Promoting Community-Based
Participation Interventions for
Children and Youth with
Neurodevelopmental Disorders.
A systematic Literature Review
Aikaterini Araniti
One year master thesis 15 credits Supervisor
Interventions in Childhood Mats Granlund Examinator
Spring Semester 2020 Name
Jönköping University Spring Semester 2020
ABSTRACT
Author: Aikaterini Araniti
Promoting Community-Based Participation Interventions for children and youth with neurodevelopmental disorders.
A systematic literature review
Pages: 33
As every person has the right to participate in leisure, recreational and sports activities, children with disabilities have the same right to freely participate in the activities of their preference without restrictions. Community-based interventions aim to promote this right by modifying the whole environment or enhance the already existing one with appropriate equipment. However, there is a lack of community-based interventions to promote participation in leisure activities for children and youth with neurodevelopmental disorders and physical disabilities. As a consequence, this systematic literature review aims to identify those community-based interventions and point out their characteristics that are described as effective concerning children’s and youth’s attendance, involvement and activity competence. Furthermore, it is crucial to specify whether those activities are based on children’s preferences. After a scholarly search, both quantitative and qualitative studies were evaluated. Six intervention studies were characterized as appropriate to be included in the review providing important information for those interventions approaches. A narrative analysis of the results was based on the Family Participation Related Construct (fPRC) theoretical framework. Results showed that interventions were based on the children’s and youth’s preferences and intervention referred to the environment rather than to the participants themselves. Furthermore, availability, accessibility, adaptability, acceptability and affordability were all considered in the intervention process while the modification or identification of appropriate environment played a vital role in the interventions’ implementation. However, despite the fact that studies aimed to increase participation, some of the used measurements focused on activity competence rather than participation. All the above were critically discussed, giving the incentive for further research implications in the emerged results.
Keywords: community-based interventions, participation, leisure, recreation, children, neurodevelopmental disorders, physical disabilities
Postal address Högskolan för lärande och kommunikation (HLK) Box 1026 551 11 JÖNKÖPING Street address Gjuterigatan 5 Telephone 036–101000 Fax 03616258 5
2. Background ... 2
2.1. Disability ... 2
2.1.1. Neurodevelopmental disorders and Physical disabilities ... 2
2.2. Human Rights ... 3
2.3. Participation ... 3
2.3.1. Participation as a human right ... 3
2.3.2. Family Participation Related Construct (fPRC) framework ... 4
2.3.3. Participation in leisure, recreation and sports activities and the ecology of human development ... 5
2.4. What are community and community-based practice-interventions? ... 6
2.4.1. Community-based interventions for recreation, leisure and sports activities ... 8
2.5. Research Gap ... 9
2.6. Aim and Research Question ... 10
3. Method ... 10
3.1. Systematic literature review ... 10
3.2. Search procedure ... 11
3.3. Inclusion and exclusion criteria ... 11
3.4. Screening process (Title and abstract level) ... 13
3.5. Screening process (Full-text reading) and Data extraction ... 14
3.6. Quality assessment ... 14
Figure 1 ... 15
3.7. Data analysis ... 16
4. Results ... 16
4.1. Overview of community-based interventions and initial description of the results ... 16
4.1.1. Participants ...16
4.1.2. Interventions...17
4.1.3. Measurements ...18
4.1.4. Other relevant characteristics ...18
4.2. Key elements of findings categorized into the “Family of participation-related constructs” (fPRC) framework domains. ... 19
4.2.1. Attendance & Involvement ...19
4.2.2. Intrinsic factors that influence, and are influenced by participation...21
4.2.3. Extrinsic factors that influence participation ...23
4.3. Assessing robustness of studies and synthesis ... 25
5. Discussion ... 26
5.1. Description of overall results ... 26
5.2. Participants ... 26
5.3. Interventions ... 27
5.3.1. Community-based interventions and the five environmental dimensions .27 5.3.2. Reflection on the importance of community-based interventions ...28
5.4. Measurements and Participation ... 29
5.5. Methodological issues ... 30
5.5.1. Studies’ ethical considerations ...30
5.5.2. Strengths and weaknesses of studies ...30
7. References ... 34 8. Appendices ... 42 Appendix 1 ... 42 Appendix 2 ... 43 Appendix 3 ... 44 Appendix 4 ... 61
1. Introduction
In 2013, the United Nations stated the rights of the child to have full opportunity for leisure and recreational activities (UN, 2013). Through participating in these activities, children experience improvement in their health and well-being, which in turn promotes their development, self-efficacy, as well as their physical, emotional, cognitive and social skills that further help them to be included in social networks and form friendships (Ullenhag, Krumlinde-Sundholm, Granlund & Almqvist, 2013; UN, 2013). Dynamic interaction between the child and the environment contributes to the child’s leisure participation (Ullenhag, Krumlinde-Sundholm, Granlund & Almqvist, 2013). As a person “being involved in a life situation,” they experience participation (World Health Organization [WHO], 2007, p. 9).
Several research studies have reported that children and youth with neurodevelopmental disorders (NDD) and physical disabilities (PD) participate less in leisure activities rather than the other typically developed ones (Solish, Perry & Minnes, 2010; Shikako-Thomas et al., 2014; Ullenhag, Krumlinde-Sundholm, Granlund & Almqvist, 2013). Community-based programs are trying to support these children and increase their participation in the community. These community-based interventions focus on facilitating recreational activities, sports, and leisure participation through evaluating and adapting the environment (Andrews, Falkmer & Girdler, 2014). It is supported that participation can not only be increased by intervening to the child but through environmental and social changes as well, reformulating an environment to become more assessable for them (WHO, 2010). However, children with NDD and PD still face many participation barriers as they are restricted from these environments (Tint, Manghan & Weiss, 2016; Bedell et al., 2013). There is a remarkable need for client-centered, community-based approaches that focus their intervention planning on children’s and youth’s preferences and their full participation in those leisure, sports and recreational activities (Law et al., 2006; Kaljača, Dučić & Cvijetić, 2019).
