I Want to Play: Children With Cerebral Palsy Talk About Their Experiences on Barriers and Facilitators to Participation in Leisure Activities : Pediatric Physical Therapy

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I Want to Play: Children With Cerebral Palsy Talk About Their Experiences on Barriers and Facilitators to Participation in Leisure Activities

Longo, Egmar PhD; Regalado, Isabelly Cristina Rodrigues MSc; Galvão, Elida Rayane Viana Pinheiro MSc; Ferreira, Haryelle Nárima Confessor MSc; Badia, Marta PhD; Baz, Begonã Orgaz PhD

Author Information

Department of Health of Children (Dr Longo), Graduate Program in Rehabilitation Sciences (Ms Galvão), and Graduate Program in Public Health (Ms Ferreira), Federal University of Rio Grande do Norte, Santa Cruz, Brazil; Graduate Program of Physiotherapy (Ms Regalado), Federal University of Rio Grande do Norte, Natal, Brazil; Institute on Community Integration (INICO), Faculty of Psychology (Dr Badia), University of Salamanca, Salamanca, Spain; Faculty of Psychology (Dr Baz), University of Salamanca, Salamanca, Spain.

Correspondence: Egmar Longo, PhD, Department of Health of Children, Federal University of Rio Grande do Norte—UFRN/FACISA, Rua Vila Trairi, S/N, Santa Cruz, RN, 59200-000, Brazil ([email protected]).

The authors declare no conflicts of interest.

Pediatric Physical Therapy 32(3):p 190-200, July 2020. | DOI: 10.1097/PEP.0000000000000719
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Purpose: 

To explore how children with cerebral palsy (CP) experience participation in leisure activities and to describe the environmental barriers and facilitators.

Methods: 

Sixteen children with cerebral palsy aged 7 to 17 years participated in 3 focus groups. Data were analyzed thematically by 3 researchers on the basis of the International Classification of Functioning, Disability and Health.

Results: 

A total of 38 International Classification of Functioning, Disability and Health categories were identified (4 linked to Body functions; 2 linked to Body structures; 8 linked to Activities & Participation, and 24 to Environmental factors: 10 facilitators and 14 barriers). The most mentioned categories were Voluntary movement control functions, Functions related to gait pattern, Structure of upper arm, Recreation and leisure, Nuclear family and finally, and Individual attitudes of acquaintances.

Conclusions: 

The main barriers identified by children with cerebral palsy highlight aspects of the physical, social, and attitudinal environment that could be modified to enhance participation in leisure activities.

INTRODUCTION

Cerebral palsy (CP) is the most common cause of disability in children, and it is estimated that there were 400 000 people living with CP in the European Union before its recent enlargement, with 10 000 new cases occurring each year.1 Because of their motor problems, children and adolescents with CP experience participation restrictions and physical activity limitations.2,3 Participation constitutes a core concept related to health and disease, ability, and disability within the framework of the World Health Organization's International Classification of Functioning, Disability and Health (ICF).4

The concept of participation reflects the extent of engagement in the full range of activities that accomplish a larger goal.5 The factors that influence participation include the child's aspects such as age and complexity of his or her health condition; family factors such as income and family function; and environmental factors such as resources and supports.6 When these factors have a positive influence on an individual's participation, they are facilitators, and when they have a negative influence, they are barriers. In the ICF model, participation restrictions are viewed as the results of dynamic interactions between a person and his or her environment, rather than solely as the result of his or her health condition or impaired body function and structure.7

Participation in leisure activities provides children with opportunities for enjoyment, relaxation, recreation, self-enrichment, and goal achievement. Moreover, leisure is of central importance for building children's competence, self-determination, and identity, as well as for social and personality development.8–11 Participation in meaningful leisure activities correlates with children's well-being12 and quality of life (QoL).10 Studies conducted in the United States, Europe, and Canada have demonstrated that environmental factors impact the participation of children who have disabilities.13–15 The environment can serve as an affective target of intervention extending beyond physical accessibility or the built environment and includes other modifiable aspects such as attitudinal, social, and institutional factors.16 The current perspective of intervention for people with CP focuses on promoting participation in leisure activities, because this variable has become a strong indicator of good levels, because high levels of participation indicate high QoL and health.17,18

Spanish children who have CP have low diversity and intensity of participation in leisure activities, although they enjoy very much or love the activities they participate in.3,19,20 According to the parents, the main barriers to participation in the Spanish context are products and technology (eg, adapted toilet, communication aids, smooth pavements in town services), systems and policies (eg, parent support groups in area, special staff help child in school), support and relationships (eg, emotional support from family members), and attitudes (eg, child encouraged to reach potential from classmates).17,21,22 Parents' perceptions reinforce the importance of considering environmental factors that negatively interfere in the QoL and social inclusion of children with disabilities.21–23

