Parents’ actions, challenges, and needs while enabling participation of children with a physical disability: a scoping review

Parents enable and support performance of meaningful activities

This theme is about actions, challenges, and needs of parents in relation to helping their child with a physical disability to engage or be involved in meaningful activities in order to enable participation. Here, the term meaningful relates to the subjective perception of parents about the meaning of activities regarding participation of the child. Five out of 14 studies demonstrated the following actions or strategies: “choosing for”, “structuring”, “educating”, and “modifying” activities.

“Choosing for” refers to the action by which parents make choices for or with the child about the kinds of activities in which he or she will engage. Heah et al. [50] found that parents had strong convictions that their children should experience a variety of activities in order to choose those that are particularly meaningful. Parents attributed different meanings to activities: having fun, feeling successful, doing and being with others, and doing things yourself [50]. In the study of Antle et al. [51], parents stressed the importance of exploring physical activities in order for their child to stay healthy and to develop self-confidence and discipline. Missiuna et al. [52] provided similar examples of parents who decided to enroll their child with a physical disability in recreational activities or in team sports in order to be better engaged with their peers. Occasionally, however, parents chose to limit or avoid sports activities if these activities proved to be too demanding in relation to their child’s physical abilities, or to reduce the frustration levels of both parents and their child [51, 53, 54]. In some cases, mainstream education includes activities that are too demanding for a child with a physical disability. In one example [50], when parents noticed their child was at risk of falling behind his or her peers, they choose another type of educational institution.

“Structuring” refers to the way in which parents apply strategies to organize the day so that enough time is left for a child to engage in meaningful activities. One article addressed this specific action. In a study of Bedell et al. [54], in order to promote participation, mothers composed strategies that incorporated the daily needs of the family with that of the child by orchestrating activities and routines that enhanced the child’s participation and experience. Specific strategies were not further described.

“Educating” is about teaching and coaching a child on how to solve problems while performing new or difficult activities. One study [54] showed examples of how parents enabled their child’s participation by using several types of cognitive and behavioral strategies to improve performance. Modeling, showing, or describing the process, using trial and error, or repeating activities in the same or different contexts, were among the strategies found to be useful and valuable. Parents educated their child about how to deal with peers at school who engaged in behaviors, such as teasing [54]. Further, parents stimulated the learning process by setting limits, by being very consistent, or by using cues that supported their child’s ability to perform meaningful activities.

“Modifying” stands for adaptations of activities to support the child’s independence and social interaction. Missiuna et al. [52] provided examples by which parents helped their child perform everyday activities more effectively. One such example – putting on a jacket for playing outdoors – was facilitated by buying clothes without buttons. Parents indicated that this was especially important when performance was interfering with a child’s routine situations during school time. In another example given by Bedell et al. [54], parents broke down difficult household activities into smaller tasks, such as involving their child in parts of the laundry process.

While creating opportunities for their child to engage in meaningful activities, parents experienced various challenges. These included “being supportive in a correct manner”, “coping with child safety”, “choosing the most appropriate leisure activities”, and “selecting the best type of education”. Such types of challenges were discussed in six of the 14 studies.

Two studies [52, 55] illustrated the challenge of “being supportive in a correct manner” during performance of difficult activities. Parents did not know how to help their child once he or she became angry while doing a homework assignment [52]. Huang et al. [55] showed that parents struggled between encouraging their child’s independence versus maintaining their responsibilities as parents.

“Coping with child safety” is another important challenge for parents. Studies by Heah et al. [50] and Missiuna et al. [52] demonstrated parents’ vigilance when children went out with friends, such as playing in the park or attending a party. The more severe the child’s disability, the more alert and involved his or her parents were [56]. Often, parents became overprotective, as described in the studies of Antle at al. [51] and Huang et al. [55].

Parents faced other challenges in addition to home and school activities, such as “choosing the most appropriate leisure activities” that fit the child’s abilities while bringing a sense of accomplishment. For example, Missiuna et al. [53] described parents’ struggles with physical leisure activities. Parents sought to avoid tasks in which the child experienced repeated failure, even taking the risk that by withholding their child from team sports, opportunities for peer connections might become more limited.

“Selecting the best type of education” to support their child’s future is yet another challenge confronting parents. The study reviews indicated that parents believed that an appropriate education was an important condition for future success. Antle et al. [51] found many worries among parents about the future of their children: worries about having a career, about being financially independent, and about being able to live on their own and having friends. While some parents believed that a mainstream school is the best way to succeed in society, others were afraid their child would be too different from their peers in such a school system [56, 57].

Only one study [58] addressed the needs of parents in “identifying and obtaining information” about meaningful activities for their child. Concerns encompassed the need of obtaining more information about the availability of recreational and entertainment activities, as well as information about education and special education.

Parents enable, change and use the environment

This theme is about actions, challenges, and needs of parents while using, enabling, and changing the social and physical environment at home, school, and in the community to support the participation of their child with a physical disability. In addressing this theme, seven studies described actions or strategies: “networking”, “educating”, “advocating”, and “creating opportunities”.

