This study examined the roles of care (ECEC) in supporting children, who receive home medical care, to use outpatient facilities through participation in play. Based on the results, one of the roles of ECEC may be parenting support, covering child development and the shift toward community-based care. In order to ensure children’s right to play based on their own intrinsic motivation, it may be necessary to support their participation in play through collaboration with them from the perspective of the living.

Child; Care (ECEC); Community-based care; Outpatient support facilities; Play.

This study examined the roles of care (ECEC) in supporting children, who receive home medical care, to use outpatient facilities through participation in play. Based on the results, one of the roles of ECEC may be parenting support, covering child development and the shift toward community-based care. In order to ensure children’s right to play based on their own intrinsic motivation, it may be necessary to support their participation in play through collaboration with them from the perspective of the living.

Child; Care (ECEC); Community-based care; Outpatient support facilities; Play.

With the advancement of healthcare and home medical services, the number of children receiving home medical care is increasing in Japan. Such children include those who are forced to spend a large part of their daily lives at home due to the necessity of respiratory management using medical devices, which makes it difficult to go out. In general, their mothers or other family members play a central role in caring for them, and measures to ensure their participation in play from infancy are insufficient at present.

Participation in play with support is an ensured basic right of all children. The United Nations (UN) Convention on the Rights of the Child involving Japan and other countries, mainly its Article 31 defines children’s right to participate in the areas of rest, leisure, play, and cultural and artistic activities. In March 2013, the UN Committee on the Rights of the Child, which monitors the implementation of the Convention by the ratifiers, issued General Comment No. 17 to promote their compliance with Article 31, specifying the above-mentioned right of children [1].

In Japan, the Child Welfare Act (1947, Act No. 164) to support children with diseases or disabilities who receive home medical care was revised in 2012. In this revision, the conventional subsidy allocation system was reorganized based on the type of support facility (outpatient/inpatient), rather than disability, with the aim of enabling such children to receive necessary developmental support in their communities. In this respect, systems to provide day services, such as after-school activities, and support nursery school visits were also established.

This paper discusses the roles of ECEC in supporting children who receive home medical care to use outpatient facilities through participation in play and challenges.

This study aimed to promote the assurance of the rights of children with diseases or disabilities by examining the roles of ECEC and challenges to developing the roles of care (ECEC).

After clarifying the details of ECEC provided in 3 outpatient support facilities in the process of shifting care from home medicine, the roles of the latter and challenges to developing the former were examined based on children’s right to play.

In these facilities, ECEC mainly aimed to support children, attaching particular importance to developmental support.

In such ECEC, developmental rehabilitation was performed with future perspectives and based on individualized support plans, developed upon deliberations between families and professionals engaged in rehabilitation, nursing, developmental consultation, or other areas. Furthermore, approaches for each child to lead an independent life to the maximum extent possible were considered. To promote their development, social and play activities were also organized, according to their age and type/degree of disability.

The child developmental support center Futaba is an outpatient support facility for children with developmental (mainly physical) diseases/disabilities [2]. At this center, ECEC was provided through individualized, age-based, or mixed-group approaches. Play activities were classified into 2 themes to promote gross and fine motor skills, respectively, and children selected and participated in activities for either theme for approximately 2 months. Such a selective ECEC system aimed to promote children’s understanding of senses and movements through play activities for each theme.

The child developmental support center Yunagi mainly supported children with hearing loss and their parents. It provided developmental support through individualized and group approaches. The community-based developmental rehabilitation center Aoba is a facility to support infants with severe mental and/or physical disabilities [3]. At this center, outpatient ECEC was provided for children without the company of their parents from Monday to Saturday every week. Its support approaches covered: 1) children’s development, 2) their parents, and 3) the shift toward community-based care for them. In the first category, play activities, daily life support covering mealtime and bathing assistance, and rehabilitation were organized based on the age, degree of disability, and individualized support plans developed upon deliberations with families. In the second category, parents were supported to understand their children’s mental and physical growth and development, based on the observation of play and daily life activities. Consultation services were also provided in this process. In the third category, comprehensive support for children with disabilities and their families to comfortably live in their communities was provided as a basis for their social inclusion.

