Developmental Neurorehabilitation, October 2012; 15(5): 361–368

Exploring the leisure experiences of young people with spinal cordinjury or disease

KIMBERLEY HYNES1, JANE GALVIN1,2,3, & LINSEY HOWIE1

1Departmentl of Occupational Therapy, La Trobe University, Melbourne, Australia, 2Victorian Paediatric

Rehabilitation Service, The Royal Children’s Hospital, Melbourne, Australia, and 3Critical Care and Neurosciences

Murdoch Childrens Research Institute, Parkville, Australia

(Received 5 April 2012; accepted 8 May 2012)

AbstractPurpose: To explore the perceptions of young people with a spinal cord injury or disease (SCI/D) about their leisureparticipation at school, home and in the community.Methods: The study used narrative enquiry to elicit the unique leisure stories of three participants aged 8–11 years with aSCI/D during two face-to-face, semi-structured interviews. Pictorial data about participants’ interpersonal relationshipswere also gathered using a ‘social atom’ tool.Results: Thematic analysis of participants’ narratives produced three themes. ‘Inside school leisure’ and ‘outside schoolleisure’ detailed participants’ lived experiences of leisure. ‘A can-do approach to leisure’ drew attention to the optimisticattitudes held by the participants and their active engagement in leisure despite their SCI/D.Conclusions: Clinicians, families and educators should explore the leisure preferences of young people with a SCI/D andsupport their participation in activities, which offer enjoyment, friendship and a sense of achievement.

Keywords: Paediatric spinal cord injury, leisure participation

Introduction

A spinal cord injury (SCI) is an acute traumaticlesion occurring in the spinal canal (spinal cord orcauda equina) resulting in temporary or permanentsensory impairment, motor impairment or bowel orbladder dysfunction [1]. Based on global incidencerates, it is expected that �20–25 young people in thestate of Victoria, Australia, sustain an acute trau-matic spinal injury per year [2]. Spinal cord diseasecan be caused by tumour, infection, inflammatorydisease, autoimmune disease or degenerative diseaseof the central nervous system [2].

Spinal cord injury or disease (SCI/D) can affectevery occupational domain of a young person’s life.Occupation is defined as ‘everything people do tooccupy themselves, including looking after them-selves (self-care), enjoying life (leisure) and contrib-uting to the social and economic fabric of theircommunities (productivity)’ ([3], p. 34).

Participating in leisure occupations has manybenefits for the health and wellbeing of youngpeople, including expanding skill sets and raisingcompetence levels; providing opportunities for social

interactions; and bolstering self-esteem [4–6].Participation is defined by the InternationalClassification of Functioning, Disability and Health(ICF) as: ‘involvement in a life situation’ ([7], p. 11).Of particular importance in considering participationin leisure occupations is the idea that it is theindividual’s subjective experience and perception ofthe activity that defines it as leisure. In previousstudies, participation was conceptualized by adults[8] and children with [9] and without disabilities[10] as being a fun and pleasurable experience,which is performed in a social environment andincorporates an element of success and fulfillment.While these findings broadly capture core criteria formeaningful participation, the methodologiesemployed by the researchers did not permit collec-tion of rich, diverse descriptions of the subjectiveexperience attached to personal engagement in anactivity.

Despite identifying leisure as an important occu-pation for young people, very little research exists todescribe the leisure experiences of young people withSCI/D, with the majority of research focusing on

Correspondence: Jane Galvin, Victorian Paediatric Rehabilitation Service, The Royal Children’s Hospital, Flemington Road, Parkville, VIC, 3052, Australia.Tel: þ61 3 9345 5283. Fax: þ61 3 9345 5913. E-mail: jane.galvin@rch.org.au

ISSN 1751–8423 print/ISSN 1751–8431 online/12/050361–8 � 2012 Informa UK Ltd.DOI: 10.3109/17518423.2012.692727

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quantitative studies describing the leisure participa-tion of adults.

Two questionnaire-based studies investigatingpatterns of participation in adults with SCI revealedthat engagement in sporting activities was commonlydiscontinued post-injury [11, 12], presumablybecause of their physical and mobility requirementsfor participation. Although Tasiemski et al. [12]found that several respondents to their questionnairewere able to continue engaging in pre-injury sportingactivities, the majority of adults [12] and youngpeople [13, 14] with SCI were more likely to engagein sedentary and informal activities.

