http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(10): 825–833 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.944625
REVIEW
Community participation interventions for children and adolescents with a neurodevelopmental intellectual disability: a systematic review Jaimi Andrews1, Marita Falkmer2,3, and Sonya Girdler1,2
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1
School of Exercise and Health Sciences, Edith Cowan University, Perth, Western Australia, Australia, 2School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia, and 3School of Education and Communication, CHILD Programme, Institute of Disability Research, Jo¨nko¨ping University, Jo¨nko¨ping, Sweden Abstract
Keywords
Purpose: The purpose of this review was to examine the effectiveness of community integration interventions in facilitating the community participation, self-esteem, and quality of life of children and adolescent’s with a neurodevelopmental intellectual disability. Methods: Electronic searches of five databases and manual searches of reference lists were conducted. Community integration interventions which targeted friendship development, recreation participation, quality of life, and self-esteem were included. Results: Thirteen studies were included in this review. A variety of study designs and interventions were used. All but one study reported significantly increased friendships, five studies reported increased recreation participation and one study reported increased quality of life and self-esteem. Methodological quality of the studies ranged from adequate to strong. Conclusions: Community integration interventions appear to be effective in enhancing the inclusion of children and adolescents with a neurodevelopmental intellectual disability. In particular, findings from this review highlight that there are potentially many ways to continue to improve the effectiveness of community participation interventions for this group. These include the need for the development of programmes which facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programmes, and accommodate individual impairments and needs through grading and adaptive leisure activities. Future interventions should use the International Classification of Functioning, Disability and Health as a measurement framework and consider the role of factors such as impairment, personal and environmental factors in facilitating community participation.
Adolescence, children, community participation and quality of life, intellectual disability, neurodevelopmental disorder History Received 7 October 2013 Revised 3 July 2014 Accepted 10 July 2014 Published online 29 July 2014
ä Implications for Rehabilitation
Community participation interventions appear to be effective in enhancing the inclusion of children and adolescents with neurodevelopmental intellectual disability. Future community integration interventions should facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programme, and accommodate individual impairments and needs through grading and adaptive leisure activities. The International Classification of Functioning, Disability and Health should be used as a measurement framework and consider the role of factors such as impairment, personal and environmental factors in facilitating community participation.
Introduction The prevalence of neurodevelopmental intellectual disability in Western Australia is 14.3 per 1000 people [1]. Neurodevelopmental disability refers to a condition or disorder which begins in the early stages of development (conception, birth, infancy, and childhood) [2]. It can result in mild to profound
Address for correspondence: Dr. Sonya Girdler, PhD, School of Occupational Therapy and Social Work, Curtin University, Perth 6102, Western Australia, Australia. Tel: +61 08 9266 3630. E-mail: [email protected]
intellectual disability, behavioural problems, impaired speech, social withdrawal, and poor gross motor functioning [3]. Causes of neurodevelopmental disability include Rett syndrome, autism, cerebral palsy, Down syndrome, Asperger’s syndrome, and Fragile X syndrome. These conditions often have a profound influence on daily life [2]. A clear example of this includes limitations in the ability to participate in community activities such as recreation and friendships [2]. For children and adolescents with an intellectual disability, community participation can enhance physical and mental wellbeing, promote social inclusion, improve independence, and increase self-worth, life satisfaction and quality of life [4–7].
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Although the importance of community participation has been identified, current research suggests that people living with an intellectual disability participate in fewer recreational activities than their peers [8]. Interventions and programmes targeted at community participation play a key role in facilitating the inclusion of people with a disability. However to date, few community participation interventions have been developed for children and adolescents with an intellectual disability. Instead, research has focus on the child’s health needs such as medical care [3]. However, interventions and programmes which target recreational participation and friendships are reported to be more valued by the families of children with an intellectual disability than interventions focused on health care [3]. Among children with disability, targeted community participation programmes have been shown to increase sports participation and social interaction between children with and without a disability, as well as improve academic performance and functional skills [9,10]. In addition, interventions set in the community provide typically developing children with an opportunity to gain an understanding of disability [11,12]. When designing a community participation intervention for children and adolescents with a neurodevelopmental intellectual disability, several factors should be considered. The International Classification of Functioning, Disability and Health (ICF) is a holistic, theoretical framework which is often used to describe the relationship between impairment, activity and participation, and personal and environmental factors [13]. Impairment factors which may impede community participation interventions include cognitive and language ability [14] and severity of intellectual disability [15,16]. Current literature suggests that young people with a more severe impairment are less likely to participate in community activities [17,18]. Clinical symptoms also have the ability to impact the frequency and intensity at which a child can participate in recreational activities and friendships [19,20]. Personal factors which may impact on engagement in programmes targeting community participation include age and gender [14]. Depending on the age of the child or adolescent, activity preference and availability of leisure activities may vary. It has been suggested that as a child with a disability ages, activity preferences change and activities become less available [17]. Gender may also influence participation as research suggests that males prefer more physical activities, whilst girls prefer sedentary activities [21]. For children and adolescents with an intellectual disability, disability results from the interaction between their intellectual impairment and the environment, with environmental factors acting as either a barrier or facilitator to participation [13]. Environmental factors which may influence participation in community interventions for this group include accessibility, family socio-demographics, and available community supports [14,15,22]. Family financial resources can impact on a young person’s ability to attend programmes due to the cost of attendance fees or specialised equipment [15]. The needs of siblings or prior commitments may also need to be considered [23]. Negative and discriminatory attitudes of the community can also restrict participation in community programmes [24]. Therefore, the objective of this systematic review was to review the effectiveness of community integration interventions in facilitating the community participation, self-esteem and quality of life for children and adolescent’s with a neurodevelopmental intellectual disability. Community integration interventions for the purposes of this review were those targeting community, civic and social life and peer friendships [13].
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Methods Search strategy A search of the COCHRANE database failed to identify a previous review addressing the objective of this review. Four electronic databases were then searched for this review. Each database was searched from its earliest electronic record (Cumulative Index of Nursing and Allied Health Literature – CINAHL from 1982, MEDLINE from 1966, PsycINFO from 1685, and SPORTDiscus from 1381) until April 2012. The main search terms were grouped into four concepts. The first concept had the following keywords with intervention and programme added to the end: communitybased, friendship, social skills, group, and peer support. The second concept included Rett syndrome, Down syndrome, autis* (autism, autism spectrum disorder), cerebral palsy, neurodevelopmental disability, intellectual disability, and mental retardation. The third concept included outcome key words including community participation, activity participation, friend* (friendship, friends), leisure, recreation, social interaction, interpersonal, self-esteem, and quality of life. The fourth concept included children, adolescent, teenager, and young. With assistance from the librarian, all terms were adjusted, exploded and truncated in order to match the database being searched. Forward citation searching using an electronic database, Web of Science, was completed on included articles. Manual searches were conducted on all reference lists of retrieved studies; however, conference proceedings and grey literature were not searched. Inclusion and exclusion criteria A priori criteria for inclusion of studies were applied initially to titles and abstracts and then full-text articles if the abstract did not provide sufficient information. Studies were included if the community integration intervention was delivered in a group and were aimed at targeting community participation, self-esteem, and/or quality of life. Interventions were also not limited to being delivered by a specific health profession or discipline. Participants in the studies were restricted to children and adolescents aged 5–18 years with a neurodevelopmental disorder resulting in intellectual disability such as Rett syndrome, Down syndrome, cerebral palsy, and autism (for the remainder of this review, neurodevelopmental intellectual disability will be referred to as intellectual disability). Studies were excluded if the interventions were delivered individually, during school hours (except during recess and lunch) or were primarily targeted at parents. Participants which had an acquired neurodevelopmental disability or physical disability only were also excluded for this review. Quantitative, qualitative, and mixed-method studies were included in this review, and articles were limited to those published in English. Assessment of methodological quality Two reviewers independently assessed the quality of each study using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers developed by Kmet et al. [25]. This quality assessment form contains a 14-item quantitative and a 10item qualitative checklist. Guidelines and instructions have been provided to assist reviewers in undertaking quality assessment of research and calculating a summative quality score. The quality of assessed research was described as strong (score of 480%), good (70–80%), adequate (50–70%), or limited (550%) [26]. Any discrepancies between reviewers were resolved through discussion. Data extraction Data were independently extracted from selected studies using the following headings: study objective, study design, participant and
Community participation interventions
DOI: 10.3109/09638288.2014.944625
sample size, intervention used, data collection method, outcome measures, results, discussion, and limitations. Once data were extracted, the level of evidence was determined according to the criteria described in the National Health and Medical Research Council guidelines [27].
