DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY

SYSTEMATIC REVIEW

The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis BENITA POWRIE 1,2

| NIINA KOLEHMAINEN 3 | MERRILL TURPIN 2 | JENNY ZIVIANI 2,4 | JODIE COPLEY 2

1 Leeds Community Healthcare NHS Trust, Leeds, UK. 2 School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Qld, Australia. 3 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK. 4 Children’s Allied Health Research, Queensland Health, Brisbane, Qld, Australia. Correspondence to Benita Powrie at Leeds Community Health Care NHS Trust, St Mary’s Hospital, Leeds, LS12 3QE, UK. E-mail: [email protected]

PUBLICATION DATA

Accepted for publication 23rd March 2015. Published online 4th May 2015. ABBREVIATIONS

CYP ETQS SDT

Children and young people Evaluation Tool for Qualitative Studies Self-determination theory

AIM Participation in leisure has known health benefits. Children and young people (CYP) with physical disabilities demonstrate reduced participation in leisure. To facilitate their meaningful participation, one must understand what leisure means to CYP. The aim of this study was to systematically synthesize evidence from qualitative studies on the meaning of leisure for CYP with physical disabilities. METHODS CINAHL, MEDLINE, AMED, EMBASE, PsycINFO, and ERIC were searched periodically from January 2012 until May 2013. Qualitative studies reporting the views of CYP (0–18y) with physical disabilities on leisure participation were included. The analysis involved thematic syntheses, double coding, and established quality appraisal procedures. RESULTS Twelve studies met inclusion criteria, addressing the leisure experiences of 146 CYP with disabilities. Four themes core to the meaning of leisure for these CYP were (1) ‘fun’: the enjoyment and pleasure experienced from leisure; (2) ‘freedom’ of choice and from constraints; (3) ‘fulfilment’: discovering, developing, and displaying potential; and (4) ‘friendship’: social connectedness and belonging. INTERPRETATION The identified themes resonate with the psychological needs outlined by self-determination theory: fun relates to satisfaction and intrinsic motivation; freedom relates to ‘autonomy’; fulfilment relates to a belief in ’competence’; and friendship resonates with ‘relatedness’. Social context had an impact on all of these themes, indicating that this is an important target for leisure participation interventions.

Participation in leisure pursuits is a key contributor to enhancing the quality of life for children and young people (CYP) with physical disabilities1 and is an internationally recognized health outcome.2 Participation in leisure activities is associated with improved well-being through increased psychological and social competence, self-efficacy,3,4 academic performance,4 sense of peer support and friendships,3 and development of initiative and self-determination.5 However, CYP with physical disabilities spend less time participating in leisure, undertake fewer ‘formal’ leisure activities, and have a lower intensity of participation than their typically developing peers.6–9 Disparities are more pronounced for CYP with significant levels of disability.6,8,10,11 One definition of leisure is ‘the combination of free time with the expectation of preferred experience’,12 whereby the ‘preferred experience’ is personally defined.12,13 While, in general, CYP with disabilities have aspirations and desires similar to their typically developing peers,14 it is unclear if this is true with regard to leisure activities. For example, CYP with disabilities do not report higher levels of enjoyment of structured leisure activities than unstructured activities, unlike their typically developing peers.9 © 2015 Mac Keith Press

Attending activities that are purported to be leisure does not equate to leisure participation.9,13 Therefore, understanding the lived experience of leisure for CYP with physical disabilities is central to the facilitation of meaningful leisure opportunities.15–17 Such lived experience and the meaning of leisure for CYP with disabilities have typically been explored through open-ended, qualitative studies.17 The purpose of the present study was to review qualitative literature and synthesize evidence to answer the question ‘what does leisure mean (‘look and feel like’) for CYP (0–18y) with physical disabilities?’. The specific objectives were to identify qualitative studies in which the meaning of leisure has been explored in CYP with physical disabilities, and to identify any understandings that have emerged from relevant studies regarding the meaning of leisure for this population.

METHOD Search strategy The search strategy was based on guidance by the Centre for Reviews and Dissemination18 and the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement.19 The search strategy, developed in DOI: 10.1111/dmcn.12788

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collaboration with an experienced senior information scientist, incorporated free text, thesaurus, and the following medical subject heading (MeSH) terms: (1) population – children and young people with physical disabilities aged 0–18 years; (2) issue of interest – leisure; and (3) outcome – personal views related to the lived experience of leisure (see Appendix S1, online supporting information). The databases CINAHL, MEDLINE, AMED, EMBASE, PsycINFO, and ERIC were searched periodically between January 2012 and May 2013. Reference checks of included papers were undertaken. Authors were contacted for clarification where necessary.

Inclusion criteria Search results were transferred into a database, duplicates were excluded, and titles and abstracts were screened for inclusion using the following criteria: (1) participants included CYP aged 0–18 years; (2) participants had physical disabilities affecting their motor skills; (3) results included CYP’s reports on their experiences and/or the meaning of leisure to them; (4) results had been analysed qualitatively; and (5) results were available in English (as translation resources were unavailable). Articles were excluded if their research focus was (1) an evaluation of a therapeutic intervention; (2) vocational employment; or (3) school-based curricular activities. Two authors (BP, NK) independently coded titles and abstracts of the first 100 papers to test and agree upon inclusion criteria. One author (BP) used the agreed criteria to screen the remaining titles and abstracts to remove those which should obviously be excluded. Both authors then independently screened the titles and abstracts of the remaining papers, and compared and refined their decisions until a consensus was reached. Finally, both authors independently read the full texts of the identified papers and assessed their relevance for inclusion. Discrepancies were discussed until a consensus was reached for the final set of papers. Quality appraisal Included studies were independently appraised by two authors (BP, MT) using the Evaluation Tool for Qualitative Studies (ETQS).20 The ETQS is an established and accessible appraisal tool with clear guidelines and an emphasis on meaning, context, and depth, offering a sound approach for evaluating the validity of qualitative research.20,21 Where disagreements were identified, papers were reviewed jointly and differences resolved through discussion. Data extraction and analysis The findings from individual studies were synthesized using thematic synthesis,22 an approach designed to answer questions about people’s reported experiences. This involved developing ‘descriptive themes’ and advancing these into further ‘analytical themes’. To develop descriptive themes, one author (BP) analyzed the 994 Developmental Medicine & Child Neurology 2015, 57: 993–1010

