Educational options for children with PIMD must consider these needs and identify them in the context of daily life activities, to make sure that strategies are implemented and their needs answered. Deciding which activities should be included in the child’s program and how can these activities better respond to the needs of children with PIMD is, consequently, an important step in educational planning.

ENGAGEMENT AND PARTICIPATION IN ACTIVITIES

Children´s development largely depends on their ability to explore environments and get involved in activities, as well as on the interactions developed with people in those environments. Limitations shown by children with PIMD´s reduce opportunities to explore environments independently and to interact with communication partners in those environments, requiring supported involvement in activities and adapted means of communication. Although Thompson and Guess (1989) state that teaching functional skills can be quite difficult when working with this population, involving them in everyday life activities has a greater probability of success than trying to teach them isolated skills  not embedded in an activity.

The International Classification of Functioning, Disability and Health, of the World Health Organization (ICF-WHO, 2007), states that the classification of a disability should include an analysis of the levels of participation in life contexts shown by an individual. This concept of participation identifies the need, not only to perform isolated tasks but also to get involved in everyday life situations (Grandlund, 2013). Participation in an activity includes, therefore, the ability to perform the activity within a context, as well as the level of involvement that children show in the activity, how they like the activity, and how meaningful it is in the context of their daily lives. Education should, therefore, look at the levels of participation in everyday life situations as an indicator of quality of services.

Active participation of children with PIMD in everyday life activities can be linked to four types of subjects: 1) the quality of environment offerings 2) the levels of attention and engagement in the activity, 3) the opportunities for control over the environment and, 4) the quality of interactions with adults and peers in the environment (Arthur-Kelly, Bochner, Center, Mok.,  2007). Although these issues are interrelated, it is worth analyzing it in detail, if we want to identify factors which may contribute to the quality of participation in activities.

Quality of environment offerings

The ability to understand contexts, including the role of objects and people in such contexts increases meaning and facilitates understanding (Oliva & Torralba, 2007). Nevertheless, the cognitive challenges, motor disabilities and limited communication abilities of students with PIMD severely reduce opportunities for incidental learning and context understanding. Children with PIMD, when left alone, do not actively explore environments, leaving to families and educators the task of providing them with opportunities to learn about the world around them.

Positioning is a major issue when working with children with severe motor disabilities. Not all positioning promotes the best behavior states or the best opportunities for attention and engagement in an activity. Although there is still not enough information on the relationship between the quality of learning and positioning, a study points out (Arthur, 2003) to the fact that children with PIMD spend a lot of time sitting in their wheelchairs. The sitting position seems to be associated with alertness states (Guess et al.,1993), requiring that a good sitting position is guaranteed before starting and activity.

The need to use the sitting position, as well as the limitations in active movement of children with PIMD, carries along reduced opportunities for movement, which can limit environment awareness, particularly in children with visual impairments. Although research in this area is still virtually inexistent with this population, normal development indicates that children need to move and to explore the world. Grasping the full content of an activity requires children to actively move around and search for necessary materials, as well as to plan their movements in order to perform actions during the activity (Amaral & Lolli, 2011) Assisted movement, as a way to explore the environment with children with PIMD, facilitates access to the whole activity and helps taking the child through all the steps or tasks in an activity. In this process, the teacher is a mediator between the complex world that surrounds a child and the child's level of understanding, thus making environments a more meaningful place.

Levels of attention and engagement

The participation construct identified in ICF should include, as we said before, not just the ability to attend to an activity, but also the ability to get involved while attending (Grandlund, 2013). Maxwell (2012) suggests that “frequency of attending and doing an activity are strongly related to the availability and accessibility of the environment, while the degree of involvement while being there is strongly related to how well adapted and acceptable the activity is for the child and others in the close environment.”

In order to reach an optimal level of involvement, states of alertness need to be taken into consideration. Alertness is described as the level of an individual’s interaction and engagement with the environment (Munde, Vlaskamp, Maes & Ruijssenaars, 2014).  In children with PIMD alertness levels vary throughout day and are influenced by various internal and external factors. Alertness can be assessed through eight different stages: inactive sleep, active sleep, drowse, daze, awake inactive-alert, awake active-alert, awake active-alert with stereotypy and crying/agitation (Simeonsson, 1988). Previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, and emphasized the importance of interaction in order to influence the level of alertness (Green, Gardner, Canipe & Reid, 1994). By carefully observing alerting levels teachers identify the right moment to offer an activity. Alertness can be observed in relation to different conditions of environment like: opportunities for interaction with people in environment, the level of class activity, materials availability and positioning of a child.   Alertness level can be regulated through these aspects of environment (Munde, Vlaskamp, Ruijssenaars & Nakken, 2009).