Including children with disabilities in participatory research is a growing trend in countries in Europe and North America,24–26 in following Article 12 of the UN Convention on the Rights of the Child, which states that children's views must be taken into account in all matters concerning them, and Article 7 of the 2006 UN Convention on the Rights of Persons with Disabilities, which emphasizes the right of children with disabilities to express their views. Parents of children with chronic diseases rated their children as worse in QoL than their own.27,28 Therefore, relying only on parents' perceptions may not be sufficient, reinforcing the importance of listening to the voices of children and adolescents with CP regarding their own perception of participation in leisure activities.

Qualitative research facilitates information capture and is sensitive to context variations, enabling the child to express information as well as his or her individual and actual needs. This model enables the researcher to know the reality of each child and to define viable goals to improve his or her participation levels and QoL.25,29

This is the first article that considers the opinions of Spanish children with CP regarding their participation in leisure activities. The study explores how children and adolescents with CP experience participation in leisure activities and to identify facilitators as well as issues or barriers affecting participation.

METHODS

This was a descriptive study using qualitative methods.30 Focus groups explored the level of participation in leisure activities among children with CP. The goal was to draw out their specific experiences of what helped and what hindered their participation in leisure activities for children with CP in order to inform practice and future research. The focus group method takes advantage of group interaction to encourage discussion between the participants to compare and contrast their experiences.31 It provided a free and relaxed format for the children to express their views.

Ethical approval for the study was obtained from the Bioethical Committee of the University of Salamanca. Written informed consent was obtained from parents and from children aged 12 years and older. Children and parents were assured that all necessary privacy measures would be taken during the use and storage of their data.

This research is part of the Children's Assessment of Participation and Enjoyment (CAPE) study, which evaluated the psychometric properties of the Spanish version of the CAPE questionnaire and described the participation levels of children and adolescents with CP in Spain. Full details are published.22,32 The CAPE study included 199 children and adolescents with CP and 199 without CP, between 8 and 18 years of age, from 7 regions in Spain. The Spanish version of the CAPE questionnaire discriminated children and adolescents with CP from those without any disability in the results of participation.32

Participants

Children and adolescents between 7 and 17 years of age with CP were approached to participate. The selection was made from a convenience sample of children and adolescents with CP from the CAPE validation study in Spain. A purposeful sampling strategy was used where cases met the following inclusion criteria: (1) children and adolescents diagnosed with CP; (2) aged 7 to 18 years; (3) currently attending a regular or integrated classroom; and (4) could communicate verbally or use an alternative communication system.

All Spanish Confederation of Organizations and Associations for the Care for people with Cerebral Palsy and Related Disabilities (ASPACE) centers in the 7 autonomous communities involved in the previous study were contacted, and 3 focus groups were then formed using the criteria. Each focus group included 5 to 6 participants of both genders who were grouped by age to facilitate discussion (1 with 6 and 2 with 5 participants).

Setting

The ASPACE is a nongovernmental organization that provides support services for children with CP and their families. It is the most representative organization in all regions of Spain where children receive educational and rehabilitation support in a nonclinical/hospital context. Two groups were held in ASPACE Cordoba (Andalucia), and 1 in ASPACE Avila (Castilla and Leon).

Sample Size

The sample size was determined by data saturation. The concept of “saturation” refers to the point during data collection when the linkages among the qualitative data of 3 consecutive focus groups have no more than 5% additional new second-level ICF categories compared with previous focus groups. Recent research has used this definition of saturation when analyzing functioning in children with CP using qualitative research methods.33

Procedure

The focus groups took place in a comfortable room in each ASPACE center, lasting between 45 and 60 minutes, plus a 15-minute break. An experienced and previously trained external moderator conducted the focus groups with assistance from one of the researchers. A member of the staff (the psychologist or the social worker) was present in each group to engage the participants, to support the moderator, and to satisfy health and safety requirements.

The interviewer used open-ended questions such as: “In which leisure activities have you participated in the last month/4 weeks, apart from the ones that you have done with ASPACE, with whom and where did you do it, and did you enjoy them?”; “What other leisure activities would you like to do?”; “Which things are an obstacle for you and what things make your participation easier in leisure activities?”; and “If it were possible, what would you change to improve your participation?” The moderator also made notes following each group.