• •

What this paper adds Leisure for children and young people with physical disabilities is associated with fun, freedom, fulfilment, and friendship. The fulfilment of psychological needs for autonomy, relatedness, and competence may explain the fun experienced during activities perceived as leisure.

results section of each primary study line by line and coded direct participant quotes (quotes from parents and participants without physical disabilities were excluded), paraphrased comments, and related contextual comments, then related codes were grouped together and the groups were labelled with particular descriptive themes. This coding process was also independently carried out for five papers by a second author (MT). The two authors then worked with two further authors (JZ, JC) to discuss and critique the groupings, their content, and their labels. These critical discussions involved relating the descriptive themes to the synthesis question and comparing them with existing literature on leisure, motivated behaviour, and well-being.12,23–25 The analytical themes were developed through these discussions. These stages were cyclical and iterative, rather than sequential, and involved constant review and comparisons of codes, tables of quotes, and original papers.22 Data extraction tools, in the form of tables and structured summaries, allowed deconstruction and reconstruction of each study to preserve context,22 and for analysis and comparison.26 During the coding process, where disagreement occurred among authors the original papers were reviewed for context and critically appraised until a consensus was achieved. The coding of all papers was then finalized by the lead author (BP).

RESULTS Included studies Fifteen papers (of the 5125 unique papers identified) reporting on 12 studies met the inclusion criteria (Fig. 1). Of the 15 papers, four reported on a single study;27–30 each contributed unique quotes and these are referenced accordingly. Table I presents details of the included studies. The papers reported the use of the following methodological approaches: phenomenology,30–33 grounded theory,34,35 interpretive perspective,36 and the constant comparative method.27,29,36,37 Five of the included papers did not specify their methodological approach.28,38–41 Five studies focused on CYP’s experiences of sports and active recreation,27–30,34,38,39,41 four focused on play and/or leisure,32,35,36,40 one focused on segregated recreation,31 one focused on participation outside of school,33 and one focused on quality of life.37 Participant characteristics Table II describes details of the participants from the included studies. Three studies included females only.27–30,33,37 The ages of participants ranged from 6 to 21 years: four studies focused exclusively on 6- to

Records identified through database searching n=7197

Records after duplicates removed n=5101

Additional records identified through reference list checks n=24

Records screened by title and abstract n=5125

Records excluded n=4913

Screened by both reviewers n=212

Records excluded n=181

Full-text articles assessed for eligibility n=31

Full-text articles excluded n=16 Leisure meaning not covered n=13 Intervention study n=2 Age of participants n=1

Studies included in qualitative analysis n=15

Figure 1: Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.

12-year-olds,32,35,38,41 four focused on 13- to 19-yearolds,31,34,39,40 and all other studies included both age groups.27–30,36,37 The studies collectively comprised 166 participants. Two studies included CYP without disabilities (n=20)36,40 and two studies included quotes from parents;31,33 these data were clearly identifiable within these papers and were, therefore, excluded from the review. Most of the remaining CYP (n=146) met the criteria for age and physical disability. The exceptions to this were seven CYP aged 19 to 21 years old31,36,39 and 13 CYP with other disabilities: two with hearing impairments,31,34 four with visual impairments,31,34,36 one with a learning disability,34 four with autism spectrum disorder,31,33,41 one with

epilepsy,33 and one with a developmental delay.33 Where possible, the data for these CYP were not included in the analysis. It is possible, however, that some aggregated data relating to this small group of CYP were included in the review. Two studies focused on participants with specific diagnoses: cerebral palsy37 and arthritis.32 The remainder of the studies included participants with various physical disabilities, with the most common diagnostic group being those with cerebral palsy.27–31,33,35–37,39,40 The degree of disability was not reported in most studies; however, seven studies did specify participants’ use of mobility aids.27–31,34,35,38,40,41 Most study participants appeared to have independent mobility, either with or without mobility Review

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996 Developmental Medicine & Child Neurology 2015, 57: 993–1010

‘To examine the identity development of adolescent girls with physical disabilities who participate in organized wheelchair sports with a specific focus on athletic identity development. What type of social interaction do adolescent girls with disabilities experience through disability (specifically wheelchair) sport participation? How does this social interaction contribute to (or detract from) their identity within the context of sport?’

‘To examine differences in experiences of social support between girls who participate in organised vs non-organised sports and to understand the organisational factors that contributed to or hindered perceptions of social support. What physically active recreation activities do adolescent girls with physical disabilities participate in? What social support mechanisms are in place for girls’ with disabilities introduction to and participation in formal and informal recreation participation? How do outcomes by type of participation differ? How are these outcomes influenced by social support?’

Anderson et al.29*

27

Purpose/aims/research questions

Anderson *

Author

Table I: Characteristics of included studies

Differences in social support experienced by girls with disabilities who participate in organized and nonorganized sports

Social interaction and development of identity

Phenomena investigated

Model of social support, encompassing six types of support

Symbolic interactionism; Kleiber’s role of leisure in identity measurement

Theory

4

3

2

1

’Role models: there was a clear difference between the groups of girls (formal and informal participants) in regard to the presence of active role models in their lives. Informal participants could not name . . . a role model.’ ’Reactions to formal/informal sports participation: Both groups of girls experienced diverse reactions to their participation in sport from their family, friends, coaches, and peers.’ ’Similarity to others: Informal participants. defined themselves more by their disabilities. Girls . . . in organised sport not only viewed themselves as normal but also similar to . . . peers and family members without disabilities.’ ’Benefits associated with participation: The informal participants reported . . . benefits more related to their therapy than recreation.