Other research has investigated adults’ percep-tions of leisure, unveiling diverse participation expe-riences not captured by objective measures. In onestudy, adults with SCI (n ¼ 20; 17–59 years) spokeof an overwhelming sense of loss physically (e.g.decreased abilities), psychologically (diminishedconfidence) and socially (disrupted social and famil-ial relationships), which undermined their enjoy-ment of previously enjoyed leisure activities [15].For other adults living with SCI, engaging inphysical activities has enabled them to overcomethe initial loss of their ‘able’ identity experiencedimmediately post-injury [16]. In another study [17],15 adult informants with SCI were engaged in in-depth interviews to explain the role of leisure in theirlives. Findings suggested that participation in leisureinfluenced participants’ recovery following injury byproviding opportunities to develop abilities, interactsocially, find meaning in everyday life and generatepositive emotions [17]. While the study’s trustwor-thiness was ensured through several strategies, thepotential exclusion or increased inclusion of negativecases (participants who did not meet the study’scriteria) might have weakened the distinctive role ofleisure reported by the authors. Nevertheless, it isclear that adults with SCI can successfully engage inleisure and that engagement in leisure is a vehicle forimproving health and wellbeing.

Although there is emerging literature to describethe activity participation of adults with SCI, there isvery little research that describes the leisure experi-ences of young people with SCI/D. In one study[18], 33 young people (7–18 years) with SCI and13 caregivers were interviewed about their partici-pation outcomes following SCI. Thematic analysisrevealed: (1) a sense of apprehension related toresuming particular activities (e.g. fear of becominginjured); (2) the notion of a ‘reference point’ foreither participating or refraining from an activity; (3)a pattern of missing out on activities (e.g. due topoor accessibility); and (4) decreased autonomy inactivities [18]. As this study utilized a cognitivetesting methodology to evaluate a patient-reportedoutcome measure, the study did not specifically

investigate the participants’ feelings about theirinvolvement in leisure occupations. Furthermore,the inclusion of caregivers drew the focus away fromwhat the young participants thought about their ownparticipation.

Other studies have reported the benefits of par-ticipating in structured activities (e.g. team sports),which are predominately community-based andsocially engaging for young people with SCI [14];however, these studies focus on the benefits ofparticipation without investigating the perceptions ofthe young people themselves.

This study aimed to address this issue and askedthe question: What are the leisure participationexperiences of young people with SCI/D?

Methods

Researcher’s stance

This study was completed by the first author(Hynes) for her honours project. Enhancing partic-ipation is at the very heart of what occupationaltherapists do, with leisure participation being acrucial sociocultural context for young people. Theresearcher wished to explore the leisure experiencesof young people with SCI/D with the intention ofbetter understanding their experiences of participa-tion, including perceived facilitators and barriers, toinform future developments in practice.

Study design

The qualitative study used a narrative enquirymethodology to ‘. . . offer the opportunity forresearch participants to describe in detail the widercontext shaping their experience(s) . . .’ ([19], p. 78).The data collected through narrative enquiry are thestories people tell [20] and the thoughts, actions andvalues highlighted in the stories are analysed toproduce results expressed as themes. Approval forthe study was obtained from the appropriate aca-demic and hospital ethics committees.

Inclusion criteria

Young people aged 8–11 years with a permanentSCI/D were invited to participate in the study.Children younger than 8 years were not includedbecause they may have found it difficult to compre-hend and communicate their occupations to others[21]. Children had to have been discharged fromhospital (where the primary reason for their admis-sion was SCI/D-related) for a minimum period of3 months to allow sufficient time for them to resumedaily routines [22]. This enabled the researchers tocapture a wide range of experiences in different

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leisure environments, at school, home and in thecommunity.

