“I Do Lots of Things”: Children with cerebral palsy’s competence for everyday activities

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“I Do Lots of Things”: Children withcerebral palsy’s competence foreveryday activitiesJessica M. Kramer a & Joy Hammel ba Department of Occupational Therapy, Sargent College ofHealth and Rehabilitation Sciences , Boston University , Boston,Massachusetts, USAb College of Applied Health Sciences , University of Illinois atChicago , Chicago, Illinois, USAPublished online: 17 May 2011.

To cite this article: Jessica M. Kramer & Joy Hammel (2011) “I Do Lots of Things”: Childrenwith cerebral palsy’s competence for everyday activities, International Journal of Disability,Development and Education, 58:2, 121-136, DOI: 10.1080/1034912X.2011.570496

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International Journal of Disability, Development and EducationVol. 58, No. 2, June 2011, 121–136

ISSN 1034-912X print/ISSN 1465-346X online© 2011 Taylor & FrancisDOI: 10.1080/1034912X.2011.570496http://www.informaworld.com

“I Do Lots of Things”: Children with cerebral palsy’s competence for everyday activities

Jessica M. Kramera* and Joy Hammelb

aDepartment of Occupational Therapy, Sargent College of Health and Rehabilitation Sciences, Boston University, Boston, Massachusetts, USA; bCollege of Applied Health Sciences, University of Illinois at Chicago, Chicago, Illinois, USATaylor and FrancisCIJD_A_570496.sgm10.1080/1034912X.2011.570496International Journal of Disability, Development and Education1034-912X (print)/1465-346X (online)Article2011Taylor & Francis582000000June 2011Lecturer [email protected] This study explored how children with cerebral palsy describe competent performance

in everyday activities and sought to better understand the processes by which thechildren developed competence. Five children with cerebral palsy aged six to 17 yearsparticipated in a three-step procedure that included two observations, one semi-structured interview with narrative elaboration, and one cognitive interview. Threefactors influenced the competence of children in this study: the environment—people,places, and objects; the quality of the activity—fun and importance; and the child’spersonal characteristics—strengths and impairments. The process of buildingcompetence was characterised by practice and problem-solving. The outcome of thisprocess was being competent or “doing lots of things”. Children played an active roleby problem-solving impairment-related challenges or environmental barriers. “Doing”was not related to the child’s skills or level of independence, but to engagement inactivities considered fun and important to the child.

Keywords: Activities of Daily Living; children with disabilities; competence; leisure activities; physical environment; self-efficacy; self-report; social environment

Introduction

Scholars theorise that a child’s perception of his or her competence influences the formationof self-concept and global self-worth, shapes the extent to which one is intrinsically moti-vated, and enables self-determined behaviour (Harter, 1985, 1999; Ryan & Deci, 2000).Therefore, perceived competence may be an important foundation for a child’s successfullearning and development. One may assume that children with disabilities, who mayencounter challenges related to physical, cognitive, or sensory impairments, feel lesscompetent carrying out everyday activities and tasks. Decreased perceived competencecould then further delay the learning and development of children with disabilities. In manystudies, however, children with disabilities’ perceived competence is not consistently asso-ciated with impairment severity nor significantly different from children without disabilities(e.g., Armstrong, Rosenbaum, & King, 1992; Engelbert, Gulmans, Uiterwaal, & Helders,2001; Shields, Murdoch, Loy, Dodd, & Taylor, 2006). These findings challenge the assump-tion that disability automatically leads to a decreased sense of competence. However, theprocesses by which children with disabilities develop their sense of competence have notbeen fully explored.

One potential approach to understanding these processes is to consider that children withdisabilities construct their own understandings of competence. Contemporary sociology

*Corresponding author. Email: [email protected]

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122 J. M. Kramer and J. Hammel

recognises children as social actors who demonstrate agency within the socially, culturally,and politically created structures of childhood (James & James, 2004; James, Jenks, &Prout, 1998; Mayall, 2004). This understanding of childhood is particularly relevant to chil-dren with disabilities, as disability can be viewed as a socially, culturally, and politicallygenerated category (Oliver, 1996; Priestley, 2003). The category of “disability” is createdwhen children do not meet social and cultural expectations. When a child’s body or minddiffers from the majority of children, he or she may not be able to demonstrate behavioursand skills in the manner that a particular culture associates with an idealised model of devel-opment (Priestley, 1998; Stott & Bowman, 1996). Society then constructs the category ofdevelopmental disability to explain and classify this difference. Contemporary sociologicalapproaches to understanding disability (e.g., Oliver, 1996) and childhood (e.g., James et al.,1998) enable us to question assumed incompetencies that society associates with theseconstructed categories, and provide an opportunity for us to understand the competency ofchildren with disabilities in a new way (Priestley, 1998).