‘Opportunities for explorations of emerging interests – influence of multiple social agents, including parents, friends, and role models’ ‘Interests are personal and are in line with individual’s values – leisure experience of wheelchair sport appears to be in line with values they hold and through interaction with various groups, has allowed their identity as athletes to flourish.’ ’Action in response to the interests; feedback from the environment serves to reinforce interests – girls in this study acknowledged feedback from a variety of sources and the impact it had on their development.’ ’Degree of competence is achieved, which reinforces potential. Peers in particular seem to play a role in this determination of competence.’ ’Degree of commitment to the action and others who are involved – The girls expressed mixed feelings about this commitment and who influences commitment.’ ’Level of comfort with others in the social world that is created around those interests. – participation in (wheelchair) sport often led girls into a community that alternately allowed them a sense of comfort, belonging, normality, and . . . uniqueness’. 5 themes:

Author findings

Review

997

Purpose/aims/research questions

‘To examine how girls with disabilities, as members of two non-dominant groups (female, having a physical disability), participated in active recreation (e.g., sports, dance, exercise) as well as how they perceived their status as female participants with a disability. To determine what opportunities girls with disabilities had access to as well as what benefits they were currently receiving from the recreation opportunities’

‘The purpose of this study was to gather information about the experience of participating in an adapted sports program, in order to identify both positive and negative effects on the development of a child with a physical disability’

‘To examine perceptions of girls with physical disabilities regarding physical recreation pursuits.’ ’Explored not only girls’ perceptions of having a disability but also their recreation experiences’

Author

Anderson et al.28*

Barletta et al.38

Bedini et al.30*

Table I: Continued

Girls’ subjective experience of physical recreation and having a disability; ‘perceptions of physical activities and disability’

Meaning of sports participation to child with physical disability

Self-perception of status as female sports participants with a disability

Phenomena investigated

Labelling (version of symbolic interactionism) and stigma theories

Not stated – literature on child development

Co-cultural theory and standpoint theory

Theory

2

1

Meaning of physical activity: -Freedom -Equaliser -Opportunities to recreate Ownership of disability

-Lack of opportunities to participate -Consequences of stigma -Participation in physical activity apparently helped to reduce stigma -Lack of role models’ ‘Pride in accomplishments – Challenger provides its players the chance to develop psychological aspects of the self.’ ’Skill development and physical health Her enthusiasm in describing how to execute different aspects of baseball . . . suggested feelings of gained competence in her skills.’ ’Enjoyment in engagement A’s attitude about the sport is that it’s best to go out and have fun. The social nature of participation in this league may also be partly responsible for the positive feelings of enjoyment and respect’. ‘Analysis of the data yielded three themes:

-Importance of activity -Opportunities away from home -Minimisation of disability’ ’Barriers to participation in physical activity

Only girls involved in organised sport received social support that facilitated emotional and sport skill growth.’ 5 ’Goals: For the girls who did not participate in organised sport, their goals were more oriented to the present and often focused on increased functioning. Girls . . . in organised sport most often their goals were future oriented.’ ‘Being a girl with a disability: some did not see any difference between themselves and ablebodied girls. . . Others . . . reported various ways they felt different or compromised because of their disabilities.’ ’Perceived benefits to participation in physical recreation: The physical activity benefits traditionally documented . . . were also applicable to girls. . . in this study

Author findings

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Purpose/aims/research questions

‘To extend understands of young disabled people’s sporting experiences by focusing on the social arena of the family. How do young disabled people negotiate relations within the family and in what ways does this influence sporting tastes and interests? To what extent are young disabled people able to use sport to generate and convert (valued) capital within the family and other related fields?’

‘To capture the meaning of summer camp experiences solely for youth with disabilities. What meaning does participation in segregated recreational programs hold for youth with disabilities? What within the segregated camps experience is of relevance to identify development? Do parents share their children’s meaningfulness of the segregated recreational experience?’

‘To explore the relationship between involvement in an after school adapted sports programme and the identity formation of adolescents with physical disabilities.

Author

Fitzgerald et al.34

Goodwin et al.31

Groff et al.39

Table I: Continued

Impact of sports involvement on selfperceptions of youth

Essence of day-to-day experiences of youth with disabilities as they negotiated the environmental, individual and social contexts of a camp experience

Sporting experiences of disabled youth in the context of their family

Phenomena investigated

None stated – literature review on identity development of youth with

Therapeutic landscapes

Disability is a form of social oppression that should be recognized in leisure and sport. Social life can be understood by considering embodiment of individuals through habitus

Theory

1

’Competence and skill development: Participation in the adapted sports program

’Not alone: The experience of campers of this study suggests that the social landscape of segregated summer camps can be much deeper than was previously recognised. Connecting with other youth with disabilities provided a landscape to explore individual biographies, identify with a group of common mindedness and experience, and share in the collective experiences and interests of others with disabilities 2 Independence: The therapeutic nature of the physical landscape of the camp was cause for the campers to learn new skills, optimise existing skills and challenge their physical abilities. The environment provided subtle pressure to excel to the best of one’s ability, validated by standards reflected in the accomplishment of fellow campers with disabilities 3 A chance to discover: Opportunity to discover more about physical activity and recreation opportunities available to them’ Four themes revealed:

1

-Perceptions of normalcy -Body image 3 Access to role models’ ‘Three key themes were generated: 1 Construction and disruption of sporting tastes and other interests: Evidence of a range of uses of sport and other activities in the construction and constitution of legitimate and valued techniques of the body 2 Generation and conversion of capital through sport: The family is an important arena in which techniques of the body are learned, these techniques establish norms and this forms the basis of their habitus 3 Active engagement of these young disabled people in the processes constructing the habitus: All of the young people actively engaged in the construction of their embodied identities through negotiation and calculation of the risks of resistance’ Three themes emerged:

Author findings

Review

999

Hackett32

Author

Table I: Continued

‘To gather in-depth qualitative information on play and leisure experiences from junior school aged children with JIA. It was hoped that any barriers to participation would be uncovered along with any resulting psychosocial issues’

If, and in what ways, involvement in an adapted sports program influenced the self-perceptions of youth with disabilities, and if the experience of playing sports influenced the ways in which these youth viewed their disabilities or incorporated their disabilities into their identity’