Recruitment procedures

Potential participants were identified through theirroutine attendance at a rehabilitation outpatientclinic in a tertiary paediatric hospital. The alliedhealth clinician, who was independent of the study,provided potential participants and their familieswith verbal and written information about the studyduring clinic hours. Families who were uncertainabout participating in the study were given time toread through the information at home. One-to-twoweeks later, they received a follow-up phone callfrom the allied health clinician, who ascertained theirwillingness to participate in the study. Interestedfamilies assented for their contact details to becommunicated to the interviewer, who then con-tacted the families of participants to arrange amutually convenient time and place for the firstinterview. Three participants with complete spinalcord injuries (full loss of motor and/or sensoryfunctions below the level of the injury) and whoused a wheelchair for all mobility participated in thestudy, as seen in Table I. Two participants declinedinvolvement due to the time commitment involved.

Consent

Due to the ages of the children involved in the study,caregivers provided informed consent prior to par-ticipation. The study was described to the childparticipants and they were also invited to sign aconsent form to indicate their willingness to beinvolved in the study. No children declined toparticipate in the study.

Data collection methods

Subjective data about participants’ leisure experi-ences were gathered during two face-to-face, semi-structured interviews [23–25]. In-depth interviewingappropriately facilitates the process of storytelling asit supports a shift in the balance of power from theresearcher to the participant [23]. The interviews

were conducted in Terms 1 and/or 2 of 2011 in theparticipant’s home and/or at the tertiary paediatrichospital where they were first recruited. A secondinterview was conducted 6–8 weeks later to giveparticipants the opportunity to verify what they hadsaid in the first interview and to add to their leisurestories as appropriate. The first interview rangedfrom 45–65 minutes, the second interview from20–45 minutes. The interviews were digitally voice-recorded, transcribed verbatim and de-identifiedusing a pseudonym chosen by the child, to maintainconfidentiality.

Demographic data form. A demographic data formwas developed for this study and was completed bythe participant’s caregiver at the first interview toobtain a clearer picture of the participant. The formcontained questions about the participant’s date ofbirth, type of SCI/D, date of SCI/D, date of hospitaldischarge, postcode, living arrangements and anyexternal supports the child receives at home and/orschool.

Interview schedule. A simple interview schedule wasdesigned in accordance with the research question.The schedule was organized under topic headingspertaining to current leisure experiences (e.g. whatactivities do you do now and why?) and future leisureaspirations (e.g. what activities do you want to try?).It included prompts about leisure at school, at homeand in the community to capture a wide range offormal and informal participation experiences.

Social atom. In the first interview, pictorial dataabout participants’ interpersonal relationships werealso gathered using an adaptation of Jacob Moreno’spencil and paper tool, the ‘social atom’ [26, 27].Participants’ social atoms enabled the interviewer tofacilitate the storytelling process and obtain a clearerpicture of their social engagement and activityparticipation. As an example, Michael’s social atomis shown in Figure 1. Michael (O) has drawn himselfin the centre, closely surrounded by his mother (G),

Table I. Participants’ demographics and SCI/D details.

Age (years)

SCI/D

Participant* Nature of SCI/D Occurrence Discharge date

Michael 8 C5/C6 At birth 8 weeksFlower 8 T2 October 2009 October 2010Tyson 11 Transverse myelitis July 2010 December 2010

*Participant-assigned pseudonym.

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father (N) and younger brother (C). He describedgoing on holidays with his family and playingbackyard cricket with his father. His best friend(S), who Michael ‘mucked around’ (played) with atrecess, is also depicted.

Data analysis

In accordance with narrative enquiry methodology,data analysis followed a step-by-step process of‘narrative analysis’ and ‘analysis of narratives’([19], pp. 85–87). In ‘narrative analysis’, a storywas created for each participant, describing the livedexperiences of leisure at school and outside of schoolin the home and community. ‘Analysis of narratives’involved developing a concept map of categoriesacross all stories to create a thematic schema and ispresented in the results section.

Trustworthiness strategies

Based on Curtin and Fossey’s [28] guidelines forqualitative studies, several strategies were employedto ensure the study’s trustworthiness. Theseincluded: (1) conducting two interviews (timetriangulation); (2) collaborating with two otherresearchers during data analysis (researchertriangulation); and (3) using two methods (semi-structured interviews and social atom) to collect data

(within-method triangulation). These strategies werecarried out to add data from different perspectives(time, researcher and method) to the study findings.Furthermore, the concept of reflexivity was acknowl-edged through making explicit the interviewer’spersonal reflections and examining the impact ofher interactions with participants in post-interviewfield notes. Lastly, the interview schedule and socialatom were pilot-tested prior to their use in the study.

