Early Human Development 90 (2014) 307–314

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Participation and enjoyment of leisure activities in adolescents born at ≤ 29 week gestation Noémi Dahan-Oliel a,b, Barbara Mazer b,c, Patricia Riley a, Désirée B. Maltais d,e, Line Nadeau d,e, Annette Majnemer a,b,⁎ a

Montreal Children's Hospital, Montreal, Canada School of Physical and Occupational Therapy, McGill University, Montreal, Canada Jewish Rehabilitation Hospital, Laval, Canada d Department of Rehabilitation, University of Laval, Quebec City, Canada e Centre for Interdisciplinary Research in Rehabilitation and Social Integration, Quebec City, Canada b c

a r t i c l e

i n f o

Article history: Received 23 September 2013 Received in revised form 16 February 2014 Accepted 25 February 2014 Keywords: Preterm infants Adolescence Leisure activities

a b s t r a c t Background and objectives: Motor, cognitive, social and behavioral problems have been found to persist in adolescents born extremely preterm. Leisure participation has been associated with health benefits; however, few studies have explored leisure participation in this population. The aim of this study was to describe leisure participation in adolescents born at ≤29 week gestation. Secondary aims were to identify potential differences in participation related to sex, age, motor competence, and cognitive ability, and between adolescents born preterm and their siblings born at term. Methods: This cross-sectional study included 128 adolescents (mean age: 16.0 years; 67 females) with a mean gestational age of 26.5 weeks. All participants, as well as 22 siblings born at term, completed the Children's Assessment of Participation and Enjoyment. Results: Participation levels were highest in social and recreational activities, and lowest in active-physical and skill-based activities. Boys participated in more active-physical activities (p = 0.01) and more often (p b 0.001) than girls, whereas girls had higher participation levels in social and self-improvement activities (p b 0.05) than boys. Older adolescents engaged in more social activities (p = 0.01) and more frequently (p = 0.002) than younger adolescents. Overall, participants with poor motor and cognitive skills had lower participation levels in active-physical and social activities. Adolescents born preterm participated in fewer recreational activities compared to term-born siblings (p = 0.013). Conclusions: Engagement in active-physical and skill-based leisure activities needs to be promoted in boys, and especially in girls with a history of prematurity. Activities should be adapted to sex and individual skill level in order to promote participation. © 2014 Elsevier Ireland Ltd. All rights reserved.

1. Introduction The incidence of preterm birth (b 37 weeks gestational age) ranges from 5 to 18% across 184 countries worldwide [1] and these rates appear to have increased over the past 20 years [2,3]. Higher rates of cerebral palsy, autism, and visual impairments have been found in children born preterm at less than 32 weeks gestational age compared to term controls [4–7]. Long-term developmental sequelae, including motor, cognitive, behavioral, and/or other developmental impairments, Abbreviations: CAPE, Children's Assessment of Participation and Enjoyment; MABC-2, Movement Assessment Battery for Children—Second Edition; Vineland-II, Vineland Adaptive Behavior Scales, Second Edition. ⁎ Corresponding author at: School of Physical & Occupational Therapy, Faculty of Medicine, McGill University, 3654 Promenade Sir-William-Osler, Davis House, Room D-26, Montreal, QC H3G 1Y5, Canada. Tel.: +1 514 398 4501. E-mail address: [email protected] (A. Majnemer).

http://dx.doi.org/10.1016/j.earlhumdev.2014.02.010 0378-3782/© 2014 Elsevier Ireland Ltd. All rights reserved.

are reported in about 40% of very low birth weight infants (b1500 g) that survive [8]. Despite advances in prenatal and neonatal care, academic challenges and activity limitations persist into adolescence and young adulthood [9,10]. Being exposed to perinatal biologic stresses, coupled with having mild motor, cognitive and/or behavioral impairments, and living in overprotected family environments are indicators of a more socially deprived and sedentary lifestyle compared to healthy peers [11]. Adolescents living with a childhood-onset developmental disability may be more restricted in life roles, such as leisure and recreation, which may have a negative impact on their quality of life [12,13]. Leisure is one of the “life situations” included in the International Classification of Functioning, Disability and Health—Child and Youth Version's concept of participation and includes games, sports, arts and culture, crafts, hobbies and socializing (code d920) [14]. Participating in leisure activities enables children to gain new skills and competencies and enhance cardiovascular fitness [15]. Benefits of leisure participation