Purpose/aims/research questions

Experience of play and leisure

Phenomena investigated

None stated – literature review on play

disabilities rather than any overarching theory

Theory

5

4

3

2

1

4

4

3

2

’Play and leisure as a phenomenon: Effects of arthritis on play and leisure – children reported some difficulty . . . directly attributed to their arthritis. Playmates – friendships were also seen to be affected by arthritis; Play milieu – reported spending more time playing indoors as a direct result of their arthritis. Family activities – children reported a wide variety of family leisure. Barriers to play and leisure: All the children viewed themselves as experiencing certain barriers to play and leisure. These broadly fell into four categories: physical, environmental, self-imposed constraints and those imposed by others. Coping strategies: Children employed a variety of coping strategies in order to cope with difficulties experienced with certain play and leisure activities. These included retreat, observation and adaptation. Feelings: most common theme . . . was feeling of being left out of . . . play and leisure activities’

seemed to provide an avenue through which most could develop an overall sense of competence in skills not associated with sports Emotional expression: All of the participants reported that they could express a great deal of emotion through sport, though encounters that triggered emotions varied considerably Social interaction and connectedness to others with a disability: Sport provided (nearly all participants) with an opportunity to interact with other individuals with disabilities. This . . . was important as it was a social context that was not readily available. (It allowed) a sense of being connected to others and an opportunity to ‘be themselves’ Decreased awareness of disability: (Many reported being) more aware of disability when their sense of independence was taken away. (They) reported being less aware of their disability when they experienced a sense of comfort or freedom within a situation such as during recreational activity and sport’ major themes:

Author findings

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Developmental Medicine & Child Neurology 2015, 57: 993–1010

‘To explore the perceptions and personal experiences of play from participant’s experiences. The goals of the research project were exploratory in nature, and centred on gaining understanding of play from participant’s experiences’

‘To examine inclusion from the perspectives of children with disabilities in physical activity. This study was carried out to:

Pollock et al.40

SpencerCavaliere et al.41

3

2

acknowledge the importance of children’s perspectives; contribute insight to a small but growing area of research in the field of adapted physical activity; expand research to take into consideration relevant activity contexts for children with disabilities, such as recess, community sport, and free play’

‘To increase understanding about whether children with disabilities are motivated by similar factors as children without disabilities when participating in structured or unstructured activities, or if their perception of successful participation is changed by having a disability. What successful participation means to children with physical (including neurological and musculoskeletal) disabilities and their families? What supports and what hinders participation among children with disabilities?’

Heah et al.33

1

Purpose/aims/research questions

Author

Table I: Continued

The subjective experience and meaning of Inclusion in physical activity

Perceptions and experiences of play for young people with and without physical disabilities

Lived experience of what participation in means to children with disabilities and their families

Phenomena investigated

Inclusion model – including sense of belonging, acceptance, and value

Activity theory; person–environment– occupation model

Person–environment– occupation model; model of the flow state

Theory

3

2

1

’Gaining entry to play: aspects of feeling included were characterized by acceptance or rejection by other children’ ’Feeling like a legitimate participant: Children associated making a contribution and taking on important roles that are valued by others with feeling included. Adult intervention and few opportunities were associated with not feeling included’ ’Having friends: viewed . . . as significant to feeling included and to opportunities to take part in activities. Friends were more likely to extend invitations to play and to offer encour agement. . . . not having friends was

-’Nature of play: the activity itself is not the key, but rather the characteristics of the engagement in the activity -Environmental supports and barriers: most of the participants with disabilities identified more barriers than those adolescents with no disabilities. The social environment appeared to be an important factor in enabling or dis abling . . .play -Personal factors influencing play: the partici pants did not identify many personal factors that influenced their play’ Three themes:

Meaning of successful participation -Having fun -Feeling successful -Doing and being with others -Doing things by myself 2 Environmental supports and barriers -community programme design -parent values and preferences -parent vigilance -social and physical support 3 Personal supports and barriers keeping up with the other kids’ Themes related to:

1

‘All children highlighted one or more themes that defined what successful participation meant to them. However they often failed to identify any environmental or personal supports and barriers to participation, unlike their parents who identified such issues. Three broad categories:

Author findings

Review

1001

‘To gain insights about how inclusion influences and is influenced by self-perceptions, why some young people view inclusion more positively than others, and how best to facilitate meaningful inclusive leisure experiences: What are youths’ perceptions of self? What are youths’ experiences in leisure and other life contexts, including their interactions with others?’

Wilhite et al.36

Tamm et al.

‘To gain knowledge and understanding of how children with restricted mobility behave in different play situations. Aim of discovering a conceptual framework for describing and explaining the play of children with restricted mobility’

Purpose/aims/research questions

35

Author

Table I: Continued

Inclusion, and how it influences and is influenced by selfperception

Behaviour of children with restricted mobility in different play situations

Phenomena investigated

Ecological perspective/ systems approach

Symbolic interactionism; ecology of human development

Theory

4

3

2

1

’Acceptance: How the level of acceptance in a certain environment or context influenced the person, and how the person influenced the level of acceptance in the environment. Disability: reflected as a constraint or how the environment influenced the person and as an enhancement or how the person influenced the environment. Maturity: The environment appeared to shape and change the informants’ sense of self in relation to maturity. Self-perception: Both youth with and without disabilities expressed a positive sense of self. While informants rarely made reference to physical self-concepts, informants with disabilities felt others focused more on their physical disability/appearance and conse quently, saw them as less capable than they viewed themselves.’

-The factors giving rise to this type of play were the absence of playmates and the char acter of the play environment. Adults took the place of friends. Children felt it was better to play with adults than to play alone’ 4 conceptual categories were identified:

-The principal factor giving rise to play alone was previous experience. . . . it was fruitless to expect to be with others in play Category C: play with adults

-Interactive play – could be role play, different indoor games or group play in the immediate environment – home, school or recreation centre. Children with restricted mobility were . . . given roles with a ‘lower status’ than . . . playmates -Onlooker play – games where children played with playmates and where they described themselves as players even if the observations showed that they were onlookers of the games of others Category B: play alone

associated with not being included, being teased and limited engagement’ ‘Category A: play with friends

Author findings

1002

Developmental Medicine & Child Neurology 2015, 57: 993–1010

‘To examine how well children’s priorities are represented in KIDSCREEN, a generic self-report health-related quality of life instrument for children’

Young et al.37 Children’s perceptions of most important areas for quality of life

Phenomena investigated

*Indicated papers report on different aspects of the same study (total participants: n=24).