Results

Following ‘analysis of narratives’, three themes andseveral sub-themes were derived across all storieddata. The first two themes, ‘inside school leisure’and ‘outside school leisure’, include the lived expe-riences of leisure as told by the participants. Thethird theme, ‘a can-do approach to leisure’, drewattention to participants’ active engagement inleisure despite their SCI/D and the attitudes andactions that informed and provided a context fortheir experiences.

Inside school leisure

Structured leisure. Structured leisure predominatelycomprised of participants’ experiences in physicaleducation (PE) classes, which were greatly

Figure 1. Michael’s social atom.

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influenced by the teacher. Michael and Flower spokeof their active and satisfying participation in PE, duelargely to the teacher’s aptitude for suitablystructuring class activities. For example, Floweranimatedly spoke of completing an obstacle coursewhilst balancing a beanbag on her head, which sheattributed to the helping hand of her teacher. Theirexperiences challenge the traditional concept of whatit means to have a ‘disability’, in that having a SCI/Ddid not negatively dictate their participation in PE.This notion is signified by the bi-directional andtherefore non-causal connections between ICF levelsof functioning and disability [7].

In contrast, Tyson watched his classmates playsport from the sidelines. Occasionally, he wasresponsible for scoring a game, which he did notmind, while other times he chose to do physiother-apy exercises because it gave him the satisfyingfeeling that ‘(he) could do something different’. Asthis was his first semester at school with a disability,it is possible the staff were not yet equipped with theknowledge and skills to support Tyson’s inclusion inPE activities.

Recess and lunch leisure. When the bell rang forrecess and lunch, participants spoke of engaging ingames with rules (Michael; cricket), organized playwith assigned roles (Flower; pretend play) andactivities requiring abstract thinking (Tyson; cardgames), all of which are typical of the play activitiesparticipated in during middle childhood [29].

Participants’ experiences of recess and lunchleisure involved (1) having fun with friends and (2)experiencing success and was influenced by (3) thephysical and social aspects of their environment.

Michael explained that participating in sports wasall about ‘just having fun, with my friends andplaying cricket’, which is consistent with other youngpeople’s subjective experiences of leisure participa-tion [9, 10]. Similarly, Tyson implied that he had themost fun when he played card games with his schoolfriends. Engaging in shared leisure activities at recessand lunch helped Flower to maintain her friendshipswith peers from different grades. Her experience iscompared with that of the adult informants inanother study, who described a decreased socialworld post-SCI as evident in diminished leisureengagement [15]. However, similar to other childrenwith physical disabilities [18], Flower sometimespreferred ‘doing things independently’ and engagingin solitary play at recess and lunchtimes.

Whereas Flower engaged in activities purely forthe fun of it, Tyson and Michael—akin to otherchildren their age [9, 10]—were also motivated bythe desire to attain personal success and competencyin their favourite activities. Although the physical

means of playing cards was different, in that Tyson’sfriend handled his deck of cards for him, he stillsought and experienced the outcome of success. If helost a game, he said, ‘I just . . . try again . . . until Iwin’, which further clarified his goal to attainsuccess. Similarly, Michael measured his personalsuccess by the number of wickets he scored in agame of cricket.

Environmental impact refers to the ‘actual influ-ence . . . that the physical and social aspects of theenvironment have on a particular individual’ ([30],p. 98) and was prominent in Michael and Tyson’sexperiences of recess and lunch leisure. Whereas theschool oval offered the physical and socially accept-able space for students like Michael from differentyear levels to play cricket at lunchtime, the weatherdictated whether or not Tyson participated in hispreferred leisure choice of card games. When a wetweather programme was announced, environmentalimpact favoured Tyson’s participation in that thephysical and conceptual features of a deck of cardsgave rise to many variations in, and types of games tobe played with his friends.

Outside school leisure

Family leisure. Immediate and often extendedfamily members were evident in all participants’experiences of leisure outside of school, not dissim-ilar to the way in which parent informants influencedtheir child’s leisure preferences and experiences inthe study by Heah et al. [9]. This theme wasconfirmed by Tyson, who was first introduced to theworld of cards by his older cousin, and Flower, whowanted to learn wheelchair karate ‘because my sisterwanted to do it and I wanted to do it, so, just in casemy sister needs help . . .’.