Research exploring children’s perceived competence typically utilises quantitativemethods, such as self-report assessments (Harter, 1982). However, qualitative methods canprovide researchers with an in-depth understanding of the processes by which children withdisabilities construct competence by directly eliciting children’s perspectives regardingtheir lived experiences (Barnes, 1992). The literature contains only a few examples of qual-itative studies utilising interviews and observations to examine children with disabilities’perspectives regarding their competence. These studies suggest that children with disabili-ties do not focus on their impairments and challenges, but on their abilities, strengths, andthe ways in which they are similar to their peers (Conners & Stalker, 2007; Curtin & Clarke,2005; Davis & Watson, 2002; Priestley, Corker, & Watson, 1999). For example, in onestudy children with disabilities established universal human attributes through recognitionssuch as “everybody has problems doing something” (Priestley et al., 1999, p. 94). Thesefindings provide clues about the potential processes by which children with disabilitiesconstruct their competence, and suggest that focusing on strengths may be one way inwhich children with disabilities construct competence in relation to their disability.

These processes may be better illuminated by grounding our exploration of children’scompetency in the knowledge children with disabilities generate about themselves and theirenvironments through the actual performance of specific tasks and everyday activities(Mayall, 2000). In this study, everyday activities are defined as frequently performed, goal-directed actions that a child executes in order to take care of themselves, interact withothers, learn, and play (American Occupational Therapy Association, 2002; World HealthOrganization, 2001). Few qualitative studies have taken the approach of examining compe-tence in the context of performing everyday activities. In a study by Skold, Josephsson, andEliasson (2004), children with hemiplegic cerebral palsy described how they used a varietyof strategies to complete activities that required the use of both hands. The strategies chil-dren selected depended on their own abilities, preferences, and the physical and socialcontext. In another study by Miller and Reid (2003) examining a play intervention usingvirtual reality technology, children enjoyed the opportunity to play in their own way anddemonstrated an increased sense of self-efficacy. Further, children felt safe to explore andchallenge their abilities within the virtual reality play environment. In a study by Lightfoot,Wright, and Sloper (1999), children with physical disabilities and chronic illnesses indi-cated that their success in school depended on support from people, accessible physicalspaces, and modifications to school expectations. In these studies, the extent to which achild’s impairments influenced perceptions of competent performance depended upon thesupport provided by the environment. However, these studies do not consider the extent to

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Children with Cerebral Palsy’s Competence for Everyday Activities 123

which children actively seek out or modify their environments. This omission contributesto the assumption that children are passive bodies that accept environments controlled byadults. Yet modern approaches to the sociology of childhood point researchers to attend toscenarios in which children act as agents that influence their environments (James & Prout,1997; Mayall, 2000).

This study will use a qualitative approach explicitly informed by a sociological perspec-tive of childhood and disability to answer the following questions:

How do children with cerebral palsy describe the competent performance of everydayactivities? How do children with cerebral palsy describe the process of developing compe-tence for specific activities?

Method

Research Design

Barnes (1992) suggested that qualitative approaches enable a more in-depth understandingof the disability experience due to the method’s alignment with constructivist epistemolo-gies that acknowledge that people create their own meaning. A strengths-based approachguided the researchers’ selection of qualitative methods. These methods sought to buildupon each child’s unique assets (Ludema, Cooperrider, & Barrett, 2001) and involve thechild as much as possible in the data-gathering process in order to optimally capture themeanings of competence within their everyday experiences. The assumption that each childhas the capacity to demonstrate agency within the research process and make unique contri-butions aligns with the contemporary approach to childhood sociology utilised in this study(James & James, 2004). When researchers believe that each child has the capacity to shareknowledge (Davis & Watson, 2002; Mayall, 2000; O’Kane, 2000) and when methods areimplemented in ways that are fun and child-friendly (Barker & Weller, 2003; Cook & Hess,2007), children’s active involvement in research is supported.