In addition to these approaches, the Nadeshiko program was available to provide developmental and life support for individuals aged 18 or over after a shift toward communitybased care. The program was designed to support users’ daily life activities, including exercise and recreation, exchange with other users and facility staff through various activities, and communication with other community residents through social activities in a space created for community exchange.

At the Futaba Center, outpatient support was provided from 9:30 to 14:35. Until 15:30, activities based on individualized ECEC programs were also performed, as needed.

Outpatient support at this center targeted both children and their parents. For the former, ECEC was provided to support their mental and physical growth and development, basic life skill acquisition, and experience in environments other than their homes through play, while presenting other activities that could also be performed at home.

As listed below, ECEC contents were practiced based on an annual plan at the Futaba Center, in which a theme, purpose, creative activity, and event were determined for each month.

At the Futaba Center, importance was attached to health support, covering daily observation (visual examination), periodic physical examinations, advice and consultation on health management, and arrangements to discuss methods for such management with parents.

The center also provided safe and palatable lunches for children at 300 yen per serving. Based on the diagnoses provided by physicians, appropriate types of food for individual children were prepared, adopting countermeasures against food allergies. Furthermore, dietary consultation services for parents to make appropriate foods for their children at home were provided.

With a full-time therapist assigned, it was possible for the center to provide practical support through individualized or group approaches. In addition, the social worker provided information regarding available support services in each case and procedures to renew the certificate to receive subsidies for outpatient service use through consultation.

The family support provided in these facilities aimed to help parents enjoy parenting by providing them with information regarding available social systems and resources and opportunities to share activities in the facilities with their children. Play activities were designed to promote parents’ understanding of children and their disabilities, while parenting classes provided opportunities for them to learn about health and welfare. At the Yunagi Center to support children with hearing loss, individualized and group consultation services were provided.

At the Aoba Center, parents were supported to understand their children’s mental and physical growth and development through the observation of play and daily life activities or consultation.

Similarly, outpatient support services at the Futaba Center targeted both children and their parents. For the former, ECEC was provided to support their mental and physical growth and development, basic life skill acquisition, and experience in environments other than their homes through play, while presenting other activities that could also be performed at home. The latter were provided with opportunities to learn about childhood and parenting, exchange with other parents, expand their community lives, and reduce their anxiety over parenting.

Staff of the center periodically visited users’ homes. The information regarding each household and environments in the community obtained through such visits was effectively used for developmental rehabilitation. At the Futaba Center, information regarding social resources was provided to parents during the above-mentioned parenting classes, and group activities for them to sufficiently communicate with each other were organized as part of parenting support. At their request, a meeting with the parents of graduates was held annually to exchange information in each group based on the destination after graduation, such as a community kindergarten or nursery school, community elementary school, and school for children requiring special support.

The community lives of children and their parents were also supported in these facilities. One of the basic ideas of the Osaka Developmental Rehabilitation Center was comprehensively supporting the community lives of children with mental and/or physical developmental disabilities and their families. At this center, developmental rehabilitation based on the Bobath concept was performed. The Bobath concept is an approach to treatment for children with central nervous system diseases such as cerebral palsy; it aims to comprehensively support children’s daily lives through treatment and developmental rehabilitation. In such rehabilitation, support is provided in consideration of individual children’s characteristics and changes, based on evidence regarding child development. Their potential abilities are also assessed to consider methods to make the most of such abilities in each case. In the support process, collaboration with children and their families through explanations is regarded as important. Based on this concept, the center developed comprehensive developmental rehabilitation programs for children and their parents. The programs were designed to provide support based on the age, in order to harness children’s potential basic abilities, and help them acquire motor functions to the maximum extent possible. They also aimed to improve children’s communication skills, sociability needed for group adaptation, and learning abilities toward independence in daily life.

Respect for children’s autonomy is essential to support their participation in play. Regarding play, which is defined in Article 31 of the Convention on the Rights of the Child, General Comment No. 17 describes it as follows: “Children’s play is any behavior, activity, or process initiated, controlled, and structured by children themselves”, and “it takes place whenever and wherever opportunities arise” (Para. 14c). In this respect, it encourages care-givers for children to “contribute to the creation of environments in which play takes place”, as play itself should be “non-compulsory, driven by intrinsic motivation and undertaken for its own sake, rather than as a means to an end”.