“Networking” refers to the establishing of connections with people with similar experiences, who understand the parents’ situation, and who are willing to support them. Heah et al. [50] and Meehan [59] illustrated that, in connecting with other parents of children with a disability, parents became more informed about community programs and suitable activities for their children. In addition, these connections provided parents with a feeling of belonging to a group with shared interests [59]. Further, Heah et al. [50] reported that parents identified and organized a wide range of social support (friends, family, or support workers) with the aim of increasing the participation of their child in community activities and social interactions. For example, one set of parents engaged a support worker to escort their child outside of the house to be with friends.

“Educating” is defined as the giving of instructions to others on how to support the activity performance of their child. Explaining to a teacher how to make educational activities more suitable to their children [56], or providing a teacher with written strategies are two examples of how parents helped to educate school staff [54]. Similar strategies were used for extended family members and services, such as respite care [60].

“Advocating” refers to the competing of resources, supports, and services within the system. Examples are given by Missiuna et al. [53], Meehan [59], and Lawlor et al. [60], in which parents actively advocated for additional services at school, like the presence of a teacher-assistant while taking an exam, or they spoke up for their child’s best interest, or they fought for extra resources during leisure activities. To get appropriate support for their child, parents promote awareness about the child’s abilities, strengths, and needs in an attempt to change peoples’ attitudes toward their disability.

“Creating opportunities”, as an action, means the creation of events by parents in order to shape opportunities for their child to get acquainted with other children. Heah et al. [50] and Antle et al. [51] described how parents often organized meetings with others to create opportunities and situations for their child to meet friends. Parents worried about their child being alone at parties. To cope, some parents held dual parties: one for themselves and one for the children [51]. Additionally, Bedell et al. [54] showed that parents purposefully selected certain peers to visit or play with their child after school in order to increase the chances for developing a solid friendship.

Twelve studies addressed several parents’ challenges related to the theme of “enable, change, and use of the environments”. These comprised challenges such as the “attitudes of others”, “insufficient system support”, “financial burdens”, “lack of time”, and “barriers in both the natural and built environments”.

The “attitudes of others” refers to the experience by which parents faced negative attitudes of other children or adults towards their child with a physical disability. The fact that parents have to deal with these attitudes is shown by the many worries and concerns that were expressed in several of the 14 research studies. Parents worried that their child would not be accepted by peers, or would be teased or hurt emotionally or physically [50, 51, 56, 57, 59]. Missiuna et al. [52] and Vogts et al. [61] also found that parents harbored concerns about their child being criticized by their teacher for not performing at the expected level. Negative attitudes, comments, and prejudice of others influenced the joy of being together as a family and thereby, impacted the participation of their child [55, 60, 62].

“Insufficient system support” pertains to the challenges stemming from unsupportive social structures. Six research papers addressed challenges related to the school system. Bennett & Hay [56] documented parents’ concerns about the lack of help their children received from teachers and about the insufficient qualifications those teachers had in educating children with physical disabilities. Furthermore, studies by Vogts et al. [61], Missiuna et al. [53], Heah et al. [50], and Huang et al. [55] indicated that support and help at school was clearly not sufficient for children with disabilities. Additionally, in the study of Heah et al. [50], parents expressed that community programs do not provide enough opportunities for children with disabilities to play with others.

“Financial burden” illustrates the challenges faced by families in dealing with monetary constraints to support the participation of their child. Antle et al. [51] reported that parents with low incomes experienced stress when they lacked the resources necessary to enroll their child in recreational activities. Conversely, other parents discovered that their income was too high to receive financial support from the government and too low for addressing their child’s needs [58]. Parents were often unaware of other financial support programs to which they were entitled [60].

A “barrier in the natural and built environment” refers to the physical accessibility of buildings and public places. Hewitt–Taylor [62] gave examples of challenges confronting parents in non-user-friendly shops, cinemas, and public toilets. Similar challenges were also experienced in parks, public transport, and parking facilities -- all noted as not being user-friendly for children with a physical disabilities [57, 60–62]. Also, schools, playgrounds, and leisure facilities in neighborhoods were often inaccessible to children with a physical disability [55, 61]. These environmental barriers present many challenges for parents to find appropriate outdoor activities for their child to play with other children.

Five studies addressed parents’ needs regarding enabling environments: “service and information”, “equipment and adaptations”, and “social and system support”.

“Service and information needs” refers to parents’ needs for available centers and services in the community suitable for providing leisure activities for children with a physical disability. Palisano et al. [63] showed that parents sought out extra support persons or services to help them locate appropriate community camps, sports, recreational, social, and leisure activities. Furthermore, Buran et al. and Palisano et al. [58, 63] illustrated how parents require more written information than is generally available about services available in their community.

“Equipment and adaptation” refers to the need for adequate equipment that is designed to support independence and participation in activities, while reducing the level of care. A study by Lawlor et al. [60] referred to the parents’ needs for more user–friendly designs of transport systems and parking facilities, as those facilities are vital for attending leisure activities, school sessions, and hospital appointments.

“Social and system support” refers to the needs of parents for more expansive social networks and accessible leisure centers to enable the participation of their children. In several studies [50, 57, 60] parents also expressed the need for extra support from grandparents by bringing their child to leisure activities or to school, ensuring that parents would be able to continue to work.