Furthermore, family members were an integralpart of the participants’ actual experiences of activityengagement and without them participation wouldnot have proceeded meaningfully. For Michael,playing cricket with his father in their backyard wasperceived as the highlight of his day and affordedhim valuable opportunities to practise his skills.

In one instance, Tyson described changed familyleisure patterns. Since being discharged from hospi-tal, he frequently went to the cinema with his familyduring school holidays which he compared to pre-vious holidays when he went on camping trips withhis relatives. The reason for this, he supposed, waslimited knowledge and means to transport hiswheelchair to the camping site, which left him toconclude that the cinema was ‘. . . one of theoptions . . . that’s fun for me’. Patterns of familyparticipation do indeed change as a result of adisability in the family; however, ‘families whofunction well and provide clear expectations and

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positive support to persons with disabilities help toreduce the risk of limited participation’, as well ascreate new opportunities to participate ([31],p. 645).

Rewards of leisure. Participating in outside schoolleisure (1) benefitted participants’ health and (2)afforded them opportunities to develop their abilitiesin leisure and, for two of the participants, (3) it wasalso all-consuming and gratifying.

Participants spoke about the psychological andphysical health benefits arising from their participa-tion in leisure. While Tyson opted to participate insedentary activities after school (e.g. watching tele-vision) because of its calming effects, Flower valuedthe physical health benefits to be gained fromparticipating in sports. When expressing her desireto play wheelchair basketball, she supposed, ‘I thinkit’s really good for arm muscles . . .’.

Developing abilities involved a process of achiev-ing basic, then higher level skills to realize moreadvanced goals. Michael conceded that, initially,learning to play cricket was difficult but he added,‘you develop skills’, just as he had from playingbackyard cricket most days. Associated with thisprocess was the notion of reclaiming an ‘able’identity from engaging in leisure, which was con-veyed by adult informants with a SCI [16] and inTyson’s narrative. When compared to just watchingthe soccer on television, Tyson believed that playingwheelchair soccer would be more satisfying becauseit would give him the ‘feeling . . . that (he) (could)play sports again’.

In Michael’s narrative, developing abilities weresupported by adult coaches, for example, his wheel-chair basketball coaches, who ‘knew . . . that (he)could do more’ and therefore ‘pushed (him) to (his)limit’ during training. His remark draws attention tothe important role enacted by adults to supportleisure participation and to permit participationwithout imposing negative pre-conceptions about aperson’s abilities to achieve their goals.

Michael and Tyson’s participation in cricket andcard games, respectively, was all-consuming, mean-ing that it was time- and energy-intensive andintimately connected with intense actions, feelingsand emotions. Michael’s focused participation inbackyard and school cricket and pursuit of compe-tition cricket was ultimately steered by his deep-seated passion for the sport. He explained that hediscontinued other sports in favour of solely pursu-ing cricket because ‘I just want cricket to be mypassion’. Tyson’s participation in card games wasall-consuming because of the power of knowledgeand resulting feelings of invincibility that he

experienced. These feelings gave him the confidenceto win against his opponents.

Michael and Tyson’s descriptions of‘all-consuming leisure’ challenge previous findingsthat similarly-aged children are intrinsically moti-vated by fun activities in general and not necessarilyby specific activities [10]. While this may resonatewith Flower’s experiences of leisure, both Michaeland Tyson described deeply-held attachment to asingle leisure activity.

A can-do approach to leisure

Can-do attitudes. The attitude of not allowing adisability to define the way the participants livedtheir life transpired as they spiritedly described theirdiverse and mostly positive experiences of leisure.When compared to the perceptions of adults withSCI [15], participants’ leisure narratives did notcontain any feelings of bitterness, frustration orsadness. They simply acknowledged that they couldnot change their circumstances and their attitudeappeared to allow them to try and explore variousleisure activities with optimism. This was evident inTyson’s narrative in that he accepted he could nolonger play soccer as he had once done prior to hisdiagnosis, yet he was eager to pursue his passion forthe sport and try wheelchair soccer. Michael andTyson’s advice to other young people with SCI/D to‘just try’ and ‘see if you like something and . . . just gofor it’ further clarified the participants’ optimisticattitude to leisure participation.