The intellectual ability information was obtained from the psychological records of the ASPACE center where the children or adolescents received services. A psychologist reported on each child considering the following criteria for intellectual impairment: none or mild (IQ: >70), moderate (IQ: 50-70), and severe (IQ: <50).

Data Analysis

The ICF was used as a reference for data analysis through the linking process of qualitative data based on the rules proposed by Cieza et al.34 This methodology has been updated twice35,36 and is widely disseminated in the literature.37–40

Five components of functioning are included in the ICF classification: (1) Body Functions; (2) Body Structures; (3) Activities and Participation; (4) Environmental Factors; and (5) Personal Factors. These components consist of chapters with hierarchical ICF categories as the classification units. An alphanumeric code is assigned to each ICF category: this is a letter representing the classification component (b: Body Functions; s: Body Structures; d: Activities and Participation; and e: Environmental Factors), followed by a number that represents the chapter (i.e., d4), and followed by the second-level specification (ie, d410).

All focus groups were audiotaped and transcribed verbatim. All transcriptions were carried out by an external research assistant and checked for quality by 2 members of the research team. Four ICF-trained physical therapists read the transcriptions several times and the texts were collated to enable qualitative analysis. The content analysis approach was used.41 This analysis ensured identifying narratives referring to the categories established in the ICF. These findings were organized by ICF components and linked to the ICF categories according to established linking rules.35 The 4 coders conducted this process independently.

If a concept was not contained in the ICF classification, this concept was assigned as “not covered.” Some concepts were called “personal factors” according to the definition of the ICF, which is also a component of contextual factors. One example that could be linked to personal factors was the concept “motivation.” A concept related to health condition such as “cerebral palsy or seizures” was linked to “health condition.” Consensus between the 4 links was used to decide which specific ICF category should be linked to each concept. Disagreement between the 4 links was resolved by unanimous decision after discussion.

Data Quality

Credibility of the data was enhanced by having 4 researchers independently code and interpret the data, providing a basis for reflective discussions that helped validate the linking process.29

RESULTS

Sixteen children and adolescents aged 7 to 17 years who have CP distributed at all Gross Motor Function Classification System (GMFCS) levels and who resided in 2 regions in Spain participated in the study. Most of them did not show intellectual impairment and all children attended regular school (Table 1).

TABLE 1 - Characteristics of the Sample of Children and Adolescents With CPa
Child Gender Age, y CP Type GMFCS Intellectual Disability
1 F 7 Spastic unilateral GMFCS I None
2 F 9 Spastic unilateral GMFCS I None
3 M 9 Spastic bilateral GMFCS II None
4 M 9 Spastic bilateral GMFCS IV Mild
5 F 9 Spastic unilateral GMFCS I Mild
6 F 10 Spastic bilateral GMFCS III Mild
7 M 10 Spastic unilateral GMFCS I Mild
8 F 10 Spastic unilateral GMFCS I None
9 F 11 Dyskinectic GMFCS IV None
10 F 12 Spastic unilateral GMFCS I Mild
11 M 13 Spastic bilateral GMFCS II None
12 M 14 Spastic bilateral GMFCS V Mild
13 F 14 Spastic unilateral GMFCS I None
14 M 14 Spastic bilateral GMFCS IV None
15 F 16 Spastic bilateral GMFCS IV None
16 M 17 Spastic bilateral GMFCS III None
Abbreviations: CP, cerebral palsy; F, female; GMFCS, Gross Motor Function Classification System; M, male.
aAll of the students were in regular school.

A total of 38 ICF categories were identified in the focus groups [4 linked to Body functions; 2 linked to Body structures; 8 linked to Activities and Participation; and 24 linked to Environmental factors/facilitators (10) and barriers (14)]. Table 2 shows the second-level categories identified for the ICF domains as well as the citation frequencies and percentages of these categories identified in the children's speeches.