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extend beyond physical health parameters, and include mental health benefits such as reducing stress and anxiety, enhancing mood and promoting achievement motivation [16]. A recent systematic review of the literature on leisure participation in individuals born preterm identified four studies that focused on adolescents [17]. Significantly lower leisure participation scores in social and physical activities were reported for teenagers born preterm compared to term controls [18–21]. However, the use of validated measures including a range of different leisure activities is limited, and there is a lack of studies including the youngest and oldest adolescents. More empirical evidence is needed to identify the level of participation across different types of leisure activities in adolescents born preterm using validated measurement tools. Determining whether or not adolescents born preterm are successfully participating in leisure activities is essential in ensuring optimal health and social integration into society. Given the importance of the family as a determinant of leisure participation [22], siblings were used to control for environmental context. Engagement in a range of different activity types has been found to vary in different adolescent populations [23–25] but has not been studied in those with a history of prematurity. The aim of this study was to describe participation in recreational, active-physical, social, skill-based and self-improvement leisure activities in adolescents born at ≤ 29 week gestation. The secondary aims were to identify potential differences in participation levels according to sex, age, motor competence, and cognitive ability, and between adolescents born extremely preterm and term-born siblings. 2. Methods 2.1. Participants Adolescents aged 12–20 years who were born at ≤29 week gestation between January 1991 and July 2000 and eligible at birth for the Neonatal Follow-up Program were recruited. Exclusion criteria included a documented genetic syndrome or chromosomal anomaly. Whenever possible, a healthy term born sibling (gestational age ≥37 weeks) within 3.5 years of the participant's age and aged 10–21 years was recruited for comparative purposes.

therapist or physical therapist using the Movement Assessment Battery for Children—Second Edition (MABC-2) [26]. The MABC-2 was designed to assess three components of motor competence: manual dexterity, aiming and catching, and balance in children between three and 16 years of age. It has been successfully used in young adults born prematurely [27]. A psychologist administered the Leiter-R brief IQ [28] to measure the adolescents' cognitive abilities. It is a non-verbal cognitive battery which provides an estimate of global intellectual level (from severe delay to very high/gifted) in children between two and 20 years of age. The Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) [29] was administered by a psychologist using a semistructured format to interview parents. This discriminative normreferenced measure of functional status in communication, daily living skills, socialization, and adaptive behavior was designed for children and youth with or without disabilities. 2.4. Participation Leisure participation, which is the primary outcome of this study, was assessed using the Children's Assessment of Participation and Enjoyment (CAPE) [30]. This assessment was completed by a trained occupational therapist, physical therapist or psychologist using a semistructured interview either with the adolescent alone, with the help of a proxy, or through parent-report if the adolescent was unable to participate in the assessment. Recruited siblings also completed the CAPE together with an evaluator. The CAPE was designed for use with children and youth with or without disabilities aged six to 21 years. It assesses participation over the past four months in five types of everyday leisure activities (recreational, active-physical, social, skill-based and self-improvement) outside of mandated school activities. Each of the 55 leisure activities is scored according to five dimensions: diversity (number of activities within each subscale), intensity (how often), with whom, where, and enjoyment level. Internal consistency for the CAPE ranged from a Cronbach's alpha of .30 to .84. This measure showed good test–retest reliability over a 3-week period with intra-class correlation coefficients ranging between .64 and .86 for diversity, intensity and enjoyment scores of formal and informal activities. Content validity and construct validity were demonstrated [22].