2. Background
2.1. Disability
The World Health Organization (WHO) supports that disability is “as an umbrella term for impairments, activity limitations and participation restrictions, denoting the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual (environmental and personal) factors” (WHO, 2015, p. 1). In article 1 of the Convention on the Rights of Persons with Disabilities (CRPD), disability is defined as a condition of long-term physical, intellectual, mental or sensory impairments, in combination with other barriers, which affect people’s equal experience of participation in society (United Nations [UN], 2006). In 2015, the International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) gave another important definition, supporting that a complex combination of a person’s health condition and his/her personal factors in relation to the external factors, can be translated into “disability” (WHO, 2007). More than 90 million children under 15 years of age have been noted with moderate to severe disabilities (WHO, 2015). Research supports that the interaction between children and their environment, both physical and social, can limit the participation of children with disabilities, identifying them as vulnerable populations (Harding et al., 2009; Law et al.,1999). As Law and her colleagues state in 1999, the concept of disability does not arise from the person’s disability itself, but from the relationship and interaction of this person with a disability and his/her surrounding environment (Law et al., 1999).
2.1.1. Neurodevelopmental disorders and Physical disabilities
DSM-5 defines neurodevelopmental disorders as a group of conditions that begin early in development and are characterized “by developmental deficits that produce impairments of personal, social, academic, or occupational functioning” (American Psychiatric Association [APA], 2013, p.31). These neurodevelopmental disorders are intellectual disability (ID), communication disorders, cerebral palsy (CP), autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), motor disorders-developmental coordination disorder (DCD), tic disorders and specific learning disorders. It is a commonplace for these neurodevelopmental disorders to co-occur, such as ID often appears together with cerebral palsy (APA, 2013; Patel, Greydanus, Omar & Merrick, 2011). Some of the most common congenital and
childhood types of PD withing the NDD spectrum are cerebral palsy (CP). Spina bifida and muscular dystrophy that are associated with the central nervous system and neuromuscular and musculoskeletal conditions (Disability World, 2019) are not mentioned within NDD but are still included in this review.
No matter the existence of a disability or not, all children have the same needs and rights to participate in their preferred leisure, sports and recreational activities and not be restricted due to the lack of appropriate provisions and legislations to support their engagement to those activities (UN, 2013)
2.2. Human Rights
The action plan of WHO supports equal rights and opportunities for people with disabilities and their families (WHO, 2015). Its design was based on the CRPD according to which, individuals’ participation, inclusion in the society and the equal opportunities with others, were some of the factors that the action plan supports. In the sequel of these, another important aspect that the action plan includes, is people taking part in the decision-making processes that directly affect their lives, emphasizing on the approaches and implementation of this plan. More precisely, person-centered approaches and community-based rehabilitation were some of the preconditions (WHO, 2015). In article 19 of CRPD, the emphasis is placed on full enjoyment, inclusion and participation of people with disabilities in the community and the responsibility of community services to create an available and with equal opportunities community environment (UN, 2006). With this in mind, article 30 supports people’s participation in cultural life, recreation, leisure and sports, for all persons with disabilities to have access and enjoy cultural activities, such as theaters and museums, sporting and recreational activities while also any other leisure activity (UN, 2006).
2.3. Participation
2.3.1. Participation as a human right
Participation in everyday activities at home, school and community, is one of the most important factors that have an immediate effect on a child’s development and, in turn, health, well-being and quality of life (Larson, 2000; Anaby et al., 2014). Some vital factors are achieved through participation for the development and transition to adulthood during childhood; physical and mental health, and also the acquisition of
skills and development of social networks (Gorter, Stewart & Woodbury-Smith, 2011; Anaby et al., 2014). Children and youth with disabilities experience restriction in participation compared to their typically developed peers (Anaby et al., 2014). At this point, it is crucial to mention that CRPD recognizes disability as an outcome of a person’s impairments and environmental barriers that do not allow full participation. In other words, CRPD supports the right of persons with disabilities to take part, fully participate and be included in society (UN, 2006). In 2010, Lansdown supported that it is impossible to envisage child participation, unless governments recognize their responsibility to provide the community with the appropriate legislation, policy and practice that will guarantee these children’s right to be actively involved and taken seriously in decisions that affect them (Lansdown, 2010).
2.3.2. Family Participation Related Construct (fPRC) framework
It is broadly known that in the ICF-CY, the WHO defines participation as a person’s “involvement in a life situation,” which is one of the six core domains of the framework (WHO, 2015, p. 9). Imms and her colleagues placed great emphasis on the term “participation,” formulating the Family of Participation-Related Constructs (fPRC), which propose that, “participation can be both as an entry point (a ‘process’) and an outcome (endpoint) of health and educational services” (Imms et al., 2016, p. 16). Within the framework, participation is characterized by two main components: attendance and involvement. Being involved means that a person experiences participation while attending to an occupation, being engaged and socially connected with others. Importantly, for a person to experience involvement, his/her attendance to an activity is a prerequisite. On the contrary, while a person attends to an activity, the experience of involvement is not guaranteed (Adair et al., 2018). To identify a person’s attendance, both frequency of attending and the range of the activity’s diversity in which this person takes part can be measured. To measure a person’s involvement or engagement, factors, such as the contextual where the activity takes place, need to be taken into account to further understand the concept of participation (Imms et al., 2016).
It is worth mentioning the person’s intrinsic factors concerning participation. More precisely, activity competence, sense of self and preferences are concepts that can be related to past and present participation, while they also have a great impact on
future participation (Imms et al., 2015; Imms et al., 2016). “Activity competence includes cognitive, physical and affective skills and abilities, by measuring capacity, capability and performance” (Imms et al., 2016, p. 20). Along with activity competence, emphasis can be given to the children’s sense of self in the future-directed perceptions, including self-efficacy, autonomy and satisfaction. Providing opportunities to children to experience meaningful and valuable activities is a fundamental factor for increasing children’s preferences (Imms et al., 2015; Imms et al., 2016). Along with intrinsic ones, the framework also supports the extrinsic factors that are related to participation. These extrinsic factors referred to the relationship between the environment and participation. The environment (physical and social) can affect the individual’s participation both directly and indirectly, while this participation is presented in a contextualized setting. Indicatively, the contextualized setting includes people, objects, places and any activity that an individual performs in which participation is set (Imms et al., 2016). Here, it is crucial to distinguish between environment and context as the “environment is external to the individual and context is related to people’s experiences” (Batorowicz, King, Mashra & Missiuna, 2015, p. 1208). The interaction of the consisting elements of context (place, activity, people, objects and time) shapes a person’s contextualized experience while participating (Batorowicz et al., 2015; Imms et al., 2016). As a consequence, changes in people and the environment can take place, as the relationship between the person and his/her surrounding context alternates over time (Imms et al., 2016).