Furthermore, concerning the right of children to “participate freely” defined in Article 31, it emphasizes the importance of respecting their access to, choice of, and engagement in play to ensure such a right (Para. 14g). It also suggests the necessity of considering the key characteristics of play, such as “fun”, “uncertainty”, “challenge”, “flexibility”, and “non-productivity”, when motivating children to play.

Thus, General Comment No. 17 specifies children’s right to play, focusing on the relationship between such activities and “their lives”, as follows:

First, “to enrich the lives of children”, “Article 31 must be understood holistically, both in terms of its constituent parts and also in its relationship with the Convention in its entirety” (Para. 8). Furthermore, the elements of this article together describe conditions necessary to “protect the unique and evolving nature of childhood”, and their realization is fundamental to the quality of childhood, to children’s entitlement to optimum development, to the promotion of resilience, and to the realization of other rights.

For such realization, Article 31 should be realized in the broader context of the Convention, such as its general principles and other articles, with each element analyzed.

As for the general principles of the Convention, Article 2 (non-discrimination) charges States parties with the duty of taking all appropriate measures to ensure that all children have the opportunity to realize their rights under Article 31 without discrimination of any kind, irrespective of the child’s characteristics including disability (Para. 16).

Similarly, Article 24 (children’s right to health and access to medicine care) emphasizes that not only does the realization of the rights provided for in article 31 contribute to the health, well-being, and development of children, but also appropriate provision for them to enjoy their rights under Article 31 when they are ill will play an important role in facilitating their recovery (Para. 25).

Furthermore, as the Convention regards children with disabilities as subject to multiple barriers that impede their access to the rights provided for in Article 31, such as isolation at the home and policies that exclude those with physical problems or disabilities, States parties are also encouraged to adopt proactive measures, in order to remove such barriers and promote accessibility to and availability of inclusive opportunities for them to participate in play (Para. 50).

Regarding this, General Comment No. 17 refers to Article 12 (right to be heard) specifying a general principle of the Convention, similarly to Article 2, and underlines the importance of providing opportunities for children to contribute to the development of legislation, policies, strategies, and design of services to ensure the implementation of the rights under article 31 (Para. 19). Such contribution could include: their involvement in consultations on policies related to play and recreation; planning and design for child-friendly communities and environments; and feedback on opportunities for play.

Subsequently, it defines play and recreation as “essential to the health and well-being of children”, and emphasizes the necessity of ensuring these activities (Para. 9), as they contribute to all aspects of learning, and they are a form of participation in everyday life and are of intrinsic value to the child, purely in terms of the enjoyment and pleasure they afford.

As the third point, General Comment No. 17 recommends the realization of Article 31 from the perspective of “understanding of children” and “mutual respect with them”, considering that both play, and recreation can take place when children are on their own, together with their peers or with supportive adults (Para. 10). Such a perspective should be adopted based on the idea that the development of children may be supported by adults who love and care for them through play, and play leads the latter to understand the former, contributing to effective communication between them.

One of the roles of ECEC in shifting care for children from home medicine to outpatient facilities is providing child and parenting support.

In the study facilities, age-based support programs to harness children’s potential basic abilities, and help them acquire motor functions to the maximum extent possible were provided. The programs aimed to improve their communication skills, sociability needed for group adaptation, and learning abilities, in addition to guiding them toward independence in daily life.

In the process of providing such support, importance was attached to the promotion of development. Thus, child support was provided based on individualized support plans created upon deliberations with families in consideration of the age, as well as the type and degree of disability. Developmental rehabilitation was performed through collaboration among professionals engaged in rehabilitation, nursing, and developmental consultation, with future perspectives to achieve independence in daily life to the maximum extent possible. A selective ECEC system was also established to promote children’s understanding of senses and movements through play activities for each theme.