2.2. Procedures 2.5. Statistical analysis Ethical approval for this study was obtained from the Montreal Children's Hospital Research Ethics Board. This study is part of the “Determinants of Active Involvement in Leisure for Youth (DAILY) living with disability” study on adolescents born extremely preterm or born with a congenital heart defect. All records of infants qualifying for the Neonatal Follow-up Program and born at ≤29 week gestation between 1991 and 2000 were retrieved. A letter informing families about the research project was sent to all potential participants; this was followed by a telephone call from a single nurse from the Neonatal Follow-up Program to establish potential interest in participation. The research coordinator then communicated with these families to explain the purpose and procedures of the study. A three-hour visit was scheduled, either at the pediatric hospital or at the participant's home. Informed signed consent was obtained from all participants ≥ 18 years of age and parents of children b18 years of age. Assent from able adolescents ≥14 years of age was also obtained. All evaluators were blind to the adolescents' medical history, and the results of other testers' evaluations. Travel expenses and snacks were reimbursed. 2.3. Demographic and developmental variables Age, sex, gestational age and birth weight were obtained from hospital records. Demographic and medical variables were obtained through a parent questionnaire. Motor competence, cognitive ability and functional status were also evaluated to further characterize the sample. Participants were formally evaluated by either an occupational

Descriptive statistics were used to describe the level of diversity, intensity, social engagement (with whom), community-based participation (where) and enjoyment in recreational, active-physical, social, skill-based and self-improvement activities. Independent t-tests were used to identify potential differences in participation levels according to sex, age groups (12–15 and 16–20 years), motor competence, and cognitive ability. Participants with a MABC-2 total score b17th percentile were categorized as having a motor problem, and those scoring b80 on the Leiter-R brief IQ as having low cognitive ability. Paired t-tests were used to evaluate the difference in leisure participation between sibling pairs. Statistical significance was set at p ≤ 0.05. All analyses were conducted using the SPSS software [31]. 3. Results 3.1. Demographic and developmental variables The Neonatal Follow-up Program's database identified 336 records of children born extremely preterm who were teenagers (12–20 years) between September 2010 and June 2012. This study included 128 participants. One participant had a gestational age of 29 and 4 days (1195 g), but was included as she was part of the Neonatal Follow-up Program. For information on exclusions and refusals, see Fig. 1. Participants and those who refused to participate (n = 45) did not differ according to sex (Pearson Chi-Square, p = 0.11) or birth weight

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Table 1 Demographic and medical variables of adolescents born extremely preterm.

Neonatal Follow-up Program records (n = 336)

Mean (SD) range

Exclusions: 60 deaths, 3 genetic syndromes

Age (years) Gestational age (weeks) Birth weight (grams)

16.0 (±2.4) 12.0–20.0 26.5 (±1.8) 22.4–29.6 898.6 (±221.4) 490–1445 N (%)

Eligible participants (n = 273) 79 lost to follow-up 21 lived too far Potential participants contacted (n = 173) 45 declined to participate Participants included in this study (n = 128)

Fig. 1. Flow chart for study participation.

(t-test, p = 0.43). Mean gestational age was significantly different between participants and those who refused to participate (26.5 weeks versus 27.1 weeks, p = 0.03), but represents only a 4-day difference. Table 1 shows the participants' demographic and medical morbidities. Half of all participants had no movement difficulty and about half were found to have average to above average intellectual functioning (IQ N 90). Motor competence and cognitive ability were not assessed in one participant as he had severe autism and could not undergo testing. Another participant with cerebral palsy could not undergo motor competence testing. Functional status was adequate to high (standard score N 86) for the majority of participants. Table 2 describes the participants' developmental variables.