2.3.3. Participation in leisure, recreation and sports activities and the ecology of human development
In the ICF-CY, there is plenty of important information regarding the interaction and relationship between a person and its immediate environment where (s)he lives and participates (WHO, 2007; Soresi, Nota, Wnhmeyer, 2011). In order to talk about this vital relationship, it is crucial to begin from the ecology of human development. Bronfenbrenner and Evans (2000) stated how important it is to look into the forces that influence human beings now, to what they will become in the future. Through developmental science, the dynamic interactions of conditions and processes that continuously change over time can be studied (Bronfenbrenner & Evans, 2000). The proximal process refers to the interaction between a person and the immediate environment and can produce two kinds of developmental outcomes, competence or
dysfunction. Based on those proximal processes, there are also factors that contribute to a person’s development and can lead to the competence. One important issue is the exposure, meaning the maintenance of the relationship between the “developing person and the proximal processes in which that person engages” (Bronfenbrenner & Evans, 2000, p. 118). Considering the personal level, while a person is engaged in a situation, it is possible to experience competence and sense of self (Imms et al., 2016).
When individuals and, in this case, children and youth are being involved in leisure activities, they are allowed to socially interact and become connected with their family, friends and the community (Majnemer, 2010). Children’s and youth’s participation in leisure and recreational activities play a vital role in their development (King et al., 2003), quality of life, well-being and satisfaction (Kaljaca, Ducic & Cvijetic, 2019). In the case of the relationship between participation and development, three aspects have to be taken into account: social interaction, the opportunity for play and exploration, and mobility (McConachie et al., 2006). Leisure participation is that important condition when a person freely chooses to be involved in an activity, experiencing satisfaction, motivation and self-efficacy while participating in this activity (Shikako-Thomas, Majnemer, Law & Lach, 2008). It is reported that children and youth with disabilities experience less participation in leisure and recreational activities as they have to face many different barriers in contrast to their typically developing peers (Kaljaca, Ducic & Cvijetic, 2019).
Based on the above, a study published in 2014 comes to add that, participation of children and youth with disabilities across different settings can directly be influenced by changing environmental factors (Anaby et al., 2014). However, it was noted that in each setting, a completely different relationship between an environment and an individual’s participation could be developed, meaning that this relationship can both act as a facilitator or barrier (Anaby et al., 2014). Unfortunately, a recent study published in 2018, noted that there is still a small number of research studies supporting the community programs to enhance children’s participation in leisure activities (Ferandez, Ziviani, Cuskelly, Colquhoun & Jones, 2018).
2.4. What are community and community-based practice-interventions?
As it was mentioned above, the community is one of the surrounding environments of children or youth that has an immediate impact on their development. Here, it is worth
noting the definition of the environment as it refers to the physical/build, social and community structures where we live (Imms et al., 2016; Hammel et al., 2008). WHO defines community as “a specific group of people, often living in a defined geographical area, who share a common culture, values and norms, are arranged in a social structure according to relationships which the community has developed over a period of time” (WHO, 1998, p. 5). WHO also adds that personal and social identity is given through the sharing of common beliefs and needs among the members of a community (WHO, 1998).
The literature emphasizes community practice, which are all the interventions placed in community settings and that meet the individual’s and families’ needs (Skaffa, 2014). Community-based practice includes many kinds of services such as prevention and health promotion, rehabilitation and habilitation and also medical care and service provision (Skaffa, 2014). As many different meanings have been given to the term community-based, McLeroy and colleagues (2003) discussed this term, noting that the most common definition of a community is proven to be the location for implementing interventions. These interventions can take place in neighborhoods, organizations, schools, and other community contexts.
There are two aspects of community-based programs: rehabilitation interventions and health promotion or prevention interventions (O’Neil et al., 2012). The goal of community-based rehabilitation is to empower individuals’ function to participate more independently in community activities (WHO, 2010). These programs are implemented to enable participation in leisure, recreation and sports activities for those children that have disabilities and facilitate their participation through encouraging mainstream programs or develop disability-specific programs (WHO, 2010). Regarding health promotion interventions, there are three strategies that therapists can follow: to give emphasis on health promotion resources and gather those that are available, to adapt programs or a whole environment to promote participation, or organize a health promotion program from scratch by developing, implementing and evaluating it (O’Neil et al., 2012). Rimmer stated that by reducing environmental barriers through the community-based health promotion programs, people with disabilities could participate in leisure and enjoyment activities, maintain their functional independence and improve their quality of life (Rimmer, 1999). For
the effectiveness of community-based programs, a good and trusting collaboration between therapists and community partners has to be created for their development and implementation (O’Neil et al., 2012).
2.4.1. Community-based interventions for recreation, leisure and sports activities
Following the ecological perspective, it is important to reflect on which level interventions will take place and what changes in other levels may occur. Community-based interventions, which are based on social ecology, do not place emphasis only on the behavioral or other functional changes, but to a broader goal of a healthy community (McLeroy et al., 2003). The levels of support in a social environment can contribute to better participation in leisure and recreational activities of children with neurodevelopmental and physical disabilities. Active community-based leisure programs have to have a holistic and up-to-date approach for health promotion and wellbeing to achieve an increase in children’s and adolescent’s participation (Fernandez et al., 2018).
The beginning and end of the community-based interventions is “participation” (Murphy & Rigg, 2014). Murphy and Rigg support that “through participation in daily life, in addition to social projects (e.g., mental health interventions) community members create a world” (Murphy & Rigg, 2014, p. 189). In order to achieve health goals, the community-level interventions come to modify contexts (environmental, socio-cultural etc.) that affect health in communities (Skaffa, 2014). The client-centered approach is one of the most crucial factors of community-based interventions by involving community members in the decision making of an intervention, identifying their needs, which further leads to the creation of effective services and promotion of participation (Murphy & Rigg, 2014; Skaffa, 2014).