Results
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Search strategy and selection criteria Electronic searches located a total of 396 articles using the key terms (see Figure 1). The titles and abstracts were reviewed with 325 articles not meeting the inclusion criteria and 16 articles were unable to be obtained. The full-text of the remaining 55 articles was reviewed and nine were found to meet inclusion criteria. Reference lists and citations from web of science were manually searched resulting in the further inclusion of four articles. Therefore, 13 studies were included in this systematic review. An overview of the study designs of the 13 articles included in this review are presented in Table 1: four were randomised control trial’s (RCT) [6,28–30], one was a true experimental design (oneway repeated measures) [31], seven were quasi-experimental designs (time series, multiple baseline, pretest–post-test) [11,12,23,32–35], and one was a mixed methods study [22]. Within the 13 articles, a variety of interventions were reported. Three were recreation programmes [12,23,31], two were friendship clubs/groups [11,33], two were community art programmes [22,35], two were social skills groups [32,34], two were friendship training groups [6,29], one was a Peer-mediated group [30] and one was a community skills group [28]. Overall, 468 young people participated in these interventions, 277 with an intellectual disability including 214 with an autism spectrum disorder (autism, Asperger’s syndrome) [6,11,12,23,28–30,32–35], one child with Down syndrome [22], 62 with a non-specified intellectual disability [28,31,33], and 191 were typically developing peers [12,22,30–33,35] (see Table 1). All but one study [28], reported on the impact of interventions on outcomes relating to friendships, five reported on recreational and activity participation [12,22,23,31,35], five reported on social skills [6,30,32–34], and one reported on quality of life and self-esteem/confidence [22].
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Quality of studies The methodological quality of selected studies is presented in Table 1. Overall, methodological quality of the 13 included studies ranged from adequate to strong. There appeared to be no relationship between the type of intervention protocol and the quality of the article. For most articles, the study design, objective, method of participant selection, participant/comparison characteristics, and outcome measures were clearly described. Random allocation of participants and blinding of investigators varied, depending on the study design. Due to the nature of the interventions, it was impossible to blind participants. Very few articles reported effect sizes, confounding variables, and variance. Other shortcomings included poorly reported sample sizes, with readers left to make their own conclusions. Generally, the analytical methods were justified appropriately and the results and conclusion sections were reported in detail. Interventions The intention of this review was to examine the effectiveness of interventions targeting community participation of young people with a neurodevelopmental intellectual disability, however, the majority of the interventions identified targeted friendships rather than recreational or leisure participation. Even though it has been reported that both friendship and leisure participation are important in promoting quality of life and health and well-being for children with an intellectual disability [36], only four of the 13 studies incorporated both friendship facilitation and recreational participation into their programmes [11,12,23,31]. Of the 13 included articles, seven were specifically targeted at facilitating friendships [6,11,29,30,32–34]. The aim of these interventions was to develop friendships, teach appropriate social skills for friendship development (conversation and initiation skills), and promote inclusion in peer groups. Three studies [12,23,31] undertook a recreational programme aimed at promoting participation in well-known sports and preferred activities, while also encouraging friendship development. Finally, two studies were described as community art programmes [22,35]. These aimed to enhance basic art skills, encourage
Titles and abstracts identified screened n = 396
Figure 1. Flow chart on different phases of the systematic review.
Excluded n = 325 Unable to obtain/ further information required to make assessment n = 16 Full copies retrieved and assessed for eligibility n = 55 Excluded n = 46 Age n = 15 No intervention n = 3 Outcomes not relevant n = 8 Individual/paired interventions n = 11 ABI or physical disability n = 4 Foreign language n = 3 Systematic review n = 2
Studies obtained from Web of Science n = 2 Studies identified from reference list n = 2
Publications meeting inclusion criteria and included in review n = 13
Adolescent’s with autism (n ¼ 1) & intellectual disability (n ¼ 1)
Social interaction/friendships Observations (assessor) Qualitative - satisfaction,
–
Social network group Aim: facilitate social interaction and inclusion Weekly sessions
Multiple baseline (n ¼ 11)
Haring 1992 USA
Quality of life PedsQL (parent) Friendships, Self-confidence, Engagement Observations Parent report
–
Performing arts group Aim: participation in dance, voice, acting 14 weekly sessions Community performing arts centre
Friendships " friendships (quality, quantity, interactions) " peer interaction outside of
Friendships " no. Friendships and social network (p ¼ 0.02) Reciprocal friendships were non-significant # isolation on the playground Social skills " social skills (p ¼ 0.01) " QOL and self-confidence " interaction and engagement with peers " motivation for other community programmes
Friendships " hosted get togethers, better quality friendships (p50.05) Social skills " knowledge of social skills compared to delayed intervention group (p50.05)
Friendships " social participation and appropriate conversation (p50. 001) Social skills " social skills and competence (turn-taking, personal space, body language) (p50.01)
Friendships Significant change (p40.05) " in play dates (number, behaviour), child’s self-control and assertiveness Significant change (p50.025) # loneliness, " popularity
Results
Methodological quality
Adequate quality (score ¼ 13/20). Poorly described study. Data collection and analysis not clearly described. No verification procedures to establish credibility or reflexivity of account. Adequate quality (score ¼ 15/22). Sample size not identified. Confounding variables, variance and analytical methods partially
Good quality (score ¼ 21/28). Blinding of participants not reported, sample size and confounding variables partially reported. Investigators blinded, random allocation, and results/ conclusion sufficiently reported.
Good quality (score ¼ 20/28). Investigators and participants not blinded, variance not reported, sample size and confounding variables partially reported. Random allocation, and results/conclusion sufficiently reported.
Good quality (score ¼ 20/26). Sample size and confounding variables partially reported. Investigators blinded, no random allocation and variance not reported. Random allocation, and results/conclusion sufficiently reported
Strong quality (score ¼ 24/28) Investigators and participants not blinded. Large sample size, analytical and variance described, random allocation, study design evident, and results/conclusion sufficiently reported
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Girl with Down syndrome (11 y, mild cognitive impairment) Children without Down syndrome (8–14 y)
Case report (n ¼ 1)
Becker 2010 USA
No intervention Children with high functioning ASD (n ¼ 15)
Peer-mediated group (n ¼ 60) Aim: develop friendships 2 sessions/wk for 6 wk Recess and lunch at school
Children with high functioning ASD (n ¼ 30) Children without ASD (n ¼ 45) 6–11 y
RCT (n ¼ 75)
Kasari 2012 USA
Delayed intervention group (n ¼ 16)
Teenagers with ASD 13–17 y
RCT (n ¼ 33)
Laugeson 2008 USA
Friendships The loneliness scale (child) Piers self-concept scale (child) Quality of play questionnaire (parent) The Pupil Evaluation Inventory (teacher) Social skills Social Skills Rating System (parent) Friendships Informal interviews (parent) Social skills Spence social skills and social competence with peers questionnaires (parent/child) The three things – key social skills (parent) Friendship Friendship quality scale The quality of play questionnaire (parent/teen) Social skills Social skills training scale (parent/teacher) Test of adolescent social skills knowledge (teen) Friendships Social network survey (child) Playground observations (assessor) Self, peer and teacher reports Social skills Teachers report
Outcome measures
Parent assisted social skills group (n ¼ 17) Aim: develop friendships 12 weekly sessions 7 per group Classroom (after hours) Children and parents (separated)
–
Social skills group Aim: friendship skills 12–16 weekly sessions 8 per group 6 groups: 3 6–11 yo; 3 12– 16 yo Classroom (afterhours) & community outings
Children with high functioning ASD 6–16 y
Quasi-experimental time series (n ¼ 46)
Mackay 2007 UK
Control group Delayed intervention group (n ¼ 33)
Intervention group Children’s friendship training group (n ¼ 35) Aim: develop friendships 12 weekly sessions Classroom (after-hours) Children and parents (separated)
RCT (n ¼ 68)
Frankel 2010 USA
Participants
Children with high functioning ASD and their parents 7–11 y
Design/number of participants
Author, year, country
Table 1. Findings of the included studies.