Sex Female Male Participants who were twins Medical morbidities Allergies Asthma Currently taking daily medication Attention-deficit/hyperactivity disorder Learning disability Psychiatric condition/depression/anxiety Autism spectrum disorder/developmental delay Cerebral palsy Visual impairment Hearing impairment Speech/language impairment Missing School Regular Regular with tutoring/special resources Special school Unemployed Missing Mother's education Incomplete high school High school diploma CEGEP (Quebec College system) University degree Graduate degree Missing Combined yearly household income 0–$19,999 $20,000–$39,999 $40,000–$59,000 $60,000–$79,000 $80,000+ Missing

67 (52.3) 61 (47.7) 22 (17.2) 7 (5.7) 15 (12.3) 22 (18.0) 22 (18.0) 33 (27.0) 27 (22.1) 7 (5.7) 6 (4.9) 16 (13.1) 6 (4.9) 6 (4.9) 6 (4.9) 80 (62.5) 36 (28.1) 7 (5.5) 2 (1.6) 3 (2.3) 11 (8.6) 37 (28.9) 33 (25.8) 27 (21.1) 13 (10.2) 7 (5.5) 12 (9.4) 18 (14.1) 22 (17.2) 16 (12.5) 44 (34.4) 16 (12.5)

3.2. Leisure participation of adolescents born extremely preterm Out of the 128 semi-structured CAPE interviews, 120 were conducted with the participants, five with parental assistance and three with a parent, as these eight participants had cognitive limitations. ‘Diversity’ scores indicate the number of activities within each of the five leisure activity types that the adolescents were engaged in. Participation in the greatest number of different activities was in the social activity-type (e.g., going to the movies, talking on the phone), followed by recreational activities (e.g., doing crafts, playing computer games), and self-improvement activities (e.g., doing homework, going to the public library). Over 90% of participants reported watching TV or a rented movie (n = 124, 97%), listening to music (n = 122, 95%), talking on the phone (n = 119, 93%) and playing on the computer or video games (n = 115, 90%) during the last four months. Fig. 2 displays the diversity scores of the adolescents born extremely preterm across the five activity types. ‘Intensity’ measures how often a child participated in a given activity. Mean scores for each of the five leisure activity types range between 1 and 7, with higher scores indicating higher frequency. Social activities were engaged in most frequently (mean = 3.52), followed by selfimprovement activities (mean = 2.85) and recreational activities (mean = 2.83). Active-physical activities (e.g., team sports, bicycling) had the next ranked intensity (mean = 1.50), followed by involvement in skill-based activities (e.g., playing a musical instrument, dancing classes) with the lowest ranked frequency (mean = 0.75). Fig. 3 displays the intensity scores of the adolescents born extremely preterm

Table 2 Developmental variables of adolescents born extremely preterm. N (%) Motor competence (MABC-2) No movement difficulty (≥25th percentile) At risk (9–16th percentile) Significant movement difficulty (≤5th percentile) Not testable

63 (49.2) 31 (24.2) 32 (25.0) 2 (1.6)

Cognitive ability (Leiter-R brief IQ) Very high/gifted (130–170) High (120–129) Above average (110–119) Average (90–109) Below average (80–89) Low (70–79) Very low/mild delay (55–69) Moderate delay (40–54) Not testable

1 (0.8) 7 (5.5) 15 (11.7) 46 (35.9) 26 (20.3) 17 (13.3) 12 (9.4) 3 (2.3) 1 (0.8)

Functional status — adaptive behavior (Vineland-II) Adequate to high (86–160) Moderately low (71–85) Mild to severe deficit (20–25 to 70)

88 (68.8) 26 (20.3) 9 (7.0)

MABC-2 — Movement Assessment Battery for Children—Second Edition; Vineland-II — Vineland Adaptive Behavior Scales, Second Edition.

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Fig. 2. Mean diversity scores across activity types.