In 2010, WHO explained the role of Community-Based Rehabilitation (CBR) programs, analyzing the important outcomes that can be produced for people with disabilities. These programs’ goal is to increase participation in leisure, recreation and sports activities by strengthening the existing programs to enable all people with or without disabilities (WHO, 2010). Some of the mentioned outcomes are the availability of programs in the local community, the appropriate modification and inclusion of equipment relevant for those who need them, and the inclusion of these people to a group of individuals with and without disabilities (WHO, 2010). Maxwell,
Alves and Granlund (2012) referred to the two aspects of participation that were analyzed in the fPRC framework, concerning the five environmental dimensions that presuppose a person’s participation (5 A’s). Indicatively, the first-mentioned dimension is the availability and is described in two ways, the availability of engaging in a situation, and the availability in facilities and resources. Authors also included the importance of accessibility in people’s lives in their different contexts. Affordability also has to be considered to its financial way and in terms of effort a person puts to be engaged. Accommodability can be as a synonymous to adaptability and referred to the adaptation of the environment when it is needed. The last ‘A’ is the acceptability of each person with himself/herself while also to be accepted from others. (Maxwell et al., 2012). Nonetheless, when the above are not met, people are restricted to their participation. In this case, there is a research gap of literature based on the children’s and youth’s participation in their leisure, recreational and sports community-based activities.
2.5. Research Gap
Taking into account all the above, participation in the community is paramount for children and adolescents. Although community-based interventions are undoubtedly effective for children’s leisure, recreational and sports participation, there is a research gap in the recent literature. In 2014, a systematic review was published, noting that there is a need for information regarding the effectiveness of community participation interventions for children with disabilities (Andrews, Falkmer & Girdler, 2014). Authors supported that there is room for developing programs and also for existing programs to be evaluated and adapted to facilitate recreational and leisure participation, to enhance children’s engagement and to be included in the community.
Along with the above, there is also a need not only to create support services for after-school activities in the community but also to take into consideration children’s experiences and satisfaction from these activities (Kaljača, Dučić & Cvijetić, 2019). It is found that although programs are trying to support the participation of children with disabilities in the community, therapists have to provide evidence-based services for their community-based interventions that will increase children’s satisfaction, health and wellbeing when they are participating in those activities (Shikako-Thomas, Majnemer, Law & Lach, 2008). In addition to supportive
community-based interventions, service providers have to put effort into planning activities to meet children’s needs and their preferences to fully participate (Law et al., 2006). It is important for children with disabilities to participate in social leisure activities and to have a sense of being included in the community with other children either typically developed or not (Kaljača, Dučić & Cvijetić, 2019). Kaljača and colleagues (2019) also mentioned that those after-school activities do not always focus on children’s activity preferences. They noted that if the focus was on those preferred activities, it is possible to see rapid results. Unfortunately, there are many barriers that children with disabilities still face, as there are not modified activities or environments to promote participation for them (Tint, Manghan & Weiss, 2016; Bedell et al., 2013).
2.6. Aim and Research Question
This systematic literature review aims to identify community-based interventions (group or individual) that are described as effective, and promote leisure, recreational and sport participation for children and youth with neurodevelopmental and physical disabilities aged 7-18.
1. What are the characteristics of community-based interventions described as effective concerning children’s attendance, involvement and performance in leisure, recreation and sports activities?
2. To what extent are community-based participation interventions-regarding leisure, recreation and sports activities-based on children’s preferences?
3. Method
3.1. Systematic literature review
A systematic literature review was conducted to identify recent studies of community-based interventions for children and youth with NDD and/or physical impairments. The systematic literature review contained six key phases (1. mapping the field through a scoping review, 2. comprehensive search, 3. quality assessment, 4. data extraction, 5. synthesis, and 6. write up) to identify, present and summarize the results from the studies relevant to the topic (Jesson, Matheson & Lacey, 2011).
3.2. Search procedure
Studies from 3 databases were collected during the period of the middle of January 2020 to the middle of February 2020. More analytically, the databases used were CINAHL, which is a full-text database in EBSCO and covers health sciences librarianship; ProQuest central, which is the largest single periodical resource available and gives more options for finding the needed articles including the subject areas; and, finally, PsycINFO, which is a ProQuest database mostly regarding psychological topics. Additionally, due to limited studies for answering the aim, data were also collected by a hand search. All searches were done by free search terms. In all databases, more than ten searches were conducted, as the first results that came up did not answer the aim and research questions. Different keywords and different word combinations were used before ending up with the final. Here is an example of the search terms that were used in the CINAHL database, while the rest of them are included in appendix 1. CINAHL: (community OR “community program” OR “community activity” AND recreation OR leisure OR sport* OR physical activit* AND participat* OR involve* OR engage* OR attend* AND disab* OR disorder OR sensory processing needs AND pediatric OR child* OR adolescent* OR youth AND intervention OR “intervention study” OR “community-based action research” NOT review) resulting in 50 articles. Furthermore, the symbols “..” were used for including words or phrases as they are written and the symbol * for varied results coming from the same words. Notably, the number of hits in each database came up after the restriction of full-text, peer-reviewed research articles and in the English language while also desired age (e.g., adolescents 13-17) and where there was as an option for year publication, all between the years 2000-2019.
3.3. Inclusion and exclusion criteria
Inclusion and exclusion criteria were selected based on the aim and research questions of this review. Regarding the population, because most of the studies referred to ages over 12, the final population age was individuals aged 7-18. Additionally, because of the limited results searching on children with NDD only, physical disabilities were added as an inclusion criterion. Finally, because few community-based group interventions were identified in trial searches, both group and individual interventions were included. Table 1 illustrates the final inclusion and exclusion criteria using the PICO strategy. PICO: P=children and youth with NDD and PD, I=community-based
interventions (group and individual), O=community participation in leisure, recreation and sports activities.
Table 1
Inclusion and exclusion criteria.
Inclusion criteria Exclusion criteria Population:
• Children and youth aged 7-18 but also lower or above if they have the mean age between the ages of 7-18
• Children with
neurodevelopmental disorders and physical disabilities (ID, ASD, ADHD, DCD, CP, spina bifida, communication disorders and each one if it co-occurs with another one)
Intervention:
• Community-based interventions both group (from 2 persons and over) or individual
• Community settings: schools, community non-profit
organizations, camps, wellness and fitness centers, daycare centers, early interventions centers, museums, playgrounds, leisure not structured activities in the community
• By certified professions (such as therapists: OTs, PTs) than can implement this type of
interventions Outcome:
• Describe the effects of community-based group interventions in recreational, leisure and sports participation:
o Increase of participation (attendance and/or involvement) in leisure, recreational and sports activities
o Increase in activity competence (capacity, capability, performance)
Population:
• Children without disability, with obesity, refugee and immigrant children
Intervention:
• Settings: home, institutions, hospitals
• Providers: any professional that is not certified in implementing interventions
Outcome:
• Interventions focused only on functioning (e.g. body strength, fine and gross motor, writing skills, etc.)