Purpose/aims/research questions

Author

Table I: Continued

Health-related quality of life

Theory

-children enjoyed a wide range of non-sedentary pursuits, clubs and outings, and sedentary pastimes were also valued especially as a focus for friendships. Children talked about enjoyment of resting and relaxing, being with friends and family and doing their own thing. Autonomy was important especially for boys. Safety was important for younger children. Children felt constrained by unhelpful attitudes or behaviour of gatekeepers’

-children referred to positive emotional states and a few children used strategies to generate a personal sense of achievement. Accounts of difficulties performing physical tasks were common Recreational activities and resources:

-valued as a place for relaxation, rest and recreation . . . (and) was relatively free of rules and constraints Self and body:

-brought considerable enjoyment and stimulation to their lives, particularly through opportunities it provided for social, extra-curricular, and sporting pursuits Home environment:

-Family members: Children spoke warmly about relationships with parents and greatly valued their affection, companionship, and support -Friends and peers: The definition of happiness for many children was spending time with friends. Friends were valued for practical help and emotional support, but their main function was companionship School environment:

‘Social relationships:

Author findings

Review

1003

22F

14F

1F

Anderson et al.29*

Anderson et al.28*

Barletta et al.38

3F, 7M

4F, 5M

4F, 7M

9F, 3M

3F, 5M (+8 parents) 10F, 10M

Fitzgerald et al.34

Goodwin et al.31

Groff et al.39

Hackett32

Heah et al.33

Wilhite et al.

11F, 11M

5F, 5M

Tamm et al.35

36

2F, 9M

SpencerCavaliere et al.41

Pollock et al.40

11F

Bedini et al. *

30

13F

27

Anderson *

Author

Number and sex of participants

11–21 (2 participants >18y)

6–12

8–12

13–18

6–15

7–11

15–21 (4 participants >18y)

14–19 (1 participant >18y; no quotes from this participant were included in the original paper)

13–14

8–17

10

10–16

10–18

10–18

Age, y

Table II: Characteristics of participants by study

W (11), AA (10), H (1)/USA

NS/Sweden

NS/Canada

NS/Canada

W (16)/Canada

NS/UK

W (9), AA (2)/USA

NS/Canada

NS/UK

W (8), ME (1), AA (2)/NS

W/USA

NS/USA

W (10), H (1), AA (1), ME (1)/USA

W (10), H (1), AA (1), ME (1)/USA

Ethnicity (n)/study location

CP (5), SB (3), VI (2), SCI (1), MD (1), 10 with no disabilities

CP (5), motor delay (1), MD (1), DCD (1), BPI (1), NM (1), ASD (1) Diagnoses such as CP, SB, polio

CP (3), SB (1), autism (2), DD (1), epilepsy (1) CP (6), SB (3), JA (1), no disabilities (10)

CP (5), SB (4), oxygenesis imperfecta (sic) (OI: 1?), anoxic insephalitis (sic) (anoxic encephalitis: 1?) Arthritis (12)

NS, WC users (3), dyspraxia (1), CP and amputated arm (1), HI (1), CP (1), degenerative (1), LD (1), VI (1) CP (5), HI (1), ASD (1), VI (1), VI and MI (1); no quotes from participants with HI or ASD were included in original paper

OI (2), SB (5), CP (6), limited mobility NS (but identified as having a physical disability) OI (2), SB (3), CP (4), limited mobility (1), brain injury

OI (2), SB (8), CP (7), amputated leg (2), limited mobility (2), cerebral anoxia (1)

OI, SB (6), CP (3), amputated leg (2), limited mobility

Diagnoses (n)

NS

WC (1), partial ambulation (2), independent ambulation (8) WC, crutches, walker

WC (2), EWC (3), crutches (2)

NS

NS

NS

WC (3)

Walker, WC (3), crutches (1)

WC (4), walker (3), EWC (3), none

WC (10), EWC (3), walker (2) Leg braces, crutches

WC (14), WC activity only (3), EWC (3), walker (2)

WC (10), WC activity only (3)

Mobility aids (n)

Verbal communication implied – audio-taped and transcribed Verbal communication implied – audio-taped and transcribed Verbal communication implied – needed to be understood on audiotape Verbal communication implied – interviews were transcribed verbatim Selection criteria: good verbal communication skill Verbal communication implied – interviews were tape-recorded, and conducted by phone

Verbal communication implied – phone interviews, audio-taped, transcribed. Youth with hearing impairment – written questions and probes sent, with answers provided by e-mail Verbal communication implied – audio-taped and transcribed

Verbal communication implied – interviews audio-taped and transcribed, one recorded in detailed notes. Able to participate in interviews without assistance Girls who could participate in a verbal interview specified, interviews audio-taped and transcribed Verbal communication implied – audio-taped and transcribed Verbal communication implied – interview transcribed verbatim Verbal communication implied – audio-taped and transcribed. Capable of conversation stated Communication not specified. No indication of communication problems

Communication

F, female; W, white; H, Hispanic; AA, African–American; ME, mixed ethnicity; OI, osteogenesis imperfecta; SB, spina bifida; CP, cerebral palsy; WC, wheelchair; EWC, electric wheelchair; NS, not specified; M, male; HI, hearing impairment; LD, learning disability; VI, visual impairment; ASD, autism spectrum disorder; MI, mobility impairment; DD, developmental delay; JA, juvenile arthritis; MD, muscular dystrophy; DCD, developmental coordination disorder; BPI, brachial plexus injury; NM, nemaline myopathy; SCI, spinal cord injury. *Indicated papers report on different aspects of the same study (total participants: n=24).

Verbal communication implied – audio-taped and transcribed, one recorded in detailed notes. One participant used a Dynavox communication aid NS 8–13 Young et al.