Sampling and Recruitment

The study received ethical approval from the Office for the Protection of Human SubjectsInstitutional Review Board at the University of Illinois at Chicago. The initial goal was torecruit children and youth aged six to 17 years with a range of developmental disabilities.The first author provided recruitment materials to professional contacts, such as occupa-tional therapists and parent advocates at local clinics, hospitals, and community organisa-tions. Contacts were instructed to provide information about the study to the parents ofchildren with disabilities meeting the following inclusion criteria: ages six to 17 years, adiagnosis of developmental disability, and children who could communicate ideas and feel-ings about doing everyday activities. As the first three recruits were children with cerebralpalsy, the sampling strategy shifted to gain an in-depth understanding of the competence ofchildren with this specific medical diagnosis. Continued sampling of children in this groupattempted to seek maximum variation in age, gender, ethnicity, and urban/suburban livingenvironments (Patton, 2002). In total, five children with cerebral palsy participated in thisstudy (see Table 1).

Data Collection Tools

Three primary data collection techniques were used during the study. Participant obser-vations enabled the children to contextualise their sense of competence within typical

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everyday settings and activities (Patton, 2002). Narrative elaboration (Faller, 2003) andcognitive interviewing (Rebok et al., 2001) were used to gain a deeper understanding ofchildren’s thoughts and feelings about their competence for doing those everyday activi-ties. These two techniques utilise a semi-structured approach that allowed the researcherto ask questions in a flexible manner that capitalised on each individual child’s strengthsand abilities.

Participant Observations

Two observations were undertaken, one at home and a second in a setting chosen by thechild and his or her parent. Conducting participant observations in the child’s space allowedeach child to use the supports and resources within his or her environment when sharinginformation. For example, some children demonstrated activities using personal belong-ings, and other children described something that happened in the past within the contextof the current observation setting (Mayall, 2000; Stalker, 1998). Conducting observationsin different locations also provided children with the opportunity to reveal the impact thatcontext had on competence (Mayall, 2000).

To provide the children with an idea of what would happen during the observa-tions, the researcher provided a checklist indicating activities the child could demon-strate during the observation (i.e., “Show me three things that you are good at doing”,“Show me three things that you have a hard time doing [difficult]”). This checklistwas designed to elicit children’s perspectives regarding activities they felt more or lesscompetent performing. When appropriate, during the observation the researcherconducted embedded cognitive interviews. These interviews used a “think aloud” tech-nique to encourage the child to share what they were thinking and feeling whileengaging in activities or talking about specific tasks (Drennan, 2003; Rebok et al.,2001). The researcher took notes during the observations using a detective notebook (abound notepad) to record the children’s responses to the embedded cognitive inter-view questions. The researcher and child also worked together to take pictures ofobjects and other people, or when the child engaged in different activities (Einarsdot-tir, 2005).

Semi-structured Interview

During the semi-structured interview, children viewed the photographs taken during theobservations and elaborated on their thoughts or feelings about the objects, persons, ortasks depicted. This technique is referred to as narrative elaboration (Faller, 2003). Semi-structured interview questions sought to elicit additional information about the child’ssense of competence for everyday activities (Taylor & Bogdan, 1998). Several childrenused augmentative communication devices complemented by facial expressions, bodymovements, and pantomime demonstration to engage in the interview and convey theirperceptions and feelings. Children then sorted each photograph into categories to rankhow competent they felt doing the activity and the importance of the activity. Compe-tence categories included: “I have a big problem doing this”, “I have a little problemdoing this”, “I do this ok”, and “I am really good at doing this”. Importance categoriesincluded: “Not really important to me”, “Important to me”, “Really important to me”,and “Most important of all to me”. This game encouraged additional conversation andenabled the child to compare their feelings of competence for different activities(O’Kane, 2000).

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The Child Occupational Self-assessment

The third phase included the administration of the Child Occupational Self-assessment(Keller, Kafkes, Basu, Federico, & Kielhofner, 2005), a paper assessment that childrencompleted by circling responses with a pencil, or verbalising or pointing to their response,depending on their physical abilities. The interviewer used a cognitive interview approachto gather data. Cognitive interviews are used to ask questions such as “what were you think-ing when you picked that response” and “tell me about a time when you had a big problemdoing [this item]” to understand the decisions children make when responding to self-reports. This technique can also provide a deeper understanding of how children constructtheir sense of competence. The self-report included 25 items representing typical childhoodactivities such as taking care of oneself, interacting with friends, and managing schoolwork.The rating scales used the same categories as in the earlier sorting game. The self-reporthad established psychometric properties when used with children with disabilities of thisage (Keller, Kafkes, & Kielhofner, 2005; Keller & Kielhofner, 2005; Kramer, Kielhofner,& Smith, 2010; Kramer, Smith, & Kielhofner, 2009).