TABLE 2 - Examples of Quotes and Categories Identified for the International Classification of Functioning, Disability and Health (ICF) Domains and Citation Frequencies
Domains ICF Categories Quotes Number Mentioning the Respective ICF Category %
Body Functions (b) b735 Muscle tone functions “I would change my “twisted” foot for a “straight” one ....” 1 12.5
b760 Control of voluntary movement functions “I would change my hands, because I caní catch, caní hold things properly ....” 3 37.5
b765 Involuntary movement functions “I wish I could have more balance ... to have somewhere to lean on, I lean on the wall to play or I kneel, because I don't have much balance ....” 1 12.5
b770 Gait pattern functions “I would like to be able to walk by myself ....” 3 37.5
Total number mentioned 8 100
Body Structures (s) s730 Structure of upper extremity “I would change one of my hands, to make things better, for example, while practicing archery, as I need to hold the bow and the string to shot the arrow ....” 7 53.8
s750 Structure of lower extremity “I would change my legs, so that I could walk better and would no longer need the wheelchair ....” 6 46.2
Total number mentioned 13 100
Activities and Participation (d) d220 Undertaking multiple tasks “I attended to a Farewell Party at my school, I've had such a great time that I miss that day...There was some music, we danced, it was fantastic.” 2 2.9
d440 fine hand use “I've also played with the play station, alone at home, I love it” 2 2.9
d450 Walking “I'd like to be walking already, so I wouldn't need the wheelchair.” 2 2.9
d460 Moving around in different locations “Going for a walk with my relatives here in Ávila, I enjoyed it a lot.” 1 1.5
d620 Acquisition of good and services “I'd like to buy gifts for my family when it's someone's birthday or doing something without them knowing it, as I always have to go with them ....” 3 4.4
d820 School education “I've played ... I've gone with the school, with my teacher ....” 1 1.5
d920 Recreation and leisure “I've been to the swimming pool with my father, there were more people there, some colleagues. I liked it very much.” 55 80.9
d940 Human rights “Man to you in school was not that they didn't let you play because they said you were running slow and that and that they fell because they tripped over the Walker.” 2 2.9
Total number mentioned 68 100
Environmental Factors (e) Facilitators
e120+ Products and technology for personal indoor and outdoor mobility and transportation “It makes it easy for me to go up the elevator.” 1 3.6
e140+ Products and technology for culture, recreation, and sports “For example, I play soccer, it makes it easy for me to play it as I can use the walker.” 3 10.7
Barriers
e110− Products or substances for personal consumption “I would change the medical treatment itself, so that they'd stop giving me injections, with this toxin thing ... that I have to ‘stay at home ... itś so boring ....” 1 1.6
e115− Products and technology for personal use in daily living “I've been to Natura with my fellows and as there were very bad ramps, I had to climb them by using the control and holding myself from the back, then there was this curb that had no ramp.” 1 1.6
e120− Products and technology for personal indoor and outdoor mobility and transportation “I wanted that the cars were a bit lower so that it wouldn't be so difficult for the people with disabilities to go inside them.” 6 9.7
e140− Products and technology for culture, recreation, and sport “When I go to the playground, I have to climb the stairs ...as there's no elevator there ....” 2 3.2
e150− Design, construction and building products and technology of buildings for public use “I don't know ... at my school there's no escalator ... and I get myself tired when I have to go to my classroom, as it is on the 2nd floor .... So, it would make it easier for me if there was an escalator....” 8 12.9
Facilitators
e310+ Immediate family “My parents do my exercises.” 2 7.1
e315+ Extended family “I play with my aunts and with my uncle.” 2 7.1
e320+ Friends “Well, as to me, my new schoolmates, well they said that I could not play soccer because they didn't know me yet, and they thought that I was going to play with bad intentions.” 2 7.1
e360+ Other professionals “I played ... and I went with the school ... with my teacher....” 2 7.1
Barriers
e325− Acquaintances, peers, colleagues, neighbors, and community members “Once, at school I tried to talk to some classmates and they said things that got me upset ....” 2 3.2
e330− People in positions of authority “I tried to talk to the coordinator about that but then, the bell rang, so that's why I couldn't do it .... That affects me, I feel very sad about that ....” 3 4.8
e340− Personal care providers and personal assistants “At school, during the physical education class, our teacher—I don't know about yours—but our teacher she only cares about what the other kids can do, it seems that she doesn't see my condition, then she says: “You, sit down here!” 1 1.6
Facilitators
e410 + individual attitudes of immediate family members “Going for a walk with my relatives here in Ávila, I enjoyed it a lot.” 9 32.1
e425+ Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members “I sometimes play with my friends. I have some people who live near me, they go to my house and from there we go to the park.” 2 7.1
e430+ Individual attitudes of people in positions of authority “On the other hand, on Arts, I have a very good teacher, and I yes, I can trust her, because when I had to do the exam, I couldn't draw very well because of my hands, so she prepared me an oral exam ....” 1 3.6
Barriers
e420− Individual attitudes of friends “They make fun of me, I don't know why, they say I am like a frog and they make fun of the way I speak they say that I have like “duck's foot”, I feel terrible ....” 1 1.6
e425− Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members “My schoolmates they didn't let me play with them.” 27 43.5
e430− Individual attitudes of people in positions of authority “At school, during the physical education class, our teacher—I don't know about yours—but our teacher she only cares about what the other kids can do, it seems that she doesn't see my condition, then she says: “You, sit down here! ... because you can not do that!” 4 6.5
e445− Individual attitudes of strangers “As they (children) also make fun of me, well, I would tell them not to do it, because that hurts...” 3 4.8
Facilitators
e580+ Health services, systems and policies “I got operated in Murcia, the Russian doctors, it helped me to get more balance with my feet. It helps me when I am alone with my brother, to kick the ball.” 4 14.3
Barriers
e580− Health services, systems and policies “Me, since I was a child I've had to be going to see the doctors, to be undergoing thru medical treatments, it's always the same ... I'm sick of this ... the same room ....” 2 3.2
e585− Education and training services, systems, and policies “I don't know ... at my school there's no escalator ... and I get myself tired when I have to go to my classroom, as it is on the 2nd floor .... So, it would make it easier for me if there was an escalator ....” 1 1.6
Total number mentioned: Facilitators 28 100
Total number mentioned: Barriers 62 100
Abbreviation: ICF, International Classification of Functioning, Disability and Health.