across the five activity types. Activities engaged in most frequently within each activity type are presented in Table 3. ‘With whom’ scores describe with whom the individual performed the activity most often and range between 1 (alone) and 5 (with others). Mean ‘with whom’ scores were highest for social activities (mean = 3.10) followed by active-physical activities (mean = 3.07), indicating that participants are more socially engaged with individuals other than family in these two types of activities compared to recreational, skill-based and self-improvement activities. Activities commonly performed with a narrow social circle (scores of 1 and 2) include mostly activities within the recreational and self-improvement types. ‘Where’ scores indicate the location of where each activity is done most often. These scores vary between 1 (at home) and 6 (beyond

your community). Mean ‘where’ scores were highest for active-physical activities (mean = 3.51) and social activities (mean = 3.26) denoting more community-based participation in these types of activities. The lowest ‘where’ scores were obtained for recreational activities (mean = 1.91) denoting that participation is much closer to home, and less community-based. Twenty out of 55 activities were most commonly performed at home, predominantly recreational, selfimprovement and social activities. ‘Enjoyment’ scores ranged from 1 (not at all) to 5 (love it), and are calculated only for the activities the participant engaged in at least once in the last four months. Mean enjoyment scores were highest for social activities (mean = 4.19), followed by recreational activities (mean = 3.88) and active-physical activities (mean = 3.83). Participants

Fig. 3. Mean intensity scores across activity types.

N. Dahan-Oliel et al. / Early Human Development 90 (2014) 307–314 Table 3 Three activities performed most frequently within the five activity types. Mean intensity score (range: 1–7)

Number of participants engaged in activity

Recreational Playing with pets Watching TV or a rented movie Playing computer or video games

6.05 5.86 5.69

77 124 115

Active-physical Doing team sports Doing individual physical activities Playing games

5.36 5.04 4.85

59 71 81

Social Listening to music Talking on the phone Hanging out

6.69 5.91 5.71

122 119 112

Skill-based Community organizations Playing a musical instrument Dancing

4.81 4.74 4.37

21 54 67

Self-improvement Doing homework Doing a chore Reading

6.31 6.04 5.94

108 106 105

attributed the lowest enjoyment scores to self-improvement activities (mean = 3.24). Individual activities with highest enjoyment scores included mostly skill-based, social and active-physical types of activities, indicating that participants particularly enjoy these activities, even though they may not engage in those activities very frequently. The most enjoyed leisure activities are presented in Table 4. 3.3. Participation differences according to sex, age, motor competence and cognitive ability of adolescents born extremely preterm Sex differences (p b 0.05) were found in the number and in the frequency of active-physical (boys N girls), social (girls N boys) and selfimprovement (girls N boys) activities performed among adolescents born extremely preterm. Younger adolescents (12–15 years) engaged Table 4 Three activities most enjoyed within the five activity types. Mean enjoyment score (range: 1–5)

Number of participants engaged in activity

4.20 4.12 4.00

115 77 26

4.43 4.34 4.17a

30 59 60

4.17a

58

Social Going on a full-day outing Listening to music Going to the movies

4.48 4.46 4.40

67 122 102

Skill-based Horseback riding Taking art lessons Community organizations

4.80 4.67 4.19

5 6 21

Self-improvement Reading Writing a story Shopping

4.19 4.12 3.88

105 56 112

Recreational Playing computer or video games Playing with pets Doing pretend or imaginary play Active-physical Doing snow sports Doing team sports Bicycling, in-line skating, or skateboarding Playing non-team sports

a

Same score, so both activities are presented.