• Interventions focused on participation other than recreation, leisure and sports (education, activities of daily living such as bathing, eating, etc.)
o Increase of sense of self (future directed
perceptions) • Taking into consideration
children’s/adolescent’s preferences
• What the influence of age or gender (if there is)
Design:
• Quantitative research with pre-post measures
• Qualitative research
• Mixed method including an intervention
• Intervention-based studies • Case and pilot studies Publication type:
• Full-text articles in peer-reviewed journals • Published between the
years 2000-2019 • Published in English Design: • Literature reviews • Systematic reviews Publication type:
• Books, abstracts, conference papers, thesis
• Published before 2000
• Published in a language other than English
3.4. Screening process (Title and abstract level)
Articles from databases were imported to the Zotero online tool for the screening process (Zotero, 2017) to collect all results of the three databases. Two hundred eighty articles were imported from CINAHL, PsycINFO and ProQuest Central, while nine articles were automatically deleted as duplicates. For the 271 left articles, a title and abstract screening process were conducted by using an extraction protocol (see Appendix 2). Indicatively, the protocol helped to screen the articles as to whether they fulfilled the inclusion criteria. Subsequently, 235 articles were excluded because they were not based on children with NDD or PD (n=25), or were not based on an intervention (n=33), or had other approaches rather than community-based (n=41), or referred to children in other ages (n=21), or were studies about prevention (n=18), or did not focus on participation in leisure, recreation or sports activities (n=47), or did not include participation at all (n=41) and other articles were reviews, poster abstracts and out of the topic (n=30).
3.5. Screening process (Full-text reading) and Data extraction
The second process of the full-text screening was applied to 15 articles based on the inclusion and exclusion criteria. After this procedure, ten more articles were excluded because had many limitations (=3), not referred to the intervention locations in the community regarding leisure, recreational or sports activities (=5) and population’s age was not the expected (=2). The final five articles were transferred to the full-text extraction protocol, which is illustrated analytically in Appendix 3. Due to a lack of literature about the topic, one additional article was added through hand search. Data extraction was used for the final six articles using the following categories: 1) general information of the articles, 2) information about the participants and their characteristics, 3) interventions, 4) outcomes/findings, 5) study design, 6) methodology and analysis, 7) publication type, 8) conclusion, 9) practical/clinical implication and 10) studies’ limitations. The whole procedure until the final articles is presented in the flowchart (figure 1).
3.6. Quality assessment
Quality assessment of the final six articles was applied using the Critical Appraisal Skills Programme (CASP) checklists. Either quantitative or qualitative checklists were used with 12 and 10 quality criteria respectively (CASP, 2018) as illustrated in Appendix 4. The quality of articles was assessed by a summary score and converted to percentages (%) with below 60% of a maximum score being low quality, between 60-80% moderate quality and over 60-80% high quality. Two articles were found in high quality (study 1: 85% and study 6: 90%), three in moderate (study 2: 65%, study 4: 60%, study 5: 60%) and one in low quality (study 3: 50%). Because the number of articles is already small and the information and results that are presented are of utmost importance, the article with the low quality was not excluded.
Figure 1
Flowchart of the search procedure
PsychINFO (ProQuest) CINAHL with full text (EBSCOhost) ProQuest central (ProQuest)
Number: 204 Number: 50 Number: 26
Total: 280 Duplicates excluded: 9 Title and abstract screening process: 271 235 articles were excluded because:
- Not based on children with NDD or PD (=25) - Not based on
intervention (=33) - Other approach from community-based (=41) - Children in other ages to those included (=21) - Studies about prevention (=18) - Not focus on participation in leisure, recreational or sports activities (=47) - Did not include
participation at all (=41) - Reviews, posters, abstracts (=30) Full text screening process: 15 10 articles were excluded because:
- Had many limitations (=3) - No reference to the intervention locations in the community regarding leisure, recreational or sports activities (=5)
- Not expected age (=2)
Included articles: 5
Hand search: +1
3.7. Data analysis
The results of the final studies will be presented through narrative analysis to answer the two research questions. Indicatively, in order to synthesize findings from multiple studies, the narrative approach can focus on a range of research questions as this systematic literature review presents. Four are the basic steps of a narrative synthesis in systematic reviews; 1) developing a theory of how the intervention works, why and for whom, 2) developing a preliminary synthesis of findings of included studies, 3) exploring relationships in the data within and between studies and 4) assessing the robustness of the synthesis (Ryan, 2013). In the third stage of the narrative synthesis, the fPRC framework will be used to structure the results in order to explore similarities and differences in the elements of participation and factors that influence or are influenced by participation (Imms et al., 2016). More indicatively, studies’ results regarding the two elements of participation, attendance and involvement will be presented in the first category; where attendance can be seen measured by frequency of attending or by the range of activity diversity, and involvement through the elements of engagement, motivation and social connection. Regarding the intrinsic factors that influence or are influenced by participation, results can be analyzed in the categories of activity competence (capacity, capability, performance), sense of self (satisfaction, self-esteem, self-determination) and child’s preferences. Finally, the extrinsic factors will be analyzed as how changes in the social or physical environment can affect children’s participation (Imms et al., 2016).
4. Results
4.1. Overview of community-based interventions and initial description of the results
4.1.1. Participants
Six intervention studies fulfill the inclusion criteria presenting community-based interventions for children with NDD and/or PD. Regarding participants’ characteristics, four studies (1, 2, 5 and 6) were based on children with PD (CP and spina bifida), and the other two (3 and 4) on children with NDD (ID and ASD). The levels of disabilities that were included varied and most of them had a wide range of severity among the participants. More analytically, studies 2, 4, 5 and 6 included
participants from severe to mild levels of NDD or PD and only studies 1 and 2 focused on moderate and mild levels (Appendix 2, title: Participants and their characteristics).