37

13F, 15M

NS/UK

CP – unilateral spastic (11), bilateral spastic (16), dyskinetic (1), intellectual impairment (none or mild: 22; moderate or severe: 6)

Communication Mobility aids (n) Diagnoses (n) Ethnicity (n)/study location Age, y Number and sex of participants Author

Table II: Continued 1004

Developmental Medicine & Child Neurology 2015, 57: 993–1010

aids. Two separate studies included a participant who used a different communication method.31,37

Quality appraisal All of the included studies provided information on purpose, the phenomena being studied, the participants, and the study outcomes (Table I). The most common quality concern (arising in nine studies) was a lack of discussion of the techniques used to identify researcher perspectives that might have shaped interpretation (termed as ‘researcher bias’ in the ETQS, Table III). Four studies failed to mention ethical clearance, confidentiality, or consent procedures. Three studies did not provide example questions or an interview guide. Meaning of leisure participation The descriptive themes, relating to the meaning of leisure for CYP with physical disabilities, that emerged from the analysis were (1) ‘fun’: the pleasure experienced from leisure; (2) ‘freedom’ of choice and from constraints; (3) ‘fulfilment’: discovering, developing and displaying potential; and (4) ‘friendship’: social connectedness and belonging. These descriptive themes and their related data (i.e. direct and paraphrased quotes from study participants) are presented below. Upon comparison of these themes with the literature (see Method), they were found to resonate most strongly with self-determination theory (SDT).42 The development of the four descriptive themes into analytical themes is described in the Discussion, where the results are related to the existing literature, and SDT is used to explore the relationships among the descriptive themes. The following sections give examples of quotations from several study participants. Each quotation is followed by a description of the participant from which it was obtained, including the sex and age (or overall age range for the study if individual participant age was not stated) of the participant. ‘PD’ is used to indicate whether or not the participant was known to have a physical disability and ‘NS’ is used to indicate that certain participant information was not specified (i.e. sex or disability). Fun The descriptive theme ‘fun’ encapsulates the centrality of pleasure and enjoyment to the meaning of leisure. Fun was a defining element of leisure, being essential to the experience.36,40 It was described as the purpose of and a key motivating factor for CYP engaging in leisure. I think play is centred around enjoyment, and work is centred around tasks. Female, 17 years, PD40 The important part is having fun with baseball. And that’s the truth. Whenever I play, I have fun. Female, 10 years, PD38 CYP spoke about activities that lacked fun as being ‘boring’. Being bored without having any fun meant that activities were not considered leisure. This was particularly

For the ETQS quality ratings, ‘+’ indicates that some of the checklist criteria have been fulfilled and where they have not, or where they have not been adequately described, the conclusions are unlikely to alter; ‘++’ indicates that all or most of the checklist criteria have been fulfilled and where they have not the conclusions are very unlikely to alter; and ‘–’ indicates that few or no checklist criteria have been fulfilled and the conclusions are likely or very likely to alter. *Indicated papers report on different aspects of the same study (total participants: n=24).

– + + + + + ++ + ++ + + + + ++ + – – – – + – + + – – + + – – – – + + ++ + – ++ ++ – + + ++ ++ ++ ++ ++ ++ ++ + + + ++ ++ ++ + ++ ++ ++ ++ ++ 27

Anderson * Anderson et al.29* Anderson et al.28* Barletta et al.38 Bedini et al.30* Fitzgerald et al.34 Goodwin et al.31 Groff et al.39 Hackett32 Heah et al.33 Pollock et al.40 Spencer-Cavaliere et al.41 Tamm et al.35 Wilhite et al.36 Young et al.37

+ + ++ + + + ++ + ++ + ++ ++ ++ ++ ++

++ – ++ – ++ ++ ++ – ++ ++ + + ++ ++ –

++ + + + – + ++ + + ++ + + – ++ ++

+ + + + + ++ ++ ++ + ++ + + + ++ ++

+ + + + + + ++ ++ ++ ++ ++ ++ ++ ++ ++

+ + + – + – – + ++ ++ + ++ ++ – ++

– + + + ++ – ++ ++ ++ + + ++ ++ + ++

Implications Researcher bias Data analysis Data collection Ethics Context IV: outcomes Context III: sample Context II: setting Context I: theoretical framework Description of phenomena Clarity of purpose Author

Table III: Quality appraisal using the Evaluation Tool for Qualitative Studies (ETQS)

striking in relation to activities that would be commonly be categorized as leisure by others. [Cubs] is worse [than school] . . . I just sit there, go around the circle, do the grand howl, which is quite boring . . . and we just sit and Miss, all Miss says is ‘BAH BAH BAH, sit down!’ It’s a horrible place and no fun things ever happen . . . not one. Male, 8– 10 years, PD37 CYP did not define leisure by the activity itself but rather by how that activity was experienced by them and, for instance, whether or not it was fun.40 What was experienced as leisure by some was not experienced that way by others. For example, one child reported that attending hockey was fun ‘because all my friends are there’ (male, 6– 15y, PD),33 whereas another did not ‘because it gets too boring’ (female, 6–15y, PD).33 While the data indicate that fun is necessary for leisure, it also indicates that just being fun is not sufficient for an activity to be perceived as leisure; CYP reported that sometimes activities that were not leisure, such as work, could also be fun. Sometimes tasks that are meant to be work . . . there can be enjoyment found . . . Female, 17 years, PD40 A characteristic that appears to delineate leisure from other fun activities is a sense of freedom, which is discussed below.

Freedom The descriptive theme of ‘freedom’ incorporates freedom of choice and freedom from constraints, and was essential for an experience of leisure. Freedom was also explicitly linked to fun and enjoyment by CYP in five studies,27,28,30,31,37,39,40 but CYP also spoke of freedom of choice as differentiating leisure from other activities that may be enjoyable. . . . [babysitting] was fun [if] you have nothing else planned. But then when you have to go babysit and your friends are going out to some party . . . that’s when I consider it work. Female, 17 years, PD37 Freedom of choice appeared to be a defining characteristic of leisure. It was important that participants felt that they had a choice not only of what they did, but also of who they did it with. [Activities on my own are leisure] now I have the option of actually doing things with other people. And now doing things on my own is a choice. Whereas before [when I was alone as a child] I had to do things on my own, I had no choice [so I wasn’t satisfied]. Female, 17 years, PD40 When describing the experience of leisure, CYP referred to feeling free of worries and constraints and two studies explicitly identified ‘freeing’ as a defining element of leisure for CYP.36,40 This sense of freedom was related to Review

