control certain aspects of the socialenvironment that affected their participation, which mayhave upset them. Finally, participants noted that not allenvironments were accessible and identified changes theywould like to see made to make a place more conducive to

their participation. In Figure 8, Participant Three describesan environment where a barrier limits participation.

P3: I liked it but its just I dont find it as accessible as theother places, so like my friends were here and I go, then I cantreally play with them, so theres actually a little bench sittingarea in the park and on the slide area where that house is, soIm just sitting there and sometimes my friends come up . . .

DiscussionThe six children in this study participated in and enjoyed awide variety of activities in various settings, as captured bythe CAPE data and the qualitative interviews and asillustrated in their diverse photos. There was no significantevidence of participation restriction, though it has beennoted that children with disabilities may be vulnerable to this(Forsyth & Jarvis, 2002; Law et al., 1999; Law, King, et al.,2006). These findings could be a testament to participantsand their families making participation in activities a priority,although results may indicate a bias in that parents who areactively involved with their childrens participation may havebeen eager to be a part of the study.

The CAPE data show that participants had the highestmean intensity of participation in recreational activities, andhigher intensity of informal activities overall when comparedto formal activities. Participants also enjoyed physicalactivities best as shown by the mean enjoyment data and hadsimilar enjoyment of formal and informal activities. It wasnoted that participants did not necessarily have the highestintensity participation in the activities in which they also hadthe highest enjoyment. A previous study using the CAPEwith a large sample also showed higher participation ininformal versus formal activities (Law, King, et al., 2006).This study also noted different patterns of participationbetween genders. The sample of the current study had onlyone girl and five boys, and therefore no trends can be seen.


FIGURE 7Negotiating the environment (Participant 6); Oneparticipant described the navigation of this environmentassociated with the theme negotiating the environment.

FIGURE 8Supports and barriers (Participant 3); This photographcorrelates to a barrier for one study participant and fallswithin the theme of supports and barriers.

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Though the participants photographs were not analyzedin a systematic way, they proved to be an effective method inthis study for several reasons. For example, they allowedresearchers to access participants unique views in that agiven place might be named by one participant as favouriteand by another as least favourite. This was seen with thepark and church activity environments. Having the partic-ipants then elaborate on their photos allowed the researchersto understand their experiences in greater depth. Usingphotographs in a qualitative interview also allowedresearchers to engage children in research, and it was acommunication tool to elicit their experiences and ideas.Both participants and their parents were receptive to takingphotographs. For some participants, the use of cameras wasan important factor in their decision to participate in thestudy. Furthermore, some children actually took upphotography as a new hobby after using the cameras. In thisway, the current pilot study expands on previous studies inwhich children took photographs but did not have theopportunity to discuss them (Darbyshire et al., 2005).

Overall, in discussing OST activities and activitysettings, participants experiences highlighted that the settingand the activity were closely interconnected. For example,when asked about their likes and dislikes, participants oftencited that they liked a setting because of the activity they didthere. In essence. this finding illustrates one of the theoreticalframeworks used to guide the study, the CMOP (CAOT,1997), as it speaks to the dynamic interaction between theparticipants, the activities, and activity settings. Participantsmany activities clearly brought meaning to their lives. Thisfinding is similar to that found in the literature that describesparticipation as an experience of engaging in meaningfuloccupations and maintains that participation is important tohealth (CAOT; Law, Petrenchik, Ziviani, & King, 2006). Ingeneral, participants focussed on the positive and were moreeasily able to articulate what they liked about both favouriteand least favourite places as opposed to what they disliked.This may have been because they were asked to take picturesof places they go to, and they may rarely frequent places thatthey dislike, for personal reasons or simply because theirfamilies do not go there. Also, the findings are weightedtowards favourite places since two of these photographs werediscussed, compared with only one least favourite place.

Participants ability to connect to an environment was animportant aspect of their experience. It is significant that allparticipants described positive experiences with nature oranimals, including pets. These connections providedopportunities for discovery and learning. Furthermore, thesocial support necessary for participation stood out, anobservation that, in fact, previous authors (Heah, Case,McGuire, & Law, 2007; King et al., 2006) have noted. Childrenviewed people in the environment as helpful and rarelydescribed the social environment as a barrier to participation.

This is in contrast with a previous finding that social barriers,including attitudes, were in fact a significant environmentalbarrier (Law et al., 1999). Interestingly, the young participantsdid not explicitly name their parents as supports; however,this may simply reflect their perception of their parents role.

Participating in some environments or activities may notalways have been straightforward, but these young partic-ipants negotiated their environment and were able to havefun despite any setbacks. Nonetheless, children did identifysome barriers to participation; for example, accessibility wasraised as a common challenge. In contrast, they did not namespecific aspects of their own disabilities as barriers, disabilitycame across as a part of their lived experience and theynamed factors in the environment around them as barriers.This also relates to previous findings that participation wasbetter predicted by combined positive factors related to thesubjects and the environment rather than by type of disabilityor diagnosis (Almqvist & Granlund, 2005; Law et al., 2004).This observation is also consistent with the ICF (WHO,2001), which incorporates the social model of disability andemphasizes the role of society, including its environments, increating disability.

Participants had positive attitudes when discussing theirexperiences, and these positive attitudes would presumablyenhance their participation. In some cases, they shared ideasthey had for changes that would minimize barriers in thefuture. In other cases, they described actions they had alreadytaken to advocate for change. Thus, as seen in a previousstudy (Law et al., 1999), a discussion of peoples views of anenvironment naturally leads to ideas of how to change andimprove it. This may also indicate childrens developingability to advocate for themselves. By asking about childrenslife experiences and using photographs as a tool to seethrough their eyes, this study provided children with anopportunity to share their ideas for change.