4.1.2. Interventions
All included studies aimed to children’s and youth’s participation in leisure, recreational and sports activities considering also the elements that Maxwell and his colleagues (2012) support (availability, accessibility, accommodability/adaptability, acceptability and affordability) in their intervention process. Analytically, characteristics of interventions in studies 2 and 6 were based on finding available and accessible facilities by only adapting small parts of the environment. On the other hand, studies 1, 4 and 5 emphasized on the adaptation and modification of the environment to be accessible and available for the participants. Only one study focused on children’s acceptability (3), while almost none of the six studies considered the element of affordability except from study 2, which referred to the funding of the extra equipment that parents’ could not afford.
Regarding the studies’ approaches, four out of six of them based the interventions on the participant’s preferences-goals of where to take place. More precisely, studies 1, 2, 5 and 6 had as a goal to examine participation restriction in those community activities and plan the interventions in the different community structured or unstructured environments. The structure of the other two studies (3 and 4) was in specific community places for all participants. Indicatively, the intervention of study 3 took place on the YMCA fitness centers in order to increase the social interaction of children with ID and their typically developed partners. On the other hand, the intervention of study 4 took place on a local museum, where a specific event was organized every Sunday only for families that have children with sensory needs.
As all studies focused on children’s and/or youth’s participation, information on how participation used based on the fPRC framework (Imms et al., 2016), is relevant. In studies 1 and 3, participation was considered as the entry point (mean). On the other hand, studies 4, 5 and 6 used participation as an endpoint while in 5 and 6, some parts referred to participation as a mean. Finally, study 2 focused on participation both as an entry and endpoint.
4.1.3. Measurements
A varied number of measurements were conducted in each study for both providing useful background information before the implementation of the interventions and assessing interventions and their effects. Regarding the assessments that were used for the interventions and their effects, it is crucial to be mentioned in what extend they assess participation as attendance and involvement. In studies 1, 2 and 5, it was found that they used assessment tools that assess activity competence (performance) and sense of self in order to measure and evaluate results of participation. Furthermore, between attendance and involvement, studies 2, 3, 4 and 5 mainly measured the diversity and frequency of attendance and rarely the concept of involvement (only studies 4 and 6). Finally, in some studies, there were found some barriers of measurements’ administration. More precisely, in study 5, therapists used an assessment tool (CAPE) in order to assess children’s participation in 55 activities. However, up to 55 activities, pre-intervention results showed that participants completed no more than 26 of them, while one participant did not participate at all. Another barrier that study 2 presented was associated with the level of children’s disability. As participants could not rate their perception of performance, researchers included the parents of participants to fulfill the assessment.
4.1.4. Other relevant characteristics
Three studies were conducted in Australia and three in Canada. Three out of six interventions were individual-based (1, 5 and 6), two group-based (3 and 4), while one had both types (2). Five out of six interventions were accomplished by occupational therapists (1, 2, 4, 5 and 6), while in study 3, two certified fitness instructors carried out the intervention. The current review includes five intervention-based studies (1, 2, 3, 5 and 6) and a qualitative study, which also intervention-based on an intervention (4) in order to identify how those interventions described their effect. Finally, table 2 presents which number corresponds to each study and their key information, which is also respectively applicable to the extraction protocol (Appendix 3).
Table 2
ID Title of study Key information
1 The effectiveness of the Pathways and Resources for Engagement and Participation (PREP)
Strength based intervention - Enhance participation -
intervention: improving participation of adolescents with physical disabilities.
Remove environmental barriers
2 Optimizing leisure participation: a pilot intervention study for adolescents with physical impairments.
Individualized and goal focused interventions - Enable access and activity achievement
3 The feasibility of using a peer-guided model to enhance participation in community-based physical activity for youth with intellectual disability.
Inclusive community facility - Intervention through affecting the social context
4 Supporting Participation for Children With Sensory Processing Needs and Their Families: Community-Based Action Research
Special modified events - Community involvement
5 Improving the participation of youth with physical disabilities in community activities: An interrupted time series design.
Individualized and goal focused interventions - Change or enhance environment
6 Opening doors to participation of youth with physical disabilities: AN intervention study.
Environmental barriers and solution-based strategies * ID: Identification Number
4.2. Key elements of findings categorized into the “Family of participation-related constructs” (fPRC) framework domains.
4.2.1. Attendance & Involvement
Based on the fPRC framework (Imms et al., 2016) and the two vital elements of participation, attendance and involvement, the studies that reported change in children’s attendance and/or involvement after the intervention will be presented. In studies 1, 2 and 3 it was found that, although interventions’ goal was to foster and increase children’s and youth’s participation, no measurements were used to assess attendance and involvement before and after the intervention. Instead of this, measurements, such as Canadian Occupational Therapy Measure (COPM) that assesses performance (activity competence) and satisfaction (with the performance), were used in both studies (1 and 2) as tools for participation measurements. As a result, emphasis was given to children’s performance changes after the intervention process (1, 2) and how satisfied they were with their performance (2), factors that are categorized to the intrinsic factors. The only mentioned aspect of involvement was the motivation, which is a characteristic that was not associated with the intervention effects (1).
On the other hand, study 5 and 6 used the Children’s Assessment of Participation and Enjoyment (CAPE) and PEM-CY respectively, which both assess
the concept of participation. Indicatively, both study 5 and 6 assess the frequency of participation but none of them presented a significant improvement. In study 5, the average score of participation’s frequency remained relatively similar [participant 1 (P1) 3.6-3.9, (P2) 4.5-5.2, (P3) 4.2-4.4, (P5) 4.7-5.2 and (P6) 1.2-1.6] except form the P4, whose number dropped from 4.3 to 3.9. On the other study (6), it was found a small improvement, waved from 2.5 ranging 1.6 to 3.1, to 3.1 ranging 2.2 to 5.4 on a 7-point scale. However, the two studies differ in the diversity of activities. In study 5, the number of activities that youth participated dropped or remained the same. On the other hand, in study 6, the number of activities, in which youth participated, was presented by a mean average that increased by 13% (from 45% to 58%). Only study 6 measured the participants’ involvement where it was found almost no improvement (from 3.8 to 3.9).