The most cited categories in the functions and structure of the body domains were b760 (Control of voluntary movement functions), b770 (Gait pattern functions), and s730 (Structure of upper extremity). Regarding Activities and Participation, the most mentioned category was the d920 (Recreation and leisure), and e410 in the Environmental Factors category, while individual attitude of immediate family members was the most mentioned facilitator, whereas category e425 (individual attitudes of acquaintances, peers, colleagues, neighbors, and community members) was the most cited barrier for children.

Themes are outlined later with illustrative citations included from the children's and adolescents' responses. They have been grouped into ICF categories approaching experiences and perspectives of participation in leisure activities in children and adolescents with CP.

Function and Body Structure

When asked what they would like to change in order to improve participation in leisure activities, the children mentioned the structure of their hands and legs, tremor, movement control, muscle tone, and balance. Such desires, expressed in the following children's statements, highlight the search for change in their physical aspect: “I wanted to change my foot, my hand, and all the left part of my body ... I would definitely change those ...” (child 2, female, 9 years, GMFCS I). “I would change my ‘twisted’ foot for a ‘straight’ one. ... Some people make fun of me because of the way I walk ... I wish that wouldn't happen ...” (child 13, 14 years, female, GMFCS I). Other children mentioned “I don't know ... I would change my leg so that I could go everywhere ... and I wouldn't hear from people that I can't play with them during recess, anymore ...?” (Child 3, male, 9 years, GMFCS II.)

Another child showed interest in modifying one of his hands to better participate in leisure activities: “I would change one of my hands to make things better, for example, while practicing archery, as I need to hold the bow and the string to shoot the arrow ... and that takes a lot of effort from me, well ... so I would change my hand ...” (child 12, male, 14 years, GMFCS V). Likewise, the following child wanted a structural change to facilitate participation in sports activities: “I would change my legs, so that I could run, I could play, could play basketball, and could practice all the sports that my brother does ...” (child 11, male, 13 years, GMFCS II).

The following child expressed her wish to change the structure of her legs, so she wouldn't need a wheelchair for locomotion: “I would change my legs, because I think it's better to walk by yourself than to go places using a wheelchair ... I could do so many more things.... And with these new legs I wouldn't be so dependent on people ...” (child 15, female, 16 years, GMFCS IV).

Activities and Participation

The activities and participation mentioned by the children pointed out their desires to perform simple tasks of daily life as being autonomous to make decisions, to buy, to walk, and so forth. The following child wanted to be able to buy something independently: “I'd like to buy gifts for my family when it's someone's birthday or do something without them knowing about it, as I always have to go places with them ...” (child 1, female, 7 years, GMFCS I). Similarly, another child demonstrated the simple desire to be more autonomous and to be able to take a walk in her neighborhood independently: “going for a walk by myself, but I can't” (child 5, male, 9 years, GMFCS I).

Regarding leisure activities, the children were involved in a wide range of activities such as skiing: “I spent a week in Andorra skiing with my father, my mother, my brother and some friends. I had a great time, because I was able to stand on the skis and I could ski a little bit. It was the first time that I skied. I had been there a few times before, but my father always had to hold me. But this time the instructor was by my side with a ski stick, and I was skiing by myself, so I was very happy” (child 11, male, 13 years, GMFCS II).