Another aspect which is guiding the design of interventions for children with PIMD is the level of attention during activities. Attention episodes can be evaluated on the continuum from no attention toward shared attention (Hostyn, Daelman, Janseen & Maes, 2010). Individuals can direct their attention toward another partner, toward an object, or they can share attention between the object, action or event, and the person involved in it, that is, joint attention.  Joint attention is considered as one of the most significant developmental achievements, but many students with profound and multiple disabilities experience difficulties in coordinating attention to people and objects, actions or events in environment. This ability is co-created and represents an outcome of interpersonal relationships (Ine, Heleen & Bea, 2011). Neerinckx, Van Den Noortgate, and Maes, 2014), again calling attention to the quality of interactions developed.

Finally, engagement can be taken as an important indicator of  the relationship between  the individual and his environment and subsequently as a measure of quality of participation in activities within an environment. Engagement is defined as “the amount of time children spend interacting with the environment (with adults, peers, or materials) in a developmentally and contextually appropriate manner’’ (McWilliam & Bailey, 1995; Ridley, McWilliam & Oates, 2000). Engagement behaviors can vary from simple to more complex and need to be constantly monitored. The goal of educational programs for children with PIMD must include an increase in the child's total amount of engagement as well as the level of engagement shown. This can be done by an analysis of the environment in which the activity is performed, defining the type and appropriate level of support, providing the structure for learning and meaningful outcomes, adapting complexity to level of understanding and ensuring effective communications system.

Opportunities for environment control

The ability to understand and have control over the environment is considered as a key point in the education of students with profound disabilities (Schweigert, 1989; O’Brien, Glenn & Cunningham, 1994) as it helps develop expectations and increase activity and self-esteem. Although many children with PIMD do not have an opportunity to initiate movements and activities independently, they can show awareness of contingencies (Saunders et al., 2003) which may lead to having control over their lives in adapted environments, therefore being able to choose preferred objects, people or activities, as well as initiate actions related to activities.

The quality of interactions

The role of teachers of children with PIMD is changing from a traditional view of a provider of decontextualized and fragmented skills in isolated settings to an interactive approach based on meaningful activities (Bricker & Cripe, 1992). Along with that, the need to look at participation as a qualifier of people’s abilities (WHO, 2007.) identifies the need not only to select activities in children’s programs, but to also to consider how students pay attention and get involved in such activities.

The results of interactions between adults and children relate to the quality of the feedback and instruction provided (Mc William, Scarborough & Kim, 2003; Almqvist ,2006). Research has shown that levels of happiness increase, not just with the quality of offerings but also with the social interactions which go along with such offerings (Davis, Young, Cherry, Dahman & Rehfeldt, 2004).The quality of interactions between teacher and child, as well as factors contributing to such quality, should therefore be discussed.

Effective communication can be ensured by taking into account :1) the student’s level of interaction, 2) different communication modalities, (body movement, gestures, objects or pictures, used to represent people, places, activities ), 3) various functions  (requesting, refusing, greeting, making choices, commenting, etc.), and 4) the selection of motivating topics to help build meaningful relationships.

Person to person interaction (Lock, 1999) features many interactions with children with PIMD and it is considered as a good starting point for intervention (Neerinckx, Vos, Van Den Noortgate & Maes, 2014). It can be facilitated through interactive approaches like Intensive Interaction which is becoming widely used in interaction with children with PIMD (Nind & Hewett, 2012) or resonance (van Dijk, 1986.) which means that  the teacher provides resonance to children's behaviors by imitating his/her behaviors. In both cases, the teacher follows the child's lead and exchanges are not focused on a specific topic or outcome. Although social interaction (person to person) is an important basis for the development of further interactive skills, content turn-taking (Amaral, 2003) needs to be explored and extended whenever teachers want to introduce and explore meaningful topics derived from real life activities.