1005

CYP feeling less aware of their disabilities and having the freedom to be themselves.39 . . . I feel free when I am doing [sports]. Female, 16 years, PD27,28,30 The experience of leisure was reduced when freedom was restricted. For some, this resulted from the child or young person’s physical limitations, especially pain. Your friends call for you and you can’t go out because you’re too sore. NS, 7–11 years, PD32 However, CYP more often mentioned the restrictions that resulted from the impact of other people. Overprotectiveness from gatekeeping adults was identified as reducing freedom. My helper at school at lunchtime, she doesn’t let me do stuff . . . NS, 7–11 years, PD32 The behaviour of peers was also discussed as a restriction on freedom. I mostly play alone. I have no choice. I’m almost never allowed to be in the games, because it doesn’t suit the others. NS, 6–12 years, PD35 CYP attributed the actions of peers to stigmas associated with disability; for example, the inconvenience of making accommodations to include them, such as waiting for care tasks to be completed, or low expectations. I always have to change nappies every other hour and sometimes my pals get tired of waiting and go home. NS, 6–12 years, PD35 . . . you felt different, you couldn’t participate. Well you could, but people wouldn’t pass you the ball because they were afraid they were going to hurt you or something like that. Female, 17 years, PD40

Fulfilment was also achieved through the encouragement, support, and admiration CYP received from family, friends, and others with regard to their performance in leisure activities. Such acknowledgements conveyed a message of their social value and gave them a sense of pride, contributing to their enjoyment. . . . when [dad] starts talking to his mates he doesn’t stop. God he goes on and on and I like it ‘cause he’s telling his mates about my football. Male, 13 years PD34 CYP described the challenges they faced in achieving fulfilment in daily life, quoting examples of feeling underestimated by others because of their disabilities and how this also resulted in them underestimating themselves.28– 32,34–37,39–41

You have to spend an awful lot of your energy letting people know that you are not incompetent . . . Male, 19 years, PD39 CYP described how leisure allowed them to experience fulfilment by proving their abilities, demonstrating their potential, countering assumptions about their abilities, and showing that there is more to their identity than being disabled. When people say that I can’t do something, I try 110% harder to prove them wrong. I think that’s why I have been so active, I like proving people wrong. Female, 18 years, PD27 Achieving fulfilment through leisure depends on the level of challenge being ‘just right’. Participants felt undervalued or demeaned if activities were too easy or too much assistance was provided. It didn’t feel really good [when they took it easy on me during games] because it felt like they didn’t really need to do anything. Male, 12 years, PD41

This final quote also hints at the next theme, the importance of fulfilment to a leisure experience.

However, activities that were too hard ceased to be experienced as leisure, demoralized participants, and discouraged them from trying.

Fulfilment The descriptive theme of ‘fulfilment’ was used to describe leisure activities that felt meaningful to CYP when they discovered, developed, and displayed their potential. Fulfilment from leisure meant experiencing a sense of self: ‘[sport makes me] feel really good about myself’ (female, 14y, PD).27 This sense of fulfilment was achieved in a variety of ways, and included both internal and external influences. For example, fulfilment was achieved as a result of success at mastering a new challenge or triumphing over others in competition.

I thought I couldn’t [do gym] ‘cause I couldn’t do, um, cartwheels and I just couldn’t do it so I just quit . . . I felt really like sad, ‘cause I wanted to do it but couldn’t. Female, 8–10 years, PD37

. . . he was hoping to go over my head but I caught it, like this, and he’s really, really, really good at soccer so I was pretty proud. Male, 12 years, PD41 1006

Developmental Medicine & Child Neurology 2015, 57: 993–1010

As with freedom of choice, CYP reported that the sense of fulfilment gained from leisure activities was often affected by the attitudes of peers and adults in their social environment. This is further explored in the next theme.

Friendship The descriptive theme of ‘friendship’ incorporates feelings of belonging and social connectedness, and was referred to in every study, making this theme a universal finding from the synthesis (Table IV). Friendship, being with others, and a sense of belonging to a social group often seemed to be

Review

1007

U U U U U 13

U U

U U 10

U U

U U U U U U U U

U U U U

Fun: enjoyment and happiness

U U U 13

U U

U U U U U

U U U

Freedom: free from constraints and free to choose

U U U 15

U U U U U U U U U U U U

Friendship and family: belonging and acceptance

*Indicated papers report on different aspects of the same study (total participants: n=24).

Anderson27* Anderson et al.29* Anderson et al.28* Barletta et al.38 Bedini et al.30* Fitzgerald et al.34 Goodwin et al.31 Groff et al.39 Hackett.32 Heah et al.33 Pollock et al.40 SpencerCavaliere et al.41 Tamm et al.35 Wilhite et al.36 Young et al.37 Total

Author

Fulfilment: development and expression of competence and identity

Emergent themes from thematic synthesis

U U 5

U

U

U

Impact of disability: self-perception/ self and body

Table IV: Emergent themes from the thematic synthesis and categorized themes/sub-themes from the original studies

U U 11

U

U U U U U U U U

Benefits associated with participation: identity; competence; health; enjoyment; opportunities; freedom/ minimization of disability; expression

6

U

U U U

U

U

Barriers and supports to participation: physical, social, or personal constraints; supports

U U 6

U U U

U

Meaning of participation

Categorization of themes from original studies

U U U 15

U U U U U U U U U U U U

Social context of participation: inclusion/exclusion, responses of others, role of adults, influence of significant others (family/friends), role models, similarity with others

more important to CYP than the leisure activity itself. Friendship was also identified by CYP as directly contributing to fun in more than half of the studies.27–29,31,33,37,39–41 . . . it’s fun because all my friends do it . . . Female, 14 years, PD28 The importance of friendship to the experience of leisure was evidenced by the actions taken by CYP to be with others. Some CYP were willing to risk pain or discomfort, while other CYP described voluntarily giving up choice and control to ease their entry into games with others. CYP would take on the less popular roles in an activity, or tolerate a lack of acceptance of their contributions to a game, as long as they were allowed to participate. . . . I should stay in at breaks, but I find that boring ‘cause my friends won’t actually stay in with me, ‘cause we’re allowed on the field when it’s dry. NS, 7–11 years, PD32 . . . it usually wasn’t me who chose because if I ever did get someone to play with, I usually said, ‘Okay, you’re playing with me, that’s good enough, like, you choose’. Female, 17 years, PD40 Many CYP spoke of the rejection they had experienced from peers, leaving them to spend time alone against their will. These negative or absent social interactions reduced enjoyment. While they were still free to play alone, this was not usually experienced as fun and leisure. The attitudes and behaviours of others in the environment had an impact on the experience of leisure for many participants. You know when nobody wants to be your friend or anything you don’t feel included. You feel left out and lonely. Female, 12 years, PD41 CYP reported that leisure in segregated settings, such as camps and sports teams, generally provided a special sense of camaraderie and connectedness with others with disabilities. Participants could be themselves, and there was a sense of shared understanding and acceptance, without the negative interactions they experienced in other settings. . . . you kind of get on a whole new level when you compete because you have people who understand you better. Female, 18 years, PD29