Procedure

The first author collected all data. Parents who indicated an interest in their child’s partici-pation completed an inclusion/exclusion checklist to determine eligibility. Inclusion crite-ria included being aged six to 17 years, a diagnosis of cerebral palsy, and the ability toanswer interview questions and complete a self-report orally, using speech, an augmenta-tive communication device, or sign language. Exclusion criteria included children unableto answer interview questions and children who did not speak English. The first author, theparent, and the child then met in person to discuss the research process and the first authorobtained parental consent before the first observation. Children also provided written assentusing a picture-based form describing the research activities, risks, and potential benefits.Children also gave ongoing assent during the course of the study by providing permissionbefore each meeting, and were encouraged to say “stop” at any time. The first author alsomonitored children for signs of frustration, anxiety, or burden that would indicate a with-drawal of assent. All children were able to indicate to the researcher when they were“finished” sharing information during a single data-collection session. Parents had discre-tion to choose the level of supervision during data-collection sessions, and provided writtenpermission to use photographs as data after reviewing all photographs.

The first author used a three-step process to gather data. First, each child participated intwo observations (Patton, 2002). Each observation lasted between 60 and 120 min, with anaverage of 90 min. Second, the child participated in the one semi-structured interview. Thisprocess took between 60 and 120 min, with an average of 90 min. Third, the childcompleted the paper and pencil self-report of competence and the importance of everydayactivities (Keller, Kafkes, Basu, et al., 2005) while using cognitive interview techniques.This process took between 45 and 90 min, for an average of 60 min.

The researcher generated field notes using thick description at the end of each datacollection session (Geertz, 1973), as well as a reflection note to record initial ideas andevaluate the success of the data collection techniques. The data collected during steps twoand three were video-recorded and transcribed verbatim. An individualised photographalbum accompanied by narratives using the child’s quotes was mailed to each child toserve as a member check. Parents and children received instructions to call or email theresearcher if something was incorrect or missing. Only one parent responded, to expresssatisfaction.

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Analysis

Field notes and transcribed interviews were considered for analysis. Preliminary codeswere generated based on a line-by-line analysis of each child as an individual case (Patton,2002). Descriptive codes were created to categorise information contained in the data(Miles & Huberman, 1994). When possible, in-vivo codes were created to ensure the dataremained grounded in the children’s perspectives. The interpretive codes were generated toconvey the meaning underlying the children’s stories and demonstrations (Miles &Huberman, 1994). Interpretive codes were created after several rounds of descriptivecoding and took into consideration both the context surrounding the specific line of data aswell as information shared by the child throughout the three-stage process. Next, a constantcomparative method was used to identify themes across cases (Strauss & Corbin, 1998).Codes were reorganised, collapsed, and renamed until convergent thematic categoriesemerged. The data were also examined across cases for contradictory findings. The credi-bility of this analysis was triangulated by four individuals not involved in data collection,including the second author, two doctoral candidates, and one postdoctoral fellow (Patton,2002). All were qualitative researchers. Two had experience working with children withdisabilities and one self-identified as an individual with a disability. The first author incor-porated reviewer feedback to generate the final thematic structure.

Findings

Five themes emerged to describe competence and the process of gaining competence, asdepicted in Figure 1.Figure 1. Influences on the process of gaining competence for everyday activities.

The Environment: People, places, and objects

Children felt competent when the qualities of the people, places, and objects in their envi-ronment matched their abilities and needs. Other people influenced children’s sense ofcompetence. People were more likely to support a child’s sense of competence when theybuilt on the child’s strengths and provided support to engage in activities that matched achild’s interests. For example, Maria’s mother and brother helped her play a favourite danc-ing videogame by holding her upright while she moved her feet. Maki’s father helped himpractice table tennis in their basement to prepare for membership in his school’s “ping-pong” [table tennis] club. In each of these instances, the social environment provided thescaffolding for children to do activities with support. “Doing with support” did not decreasechildren’s sense of competence, but, rather, enhanced their sense of competence.