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in less social activities (p = 0.01) , and less frequently (p = 0.002) than their older counterparts (16–20years). Adolescents with a motor problem had significantly lower diversity (p b 0.001) and intensity (p = 0.005) scores for active-physical activities and lower diversity in social activities (p = 0.027). Using the 5th percentile instead of the 17th percentile as the cut-off for motor problems on the MABC2 yielded similar results; however, lower intensity scores for social activities (p = 0.019) were found for the group with significant motor problems (≤ 5th percentile) compared to those with no motor problem (≥ 17th percentile). Adolescents with low cognitive ability had lower diversity (p = 0.029) and intensity (p = 0.027) scores for active-physical activities, lower diversity in social activities (p = 0.023), and lower diversity and intensity scores in selfimprovement activities (p = 0.002). Table 5 shows the differences in participation intensity scores. 3.4. Participation differences among sibling pairs Leisure scores were compared across 22 participant–sibling pairs. The participant group (extremely preterm) included 10 females and 12 males, and the sibling group (term-born) included 13 females and 9 males, from which 15 were matched for sex. The average age at assessment for participants was 16.2 years (range: 12.4–19.7 years) and the mean age for siblings was 15.8 years (range: 11.2–20.8 years). The mean age difference between sibling pairs was 2.1 years. These two groups were not statistically different according to age (paired t-test, p = 0.37) and sex (Pearson Chi-Square, p = 0.07). Adolescents born preterm participated in a significantly lower number of different recreational activities (diversity) compared to their term-born siblings (mean difference = 1.27, p = 0.013). 4. Discussion Our study is the first to measure the level of engagement in a variety of leisure activities in adolescents born extremely prematurely using a standardized tool. Participants reported high enjoyment scores in social and active-physical types of activities, and identified several skill-based activities as having the highest enjoyment scores. Although the intensity of participation in social activities was high, participants reported being engaged less often in active-physical and skill-based activities. This mismatch between enjoyment and intensity of participation highlights the need to promote participation in active-physical and skill-based activities, and warrants further investigation as to the reasons why adolescents don't participate more in these types of activities which they enjoy more. It is worth noting that even though 27% of participants had a learning disability and 12% were found to have very low/mild delay to moderate delay in cognitive ability (IQ b 70), the vast majority of participants (94%) completed the CAPE without any assistance, demonstrating that adolescents born extremely preterm can provide clinically important self-reported information. There are currently no data on leisure participation using the CAPE on typically developing North American adolescents. The CAPE has been used in Canadian adolescents with physical disabilities [23] and with cerebral palsy [25], as well as in typically developing Australian adolescents [24]. Comparing leisure participation across our study and these three studies (Table 6), our sample of adolescents born at ≤ 29 week gestation had diversity and intensity levels similar to typically developing Australian adolescents for recreational, social and self-improvement types of activities. The active-physical diversity and intensity scores of our sample are at the lower end of typically developing adolescents, but higher than those with physical disabilities and those with cerebral palsy. Our sample had significantly lower participation levels for the skill-based types of activities than the typically developing adolescents, but comparable to adolescents with cerebral palsy.

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Table 5 Differences in leisure participation intensity among adolescents born extremely preterm. Participation scores, mean (SD) 95% CI Recreational

Active-physical

Social

Skill-based

Self-improvement

2.89 (1.02) 2.63–3.15 2.77 (1.03) 2.53–3.03

1.80 (1.02) 1.54–2.06⁎⁎⁎ 1.21 (0.76) 1.03–1.40⁎⁎⁎

3.31 (1.14) 3.02–3.61⁎ 3.70 (0.94) 3.47–3.93⁎

0.67 (0.55) 0.53–0.81 0.82 (0.62) 0.67–0.97

2.61 (1.11) 2.33–2.9⁎⁎ 3.06 (0.90) 2.84–3.28⁎⁎

2.85 (1.08) 2.59–3.12 2.81 (0.97) 2.56–3.05

1.40 (0.92) 1.18–1.63 1.59 (0.95) 1.35–1.83

3.24 (1.11) 2.97–3.51⁎⁎ 3.81 (0.92) 3.58–4.04⁎⁎

0.74 (0.63) 0.59–0.90 0.75 (0.55) 0.61–0.89

2.93 (1.01) 2.68–3.17 2.76 (1.04) 2.50–3.03

Motor competence b17th percentile on MABC-2 (n = 63) ≥17th percentile on MABC-2 (n = 63)

2.82 (1.11)(2.63-3.01) 2.89 (0.92)(2.73-3.05)

1.29 (0.94) (1.13-1.45)⁎⁎ 1.75 (0.85)(1.60-1.90)⁎⁎

3.39 (1.04)(3.21-3.57) 3.70 (1.0)(3.53-3.87)

0.76 (0.61)(0.65-0.87) 0.75 (0.57)(0.65-0.85)

2.83 (1.05)(2.65-3.01) 2.94 (0.91)(2.78-3.10)