The findings of this pilot study are limited for severalreasons. Since the themes did not reach saturation, thefindings may not fully describe the experiences of all childrenwith physical or developmental disabilities (Morse, 1997).The time constraints of the study also precluded the use ofmember-checking, which is a useful way of increasingtrustworthiness. Finally, interviewing children has beendescribed as challenging for various reasons (Irwin &Johnson, 2005), and this may have had an impact on both thedata collected and the analysis. For example, though stepswere taken to interview the participants in a child-friendlyway, children may be more easily led by words an intervieweruses (Irwin & Johnson), and this may have influenced thecontent of the transcripts. Also, children may say few wordsat a time or speak in a tangential way, and thereforeresearchers need to be cautious not to miss the value of asmall or seemingly unrelated comment (Irwin & Johnson) inthe interview and when analyzing the data.


HARDING ET AL.


This study has relevance to clinical practice withchildren with disabilities and to policies that influence thebuilt environment. For example, the results may encouragehealth care practitioners such as occupational therapists tofocus on what a child can do and a childs participation ratherthan on participation restriction. Also, this study shows thatchildren with disabilities, along with their social supports, areable to negotiate the environment to participate and have fun.Occupational therapists may be in roles in which they canpartner with children and families to facilitate this process. Itwas also noted that participants volunteered ideas to changeand improve the activity environments around them. This iscertainly a reminder of the importance of involving peoplewith disabilities when developing policies that will influencethem as they are the end-users and have an expertise basedon their life experiences.

This pilot study demonstrates that many opportunitiesremain for developing further research that explores therelationship between childrens participation in OST activitiesand the activity settings. Future studies could use largersamples to allow for a better comparison with previous CAPEstudies with large samples or to make it possible to have twogroups within a study to allow for comparison. For example, agroup of children with disabilities could be compared with agroup of typically developing children to look at similaritiesand differences in participation in OST activities and views onactivity settings. This study included children with varieddisabilities; therefore, future research could focus on a larger,more homogenous sample in order draw stronger conclusionsrelated to the perspective of one group. Other areas for furtherinvestigation include advocacy by children with disabilitiesand the roles that families and communities play in facilitatingor limiting a childs participation.

ConclusionThis study demonstrates the wide variety of activities and therespective settings experienced by six children with variousdisabilities. Participants often enjoyed activities when theyfelt connected to the environment and if the activity settingprovided physical or social supports to enable their partici-pation. Despite experiencing environmental barriers, thechildren did not focus on how their disabilities limited theirparticipation, but rather they adapted to and overcame theseobstacles. Ultimately, they were able to fulfill a major goal ofactivity participation for all children: having fun. Byinterviewing the young participants, this study provided aplatform that gave these children an opportunity to sharetheir ideas and to speak about their activities andenvironments using their own voices. The results of thisstudy should encourage other researchers to employ thevoices of children in future research endeavours. Theapplication of this client-centred research is important notonly in the exchange of critical information between

researchers and health care service providers, but it is alsobeneficial in ensuring that this unique client-centredperspective is included in government policy and ultimatelyreflected in all facets of health care, social programming, andservice provision for all children.

AcknowledgementsThe authors would like to thank the child development centreand their staff as well as the CanChild Centre for ChildhoodDisability Research, Hamilton, Ontario, for their supportwith this research. Special thanks to the children and familieswho participated in this project and shared their uniquevoices with us.

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Key messages This pilot study explored OST activity participationfrom childrens perspectives. Using photographs in aqualitative interview was an effective method to engagechildren in research and elicit their experiences.

Participants experiences highlighted that the settingand the activity were closely interconnected.

Participants described actions they had taken to elicitchange in order to enhance their participation. Thisresearch project provided them a platform from whichthey could share their ideas for change. The voices ofchildren can be valuable to future research, especiallyto maintain a client-centred focus.

HARDING ET AL.


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AuthorsJohanna Harding, MSc OT, OT Reg. (Ont.) is Occupational

Therapist, CBI Physiotherapy and Rehabilitation Centre, 305Milner Ave., Suite 214, Scarborough, ON, Canada, M1B 3V4.Telephone: 1-416-289-3930. E-mail: [email protected].

Kimberly Harding, MSc OT, OT Reg. (NS.), is OccupationalTherapist, St. Marthas Regional Hospital, 25 Bay St.,Antigonish, NS, Canada, B2G 2G5.

Patricia Jamieson, MSc OT, OT Reg. (Ont.), is OccupationalTherapist, Hpital Rgional de Sudbury Regional Hospital, 41Ramsey Lake Road, Sudbury, ON, Canada, P3E 5J1.

Maria Mullally, MSc OT, OT Reg. (Ont.), is OccupationalTherapist, The Ottawa Hospital, Civic Campus, 1053 CarlingAve., Ottawa, ON, K2P 0X7.

Carolyn Politi, MSc OT, OT Reg. (Ont.), is OccupationalTherapist, Functional Rehabilitation, Inc., 115 King St. W., Suite200, Dundas, ON, Canada, L9H 1V1.

Erline Wong-Sing, MSc OT, is Occupational Therapist, ProvidenceHealth Care, 1081 Burrard Street, Vancouver, BC, Canada, V6Z1Y6.

Mary Law, PhD, FACOT, FCAHS, Professor and Associate Dean,School of Rehabilitation Science, McMaster University, 1400Main St W, Hamilton, ON, Canada, L8S 1C7

Theresa M. Petrenchik, PhD, OT Reg. (Ont.),CanChild Centre forChildhood Disability Research, McMaster University, 1400Main St W, Hamilton, ON, Canada, L8S 1C7.


children with disabilities' perceptions of activity participation and environments_ a pilot study

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