Children encountered a variety of places and objects that influenced their competencefor doing everyday activities. For example, Lizzy shared how different buttons made dress-ing more or less difficult: “Little ones are really, really hard, but big ones, like this big[makes a gesture with her hand], are fine”. Maria could change the television channelsusing the remote control but not the buttons on the television. Lenny felt the biggest obsta-cle to attending university was the physical accessibility of the dormitory rooms and class-rooms. In each of these instances, places or objects could positively or negatively influencechildren’s sense of competence.

The Quality of the Activity: Fun and important

Children described and demonstrated increased competence with activities that theyperceived to be fun or that they valued. Experiencing enjoyment and pleasure were

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hallmarks of a “fun” activity. Lenny explained that she was initially attracted to workingwith clay as an art medium because “it feels good in my hands”. Patrick explained that hewas good at reading because “it’s fun”. Conversely, when children did not enjoy an activity,they often reported having difficulty doing that activity. Lizzy explained: “I don’t likechores, so I have a little problem doing them”.

The relative importance of an activity also determined the extent to which childrensought to gain competence. Children most frequently mentioned family, friends, and petsas important, and the children sought competence in activities that involved them. Addi-tionally, the desire to meet social obligations and adult expectations, such as followingrules, motivated children to gain competence in an activity. For example, Maki first learnedhow to do Sumi painting because “it was for a grade” at school. However, when an activity

Figure 1. Influences on the process of gaining competence for everyday activities.

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was deemed not important to a child, gaining competence was not necessary. For example,Lizzy was not concerned with improving her ability to go across monkey bars [climbingframe] because “I’ve got other stuff that’s more important”. Without a sense of value,children were not willing to engage in activities that were difficult to perform.

Personal Characteristics: Strengths and impairments

Personal strengths supported children’s sense of competence. Some children reported theyhad always been good at doing the activities in which they excelled. For example, Lennyreported that she had always been good at artwork, even when she first started. Some chil-dren believed that they inherited these strengths from their parents. Maki explained: “Mydad had a ping pong table when he was younger, and I got [the ability to play] from him.”

Children also described that their impairments made doing some activities difficult. Forexample, Lenny shared that she could not write because of her disability. Maki said, “halfof the time I can’t hold [the inkpot] cause … you know, my fingers don’t cooperate thatmuch”. However, when children found activities fun and important, and when environ-ments matched their abilities and needs, the influence that the impairment had on theirsense of competence was negligible.

The Process of Building Competence: “I got better and better”

Competence was not seen as a single outcome at one point in time; instead, childrenactively built their competence through practice and problem-solving.

Practice

Children explained that they built competence for activities through practice, which theydescribed as repeated engagement in an activity. Practice increased children’s competencebecause, in Maki’s words, “I do it a lot so, then, I know what to do”. Lenny got better atmaking clay art because she had ongoing art classes. Lizzy gained competence for swim-ming over a number of years and in different pools in her neighbourhood.

The extent to which an activity was fun and enjoyable drove children’s willingness topractice. Maria explained that she practiced her video game because “I wanted to get it”,and Patrick practiced hopping like a kangaroo “because I like [animals]”. Children oftenstopped practicing when they did not enjoy the activity. For example, Maki stopped learn-ing how to play the piano because “I just didn’t like to practice it”.

Repeated engagement in daily routines also increased children’s knowledge and senseof competence for doing activities. For example, Lizzy described what she had to do inorder to get to school on time:

I sleep ’til like, 7:15[am] … so I have enough time to get ready for school at 8:15 … So, Iusually have ’til like 7:45 … If Mom drives me, I have ’til like 7:50. Well, if she doesn’t driveme and we walk, 7:45.

Since she had knowledge of the routine and could execute the routine, she felt that she didwell in getting prepared for a school day. This quote illustrates how knowledge gainedthrough repeated, routine engagement supported the development of competence.

Problem-solving

Gaining competence required children to actively problem-solve and identify ways inwhich they could engage in preferred activities given their abilities and needs. Children

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often demonstrated active problem-solving when they negotiated barriers posed by objectsand places that were not matched to their abilities and needs. Maki shared a strategy hedeveloped for typing with his left hand:

[I] put my hand on the ‘F’ through ‘J’ [key]. So … the ‘F’ has a little mark where you can feel,and the ‘J’ has one too … and then the space bar is obviously with the thumb.