Practicing sports, games, socialization, and activities related to art and culture was also reported as a leisure option that provided joy: “I practiced rhythmic gymnastics on Mondays at the Arangule and on Wednesdays at San Antonio. I loved it” (child 2, female, 9 years, GMFCS I). Another child reported participating in weekend trips and going to the movies with friends: “I went with the people from here to the village .... They were the village Fiesta Days, and I had a very good time. I went to the movies with my cousin and with Carlos, I had a good time” (child 15, female, 16 years, GMFCS IV).

Most children reported that they enjoyed playing computer games and books, which were the most sited leisure activities in this study. The following child's speech demonstrates this reality, also observed in other children in the study: “and nothing else, and also, in my spare time, besides playing PSP and going by taxi, I like watching movies and reading books and comics. Because I've read many Tintin comics, for example, I enjoy reading them very much” (child 12, 14 years, male, GMFCS V).

Environmental Factors

The environmental factors expressed in terms of barriers and facilitators were the most cited by the children in the study, as expressed by the following child: “For me, I think that to improve my participation in activities, for example, I play basketball, so, I wanted the basket to be in a lower place” (child 12, male, 14 years, GMFCS V). Another child stressed the importance of electric mobility to help during soccer practice: “For me the electric wheelchair helped me a lot to go around by myself, to play soccer, because I can play soccer sometimes catching the ball with the chair, yeah” (child 12, male, 14 years, GMFCS V).

At the same time, products and technologies can be seen as important barriers, as expressed by the following child who wished she did not need a wheelchair and was able to walk freely: “I'd like to be walking already, so I wouldn't need a wheelchair. The wheelchair makes playing soccer difficult for me” (this child was in the postoperative period of hamstring lengthening surgery). (Child 6, female, 10 years, GMFCS III.)

Many children showed dissatisfaction with the presence of environmental barriers related to the architecture, construction, and accessibility of buildings, as can be seen in the following child's quote: “When I go to the movie theater here in Córdoba, there's an elevator to go upstairs and downstairs with the wheelchair, but it works too slowly ... it takes a lot of time. And also, when I hang out with my friends in some pubs there are steps and that makes things difficult. Once I almost fell down ...” (child 15, female, 16 years, GMFCS IV). Another child reported a negative experience that made her participation difficult due to the presence of architectural barriers in a tourist location: “Once I went to a village palace, and they had to carry me up in their arms because there was no elevator there ...” (child 6, female, 10 years, GMFCS III).

The school was also the scene of negative experiences that limited participation due to teachers' attitudes, as expressed by the following child: “Once I went to this school trip with our teacher but one of the monitors couldn't go with us, so she was the one responsible for me.... Then, for the next school trip she was with me again, and she said that I probably wouldn't enjoy the trip because the place we were going to was not adapted and that if that monitor was not going with us again, they couldn't move my wheelchair around the place and so on ...” (child 15, female, 16 years, GMFCS IV).

We have also observed the lack of preparation of some professionals to embrace and/or integrate diversities, as well as to include children in nonsegregated physical activities as reported by this child: “During physical education class at school, our teacher—I don't know about yours—but our teacher, she only cares about what the other kids can do, it seems that she doesn't see my condition, then she says: ‘You, sit down here! ... because you can't do that!’ Then, in our second examination she gave me a 5, because I didn't do the practical exam ...” (child 3, male, 9 years, GMFCS II).

On the other hand, another child reported positive experiences regarding her classmates' attitudes, as shown in the following statement: “... my classmates even encouraged me to join them in this trip, but I didn't end up going ...” (child 15, female, 16 years, GMFCS IV). Nevertheless, many children reported negative experiences with peers, which prevented them from participating in games and other unstructured play, as well illustrated in the following statements: “my schoolmates, they didn't let me play with them. I don't know why, they were playing ‘tag’ and they said that I couldn't play with them” (child 2, female, 9 years, GMFCS I).

Other negative experiences were reported by the following child: “Once it happened to me while I was playing tag. I almost fell off my chair, but I didn't fall...So this other kid said: Come on, get out, leave! And I really felt bad about that ...” (child 6, female, 10 years, GMFCS III). Failure to participate in certain games triggered feelings of sadness, as expressed by the following child: “I was playing and my classmates told me to be careful, that I could fall down, that's why I couldn't play. But I know I was not going to fall down, so I felt really bad about that ...” (child 13, male, 14 years, GMFCS I).

Physical support provided by family, friends, and other professionals was perceived by children as an important facilitator to participation in sports and socialization activities, as explained in this child's quote: “Well, I spent one week in Andorra, skiing with my father, my mother, my brother and some friends. I had a great time, because I was able to stand on the skis and I could ski a little bit. It was the first time that I skied. I had been there a few times before, but my father always had to hold me. But this time, the ski instructor was by my side with a ski stick, and I was skiing by myself, so I was very happy” (child 11, male, 13 years, GMFCS II).