Cognitive ability b80 on Leiter-R brief IQ (n = 32) ≥80 on Leiter-R brief IQ (n = 95)

2.76 (1.20)(2.55-2.97) 2.86 (0.96)(2.69-3.03)

1.19 (0.77)(1.06-1.32)⁎ 1.61 (0.96)(1.44-1.78)⁎

3.19 (1.28)(2.97-3.41) 3.64 (0.95)(3.48-3.80)

0.84 (0.57)(0.74-0.94) 0.72 (0.59)(0.61-0.82)

2.30 (1.18)(2.10-2.50)⁎⁎ 3.06 (0.87)(2.91-3.21)⁎⁎

Sex Male (n = 61) Female (n = 67)

Age 12–15 years (n = 66) 16–20 years (n = 62)

⁎ p b 0.05. ⁎⁎ p ≤ 0.01. ⁎⁎⁎ p b 0.001.

North American guidelines for physical activity in children and adolescents are at least 60 min of moderate-intensity aerobic physical activity on a daily basis to achieve health benefits [32,33]. Alarmingly, 45 participants (35%) in our study reported engaging in 3 or less of the 13 active-physical activities over the past 4 months and 94 participants (73%) reported engaging in such activities twice or less in the last 4 months on average (mean intensity score of 2 and below). The lack of engagement in active-physical activities suggests that adolescents born at ≤29 week gestation may not meet the established national guidelines for physical activity. Although participants who engaged in active-physical activities at least once in the past four months indicated that they had a high level of enjoyment in those activities, the limited variety of and infrequent engagement in active-physical types of activities are of concern. The unequivocal health benefits of physical activity in youth [34–40] may mediate the effects of prematurity and improve outcomes later in life, especially as children born prematurely may have cardiorespiratory limitations [41] and deficiencies in aerobic and anaerobic performance and in motor skills [42]. Another area of concern is the very low levels of participation diversity and intensity of skill-based participation in

adolescents born extremely preterm. Efforts to promote engagement in skill-based activities need to be strengthened, as involvement in these activities has been associated with better physical and emotional health, and with higher educational and occupational attainment later in life [34–40]. The developmental challenges experienced by adolescents born preterm may pose an additional risk for successful transition to independent living, higher education and occupational attainment [43,44], further indicating the importance of promoting participation in skill-building activities in this population. The sex and age differences found in our sample are comparable to those found in previous studies on leisure participation in typically developing adolescents [45], and in adolescents with disabilities [25] with boys being more involved in active-physical types of activities, girls being more involved in social and self-improvement activities, and older adolescents being more engaged in social activities. Having a motor difficulty or low cognitive ability limited participation among adolescents born extremely preterm, similar to the literature on adolescents with cerebral palsy [25], indicating that efforts must be made to increase participation in active-physical and social types of activities in those most at risk for low participation. Taken together, these findings

Table 6 Diversity and intensity scores using the Children's Assessment of Participation and Enjoyment in different adolescent populations. Mean [SD] (95% CI)* 128 Canadians born at ≤ 29 week gestationa

41 typically developing Australiansb

175 Canadians with cerebral palsyc

126 Canadians with physical disabilitiesd

Recreational Diversity 6.75 [1.94] (6.4–7.1) Intensity 2.83 [1.02] (2.7–3.0)

6.9 (6.1–7.7) 2.8 (2.5–3.0)

6.16 [2.31] (5.75-6.56) 2.65 [1.01] (2.48-2.82)

8.29 [2.07] (7.93-8.65) 3.50 [0.96] (3.33-3.67)

Active-physical Diversity 4.26 [2.31] (3.9–4.7) Intensity 1.50 [0.94] (1.3–1.7)

5.1 (4.3–5.8) 1.8 (1.5–2.1)

2.90 [2.07] (2.54-3.26) 0.99 [0.78] (0.85-1.13)

3.07 [1.68] (2.78-3.36) 1.61 [1.00] (1.44-1.78)

Social Diversity Intensity

7.66 [1.93] (7.3–8.0) 3.52 [1.06] (3.3–3.7)