Other children shared similar examples of active problem-solving. To avoid walking downsteps, Patrick said he would “go on the ramp”. Lenny’s story about a broken school elevatorillustrated her ability to work through a problem in order to move around on the secondfloor. She arranged to have a second wheelchair placed at the top of the stairs, left herprimary wheelchair downstairs, and walked up the stairs to the second wheelchair withsupport. In each of these instances, active problem-solving enabled the children to beengaged in activities and feel competent even when environmental barriers were present.

Often, people in the environment who knew the child’s needs and abilities supportedproblem-solving. For example, Maria and her mother identified strategies that supportedMaria’s independence in eating:

Mom put two paper napkins under the plate. She then had two tamales, which were long andskinny, hanging off the plate on one side at about [the] 1:00 [position] … [this] allowed Mariato grasp the tamale with her right hand. … Maria wiped the edge of her [right] hand on thenapkin positioned under the plate. (Maria, field note, Observation Two)

In a similar way, Lizzy was able to braid [plait] string bracelets after her mother tapedthe thread to the table, which enabled Lizzy to braid using one hand. With this support,Lizzy completed the craft alongside her sister. These examples illustrate how supportsfor problem-solving enabled the children to develop a sense of competence.

Being Competent: “I do lots of things”

Children defined competence as “doing” things. “Doing” was not related to the child’sphysical or cognitive skills or the level of physical independence, but, rather, the act ofengaging in an activity in a manner that was satisfactory to them. For example, Lizzyreported that she was good at riding her scooter, although she was observed to jump off thescooter without pressing the brakes. Maria was proud of her new ability to borrow booksfrom the library using her own library card, although she required support from others towalk and carry the books. Regardless of their skills, children felt competent when they wereactively engaged in an activity.

When children felt competent, they were able to describe or perform the objectives,techniques, or steps required to complete an activity. For example, Maki provided adetailed explanation of how to do one of his favourite hobbies, Sumi painting. He explainedthat the painting technique was “all wrist action”, and that the steps were to “tip, glide, andup” with the paintbrush. This ability to describe or demonstrate competence reflected thesuccessful outcome of practice, and led to increased feelings of self-efficacy; that is, beliefin abilities to accomplish a task or activity. Lizzy explained how this felt during one of herfavourite activities, jumping off the high diving board at the pool:

Climbing the ladder … to the diving board, is fun because it’s just, there are so many steps,you feel so brave, ’cause you’re like “oh my gosh I can actually do this”…

This sense of efficacy further encouraged children to practice or problem-solve an activity.For example, when Lizzy was learning how to jump rope, she decided to “stick with it”even though it was hard because she perceived that she was getting “better and better”. In

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this manner, a sense of efficacy was both an outcome of competence as well as a part of anongoing process that encouraged children to continue to gain competence.

However, in this sample, there was one situation in which Patrick’s limited self-efficacyled to a description of competence that contradicted that of the other children. During thesecond observation, Patrick was invited to participate in a tug-of-war game. The activitywas structured by adults to ensure that children of all abilities could participate and avoidinjury. However, Patrick needed extensive assurance from adult leaders that the activity was“just for fun”, and during the game Patrick frequently removed his hand from the rope anddid not interact with the other children playing the game. During the semi-structured inter-view, when looking at a photograph of himself engaged in the game, Patrick commented,“I was so worried that we were gonna lose” and “I always feel bad when I lose … it’s noteasy feeling bad”. These remarks illustrate that, for Patrick, the ability to “do” the activitydid not correspond to a feeling of competence. Patrick’s limited self-efficacy also led to aperception of incompetence for other physical activities, even those that he could perform.For example, he explained that he had a hard time climbing up a small plastic slide andinsisted “I fall off every time”, even though during the observation he easily climbed to thetop of the slide. Patrick’s poor self-efficacy in his physical ability meant that he did notperceive himself as competent even when he was able to “do” and engage in a physicalactivity.