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Children with moderate intellectual disability (8 autism and 32 non-specified) 9–11 yo
One-way repeated measures (n ¼ 67)
RCT (n ¼ 40)
Two-group pretest–post-test (n ¼ not specified)
Siperstein 2009 USA
Drysdale 2008 Ireland
Fennick 2003 USA
Children with mild to severe autism (n ¼ 5) Children without autism 6–13 yo
Children with mild intellectual disability (n ¼ 29) Children without intellectual disability (n ¼ 38) 8–13yo
One-group pretest– post-test (n ¼ 11)
Barry 2003 USA
Adolescent’s without autism & intellectual disability (n ¼ 9) 12–13 y Children with high functioning autism (n ¼ 4) Children without autism (n ¼ 7) (only used for assessment period) 6–9 y
Community skills group Aim: participation in games, learning shopping and telephone skills 2 sessions/wk for 8 wk 6 per group 2 groups: 1 - classroom and community training (n ¼ 12); 2 - classroom training (n ¼ 12) Classroom (after hours) and community outings Recreation group Aim: participation in swimming, gymnastics, develop friendships 2 groups: 1 - swimming (n ¼ 3); 2 - gymnastics (n ¼ 2) Leisure centre
Summer recreational programme Aim: participation in swimming, basketball, soccer, free play, arts & crafts 5 sessions/wk for 4 wk 12 per group Leisure centre
Social skills group Aim: Social skills and friendships 8 weekly sessions Out-patient university psychology clinic (community)
2 Groups: 1 (n ¼ 5), 2 (n ¼ 6) Recess, lunch and classroom (after-hours)
Friendships Peer hang-out-with and friendship inventory (child) Recreational participation Adapted sports skills assessment (investigators)
Community skills (shopping and telephone) Observations Task analysis
Recreational participation/ Friendships Observations ! participation, attendance and enjoyment Parent survey
No intervention ! normal classroom activities (n ¼ 16)
–
Social skills SSRS- social skills competence (parent) Social skills observations – play (investigators) Social skills interview – was the child using the skills in community setting (parent) Friendship/Social Support Social support scale (child) Loneliness scale (child)
–
–
peer interaction/relationship (child and peers)
Recreational participation Positive feedback on programmes Friendships No improvement in friendships " participation in group community programmes
Social Skills Significant " Greeting skills (p50.03) Trend for " conversation skills (p50.10) " Greeting skills outside clinic Friendships/Social Support Significant " in perceived social support from peers (p50.05), play (p50.03) " meaningful peer relationships between children with and without autism # perceived loneliness Friendships Children with ID made new friends and more accepted by peers Recreational participation Significant " in swimming and soccer skills for children with ID (p50.001) Strong relationship between sports skills and building relationships (p50.01) Community skills (shopping and telephone) Intervention group " understanding of required shopping skills (p ¼ 0.007) No change in handling of money, making telephone call No difference between classroom and community based training
school and continued peer network Social skills " knowledge of social skills
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Community participation interventions (continued )
Adequate quality (score ¼ 11/20). Random allocation and blinding N/A. Analytical methods, results and conclusion partially described. Small sample size and confounding variables not considered
Good quality (score ¼ 22/28) Participants not blinded. Confounding variables considered, small sample size analytical methods described, random allocation, blinded investigators, study design evident, and results/conclusion sufficiently reported.
Good quality (score ¼ 17/22) Blinding and random allocation N/A. Study design, confounding variable and variance not clearly identified. Large sample size and analytical methods described.
Good quality (score ¼ 18/24) Small sample size, confounding variables not considered, and study design not clearly identified. Investigators blinded, results/ conclusion sufficiently reported, and analytical methods justified.
described. Blinding and random allocation N/A.
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Multiple baseline (n ¼ 32)
One-group pretest– post-test (n ¼ 69)
Two-groups pretest–post-test (n ¼ 10)
Schleien 1995 USA
Schleien 1987 USA
Carter 2004 USA –
Friendships, enjoyment, activity participation Observations Verbal and written feedback from children and parents
Friendships Attitude acceptance scale (peers) Play/participation Behavioural observations – in play and with peers (children and peers)
–
Summer recreation programme Aim: participation in badminton, basketball, volleyball, gymnastics, swimming, tennis, squash, free time 5 sessions/wk for 3 wk 3 age groups: 7–8 yo; 9–10 yo; 11–12 yo University campus (community) Friendship club Aim: develop friendships and skills. 6 weekly sessions 2 age groups: 8–10 y (n ¼ 6); 11–15 yo (n ¼ 4) Classroom (after hours) and community
Children with severe autism (n ¼ 2) Children without autism (n ¼ 67) 7–12yo
Children with Asperger’s syndrome 8–15 yo
Friendships Observations – positive interactions, appropriate and inappropriate behaviour
–
Outcome measures
Control group
Community art programme Aim: develop friendships, learn art skills 7 monthly sessions Community museum
Intervention group
Children with mild to severe autism (n ¼ 7) Children without autism (n ¼ 25) 7–11 yo
Participants
N.B. – Scoring for methodological quality ¼ total sum (‘‘yes’’ 2 + ‘‘partial’’ 2)/total possible score (28 – number of N/A 2).
a
Design/number of participants
Author, year, country
Table 1. Continued
Results
Friendships Most children had " friendships Activity participation " activity participation and enjoyment
Friendships Significant " in positive interactions initiated by children without autism towards children with autism: younger group (p ¼ 0.012); older group (p ¼ 0.007) No change in initiation or conversation by children with autism Play/participation Appropriate play significantly " in recreational activities " depending of participants preferred activity Friendships " in appropriate peer interaction
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Methodological quality
Adequate quality (score ¼ 13/22). Random allocations and blinding N/A. Study design, outcome measures, analytical methods and results not sufficiently described. Variance and confounding variables not described
Strong quality (score ¼ 18/22) Random allocation and blinding N/A. Sample size, variance and confounding variables not mentioned. Analytical methods and results/conclusions sufficiently described.
Strong quality (score ¼ 18/22) Random allocation and blinding N/A. Sample size is large. Confounding variables and variance partially described
a
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friendship development, and promote participation in art activities such as dancing, singing, acting, and arts and crafts. Intervention settings included two held in a school classroom (after-hours) [6,29], and two at school during recess and lunch breaks [30,33]. Six were conducted in a community setting (leisure centre, museum, performing arts centre, university campus) [12,22,23,31,32,35] and three were held both in a classroom and community setting [11,28,34]. Controversy exists in relation to the most appropriate setting for delivery of interventions. While some research has found that skills learnt in the classroom were transferred to the playground and not the community [30], other research has reported that skills learnt in both the classroom and community were generalised to the community setting [11,34]. In comparison, Drysdale et al. [28] found no difference between the classroom setting and the community setting in skill transfer, however the results from this study should be interpreted with caution due to limitations in the study methodology which included the small size of study groups and the fact that the community training comprised of only two outings. Several studies found that engaging in programmes and interventions with typically developing peers as well as children with an intellectual disability was more beneficial than an intervention with just children with an intellectual disability. Participation in community activities with typically developing peers was important for children with an intellectual disability as it enhanced normalisation, increased recreational opportunities and encouraged positive friendships [11,12,22,23,30,31,33]. In studies which only involved children and adolescents with an intellectual disability [6,11,29,32], both researchers and parents reflected that future programmes should include typically developing peers. Studies included in this review also highlighted the importance of considering activity preferences in the development of programmes. Three studies [11,12,23] identified that incorporating the activity preferences of children and adolescents with an intellectual disability significantly increased participation and engagement in recreational activities. Comparison groups varied for all four RCT’s. The two friendship training groups [6,29] were evaluated against a 12week delayed treatment group. The peer-mediated group [30] was compared against a no-treatment group. Finally, the community skills programme [28] evaluated the difference between three groups: classroom training, classroom training, and community outings, and a no-treatment group. Outcomes Four broad outcomes; friendships, recreational participation, community participation skills, and quality of life were evaluated for this systematic literature review (Table 1). Friendships Despite using a variety of outcomes measures, all but one study measuring friendships as an outcome reported significant positive changes. Friendships interventions were evaluated in three RCT studies [6,29,30], with two studies comparing intervention groups with delayed treatment groups [6,29], and one with a no-treatment group [30]. Significant improvements in friendships (quality, quantity) and play dates were found using friendship measures including the Friendship Quality Scale [6], the Quality of Play Questionnaire [6,29], the Social Network Survey and via observations and interviews [30]. A significant decrease in loneliness was also reported using social inclusion scales including the Loneliness Scale, Piers Self-concept Scale, and the Pupil Evaluation Inventory [29]. Of the four pretest–post-test studies evaluating friendship interventions [11,12,23,32], three studies reported significant increases in friendship quality, quantity, and
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interactions [11,12,32]. While Fennick et al. [23] reported no observed improvement in friendships through observations, Carter et al. [11] reported qualitative improvements and two studies reported significant friendship improvement in friendship on measures of social inclusion [12] social support, and a decrease in loneliness [32]. A significant increase in positive friendships and interactions outside of school was reported following friendship interventions in two multiple baseline designs [33,35], one time series design [34], one repeated measures design [31] and case report [22] when measured using observations [22,33,35], informal interviews [34], and the Peer Hang-out-with and Friendship Inventory [31]. Recreational participation Five studies reported on the effectiveness of interventions aimed at facilitating participation in recreational activities [12,22,23,31,35]. Two pretest–post-test studies evaluating recreational programmes [12,23] reported a significant increase in sports participation using observations as an outcome measure, however only the study by Schleien et al. [12] was assessed as strong methodologically. One repeated measures [31] and one mixed methods study [22] yielded similar results to the pretest– post-test studies assessing participation in recreation activities through observation [22] and the Adapted Sports Skills Assessment [31]. In addition, Siperstien et al. found a strong relationship between sports skills and building friendships (p50.01) and Becker et al. reported that following a recreation intervention, a girl with Down syndrome had increased motivation to attend other community programmes. Carter et al. [11] also reported increased participation among participants in informal leisure activities following a friendship club, even though the stated aim on the intervention was to promote friendships. Community participation skills Only one study examined the effectiveness of an 8-week community skills intervention in facilitating community participation skills in 40 children with an intellectual disability [28]. This study also evaluated if classroom training supplemented by community-based training resulted in better outcomes for participants in comparison to classroom training only. Following a three-armed RCT, significant differences were found between both intervention groups and the control group in a shopping task (p ¼ 0.007); however, there was no significant difference between the intervention groups. Participants improved in their performance on a shopping task regardless of whether they had received community skills training in the classroom only or classroom training supplemented by community-based training. The methodological quality of this RCT was rated as good; however, the small sample size across the three intervention groups is likely to have resulted in the study being underpowered (Table 1). Quality of life Only one study, a case report, examined the impact of participating in a community performing arts programme on the quality of life and self-esteem of an 11-year-old girl with Down syndrome and mild cognitive impairment [22]. Following participation in a 14-week performing arts session the girl’s mother reported that her quality of life increased in all subsets of the Paediatric Quality of Life Inventory (PedsQL) [37] except for emotional function, with a total scales score increasing from 51 to 57. Qualitative improvements were also observed in relation to the girls motor and social abilities. The methodological quality of this study was assessed as adequate (Table 1).