The Services, Systems, and Policies were also present in children's speeches, with health services being especially exalted as an important facilitator to improve function and participation in certain activities, as evidenced in the speech of the following child: “I was operated on in Murcia by Russian doctors, it helped me to get more balance with my feet, now I find it less difficult to play the things I usually play. Like jumping rope, running with my friends, playing hide-and-seek, and so on ...” (child 1, female, GMFCS I). Another child reported a similar positive experience: “I was also operated on and that helped me so much because then I could stand better with my feet on the floor” (child 15, female, 7 years, GMFCS IV).

In contrast, children reported dissatisfaction with the excess of rehabilitation during their lifetime, as well as with the type of treatment for generating physical pain and long periods of convalescence, as evidenced in the following child's quote: “Since I was a young child I've had to see doctors, to undergo medical treatments, it's always the same ... it's tiring ... the same room ...” (child 3, male, 9 years, GMFCS II). Another child expressed a similar negative experience: “I would change the medical treatment itself, so that they'd stop giving me injections, with this toxin thing ... that I have to stay at home ... it's so boring ...” (child 16, male, 17 years, GMFCS III).

Participation experiences expressed by children allowed us to create a model of barriers and facilitators for participation in leisure activities of Spanish children with CP according to the ICF, considering the most frequent categories (Figure).

F1
Fig.:
Model of facilitators and barriers to participation in leisure activities of Spanish children with cerebral palsy according to the International Classification of Functioning, Disability and Health. For this figure, only those categories that were mentioned at least twice by the children were considered.

DISCUSSION

This qualitative study adds to the literature by more deeply exploring the barriers and facilitators of leisure activities for children and adolescents with CP, considering the perspectives of the children. The results found in this study point to aspects that should be considered for planning social and health policies aimed at reducing the social disadvantage experienced by children with CP in Spain and in improving the results of participation in leisure activities. Children mentioned more barriers than facilitators as aspects that influenced participation in leisure activities and also reported problems related to body functioning.

Function and Body Structure

Body Function and Structures categories were in the experiences related to participation in leisure activities of children with CP heard in this study. For example, they cited the Structure of upper extremity and Structure of lower extremity categories as being possible to improve functionality and participation in leisure activities, expressing a desire to have “new legs and hands” to do more skiing, dancing, or shoot with a bow and an arrow. Güeita-Rodríguez et al37 evaluated the function of children with CP from the ICF perspective and also identified that the lower and upper limb categories were the most cited by children in relation to the body structure domain.

The desire for structural changes in the body was also observed in the study by Vargus-Adams and Majnemer,42 in which all groups indicated a desire to see changes in their body functions and structures related to strength, movement, pain, and mental function. Such desires may reflect that the children included in the study do not feel welcome or accepted by their peers with no disabilities because they do not fit into social standards considered appropriate and they do not feel integrated into society.

Because of the presence of functional and structural barriers, children with disabilities generally participate more in activities at home, alone or with siblings, and are less involved in active, skill-based, and self-overcoming physical activities than children without disabilities.6,22,43,44 These data are relevant to clinical practice because knowing the child's context and the needs, desires, and motivations can change the course of the intervention process and make it more dynamic. Developing active and context-based tasks, in addition to fostering learning, neuroplasticity, and skill transfer to different contexts, will increase levels of child participation in society.45–47

Environmental Factors

Friends were considered by the majority of the children as a facilitator for participation, as they reported having a good relationship with their schoolmates and social interaction and that friends often helped them participate in leisure activities. One explanation for this positive relationship between children and their friends is the creation of a bond, awareness, and education about the needs of people who have disabilities. By knowing a child with CP and recognizing his or her needs, the children who live around him or her and become more helpful and attentive. Friends' positive attitudes promote socialization and inclusion of children who have CP and play an important role in participation.43,48 According to some authors, positive attitudes are more related to extended, direct, and high-quality contact with colleagues with disabilities than frequent contact with these children.49,50

Negative attitudes from friends can significantly impact the child's sociocultural and emotional development.51,52 In our study, the category of individual attitudes of acquaintances, colleagues, neighbors, and community members was listed by children as an important barrier to participation by expressing significant experiences of bullying and discrimination by colleagues and teachers. Similar data were found in a recent study in Thailand, where caregivers perceived that nonacceptance of peers was a barrier to the participation of children who have CP.53 A lack of understanding about CP can produce embarrassment and prevent children from participating in leisure activities and sports. In addition, conflicting relationships between children and people in their social context can generate social isolation, exclusion, intimidation, and distancing of the child from the context of the school and the community.24,54