The only study that presented a significant increase in attendance and involvement after the intervention was study 4, giving emphasis on how effectively the intervention was implemented. It is the only qualitative study that is included in this systematic review, presented the results through themes. As no participation measurements were used, aspects of attendance and involvement were presented in other ways. More precisely, parents noted that it was a strong motivation for the whole family to attend this type of leisure event. It was of utmost importance that positive experiences that families created enhanced the sense of well-being, an element of an active-meaningful engagement. Parents characterized this intervention as “successful”, as it gave their children and the whole family the opportunity to attend meaningful activities. Additionally, through parents’ statements, the influence this intervention had on the diversity of activities in which this family took part becomes very clear. A parent said: “We had a really good time. It’s hard to find things we can all do. We can’t go to the zoo or the amusement park”. Another aspect that was emphasized is the frequency of attending. Parents of this study claimed that it was difficult for them to stay long in museums during regular hours. After their experience in this museum, they stated: “I didn’t even think we would stay there that long.”…“We never stay anywhere for more than 45 minutes”. Parents also mentioned that the staff and occupational therapy students helped families to be involved in this leisure activity. Parents also stated how important it is for them that the staff understands children’s needs and manages the whole procedure, that they can feel safe, engage with and be involved in meaningful leisure activities in the museum.
4.2.2. Intrinsic factors that influence, and are influenced by participation
Following the intrinsic factors that influence and/or are influenced by participation, most of the included studies were based on the participants’ preferences and activity competence, specifically regarding children’s performance after the interventions.
The studies that based their intervention process on participants’ preferences were studies 1, 2, 5 and 6. The COPM was used in those four studies to identify that meaningful leisure, recreational or sports activities that children wanted to participate and identify their effect after the intervention. Additionally, studies presented an overall increase in the performance scale after the implementation of each intervention. Indicatively, it was found that in study 1, 59% of the activities had increased by 2 to 3 points. Additionally, after the intervention, measurements were accomplished twice a week and showed a small but statistically significant increase of performance by 0.08 points over in every COPM assessment. Another follow-up that took place in study 1 was in 20 weeks of post-intervention with an increase becoming evident by 0.66 points on COPM, while participants maintained their performance level.
Similar results were also observed in studies 2, 5 and 6 where both performance and satisfaction were measured. Regarding the performance scores, it was found an increase in all participants except from two studies (2 and 6). In study 2, three out of eight participants scored no changes of performance while in study 6, two out of six participants had no significant performance score with the proportion be calculated below the celeration line. With +2-point representing a clinically significant change in COPM, participants of study 2, 5 and 6 scored significant points. More analytically, in study 2, five out of eight participants scored +0.5, +2, +5.5, +1.33, +4.5 each one, in study 5, the lowest of a performance score increased by +2 for P1 and the greatest by +7.6 for P6. In study 6, the mean score of performance was 4.5, with statistically significant changes in activities/goals (76%).
Regarding the satisfaction scale of COPM (how participants were satisfied with their performance), scores of study 2, 5 and 6 were also significant. In study 2, six out of eight participants had an increase with scores being +3.5, +1, +3.5, +1, +2.33 and +0.5, while in study 5, the lowest score of satisfaction increase was +2 for P3 and the most significant +9 for P4. Authors of study 5 notably mentioned that P4 succeeded in scoring, for both average of performance and satisfaction rating the highest score of 10.0 in the follow-up process. Additionally, in the same study, it was
noted that, despite that two participants faced problems with the implementation of their goals, the performance rating of all participants was over the baseline for all goals. Except for measuring children’s satisfaction with their performance, study 5 and 6 applied measurements to the parents of the participants in order to assess how they were satisfied with the intervention itself. In both studies, parents filled a questionnaire (Client Satisfaction Questionnaire for study 5 and CSQ-8 for study 6) with scores being increased. In study 5 it was found that their children “improved participation in the local community, saved time, decreased frustration, an appreciation of focusing on leisure rather than more ‘traditional’ interventions, and a sense of empowerment to be able to advocate for their children” (p. 110). Similar results were also found in study 6 where with the use of CSQ-8, high intervention satisfaction was noted, with the mean score being 3.5 out of 4. Results of the same study end by noting the two out of five quality-of-life domains showing improvement, autonomy and well-being, with scores from 38.7 to 46.5 and from 35.5 to 39.1, respectively.
The two remaining studies were based on structured interventions in specific places for all participants, so the COPM was not used for the identification of preferred activities and to assess their performance and satisfaction. The intervention of study 3 was based on an inclusive community facility, and specifically on the YMCA fitness centers (see table 2 for intervention details). Results of this study showed that youth with ID were highly satisfied with the program, with 94% noting that they had learned new experiences, 94% made friends. At the same time, they were very satisfied realizing that they were feeling healthier and fitter (83%) through participating in this program. 72% of youth also expressed their future-directed perceptions of participating in this program, if they were ever given this opportunity again.
Regarding the typically developed youth partners, they were also very satisfied with the program noting that they would not change anything in the activity. 93% of them answered that they had gained new experiences, while all of them (100%) stated that they had made new friends. In contrast to youth with ID, the percentage of partners feeling healthier and fitter with this program was smaller (64%). Parents of youth with ID were also asked to answer how satisfied they were with this program, with 91% indicating that they would enroll their child again, while 100% said that they would recommend it to others, as it was well coordinated and
organized. Parents also expressed their satisfaction about their child’s experience partner (70%), the level of exercises (91%) and the provided assistance (82%), as well as the whole facilities that the fitness center provided (82%). Finally, parents stated that the factors that were further influenced by children’s participation in this program were also performance, capacity and capability (fitness level 100%, learned new exercises and activities 73%, learned to use YMCA facility 64%), and sense of self (self-esteem and confidence 45%, increased motivation 45%).
In study 4, results were actually based on the extrinsic factors that influenced participants’ participation, but they notably mentioned some aspects of the results regarding the satisfaction of families after their experience at the museum. Indicatively, most themes of the study analysis emerged due to the positive family experiences after attending the museum’s event. The families mentioned that they perceived the success of their visit and the intense feelings that their children had at the events.
4.2.3. Extrinsic factors that influence participation
The final part of the results is extrinsic factors that influence children’s and youth’s participation in leisure, recreational and sports activities directly, both in the social and physical environment. In order to increase participation, most of the studies based their intervention on modifying the environment of the child or find appropriate and accessible environments, enhancing them only with appropriate equipment when it was required. Table 3 presents the interventions’ approaches and where they took place. Studies with (*) are those based on children’s preferences for the location of interventions’ implementation.