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Discussion This systematic review found adequate to strong evidence that community integration interventions appear to be effective in promoting the successful inclusion of children and adolescents with an intellectual disability. However, findings from this review also highlight that there are potentially many ways to continue to improve the effectiveness of community participation interventions for this group. These include the need for the development of programmes which facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programmes, and accommodate individual impairments and needs through grading and adaptive leisure activities. This review found that the majority of reported interventions targeted friendships rather than recreational participation. This is despite evidence which suggests that cooperatively structured integrated recreation programmes, which include both children with and without disabilities promote both social inclusion and friendships [31,38]. While accommodating the competitive nature of sports and individual abilities in an integrated setting can pose many challenges to programme leaders, successfully balancing these aspects can result in benefits for children both with and without intellectual disabilities [31,39]. There is a clear need for future research to explore ways in which recreation programmes can enhance the community participation of children and adolescents with intellectual disability, because as concluded by Siperstein et al. [31], ‘‘One thing is clear: When the focus is on recreation and having fun together, the social inclusion of children with intellectual disabilities is possible’’ (p. 105). This review found evidence to suggest that interventions that included typically developing peers with children with intellectual disability are a more effective model for delivering community integration interventions than those that only include children with intellectual disabilities. A recurring theme throughout previous research has been the finding that children and adolescents with intellectual disability have few friends [20] and engage in social and recreational activities more often on their own and with family members than their typically developing peers [20,40]. Parents report that the social aspects of group interventions can be motivating for adolescents with intellectual disability [39]. Collectively, these findings suggest that future community integration interventions should focus on facilitating engagement with typically developing peers as a means of enhancing friendship outcomes and fostering community inclusion. Participation in community integration interventions was also enhanced for children and adolescents with intellectual disability as a result of including individual preferences in programmes. Individual preferences are linked to the subjective aspects of participation, captured in ICFs definition of participation as ‘‘involvement in a life situation’’ [13]. Clearly, the level of engagement and involvement is an important factor in successful interventions aimed at enhancing societal inclusion. Incorporating individual preferences in interventions can only serve to facilitate engagement. Information about an individual’s engagement and subjective feelings of belonging while involved in community integration interventions could be taken into account and measured in relation to future interventions. Accommodating individual impairments and needs through grading and adapting leisure activities has the potential to facilitate the community participation of children and adolescents with intellectual disabilities [20]. This approach is consistent with the associations between impairment and participation described in the ICF. Further, succeeding in leisure and recreational activities motivates further participation [40], and while there are obvious challenges in delivering community integration
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interventions in a group setting which meet individual needs, interventions that can balance these tension will ultimately be the most effective in maximising the community integration of children and adolescents with intellectual disability. In considering the impact of factors which may influence participation in community integration interventions for young people, the research suggests that both individual and environmental factors were important. Impairment factors such as the impact of clinical symptoms and severity of disability participation was discussed in several studies. Fennick et al. [23] reported that a limited ability to communicate negatively affected participants’ ability to form friendships. A number of studies also reported that children and adolescents with a more severe intellectual disability were less likely to recognise friendships [30,34], improve in their community living skills [28], or engage in the programme as a whole [31]. Both age and gender were examined as potential personal factors which may impact on participation in programmes. Four studies [6,12,31,34] purposefully formed similar age and sex groups to facilitate similar age and sex friendships. Potential environmental factors which were identified included family social demographics, accessibility, and community supports. Several strategies were described in relation to minimising the impact of family socio-demographic circumstances on participation and attendance in interventions including incentives such as paid parking and minimising the cost of programmes [6,31,34]. Other strategies included grouping children according to parents’ and childs’ availability, prior commitments and geographic location [23,34]. Several of the interventions described strategies to accommodate for the needs of children and adolescents with an intellectual disability including assistive equipment, individualised programmes, and modifications to sporting activities [6,11,12,22,23,34,35]. Community supports were targeted in four studies with teachers and typically developing peers learning strategies to promote the inclusion of children with an intellectual disability [23,30,32,35]. The overarching and preferred outcome in the ICF is health defined as the outcome of functioning in the domains of the body, activity, and participation [13]. Restrictions in any of the components affect an individual’s functioning and influences health. The results from this review support the notion that facilitating community participation for children and adolescents with an intellectual disability is complex, and therefore interventions need to target multiple factors as described by the ICF. The use of the ICF framework in future research could be helpful as it supports an interdisciplinary approach, offers a common language for researchers, and supports measurement of functioning and disability as well as contextual factors. Research based on the ICF can help to develop our understanding of how the performance of activities is influenced by body functions and structures which, in turn, may affect activities and/or participation. Limitations from this systematic review should be clarified. First, only four electronic databases were used to search the literature. However, these databases were those most likely to identify research examining the objective of this review. Second, very few studies reported effect sizes, making it difficult to compare to retaliative effectiveness of the individual interventions. Third, parent proxy reporting was used in several studies of young people with a moderate to severe disability. This could potentially affect the findings from these studies as it may be difficult for parents to accurately report on their child’s quality of life. Finally, assessment of the methodological quality revealed that four studies [11,22,23,33] were of adequate quality. This highlights the need for more robust methodologies in this area of research. Overall, this systematic literature review highlights the need for more research examining the effectiveness of interventions which aim to increase leisure participation, friendships, and
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quality of life of young people with intellectual disability. When planning interventions, impairment, personal and environmental factors should be considered. Programmes should also aim to be flexible, promote activity preference, encourage active participation, and provide enjoyment for all young people [15,22]. Only 13 articles met the inclusion criteria for this systematic review, indicating that further research is required in this area. Being a full and active member of the community is important in the development of all young people, and while limited by the available research this review has highlighted some of the key factors in enhancing the effectiveness of community participation interventions for children and adolescents with an intellectual disability.
Declaration of interest
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The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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18. Majnemer A, Shevell M, Law M, et al. Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Dev Med Child Neurol 2008;50:751–58. 19. King G, Law M, King S, et al. A conceptual model of the factors affecting the recreational and leisure participation of children with disabilities. Phys Occupat Therap Pediatr 2003;23:63–90. 20. Oates A, Bebbington A, Bourke J, et al. Leisure participation for school-aged children with Down syndrome. Disabil Rehabil 2011; 33:1880–9. 21. Lorenzi DG, Horvat M, Pellegrini AD. Physical activity of chidren with and without mental retardation in inclusive recess settings. Educ Train Dev Disabil 2000;35:160–7. 22. Becker E, Dusing S. Participation is possible: a case report of integration into a community performing arts program. Physiother Theory Pract 2010;26:275–80. 23. Fennick E, Royle J. Community inclusion for children and youth with developmental disabilities. Focus Autism Other Dev Disabil 2003;18:20–7. 24. Law M, Petrenchik T, King G, Hurley P. Perceived environmental barriers to recreational, community, and school participation for children and youth with physical disabilities. Arch Phys Med Rehabil 2007;88:1636–42. 25. Kmet L, Lee R, Cook L. Standard quality assessment criteria for evaluating primary research papers for a variety of fields; 2004. Available from: http://www.ahfmr.ab.ca/download.php/. 26. Lee L, Packer TL, Tang SH, Girdler S. Self-management education programs for age-related macular degneration: a systematic review. Australas J Ageing 2008;27:170–6. 27. National Health and Medical Research Council [NHMRC], A guide to the development, implementation and evaluation of clinical practice guidelines. Canberra, ACT: NHMRC; 1999. 28. Drysdale J, Casey J, Porter-Armstrong A. Effectiveness of training on the community skills of children with intellectual disabilities. Scand J Occupat Therap 2008;15:247–55. 29. Frankel F, Myatt R, Sugar C, et al. A randomized controlled study of parent-assisted Children’s Friendship Training with children having autism spectrum disorders. J Autism Dev Disorder 2010;40:827–42. 30. Kasari C, Rotheram-Fuller E, Locke J, et al. Making the connection: randomized controlled trial of social skills at school for children with autism spectrum disorders. J Child Psychol Psychiatr 2012;53: 431–9. 31. Siperstein GN, Glick GC, Parker RC. Social inclusion of children with intellectual disabilities in a recreational setting. Am Assoc Intellect Dev Disabil 2009;47:97–107. 32. Barry TD, Grofer-Klinger L, Lee JM, et al. Examining the effectiveness of an outpatient clinic-based social skills group for high-functioning children with autism. J Autism Dev Disord 2003; 33:685–701. 33. Haring TG, Breen CG. A peer-mediated social network intervention to enhance the social integration of persons with moderate and severe disabilities. J Appl Behav Anal 1992;25:319–33. 34. MacKay T, Knott F, Dunlop A-W. Developing social interaction and understanding in individuals with autism spectrum disorder: a groupwork intervention. J Intellect Dev Disabil 2007;32:279–90. 35. Schleien SJ, Mustonen T, Rynders JE. Participation of children with autism and nondisabled peers in a cooperatively structured community art program. J Autism Dev Disord 1995;25:397–413. 36. Potvin MC, Prelock PA, Snider L. Collaborating to support meaningful participation in recreational activities of children with autism spectrum disorder. Top Lang Disord 2008;28:365–74. 37. Varni JW, Seid M, Kurtin PS. The PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care 2001; 39:800–12. 38. Rynders JE, Schleien SJ, Meyer LH, et al. Improving integration outcomes for children with and without severe disabilities through cooperatively strucutred recreation activities: a synthesis of research. J Spec Educ 1993;26:386–407. 39. Menear K. Parents’ perceptions of health and physical activity needs of children with Down syndrome. Down Syndr: Res Pract 2007;12: 60–8. 40. Buttimer J, Tierney E. Patterns of leisure participation among adolescents with a mild intellectual disability. J Intellecut Disabil Res 2005;25:25–42.