When supporting children, the relationship with the community was also regarded as important to promote outpatient facility use. The child developmental support center Futaba as a community-based outpatient support facility provided both child and parenting support. ECEC provided at this center aimed to support children’s mental and physical growth and development, basic life skill acquisition, and experience in environments other than their homes through play, while presenting activities that could also be performed at home. ECEC contents were practiced based on an annual plan, in which a theme and purpose were determined for each month to organize appropriate creative activities and events. To enhance children’s sociability and learning abilities in the developmental process, individualized, age-based, and mixed-group ECEC approaches were provided. In addition to normal ECEC activities performed from 9:30 to 14:35, those based on individualized ECEC programs were also performed until 15:30. Attaching particular importance to health support, the center provided individualized consultation services, covering the provision of information regarding available support services in each case and procedures to renew the certificate to receive subsidies for outpatient service use, through cooperation with the clinical psychologist and social worker. It also provided safe and palatable lunches for children at 300 yen per serving, adopting countermeasures against food allergies. Parenting support was provided as part developmental rehabilitation, such as holding exchange meetings for parents and interviewing them on monitoring, to enable them to select an appropriate destination after graduation in the community at an appropriate time. Furthermore, to provide opportunities for them to mutually visit community nursery schools their children belonged to once or twice monthly, an ECEC exchange system was established. The Yunagi Center supporting children with hearing loss developed a system to support individualized and group visits to nursery schools.

In addition to these facilities, at the community-based developmental rehabilitation center Aoba supporting infants with severe mental and/or physical disabilities, outpatient ECEC was provided for children without the company of their parents from Monday to Saturday every week. In such services, play activities, daily life support covering mealtime and bathing assistance, and rehabilitation were organized based on individualized support plans. For those aged 18 or over after a shift toward community-based care, the Nadeshiko program was available. It was designed to provide developmental and life support for them through daily life activities, including exercise and recreation, exchange with other users and facility staff through various activities, and communication with other community residents through social activities in a space created for community exchange.

In these facilities, parenting support was provided through comprehensive programs for effective developmental rehabilitation, based on the idea that collaboration with children and their families is key. Such support aimed to help parents enjoy parenting by providing them with information regarding available social systems and resources and opportunities to share activities in the facilities with their children. For example, at the Aoba Center, consultation services for parents were provided to promote and share understanding of their children’s growth and development, based on the results of observation of their play and daily life activities. In this respect, play activities were regarded as opportunities for parents to understand children and their disabilities, and learn about health and welfare.

The relationship with the community was also focused on in parenting support. At the Futaba Center, parents were supported to learn about children and parenting, exchange with other parents, experience play activities that could also be performed at home, receive dietary consultation, and consider appropriate health management methods. The information regarding each household and environments in the community obtained through periodic home visits was effectively used for developmental rehabilitation. Parenting classes provided opportunities for parents to participate in group activities for parents only. Meetings with the parents of graduates held annually at their request enabled them to exchange information in each group based on the destination after graduation, such as a community kindergarten or nursery school, community elementary school, and school for children requiring special support. The Aoba Center also promoted the shift to community-based care by comprehensively supporting children with disabilities and their families to comfortably live in their communities from the perspective of their social inclusion.

In the study facilities supporting the shift of care from home medicine to outpatient facilities through ECEC, approaches to promote children’s recovery were provided during play activities, with the aim of contributing to their health, development, and well-being. For children with diseases or disabilities themselves, play is not only a measure to promote their recovery, but also an activity undertaken for its own sake. Therefore, ECEC is also expected to ensure opportunities for children, including those with diseases or disabilities, to play based on their own intrinsic motivation by contributing to the creation of environments, reflecting the key characteristics of play, such as fun, uncertainty, challenge, flexibility, and non-productivity. In order to enrich the lives of such children, and ensure the quality of their childhood, it may be necessary to define play as their participation in daily life, and appropriately remove barriers that impede their access to their rights, such as isolation at the home. As a first step to realize this, the value of play as children’s right should be shared with their families and society. The provision of opportunities for children to contribute to the development of legislation, policies, strategies, and design of services may also be important to create child-friendly communities and environments through collaboration with them, with effective feedback on opportunities for play and mutual respect.

This study examined the roles of ECEC in supporting children who receive home medical care to use outpatient facilities.

ECEC provided in study facilities in the process of promoting outpatient facility use were characterized by the provision of child, family, and community life support. On the other hand, to ensure children’s right to play, the necessity of respecting children’s autonomy from the perspective.

In short, in the process of supporting children who receive home medical care to use outpatient facilities, ECEC is expected to support children, mainly their development, and their parents, with insight into community-based care.

In order to ensure children’s right to play based on their own intrinsic motivation, it may be necessary to support their participation in play through collaboration with them from the perspective of the living.