Table 3
Studies Environmental modifications or identification of accessible resources *1. Modifications were not specified. Preferred activities: boccia, sledge hockey,
dance classes, going to the mall with friends, walking the dog, ride a bike. *2. 1) Supply of equipment, 2) Investigation of a community program, 3)
Support family to apply for grants for a vehicle, 4) Locate swimming centers, 5) Investigation of community programs (art and sports), 6) Provide access ramps, 7) Investigation of community youth programs and gym
The goal of all used approaches aimed to enhance children’s participation in the community and not change aspects of a child’s body function. Study 1, 4, 5 and 6 focused on removing the environmental barriers, modifying them in order to be accessible and available for those children. In study 1, although results do not describe the specific modification strategies, all the already-mentioned results in these different factors were results derived from environmental modifications. On the other hand, in study 6, results showed that the number of barriers and supports remained relatively similar by 2.0 to 2.4 and 4.6 to 5.2, respectively.
Results from study 4 were also remarkable as only positive outcomes presented through applying this intervention. Indicatively, results showed how necessary the adjustment of the museum was in order to be accessible and appropriate for children and youth with sensory-processing needs and promote their participation. This community-based intervention allowed many families to participate in that kind of leisure time as it was analyzed earlier. Many positive comments of families were about the adjustment of the sensory environment, as they noted how important it is for them, leading to successful experiences for the whole family. Half of the participants, 27 out of 46 parents, mentioned how they appreciated the exhibition of the Sensory-Friendly Sunday events using the auditory and visual sensations. Additionally, half of
3. Access to a structured YMCA fitness center affecting the social context. 4. 1) Modification of exhibit features to reduce sensory stimulation loud sounds
and flashing lights in certain exhibits, 2) Sensory accessibility maps, sunglasses, headphones, therapy putty, 3) Cool-down space with therapy balls, mats, and muted lighting
*5. Some of the examples that study provides: 1) Identification of accessible basketball courts, 2) Identification of potential organizations that would organize wheelchair baseball, 3) Selection of appropriate equipment based on participant’s needs (appropriate bike)
*6. Examples that study provides: 1) Adaptation of physical education program, 2) Identification of accessible appropriate pricing, 3) Review of accessibility of football programs/stadium, 4) Adaptation of boat by using straps, 5) Adaptation of bike/boccia equipment, 6) Identification of accessible bowling alleys to practice alternate boccia, 7) Identification of inclusive arts and dance organizations, 8) Requests for transportation services for swimming lessons, 9) Identification of yoga classes fitting to participant’s ability/level of experience, 10) Identification of available boccia associations, 11) Adaptation of activities with high-visibility props
the parents mentioned the importance of the cool-down room; as some claimed: “the cool-down room was the reason we were able to stay so long” and “…indicating that by merely knowing it was available, their comfort level increased” (p.6).
Another extrinsic factor that was found was the approach that study 2 followed, as therapists and participants worked together to find those sports and recreational activities that are appropriate and accessible for them. Furthermore, both in study 2 and 5, the intervention plan included the enhancement of the already existing supportive environments, modifying only some parts with appropriate equipment that would successfully help children’s and youth’s access. As a consequence, all the results mentioned above of study 5 regarding participation, were the result of these modifications. On the other hand, although positive results came up after the intervention of study 2 (based on the above subcategories), five goals were not achieved due to environmental factors that could not be altered. More analytically, the sporting activity that an adolescent wanted to participate was not available; there was a lack of available personal support for accessing the activity, and the adolescent’s skills were lacking for this activity. Additionally, some other participants faced problems with the funding of the extra equipment and the prerequisite adaptations while one adolescent had a surgery that restricted his participation.
Finally, study 3 was the only study that was based on the social context of children with ID in order to increase their participation in a community-based inclusive facility. As a consequence, results showed the positive impact that social environment had on participation, both on participants with ID and their partners; this information has already been mentioned in the two above categories.
4.3. Assessing robustness of studies and synthesis
As mentioned in the methodology part, each study was independently evaluated of the overall quality of the research with the use of the CASP checklists (CASP, 2018). The results of assessment are presented in the methodology of this review, with five out of six studies found in moderate to high quality and only one in low. The study in low quality was not excluded from this review as the number of included studies was limited and it was the only study that gave relevant information of children’s social environment intervention. None of the six articles included a control group in order to present significant effects and increase the possibility of avoiding erroneous conclusions. However, their extensive analysis of their results contributed to their
description of their effectiveness. Additionally, the methodological procedures of all studies were analytically described considering also the ethical aspects. Furthermore, trustworthiness can be noted in both included studies and the synthesis of results in this systematic literature review. Indicatively, all studies provided adequate information without identifying discrepancies and uncertainties on the interventions. As a result, synthesis was conducted in an easier manner and categorized with the use of a theoretical framework. A further discussion of the mentioned results in relation to the theory is presented below, emphasizing on relevant aspects that came up.
5. Discussion
5.1. Description of overall results
This systematic literature review identified six articles satisfying the inclusion criteria. Both community-based interventions that were focused on one specific place and interventions that were based on the participant’s goals can characterize the current studies. Results, of both moderate and high quality, show that the community-based interventions to participants’ promotion of leisure, recreational and sports participation have a generally effective outcome. However, looking deeper into the results based on the two concepts of participation, one can observe small changes of improvement. Additionally, all interventions were based on the participant’s preferences except for the two (3, 4) that were more specified in a location. Another essential characteristic of all studies was the modification of the environment or the exploration of an already accessible environment, enhancing them with appropriate equipment. Both approaches referred to children’s participation, whether this was used as an entry point or outcome of an intervention. Here, it is crucial to specify the domains these interventions took place in, although all studies aimed to increase children’s participation; three out of six studies (1, 2, 6) presented changes only in participants’ activity competence leading to a further discussion (see appendix 3, title: intervention focuses). It was also observed that studies took place in Australia and Canada that may affect the generalizability of the presented interventions in the domains of culture, intervention approaches and needs.
5.2. Participants
The main requirement of this review was to include participants diagnosed with NDD and PD. As there is a massive range of the severity of each disability, it is crucial to