REVIEW
Community participation interventions for children and adolescents with a neurodevelopmental intellectual disability: a systematic review Jaimi Andrews1, Marita Falkmer2,3, and Sonya Girdler1,2
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1
School of Exercise and Health Sciences, Edith Cowan University, Perth, Western Australia, Australia, 2School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia, and 3School of Education and Communication, CHILD Programme, Institute of Disability Research, Jo¨nko¨ping University, Jo¨nko¨ping, Sweden Abstract
Keywords
Purpose: The purpose of this review was to examine the effectiveness of community integration interventions in facilitating the community participation, self-esteem, and quality of life of children and adolescent’s with a neurodevelopmental intellectual disability. Methods: Electronic searches of five databases and manual searches of reference lists were conducted. Community integration interventions which targeted friendship development, recreation participation, quality of life, and self-esteem were included. Results: Thirteen studies were included in this review. A variety of study designs and interventions were used. All but one study reported significantly increased friendships, five studies reported increased recreation participation and one study reported increased quality of life and self-esteem. Methodological quality of the studies ranged from adequate to strong. Conclusions: Community integration interventions appear to be effective in enhancing the inclusion of children and adolescents with a neurodevelopmental intellectual disability. In particular, findings from this review highlight that there are potentially many ways to continue to improve the effectiveness of community participation interventions for this group. These include the need for the development of programmes which facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programmes, and accommodate individual impairments and needs through grading and adaptive leisure activities. Future interventions should use the International Classification of Functioning, Disability and Health as a measurement framework and consider the role of factors such as impairment, personal and environmental factors in facilitating community participation.
Adolescence, children, community participation and quality of life, intellectual disability, neurodevelopmental disorder History Received 7 October 2013 Revised 3 July 2014 Accepted 10 July 2014 Published online 29 July 2014
ä Implications for Rehabilitation
Community participation interventions appear to be effective in enhancing the inclusion of children and adolescents with neurodevelopmental intellectual disability. Future community integration interventions should facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programme, and accommodate individual impairments and needs through grading and adaptive leisure activities. The International Classification of Functioning, Disability and Health should be used as a measurement framework and consider the role of factors such as impairment, personal and environmental factors in facilitating community participation.
Introduction The prevalence of neurodevelopmental intellectual disability in Western Australia is 14.3 per 1000 people [1]. Neurodevelopmental disability refers to a condition or disorder which begins in the early stages of development (conception, birth, infancy, and childhood) [2]. It can result in mild to profound
Address for correspondence: Dr. Sonya Girdler, PhD, School of Occupational Therapy and Social Work, Curtin University, Perth 6102, Western Australia, Australia. Tel: +61 08 9266 3630. E-mail: [email protected]
intellectual disability, behavioural problems, impaired speech, social withdrawal, and poor gross motor functioning [3]. Causes of neurodevelopmental disability include Rett syndrome, autism, cerebral palsy, Down syndrome, Asperger’s syndrome, and Fragile X syndrome. These conditions often have a profound influence on daily life [2]. A clear example of this includes limitations in the ability to participate in community activities such as recreation and friendships [2]. For children and adolescents with an intellectual disability, community participation can enhance physical and mental wellbeing, promote social inclusion, improve independence, and increase self-worth, life satisfaction and quality of life [4–7].
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Although the importance of community participation has been identified, current research suggests that people living with an intellectual disability participate in fewer recreational activities than their peers [8]. Interventions and programmes targeted at community participation play a key role in facilitating the inclusion of people with a disability. However to date, few community participation interventions have been developed for children and adolescents with an intellectual disability. Instead, research has focus on the child’s health needs such as medical care [3]. However, interventions and programmes which target recreational participation and friendships are reported to be more valued by the families of children with an intellectual disability than interventions focused on health care [3]. Among children with disability, targeted community participation programmes have been shown to increase sports participation and social interaction between children with and without a disability, as well as improve academic performance and functional skills [9,10]. In addition, interventions set in the community provide typically developing children with an opportunity to gain an understanding of disability [11,12]. When designing a community participation intervention for children and adolescents with a neurodevelopmental intellectual disability, several factors should be considered. The International Classification of Functioning, Disability and Health (ICF) is a holistic, theoretical framework which is often used to describe the relationship between impairment, activity and participation, and personal and environmental factors [13]. Impairment factors which may impede community participation interventions include cognitive and language ability [14] and severity of intellectual disability [15,16]. Current literature suggests that young people with a more severe impairment are less likely to participate in community activities [17,18]. Clinical symptoms also have the ability to impact the frequency and intensity at which a child can participate in recreational activities and friendships [19,20]. Personal factors which may impact on engagement in programmes targeting community participation include age and gender [14]. Depending on the age of the child or adolescent, activity preference and availability of leisure activities may vary. It has been suggested that as a child with a disability ages, activity preferences change and activities become less available [17]. Gender may also influence participation as research suggests that males prefer more physical activities, whilst girls prefer sedentary activities [21]. For children and adolescents with an intellectual disability, disability results from the interaction between their intellectual impairment and the environment, with environmental factors acting as either a barrier or facilitator to participation [13]. Environmental factors which may influence participation in community interventions for this group include accessibility, family socio-demographics, and available community supports [14,15,22]. Family financial resources can impact on a young person’s ability to attend programmes due to the cost of attendance fees or specialised equipment [15]. The needs of siblings or prior commitments may also need to be considered [23]. Negative and discriminatory attitudes of the community can also restrict participation in community programmes [24]. Therefore, the objective of this systematic review was to review the effectiveness of community integration interventions in facilitating the community participation, self-esteem and quality of life for children and adolescent’s with a neurodevelopmental intellectual disability. Community integration interventions for the purposes of this review were those targeting community, civic and social life and peer friendships [13].