DISCUSSION This systematic synthesis of qualitative studies identified four descriptive themes characterizing the meaning of leisure to CYP with physical disabilities. These themes were labelled as fun, freedom, fulfilment, and friendship. These identified themes are also reflected in the wider leisure literature, where there is broad consensus that fun and freedom are fundamental to the experience of leisure.43,44 Opportunities for social contact and development of com1008

Developmental Medicine & Child Neurology 2015, 57: 993–1010

petence are primary motivations for engaging in leisure.43,45–48 With regard to the existing literature, the four samelevel descriptive themes resonate most strongly with SDT, and this was, therefore, used to develop the descriptive themes into analytical themes by exploring the relationships between them. SDT advances the understanding of how addressing basic psychological needs can result in the motivation to act and can foster a sense of well-being.42 Specifically, SDT proposes that humans pursue activities because they are intrinsically motivated to fulfil three basic psychological needs: ‘autonomy’ (a sense of choice), ‘competence’ (a belief in their ability to be able to do an activity), and ‘relatedness’ (being connected to others).42,49 When these needs are supported, individuals will experience well-being through increased satisfaction and the activity will become more intrinsically motivating.42 Interpreting the descriptive themes in the context of SDT suggests that leisure provides a way of meeting these psychological needs, with the resultant satisfaction being experienced as fun and enjoyment. In the present study, CYP reported that leisure activities were fun, and often identified that they were fun because they allowed the experience of freedom, fulfilment, and friendship. The extent to which CYP experience fun is influenced by the extent to which their psychological needs for freedom of choice (‘autonomy’), fulfilment, through a belief in their ability to achieve (‘competence’), and friendship, through their connection to others (‘relatedness’), are met. The degree to which each need is met can vary; for example, in some cases, CYP may choose to accept a reduced sense of ‘competence’ to meet an overriding need (at that time) for ‘relatedness’. The results of this synthesis highlight the challenges faced by CYP with physical disabilities in meeting these needs. Participants of the included studies consistently discussed how leisure and having fun were strongly related to the social context of leisure (i.e. the people present and the interactions with them).44,50–52 For three of the four descriptive themes (‘freedom’, ‘fulfilment’, and ‘friendship’), the CYP reflected on how their leisure participation can be restricted by their social environment.53–56 This highlights the importance of considering how practitioners can influence the broader social context, in order to support leisure participation by CYP with disabilities. The results from the present study converge with the wider literature and indicate the need to move from merely ‘shared space’57 to the creation of a ‘shared experience’57 of fun, friendship, freedom, and fulfilment. Existing interventions, such as those addressing stigma,58 may offer some helpful approaches to implementing this. CYP in the included studies described how they use leisure to confound expectations and overcome the stigma of their disabilities,54 and to prove their worth and ability.59 This converges with literature that indicates that

demonstrating competence through leisure enhances selfefficacy beliefs,46 and provides an opportunity to develop a particular identity and project this to others.48 The implication of this for practitioners is that it demonstrates the need to encourage families, schools, and leisure facilities to foster environments that support choice and autonomy,60 and encourage mastery. A key to this is to focus on selfimprovement and participation, rather than on competition with others.61 These approaches can promote the value of all participants involved in leisure activities.62 While it is necessary to ensure that universal leisure environments are accessible and supportive of meaningful leisure for all CYP, it is also important to recognize that some CYP with physical disabilities valued the option to ‘self-exclude’ and participate alongside others with similar disabilities for some leisure experiences. Such segregated activities reportedly enabled CYP to experience fun, friendship, fulfilment, and freedom, thereby meeting the psychological needs of SDT in ways that are not always possible with peers without physical disabilities. Attending activities with other CYP with disabilities provides a basis for communal understanding and support,1,56 and segregated settings were reported to provide an effective avenue for meeting the needs for a sense of freedom and competence.56,59 These findings suggest that, provided that CYP have genuine choice on where, how, and with whom they experience meaningful leisure, the best social settings to meet their psychological needs are likely to relate to the specific preferences of each child or young person, rather than there being one solution for all.

Double coding was used, but this was performed for only certain sections rather than for all of the information because of resource limitations, which limits the reliability of the findings. Two-thirds of the studies reviewed focused on sports or physical activity; fewer studies related to other leisure areas. A very recent study found that CYP with severe disabilities who engaged in mostly sedentary leisure valued leisure experiences that offered a sense of belonging, fun, and control and choice, closely echoing the findings of this synthesis.52 Future studies should focus further on the meanings of sedentary and solitary leisure participation to CYP with physical disabilities, and should also consider populations that remain underrepresented, such as CYP with communication limitations or without independent mobility. SDT was considered when interpreting the themes identified in this study; other theoretical models could also be considered to broaden this interpretation.

CONCLUSION Fun, freedom, friendship, and fulfilment emerged as central to leisure for CYP with physical disabilities. These themes resonated with the psychological needs of autonomy, relatedness, and competence, as described by SDT, and the sense of satisfaction and well-being experienced when these needs are met. Further research should focus on underrepresented populations, such as CYP with limited communication, and underresearched leisure areas, including sedentary leisure. A CK N O W L E D G E M E N T S

Limitations Unresolved controversies remain regarding the synthesis of qualitative research, particularly where underlying methods or questions differ.63 The phenomenon of interest in this evidence synthesis (experience of leisure) was not the stated phenomenon investigated in most of the studies. However, leisure experience was explicitly or implicitly included in the original findings of all papers, and it was therefore deemed appropriate to include them. A small number of participants (n=20) did not meet the inclusion criteria.

We would like to thank Cynthia Fraser, Senior Information Officer, Health Services Research Unit, University of Aberdeen, for providing guidance and advice on the systematic search strategy used. No funding was secured for this study. The authors have stated that they had no interests that might be perceived as posing a conflict or bias.

SUPPORTING INFORMATION The following additional material may be found online: Appendix S1. Search Strategy used for CINAHL database.

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