The attitudes of professionals were also evidenced in this study as a barrier to participation. Some professionals were unprepared to accommodate and/or integrate diversities, as well as to include children in nonsegregated physical activities. Social exclusion within the school by teachers and colleagues is a reality that needs to be addressed at different levels of care, especially in developing countries.55 Rigid adherence to traditional curricula, methods of training for teachers with no focus on disability, and lack of accommodation of children's needs reduce the opportunities for participation of students who have disabilities.56,57 Therefore, schools should have a responsibility to promote and stimulate activities and strategies that strengthen links between children with and without disabilities and thus improve attitudes and support. The culture of support for children with disabilities developed in schools can facilitate changes in children's and teachers' behavior and attitudes, making the school environment welcoming, receptive, and fun for children with CP.

Health services were identified by some children as facilitators for providing comprehensive follow-up in the rehabilitation process. They were considered barriers due to excessive time spent on interventions over the years and limiting experiences related to leisure activities. The excess of health services that is offered to children can also limit the practice of physical activity. Research indicates that low participation in physical activities is due to prejudice, unprepared professionals, and lack of activities adapted for children who have disabilities, acting as a barrier that affects children's ability to progress function.37,58

Immediate family was the only environmental factor considered as a facilitator by all children in the study, emphasizing the importance of strengthening family-centered care. Children recognize the love, support, and positive attitudes of their close family and report not feeling different or inferior when they are in the family context.33 Family support is invaluable for children in building self-confidence and encouraging children to participate in leisure activities.53,55 To increase the potential of family care to the child, it is recommended that health professionals involve the family in ongoing conversations to create bonds and to better understand the child's needs.59

Products and technology are both facilitators and barriers. Assistive technology can provide children with greater independence, formal communication, mobility, and social inclusion.33,42,55 However, deprivation of access to such resources due to lack of income, infrastructure, architecture, systems, and public policies converts assistive technology into a barrier to participation.44

Final Considerations

Our study is the first to evaluate the perception of children with CP in Spain on barriers and facilitators to participate in leisure activities, wherein it was possible to observe that the most disabling barriers are related to environmental factors such as products and technology, support, attitudes, and health services. These results provide important information about the context of children who have CP in Spain and facilitate clinical decision making to improve participation.

It is necessary that government, professionals, and families come together to elaborate viable goals that enable facing these environmental barriers. Like other European countries, Spain must strengthen its public policies in order to favor the participation of children who have disabilities and expand access to leisure activities. Professionals should use evidence-based methods to identify barriers and facilitate their participation in leisure activities, as well as guide parents about existing policies and benefits that may assist the family and the child. Parents should be aware of the needs of children and seek knowledge to defend the rights of children who have disabilities. This union of forces could increase the access of children who have CP to full and unsegregated participation.

Designing rehabilitation interventions centered on the ICF model remains a challenge in different settings around the world, especially in some specific contexts. However, it is a necessary change to broaden the view on children who have disabilities, to identify aspects related to this context, and to offer strategies that facilitate participation.46,59 A strategy of knowledge translation that has been widely diffused by its “user-friendly” characteristics is the “F-words,” which are grounded in, and aim to operationalize, the ICF model. This framework was adapted by mapping onto it 6 “F-words” (function, fitness, fun, friends, family, and fun and future) that correspond to the domains of ICF body functions, body structure, activities and participation, and environmental factors and represent an easy and practical way for health professionals, family members, and patients to discuss rehabilitation targets covering all elements of the ICF.7 In fact, ICF-focused evaluation and intervention models can guide goal setting and eliminate barriers that prevent child participation.33,60

This study is pioneering in Spain and yet presents limitations related to the number of participants and focus groups, although the aspect of saturation used in qualitative research has been considered. Further studies should be undertaken including children and adolescents who have CP from other autonomous communities, as well as parents and rehabilitation professionals, in order to broaden the understanding of barriers and facilitators related to participation in leisure activities.

Finally, the experiences presented by Spanish children who have CP included in the study regarding participation in leisure activities provide important perspectives for designing interventions for children and adolescents who have CP and call for changes centered on environments. Recognizing the challenges posed by the environment and the society and removing the barriers that prevent child participation may be more effective strategies than trying to modify the body's functioning and structures.

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Keywords:

cerebral palsy; children; environmental factors; focus group; ICF; leisure activities; participation

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