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Methods Search strategy A search of the COCHRANE database failed to identify a previous review addressing the objective of this review. Four electronic databases were then searched for this review. Each database was searched from its earliest electronic record (Cumulative Index of Nursing and Allied Health Literature – CINAHL from 1982, MEDLINE from 1966, PsycINFO from 1685, and SPORTDiscus from 1381) until April 2012. The main search terms were grouped into four concepts. The first concept had the following keywords with intervention and programme added to the end: communitybased, friendship, social skills, group, and peer support. The second concept included Rett syndrome, Down syndrome, autis* (autism, autism spectrum disorder), cerebral palsy, neurodevelopmental disability, intellectual disability, and mental retardation. The third concept included outcome key words including community participation, activity participation, friend* (friendship, friends), leisure, recreation, social interaction, interpersonal, self-esteem, and quality of life. The fourth concept included children, adolescent, teenager, and young. With assistance from the librarian, all terms were adjusted, exploded and truncated in order to match the database being searched. Forward citation searching using an electronic database, Web of Science, was completed on included articles. Manual searches were conducted on all reference lists of retrieved studies; however, conference proceedings and grey literature were not searched. Inclusion and exclusion criteria A priori criteria for inclusion of studies were applied initially to titles and abstracts and then full-text articles if the abstract did not provide sufficient information. Studies were included if the community integration intervention was delivered in a group and were aimed at targeting community participation, self-esteem, and/or quality of life. Interventions were also not limited to being delivered by a specific health profession or discipline. Participants in the studies were restricted to children and adolescents aged 5–18 years with a neurodevelopmental disorder resulting in intellectual disability such as Rett syndrome, Down syndrome, cerebral palsy, and autism (for the remainder of this review, neurodevelopmental intellectual disability will be referred to as intellectual disability). Studies were excluded if the interventions were delivered individually, during school hours (except during recess and lunch) or were primarily targeted at parents. Participants which had an acquired neurodevelopmental disability or physical disability only were also excluded for this review. Quantitative, qualitative, and mixed-method studies were included in this review, and articles were limited to those published in English. Assessment of methodological quality Two reviewers independently assessed the quality of each study using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers developed by Kmet et al. [25]. This quality assessment form contains a 14-item quantitative and a 10item qualitative checklist. Guidelines and instructions have been provided to assist reviewers in undertaking quality assessment of research and calculating a summative quality score. The quality of assessed research was described as strong (score of 480%), good (70–80%), adequate (50–70%), or limited (550%) [26]. Any discrepancies between reviewers were resolved through discussion. Data extraction Data were independently extracted from selected studies using the following headings: study objective, study design, participant and
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sample size, intervention used, data collection method, outcome measures, results, discussion, and limitations. Once data were extracted, the level of evidence was determined according to the criteria described in the National Health and Medical Research Council guidelines [27].
Results
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Search strategy and selection criteria Electronic searches located a total of 396 articles using the key terms (see Figure 1). The titles and abstracts were reviewed with 325 articles not meeting the inclusion criteria and 16 articles were unable to be obtained. The full-text of the remaining 55 articles was reviewed and nine were found to meet inclusion criteria. Reference lists and citations from web of science were manually searched resulting in the further inclusion of four articles. Therefore, 13 studies were included in this systematic review. An overview of the study designs of the 13 articles included in this review are presented in Table 1: four were randomised control trial’s (RCT) [6,28–30], one was a true experimental design (oneway repeated measures) [31], seven were quasi-experimental designs (time series, multiple baseline, pretest–post-test) [11,12,23,32–35], and one was a mixed methods study [22]. Within the 13 articles, a variety of interventions were reported. Three were recreation programmes [12,23,31], two were friendship clubs/groups [11,33], two were community art programmes [22,35], two were social skills groups [32,34], two were friendship training groups [6,29], one was a Peer-mediated group [30] and one was a community skills group [28]. Overall, 468 young people participated in these interventions, 277 with an intellectual disability including 214 with an autism spectrum disorder (autism, Asperger’s syndrome) [6,11,12,23,28–30,32–35], one child with Down syndrome [22], 62 with a non-specified intellectual disability [28,31,33], and 191 were typically developing peers [12,22,30–33,35] (see Table 1). All but one study [28], reported on the impact of interventions on outcomes relating to friendships, five reported on recreational and activity participation [12,22,23,31,35], five reported on social skills [6,30,32–34], and one reported on quality of life and self-esteem/confidence [22].
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Quality of studies The methodological quality of selected studies is presented in Table 1. Overall, methodological quality of the 13 included studies ranged from adequate to strong. There appeared to be no relationship between the type of intervention protocol and the quality of the article. For most articles, the study design, objective, method of participant selection, participant/comparison characteristics, and outcome measures were clearly described. Random allocation of participants and blinding of investigators varied, depending on the study design. Due to the nature of the interventions, it was impossible to blind participants. Very few articles reported effect sizes, confounding variables, and variance. Other shortcomings included poorly reported sample sizes, with readers left to make their own conclusions. Generally, the analytical methods were justified appropriately and the results and conclusion sections were reported in detail. Interventions The intention of this review was to examine the effectiveness of interventions targeting community participation of young people with a neurodevelopmental intellectual disability, however, the majority of the interventions identified targeted friendships rather than recreational or leisure participation. Even though it has been reported that both friendship and leisure participation are important in promoting quality of life and health and well-being for children with an intellectual disability [36], only four of the 13 studies incorporated both friendship facilitation and recreational participation into their programmes [11,12,23,31]. Of the 13 included articles, seven were specifically targeted at facilitating friendships [6,11,29,30,32–34]. The aim of these interventions was to develop friendships, teach appropriate social skills for friendship development (conversation and initiation skills), and promote inclusion in peer groups. Three studies [12,23,31] undertook a recreational programme aimed at promoting participation in well-known sports and preferred activities, while also encouraging friendship development. Finally, two studies were described as community art programmes [22,35]. These aimed to enhance basic art skills, encourage
Titles and abstracts identified screened n = 396
Figure 1. Flow chart on different phases of the systematic review.
Excluded n = 325 Unable to obtain/ further information required to make assessment n = 16 Full copies retrieved and assessed for eligibility n = 55 Excluded n = 46 Age n = 15 No intervention n = 3 Outcomes not relevant n = 8 Individual/paired interventions n = 11 ABI or physical disability n = 4 Foreign language n = 3 Systematic review n = 2
Studies obtained from Web of Science n = 2 Studies identified from reference list n = 2
Publications meeting inclusion criteria and included in review n = 13
Adolescent’s with autism (n ¼ 1) & intellectual disability (n ¼ 1)
Social interaction/friendships Observations (assessor) Qualitative - satisfaction,
–
Social network group Aim: facilitate social interaction and inclusion Weekly sessions
Multiple baseline (n ¼ 11)
Haring 1992 USA
Quality of life PedsQL (parent) Friendships, Self-confidence, Engagement Observations Parent report
–
Performing arts group Aim: participation in dance, voice, acting 14 weekly sessions Community performing arts centre
Friendships " friendships (quality, quantity, interactions) " peer interaction outside of
Friendships " no. Friendships and social network (p ¼ 0.02) Reciprocal friendships were non-significant # isolation on the playground Social skills " social skills (p ¼ 0.01) " QOL and self-confidence " interaction and engagement with peers " motivation for other community programmes
Friendships " hosted get togethers, better quality friendships (p50.05) Social skills " knowledge of social skills compared to delayed intervention group (p50.05)
Friendships " social participation and appropriate conversation (p50. 001) Social skills " social skills and competence (turn-taking, personal space, body language) (p50.01)
Friendships Significant change (p40.05) " in play dates (number, behaviour), child’s self-control and assertiveness Significant change (p50.025) # loneliness, " popularity
Results
Methodological quality
Adequate quality (score ¼ 13/20). Poorly described study. Data collection and analysis not clearly described. No verification procedures to establish credibility or reflexivity of account. Adequate quality (score ¼ 15/22). Sample size not identified. Confounding variables, variance and analytical methods partially
Good quality (score ¼ 21/28). Blinding of participants not reported, sample size and confounding variables partially reported. Investigators blinded, random allocation, and results/ conclusion sufficiently reported.
Good quality (score ¼ 20/28). Investigators and participants not blinded, variance not reported, sample size and confounding variables partially reported. Random allocation, and results/conclusion sufficiently reported.
Good quality (score ¼ 20/26). Sample size and confounding variables partially reported. Investigators blinded, no random allocation and variance not reported. Random allocation, and results/conclusion sufficiently reported
Strong quality (score ¼ 24/28) Investigators and participants not blinded. Large sample size, analytical and variance described, random allocation, study design evident, and results/conclusion sufficiently reported
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Girl with Down syndrome (11 y, mild cognitive impairment) Children without Down syndrome (8–14 y)
Case report (n ¼ 1)
Becker 2010 USA
No intervention Children with high functioning ASD (n ¼ 15)
Peer-mediated group (n ¼ 60) Aim: develop friendships 2 sessions/wk for 6 wk Recess and lunch at school
Children with high functioning ASD (n ¼ 30) Children without ASD (n ¼ 45) 6–11 y
RCT (n ¼ 75)
Kasari 2012 USA
Delayed intervention group (n ¼ 16)
Teenagers with ASD 13–17 y
RCT (n ¼ 33)
Laugeson 2008 USA
Friendships The loneliness scale (child) Piers self-concept scale (child) Quality of play questionnaire (parent) The Pupil Evaluation Inventory (teacher) Social skills Social Skills Rating System (parent) Friendships Informal interviews (parent) Social skills Spence social skills and social competence with peers questionnaires (parent/child) The three things – key social skills (parent) Friendship Friendship quality scale The quality of play questionnaire (parent/teen) Social skills Social skills training scale (parent/teacher) Test of adolescent social skills knowledge (teen) Friendships Social network survey (child) Playground observations (assessor) Self, peer and teacher reports Social skills Teachers report
Outcome measures
Parent assisted social skills group (n ¼ 17) Aim: develop friendships 12 weekly sessions 7 per group Classroom (after hours) Children and parents (separated)
–
Social skills group Aim: friendship skills 12–16 weekly sessions 8 per group 6 groups: 3 6–11 yo; 3 12– 16 yo Classroom (afterhours) & community outings
Children with high functioning ASD 6–16 y
Quasi-experimental time series (n ¼ 46)
Mackay 2007 UK
Control group Delayed intervention group (n ¼ 33)
Intervention group Children’s friendship training group (n ¼ 35) Aim: develop friendships 12 weekly sessions Classroom (after-hours) Children and parents (separated)
RCT (n ¼ 68)
Frankel 2010 USA
Participants
Children with high functioning ASD and their parents 7–11 y
Design/number of participants
Author, year, country
Table 1. Findings of the included studies.