Finally, all children in this study made it clear that even if they had impairments thatmade some actions difficult, they were still able to competently perform many activities.Maki stated that while his right hand “doesn’t work as well”, he still felt competent“because most of the things I’m pretty good doing with one hand”. Maria reported that shehad “a little problem” using her hands to type, but she demonstrated how she used thecomputer to email, surf the Internet, and instant-message friends. Having impairments orexperiencing difficulty in a specific skill did not preclude these children from doing activ-ities, nor from having a sense of competence.

Discussion

In this study, gaining competence was a dynamic process whereby personal, activity, andenvironmental factors contributed to competency development. However, children did notpassively accept these factors but actively enabled their own engagement, or competencefor “doing”, particularly for activities that were fun and important. While children weremost successful when the physical and social environment matched their abilities andneeds, when necessary they were able to actively problem-solve and negotiate many object,place, and social barriers. When children gained knowledge through practice and enabledtheir own engagement through problem-solving, they described themselves as competentand experienced increased self-efficacy.

The findings illustrate that awareness of impairment and competence are not mutuallyexclusive. Children in this study were able to differentiate between the specific skill chal-lenges related to their impairment (i.e., fine motor coordination) and their competence forspecific activities, even for those activities which required the execution of skills that werechallenging (i.e., using fine motor skills to operate a computer). Patrick, Lizzy, Lenny,Maria, and Maki spoke about the fact that certain activities required skills that were difficultfor them to execute. Yet their perceived competence for these activities was not automati-cally reduced because of these impairment challenges. This finding suggests that the chil-dren’s competence was not constructed by simply highlighting strengths and abilities overimpairments and challenges (Conners & Stalker, 2007; McEwan, Espie, Metcalfe, Brodie,

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& Wilson, 2004). Rather, each child constructed a sense of competence based on the extentto which he or she felt engaged in activities considered fun or important.

Constructing a sense of competence based on engagement happened in two ways. First,when a child had difficulty performing an activity that was not considered fun or important,the child dropped that activity out of his or her evaluation of competence. For example,Lizzy’s inability to transverse the monkey bars did not lower her sense of competence forphysical activities. Rather, her sense of competence for physical, outdoor activities wasconstructed around her ability to engage in other preferred activities such as jumping ropeand swimming. Similarly, Lenny’s reports of her natural ability to sculpt clay with herhands were not diminished by the difficulties she encountered when printing. Second, if achild could engage in a valued activity, the extent to which that engagement resulted in thechild feeling good about himself or herself had a greater influence on competence thanimpairment-related challenges. An example of this was Maki’s reported competence forSumi painting despite his difficulty holding the inkpot, or Patrick’s report that he was notgood at physical activities even when he was observed to be able to do those activities. Inthis way, children in this study constructed a sense of competence based on their successfulengagement in those activities deemed most enjoyable or essential.

The findings also call attention to the importance of the physical and social context inthe development of competence, and the agency that children demonstrate within thatcontext. Several developmental and rehabilitation theories recognise that environmentscongruent with an individual’s needs are more likely to support development and learning(Bronfenbrenner, 2005; Gibson, 1988; Kielhofner, 2008; Lawton, 1998). Several of thesetheories also recognise the reciprocal relationship between the environment and the child(Bronfenbrenner, 2005; Gibson, 1988), whereby a child’s actions and responses to anenvironment then change the nature of that environment. In keeping with these theories,in this study each child’s competence was supported when physical and social environ-ments matched his or her needs and abilities. However, the children in this study did notmerely react to the environment, but actively sought to change environments that did notprovide appropriate supports. This active problem-solving and affordance creation, ratherthan passive acceptance of the environment, further supported the children’s sense ofcompetence and enabled them to be resilient and construct competence in less than opti-mal environments.

Children reported two approaches to solving problems. One was to change the way inwhich the task was completed. Maki’s typing using different fingers and Lenny’s solutionto keep an extra wheelchair on the second floor are examples of this type of problem-solving. A second approach to problem-solving was to seek assistance from others toenable the completion of activities. The physical support Maria received from familymembers to walk through the library or play her video game is an example of this type ofproblem-solving. Both problem-solving approaches supported competence because thechildren’s successful engagement was defined by the end result, “doing” a valued activity,rather than the means by which they were engaged. The relationship among engagement ineveryday activities, social support, and competence in this study is similar to Rogoff’sconcept of guided participation (Rogoff, 2003), whereby adults guide children through thecompletion of activities by providing physical or verbal support and prompts. This enableschildren to learn the skills essential for membership in a particular culture. Indeed, childrenin this study felt most competent when they could verbalise the specific steps that wererequired to complete an activity, reflecting an internalisation of culturally-shared knowl-edge gained through practice (Rogoff, 2003). However, rather than assuming a role inwhich support was always passively received from others, as children’s reported

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competence for an activity increased they were more likely to actively seek out and managethe assistance received while doing that activity.