It is important to acknowledge that other peoplealmost certainly influenced participants’ leisure par-ticipation, albeit in an indirect manner. At school,Michael was considered a regular person by hispeers; he observed that ‘they don’t really notice meas a kid who has a disability’. Similarly, his classroomteacher ‘treat(ed) (him) like every other person’.These observations probably heightened his ownsense of wanting to participate like everyone else—even with a disability.

Can-do actions. This theme described the mannerin which participants acted on their can-do attitudeto successfully participate or demonstrate compe-tence in leisure occupations. As an example, Michaelacted on his enthusiasm for cricket by joiningstudents from other year levels in lunchtime cricketon the school oval, a leisure routine that gave himimmense satisfaction.

Mulcahey et al. [18] described the notion of aninternal ‘reference point’ in their 2010 study, refer-ring to self-beliefs about what participation ‘looks’like, which either halted participation or inspired anew kind of participation. Even when participationlooked ‘different’, it was still achievable, acceptable

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and satisfactory to participants in this study. Forinstance, Flower recalled the pretend game, ‘Copsand Robbers’, which she played when she was ableto walk—and still played but only, she insisted, ‘If Irun really—only if I wheel fast!’

Part of participants’ can-do approach to leisurewas their determination to pursue and achieve theirleisure visions. The sky was the limit for Flower, whohoped to attain her black belt in karate in her lateteens, after which, she asserted, ‘I’ll be able to dosomething else’, such as gymnastics and swimming.Michael and Tyson’s leisure visions were morefocused in that Michael wished to play cricketprofessionally and Tyson looked forward to playingwheelchair soccer and playing in card tournaments.Flower’s belief that she will be able to protect hersister if she learns karate, in conjunction withMichael and Tyson’s determination to be successfulin their favourite sports, draw attention to theparticipants’ own self-perceptions of being able toachieve these feats with a disability.

Conclusions

It is hoped that the participants’ insights encouragehealth professionals, families and educators alike tobe genuinely curious and inquire about the livedexperiences of young people with SCI/D. In doingso, the young person may feel that their experienceshave been validated and their preferences for leisureknown, while the adult listening may ascertain whatthe young person is motivated to engage in and whatfactors support or hinder their participation. Inaccordance with enabling principles, it is part ofthe occupational therapist’s role to empower youngpeople with SCI/D to realize their leisure goals. Thiscan only be achieved when the therapist allocatesclinical time to first understand what the youngperson’s experiences of leisure are, how they wish toparticipate and with whom and what they considerto be important in their experience of leisure.

It is clear from the participants’ narratives thatyoung people with SCI/D have the potential tosuccessfully and meaningfully engage in leisureoccupations. Health professionals, parents andteachers are therefore reminded not to limit theleisure possibilities of young people with SCI/D. It isrecommended that occupational therapists explorethe leisure preferences of each child and work withpeople in the home, school and community envi-ronments to support their participation in theseactivities. This may involve educating adults (e.g.parents, teachers) about inclusive leisure options andaccessible community leisure organizations and cre-ative ways of adapting or modifying activities and/or

environments to enable optimal participation con-ducive to the young person’s health and wellbeing.

The major limitations of this study were its smallsample size and the omission of young people fromnon-English speaking backgrounds who wereexcluded from this study due to financial and timeconstraints. To determine whether the researchfindings are transferable to the wider, multiculturalpaediatric SCI/D population, it is recommended thatthe themes identified in this study inform a more in-depth study with a larger and more culturally-inclusive sample of participants. Exploring care-givers’ perceptions of leisure participation is alsoimplicated for future research in order to drawcomparisons with the experiences of young peoplewith SCI/D.

In summary, it is hoped that young people withSCI/D and their families, teachers and therapists, aswell as interested others, learn and take somethingfrom the optimism and determination of the threeyoung participants in this study.

Acknowledgements

The authors would like to express gratitude to thethree young participants of this study, who kindlyand enthusiastically shared their experiences ofleisure. This project was supported by theVictorian Government’s Operational InfrastructureSupport Program.

Declaration of interest: The authors report noconflicts of interest. The authors alone are respon-sible for the content and writing of the paper.

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