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Children with moderate intellectual disability (8 autism and 32 non-specified) 9–11 yo
One-way repeated measures (n ¼ 67)
RCT (n ¼ 40)
Two-group pretest–post-test (n ¼ not specified)
Siperstein 2009 USA
Drysdale 2008 Ireland
Fennick 2003 USA
Children with mild to severe autism (n ¼ 5) Children without autism 6–13 yo
Children with mild intellectual disability (n ¼ 29) Children without intellectual disability (n ¼ 38) 8–13yo
One-group pretest– post-test (n ¼ 11)
Barry 2003 USA
Adolescent’s without autism & intellectual disability (n ¼ 9) 12–13 y Children with high functioning autism (n ¼ 4) Children without autism (n ¼ 7) (only used for assessment period) 6–9 y
Community skills group Aim: participation in games, learning shopping and telephone skills 2 sessions/wk for 8 wk 6 per group 2 groups: 1 - classroom and community training (n ¼ 12); 2 - classroom training (n ¼ 12) Classroom (after hours) and community outings Recreation group Aim: participation in swimming, gymnastics, develop friendships 2 groups: 1 - swimming (n ¼ 3); 2 - gymnastics (n ¼ 2) Leisure centre
Summer recreational programme Aim: participation in swimming, basketball, soccer, free play, arts & crafts 5 sessions/wk for 4 wk 12 per group Leisure centre
Social skills group Aim: Social skills and friendships 8 weekly sessions Out-patient university psychology clinic (community)
2 Groups: 1 (n ¼ 5), 2 (n ¼ 6) Recess, lunch and classroom (after-hours)
Friendships Peer hang-out-with and friendship inventory (child) Recreational participation Adapted sports skills assessment (investigators)
Community skills (shopping and telephone) Observations Task analysis
Recreational participation/ Friendships Observations ! participation, attendance and enjoyment Parent survey
No intervention ! normal classroom activities (n ¼ 16)
–
Social skills SSRS- social skills competence (parent) Social skills observations – play (investigators) Social skills interview – was the child using the skills in community setting (parent) Friendship/Social Support Social support scale (child) Loneliness scale (child)
–
–
peer interaction/relationship (child and peers)
Recreational participation Positive feedback on programmes Friendships No improvement in friendships " participation in group community programmes
Social Skills Significant " Greeting skills (p50.03) Trend for " conversation skills (p50.10) " Greeting skills outside clinic Friendships/Social Support Significant " in perceived social support from peers (p50.05), play (p50.03) " meaningful peer relationships between children with and without autism # perceived loneliness Friendships Children with ID made new friends and more accepted by peers Recreational participation Significant " in swimming and soccer skills for children with ID (p50.001) Strong relationship between sports skills and building relationships (p50.01) Community skills (shopping and telephone) Intervention group " understanding of required shopping skills (p ¼ 0.007) No change in handling of money, making telephone call No difference between classroom and community based training
school and continued peer network Social skills " knowledge of social skills
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Community participation interventions (continued )
Adequate quality (score ¼ 11/20). Random allocation and blinding N/A. Analytical methods, results and conclusion partially described. Small sample size and confounding variables not considered
Good quality (score ¼ 22/28) Participants not blinded. Confounding variables considered, small sample size analytical methods described, random allocation, blinded investigators, study design evident, and results/conclusion sufficiently reported.
Good quality (score ¼ 17/22) Blinding and random allocation N/A. Study design, confounding variable and variance not clearly identified. Large sample size and analytical methods described.
Good quality (score ¼ 18/24) Small sample size, confounding variables not considered, and study design not clearly identified. Investigators blinded, results/ conclusion sufficiently reported, and analytical methods justified.
described. Blinding and random allocation N/A.
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829
Multiple baseline (n ¼ 32)
One-group pretest– post-test (n ¼ 69)
Two-groups pretest–post-test (n ¼ 10)
Schleien 1995 USA
Schleien 1987 USA
Carter 2004 USA –
Friendships, enjoyment, activity participation Observations Verbal and written feedback from children and parents
Friendships Attitude acceptance scale (peers) Play/participation Behavioural observations – in play and with peers (children and peers)
–
Summer recreation programme Aim: participation in badminton, basketball, volleyball, gymnastics, swimming, tennis, squash, free time 5 sessions/wk for 3 wk 3 age groups: 7–8 yo; 9–10 yo; 11–12 yo University campus (community) Friendship club Aim: develop friendships and skills. 6 weekly sessions 2 age groups: 8–10 y (n ¼ 6); 11–15 yo (n ¼ 4) Classroom (after hours) and community
Children with severe autism (n ¼ 2) Children without autism (n ¼ 67) 7–12yo
Children with Asperger’s syndrome 8–15 yo
Friendships Observations – positive interactions, appropriate and inappropriate behaviour
–
Outcome measures
Control group
Community art programme Aim: develop friendships, learn art skills 7 monthly sessions Community museum
Intervention group
Children with mild to severe autism (n ¼ 7) Children without autism (n ¼ 25) 7–11 yo
Participants
N.B. – Scoring for methodological quality ¼ total sum (‘‘yes’’ 2 + ‘‘partial’’ 2)/total possible score (28 – number of N/A 2).
a
Design/number of participants
Author, year, country
Table 1. Continued
Results
Friendships Most children had " friendships Activity participation " activity participation and enjoyment
Friendships Significant " in positive interactions initiated by children without autism towards children with autism: younger group (p ¼ 0.012); older group (p ¼ 0.007) No change in initiation or conversation by children with autism Play/participation Appropriate play significantly " in recreational activities " depending of participants preferred activity Friendships " in appropriate peer interaction
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Methodological quality
Adequate quality (score ¼ 13/22). Random allocations and blinding N/A. Study design, outcome measures, analytical methods and results not sufficiently described. Variance and confounding variables not described
Strong quality (score ¼ 18/22) Random allocation and blinding N/A. Sample size, variance and confounding variables not mentioned. Analytical methods and results/conclusions sufficiently described.