7.9 (7.4–8.4) 3.3 (3.1–3.6)

6.22 [2.18] (5.84-6.60) 2.58 [1.03] (2.40-2.76)

7.00 [1.65] (6.71-7.29) 3.35 [0.99] (3.18-3.52)

Skill-based Diversity 1.69 [1.25] (1.5–1.9) Intensity 0.75 [0.59] (0.6–0.9)

3.5 (2.8–4.3) 1.6 (1.2–2.0)

1.49 [1.12] (1.30-1.68) 0.66 [0.53] (0.57-0.75)

1.98 [1.46] (1.73-2.23) 0.98 [0.81] (0.84-1.12)

Self-improvement Diversity 5.64 [1.88] (5.3–6.0) Intensity 2.85 [1.02] (2.7–3.0)

5.1 (4.5–5.7) 2.6 (2.3–2.9)

3.94 [2.26] (3.55-4.33) 1.94 [1.18] (1.74-2.14)

6.36 [1.81] (6.05-6.67) 3.07 [0.97] (2.90-3.24)

*Data as provided in: aCurrent study by Dahan-Oliel et al., 2013; bMcMullan, Chin, Froude, & Imms, 2012; cShikako-Thomas et al., 2013; and dLaw et al., 2006.

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indicate that activities should be adapted to sex and individual skill level in order to attract and retain participation. Sibling comparisons indicate that only diversity in recreational activities was lower in adolescents born preterm compared to their term-born siblings. It is conceivable that the small sample size precluded detection of statistically significant differences. Alternatively, individuals within the same family might have similar participation levels, regardless of birth history and functioning levels. Social support from parents and friends has been found to significantly affect adolescents' engagement in physical activity [46]. These findings may indicate the important role of the family as a determinant of leisure participation, thus interventions aiming to enhance leisure participation in adolescents might be more successful when family members and peers are also targeted. While every effort was made to contact all individuals from hospital records, loss to follow-up over this long period of time was inevitable. Most demographic and medical variables were based on parent-report, and were not measured objectively by expert evaluators. The sibling comparative group was small with potential for bias but provided interesting insights into the family environment as a determinant of leisure participation; nonetheless this warrants further investigation. Even though many adolescents born at ≤ 29 week gestation experience persisting physical, mental and cognitive impairments, follow-up typically extends only to early childhood. There is a need for provision of periodic services at key transition points in development (childhood– adolescence, adolescence–adulthood) because children and adolescents will be confronted with new life roles and may experience new challenges. Encouragement should target a variety of leisure activities that each child enjoys and can master [12]. Pediatric health care professionals can address obstacles that adolescents face in their ability to fully participate in the leisure activities of their choosing [47]. This may be done by ensuring that the adolescent is able to meet the demands of the task and experiences mastery and a positive selfperception, and does not overly experience failure. Service users (adolescents and their families) and service providers (clinicians, policy makers) must be knowledgeable of existing services and the specific needs of this population to promote leisure participation in the home, school and community. 5. Conclusion Overall, adolescents born at ≤ 29 week gestation participate in a range of leisure activities, however, participation in active-physical and skill-based activities is not very frequent and less than recommended national levels. Engagement in active-physical and skill-based activities needs to be promoted in boys, and especially in girls with a history of prematurity. Activities should be adapted to sex and individual skill level in order to attract and retain adolescents' participation. Pediatric health care professionals should include families when promoting participation in adolescents born preterm. Funding source All phases of this study were supported by a Canadian Institutes of Health Research grant, #MOP-102720. Noémi Dahan-Oliel received doctoral fellowships from the Fonds de la Recherche du QuébecSanté (2010–2013) and the Montreal Hospital Research InstituteFoundation of Stars (2009–2010). This work was supported by infrastructure from the Montreal Children's Hospital-Research Institute and Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, both of which are funded by the Fonds de la Recherche du Québec-Santé. Financial disclosure The authors have no financial relationships relevant to this article to disclose.

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