Mayall proposed that the status of children within society could be improved throughthe recognition that they are active agents who engage in “socially useful activities” (2004,p. 47) in a variety of contexts. For children with disabilities, a focus on incompetence,vulnerability, and a concomitant level of burden, as discussed by Priestley (2003), has madeit difficult for society to envision them as active agents. The process by which children inthis study enabled their engagement and constructed their competence challenges concep-tualisations of vulnerability and passivity, and allows us to understand how children withcerebral palsy can be active agents. Educators, rehabilitation professionals, and familiesseeking to support the development of competence and improve the status of children withcerebral palsy are encouraged to involve children in problem-solving around environmentalbarriers rather than resolving those barriers on their behalf. In addition, re-conceptualisingadult assistance as “doing with support” and providing children with the opportunity todetermine when and how to use that assistance, can further the status of children withcerebral palsy within the context of engagement in everyday activities.

Limitations

The extent to which the reported findings are representative is unknown, as only oneparent responded to the member check. In addition, these findings may only reflect theexperiences of the five children in this study with cerebral palsy. Further, objectivemeasures of function were not part of this research protocol, and therefore this studyrelied on observational descriptors, self-report, and parent report to describe the children’sabilities and function.

Although an attempt was made to achieve maximum variation in sampling, this was notachieved in age, as only one participant was over 12 years old. Further, there was a signif-icant gap between the oldest participant and the second oldest participant. As a result, theexperiences shared by the oldest participant often reflected roles and activities common toolder adolescents, such as transitioning from secondary school to post-secondary educa-tion, and were not mentioned by the younger participants. Therefore, saturation was notreached on these specific life-course activities. However, the time-intensive data collectionprocedure and limited resources did not allow for further recruitment and data collection.Additional data collection using theoretical sampling for stages of development and expe-rience (primary school versus secondary school) may have provided additional contradic-tory information and better illuminated the relationship between development, life-course,experience, and perceived competence. Given these limitations, the use of several data-collection methods triangulates the data and increases the trustworthiness of the findings.Further, it is notable that the process by which the oldest participant developed competenceand the factors that influenced that process were similar to those reported by the youngerparticipants. It is possible that the impairment-related challenges common to all of theparticipants led to a shared process of building competence. Future research should explorehow children with other disabilities identify, explain, and demonstrate their competenceacross the course of childhood.

Conclusion

The process by which children with disabilities develop their sense of competence is theoutcome of a dynamic interaction between the child, their environment, and the specific

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activity. Children play an active role in developing their own sense of competence througha process of practice and problem-solving solutions to impairment-related challenges orenvironmental barriers. Children with disabilities feel competent when they know how todo activities and when they receive support to engage in activities that they consider funand important.

Acknowledgements

Thank you to the children and their parents who took the time to participate and contributeto this study. Thank you to Yolanda Suarez-Balcazar, PhD, Roberta Paikoff, PhD, SusanMagasi, PhD, Patricia Bowyer, EdD, Kelly Munger, MS, Sue Berger, PhD, and SimoneGill, PhD for providing feedback on the analysis and drafts of this manuscript.

The findings reported here are based on research funded by the American OccupationalTherapy Association Dissertation Research Grant, and the University of Illinois at ChicagoGraduate College to the first author, as well as the National Institute of Disability and Reha-bilitation Research ARRT Grant No. H133P050001, to Boston University, Dr Alan Jette,PI. No restrictions have been imposed on free access to, or publication of, the research data.The content of this publication does not necessarily reflect the views or policies of theabove parties, nor does mention of trade names, commercial products, or organisationsimply endorsement by the funders, Boston University, or the University of Illinois atChicago. Opinions reflect those of the author(s) and do not necessarily reflect those of thefunding agency(ies). The author(s) had no financial or other conflicts of interest. This studywas conducted while the first author was a doctoral candidate at the University of Illinoisat Chicago, Chicago, IL.

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Documents

“I Do Lots of Things”: Children with cerebral palsy’s competence for everyday activities