Strong quality (score ¼ 18/22) Random allocation and blinding N/A. Sample size is large. Confounding variables and variance partially described
a
830 J. Andrews et al. Disabil Rehabil, 2015; 37(10): 825–833
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DOI: 10.3109/09638288.2014.944625
friendship development, and promote participation in art activities such as dancing, singing, acting, and arts and crafts. Intervention settings included two held in a school classroom (after-hours) [6,29], and two at school during recess and lunch breaks [30,33]. Six were conducted in a community setting (leisure centre, museum, performing arts centre, university campus) [12,22,23,31,32,35] and three were held both in a classroom and community setting [11,28,34]. Controversy exists in relation to the most appropriate setting for delivery of interventions. While some research has found that skills learnt in the classroom were transferred to the playground and not the community [30], other research has reported that skills learnt in both the classroom and community were generalised to the community setting [11,34]. In comparison, Drysdale et al. [28] found no difference between the classroom setting and the community setting in skill transfer, however the results from this study should be interpreted with caution due to limitations in the study methodology which included the small size of study groups and the fact that the community training comprised of only two outings. Several studies found that engaging in programmes and interventions with typically developing peers as well as children with an intellectual disability was more beneficial than an intervention with just children with an intellectual disability. Participation in community activities with typically developing peers was important for children with an intellectual disability as it enhanced normalisation, increased recreational opportunities and encouraged positive friendships [11,12,22,23,30,31,33]. In studies which only involved children and adolescents with an intellectual disability [6,11,29,32], both researchers and parents reflected that future programmes should include typically developing peers. Studies included in this review also highlighted the importance of considering activity preferences in the development of programmes. Three studies [11,12,23] identified that incorporating the activity preferences of children and adolescents with an intellectual disability significantly increased participation and engagement in recreational activities. Comparison groups varied for all four RCT’s. The two friendship training groups [6,29] were evaluated against a 12week delayed treatment group. The peer-mediated group [30] was compared against a no-treatment group. Finally, the community skills programme [28] evaluated the difference between three groups: classroom training, classroom training, and community outings, and a no-treatment group. Outcomes Four broad outcomes; friendships, recreational participation, community participation skills, and quality of life were evaluated for this systematic literature review (Table 1). Friendships Despite using a variety of outcomes measures, all but one study measuring friendships as an outcome reported significant positive changes. Friendships interventions were evaluated in three RCT studies [6,29,30], with two studies comparing intervention groups with delayed treatment groups [6,29], and one with a no-treatment group [30]. Significant improvements in friendships (quality, quantity) and play dates were found using friendship measures including the Friendship Quality Scale [6], the Quality of Play Questionnaire [6,29], the Social Network Survey and via observations and interviews [30]. A significant decrease in loneliness was also reported using social inclusion scales including the Loneliness Scale, Piers Self-concept Scale, and the Pupil Evaluation Inventory [29]. Of the four pretest–post-test studies evaluating friendship interventions [11,12,23,32], three studies reported significant increases in friendship quality, quantity, and
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interactions [11,12,32]. While Fennick et al. [23] reported no observed improvement in friendships through observations, Carter et al. [11] reported qualitative improvements and two studies reported significant friendship improvement in friendship on measures of social inclusion [12] social support, and a decrease in loneliness [32]. A significant increase in positive friendships and interactions outside of school was reported following friendship interventions in two multiple baseline designs [33,35], one time series design [34], one repeated measures design [31] and case report [22] when measured using observations [22,33,35], informal interviews [34], and the Peer Hang-out-with and Friendship Inventory [31]. Recreational participation Five studies reported on the effectiveness of interventions aimed at facilitating participation in recreational activities [12,22,23,31,35]. Two pretest–post-test studies evaluating recreational programmes [12,23] reported a significant increase in sports participation using observations as an outcome measure, however only the study by Schleien et al. [12] was assessed as strong methodologically. One repeated measures [31] and one mixed methods study [22] yielded similar results to the pretest– post-test studies assessing participation in recreation activities through observation [22] and the Adapted Sports Skills Assessment [31]. In addition, Siperstien et al. found a strong relationship between sports skills and building friendships (p50.01) and Becker et al. reported that following a recreation intervention, a girl with Down syndrome had increased motivation to attend other community programmes. Carter et al. [11] also reported increased participation among participants in informal leisure activities following a friendship club, even though the stated aim on the intervention was to promote friendships. Community participation skills Only one study examined the effectiveness of an 8-week community skills intervention in facilitating community participation skills in 40 children with an intellectual disability [28]. This study also evaluated if classroom training supplemented by community-based training resulted in better outcomes for participants in comparison to classroom training only. Following a three-armed RCT, significant differences were found between both intervention groups and the control group in a shopping task (p ¼ 0.007); however, there was no significant difference between the intervention groups. Participants improved in their performance on a shopping task regardless of whether they had received community skills training in the classroom only or classroom training supplemented by community-based training. The methodological quality of this RCT was rated as good; however, the small sample size across the three intervention groups is likely to have resulted in the study being underpowered (Table 1). Quality of life Only one study, a case report, examined the impact of participating in a community performing arts programme on the quality of life and self-esteem of an 11-year-old girl with Down syndrome and mild cognitive impairment [22]. Following participation in a 14-week performing arts session the girl’s mother reported that her quality of life increased in all subsets of the Paediatric Quality of Life Inventory (PedsQL) [37] except for emotional function, with a total scales score increasing from 51 to 57. Qualitative improvements were also observed in relation to the girls motor and social abilities. The methodological quality of this study was assessed as adequate (Table 1).
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Discussion This systematic review found adequate to strong evidence that community integration interventions appear to be effective in promoting the successful inclusion of children and adolescents with an intellectual disability. However, findings from this review also highlight that there are potentially many ways to continue to improve the effectiveness of community participation interventions for this group. These include the need for the development of programmes which facilitate friendships alongside recreational participation, include typically developing peers, consider the activity preferences of children and adolescents in developing programmes, and accommodate individual impairments and needs through grading and adaptive leisure activities. This review found that the majority of reported interventions targeted friendships rather than recreational participation. This is despite evidence which suggests that cooperatively structured integrated recreation programmes, which include both children with and without disabilities promote both social inclusion and friendships [31,38]. While accommodating the competitive nature of sports and individual abilities in an integrated setting can pose many challenges to programme leaders, successfully balancing these aspects can result in benefits for children both with and without intellectual disabilities [31,39]. There is a clear need for future research to explore ways in which recreation programmes can enhance the community participation of children and adolescents with intellectual disability, because as concluded by Siperstein et al. [31], ‘‘One thing is clear: When the focus is on recreation and having fun together, the social inclusion of children with intellectual disabilities is possible’’ (p. 105). This review found evidence to suggest that interventions that included typically developing peers with children with intellectual disability are a more effective model for delivering community integration interventions than those that only include children with intellectual disabilities. A recurring theme throughout previous research has been the finding that children and adolescents with intellectual disability have few friends [20] and engage in social and recreational activities more often on their own and with family members than their typically developing peers [20,40]. Parents report that the social aspects of group interventions can be motivating for adolescents with intellectual disability [39]. Collectively, these findings suggest that future community integration interventions should focus on facilitating engagement with typically developing peers as a means of enhancing friendship outcomes and fostering community inclusion. Participation in community integration interventions was also enhanced for children and adolescents with intellectual disability as a result of including individual preferences in programmes. Individual preferences are linked to the subjective aspects of participation, captured in ICFs definition of participation as ‘‘involvement in a life situation’’ [13]. Clearly, the level of engagement and involvement is an important factor in successful interventions aimed at enhancing societal inclusion. Incorporating individual preferences in interventions can only serve to facilitate engagement. Information about an individual’s engagement and subjective feelings of belonging while involved in community integration interventions could be taken into account and measured in relation to future interventions. Accommodating individual impairments and needs through grading and adapting leisure activities has the potential to facilitate the community participation of children and adolescents with intellectual disabilities [20]. This approach is consistent with the associations between impairment and participation described in the ICF. Further, succeeding in leisure and recreational activities motivates further participation [40], and while there are obvious challenges in delivering community integration
Disabil Rehabil, 2015; 37(10): 825–833
interventions in a group setting which meet individual needs, interventions that can balance these tension will ultimately be the most effective in maximising the community integration of children and adolescents with intellectual disability. In considering the impact of factors which may influence participation in community integration interventions for young people, the research suggests that both individual and environmental factors were important. Impairment factors such as the impact of clinical symptoms and severity of disability participation was discussed in several studies. Fennick et al. [23] reported that a limited ability to communicate negatively affected participants’ ability to form friendships. A number of studies also reported that children and adolescents with a more severe intellectual disability were less likely to recognise friendships [30,34], improve in their community living skills [28], or engage in the programme as a whole [31]. Both age and gender were examined as potential personal factors which may impact on participation in programmes. Four studies [6,12,31,34] purposefully formed similar age and sex groups to facilitate similar age and sex friendships. Potential environmental factors which were identified included family social demographics, accessibility, and community supports. Several strategies were described in relation to minimising the impact of family socio-demographic circumstances on participation and attendance in interventions including incentives such as paid parking and minimising the cost of programmes [6,31,34]. Other strategies included grouping children according to parents’ and childs’ availability, prior commitments and geographic location [23,34]. Several of the interventions described strategies to accommodate for the needs of children and adolescents with an intellectual disability including assistive equipment, individualised programmes, and modifications to sporting activities [6,11,12,22,23,34,35]. Community supports were targeted in four studies with teachers and typically developing peers learning strategies to promote the inclusion of children with an intellectual disability [23,30,32,35]. The overarching and preferred outcome in the ICF is health defined as the outcome of functioning in the domains of the body, activity, and participation [13]. Restrictions in any of the components affect an individual’s functioning and influences health. The results from this review support the notion that facilitating community participation for children and adolescents with an intellectual disability is complex, and therefore interventions need to target multiple factors as described by the ICF. The use of the ICF framework in future research could be helpful as it supports an interdisciplinary approach, offers a common language for researchers, and supports measurement of functioning and disability as well as contextual factors. Research based on the ICF can help to develop our understanding of how the performance of activities is influenced by body functions and structures which, in turn, may affect activities and/or participation. Limitations from this systematic review should be clarified. First, only four electronic databases were used to search the literature. However, these databases were those most likely to identify research examining the objective of this review. Second, very few studies reported effect sizes, making it difficult to compare to retaliative effectiveness of the individual interventions. Third, parent proxy reporting was used in several studies of young people with a moderate to severe disability. This could potentially affect the findings from these studies as it may be difficult for parents to accurately report on their child’s quality of life. Finally, assessment of the methodological quality revealed that four studies [11,22,23,33] were of adequate quality. This highlights the need for more robust methodologies in this area of research. Overall, this systematic literature review highlights the need for more research examining the effectiveness of interventions which aim to increase leisure participation, friendships, and
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quality of life of young people with intellectual disability. When planning interventions, impairment, personal and environmental factors should be considered. Programmes should also aim to be flexible, promote activity preference, encourage active participation, and provide enjoyment for all young people [15,22]. Only 13 articles met the inclusion criteria for this systematic review, indicating that further research is required in this area. Being a full and active member of the community is important in the development of all young people, and while limited by the available research this review has highlighted some of the key factors in enhancing the effectiveness of community participation interventions for children and adolescents with an intellectual disability.
Declaration of interest
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The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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