Encouraging children to initiate interactions helps them develop a sense of control over the world. Initiation is encouraged by contingent responding to a child's behavior, and allowing enough time to respond or to initiate a turn (Amaral, 2003). Activities can be planned to include opportunities for the use of various communication functions, while pacing interactions so that children have an opportunity to understand the meaning of the activity. Teachers need to encourage interactions to include more turns by responding and expanding on 'learners’ turns and by including in such interactions meaningful topics that provide content and support further learning (Amaral, 2003). By joining into the child's activity the teacher can sensitively expand topics and include more turns while referring to the features or use of objects, necessary movements, and people in the environment to the added conversation. In such interactions, shared meanings are co-created within an activity which supports the development of meaningful language (Nafstaad & Rodbroe, 1999). A careful selection of activities helps establish meaningful relationships, through choosing people in specific environments who can become communication partners.

MANAGING ACTIVITIES

Quality of life requires a balance between different life domains such as activities of daily living, domestic, educational, cultural, leisure, and occupation. Each of these domains should be part of the child's life as activities can happen in different environments like home, school and community.

There are many activities going on in a child's life, some of them happening on daily basis and some others not as frequent. More frequent activities in child's life can include learning purposes whereas others may be just participation activities that seek to involve the child in naturally occurring situations in the contexts where they live. Participation activities contribute to making the life of students more meaningful (Amaral et al., 2006) and to enlarge knowledge about the world in which they live (Barber, 1998).

Special consideration should therefore be given to the selection of appropriate activities which contribute to supporting students become active and engaged in meaningful contexts, while looking at the efficacy of interventions as “enhancing, supporting, improving and optimizing participation outcomes” (Grandlund, 2013). In cooperation with parents, environments are analyzed and activities that can be included in those environments are identified.

Activity-based intervention (Bricker & Cripe, 1992), as an identified approach to implement activities under curriculum options, is defined as a “child-directed, transactional approach that embeds intervention on children's individual goals and objectives in routine, planned, or child-initiated activities, and uses logically occurring antecedents and consequences to develop functional and generative skills. According to Pretti-Frontczak and Bricker (2004) the common points of such approach are: 1) Choosing activities according to the child’s interests, 2) Teaching individual goals embedded in routines and planned activities, 3) Teaching functional and generalizable skills, 4) using before and after behavior stimuli which have natural and meaningful relations with behaviors and environment.

The use of an activity-based intervention in educational planning for children with PIMD allows meaningful participation in everyday life situations including meaningful interactions with people in the environments where activities take place. In activity-based approaches, everyday life situations become the context for learning (Tellevik & Elmerskog, 2009). Within this approach, developmental, learning and functional goals can be embedded in naturally occurring activities helping children build a framework for their understanding of the surrounding world.

Understanding the result of an activity makes activities meaningful and increases participation. Activities with clear and likable result are more motivating (example: exploring ingredients in the context of preparing a favorite cake in the kitchen is more meaningful than exploring it separately in the classroom), suggesting that education should be guided by outcomes or achievements and not just by skill abilities. Products of an activity (example: baking a cake) are tangible and could be used in another activity (having dessert, for example) or be compared with cakes in different environments (home, bakery), in different occasions (birthday cake) or with different flavors (sweet vs. salty flavor). Teaching the process of baking a cake can start with experiencing the product (eating the cake) so the child knows the result of the activity, which helps keeping him motivated and engaged.

  A note should be made on activities related to the educational domain. Although limited information exists on academic goals while working with children with severe disabilities, Bobzien (2014) suggests that involving children with PIMD in academic activities increases their levels of happiness. This may lead education to include more academic tasks embedded in naturally occurring activities, as Collins reinforces while referring to the need to incorporate core curriculum contents in naturally occurring activities. (Collins, 2012, p. 122)

Choosing  activities in children’s life should focus on those activities that are happening frequently, possibly on daily basis and in different contexts, thus providing more opportunities for repetition and application of functional skills (Tellevik & Elmerskog 2009). Setting a schedule of frequent activities where balance between different domains is achieved provides a safe and predictable framework that can be planned and skillfully expanded. Such frequency helps skills´ generalization and concept development, which are some of the main challenges when teaching a child with complex combinations of disabilities.

Janeslätt, Grandlund and Korttorp (2009) identified time processing abilities as a possible conditioning factor in daily time management. That suggests the need for a limited number of activities per day as an educational measure to support students’ needs of additional time to process information. Activities developed must ensure that children have both a way to understand what is going on, and an opportunity to participate and have control (directly or indirectly) over the environment.

Teacher of children with PIMD should be able to reflect and critically evaluate what, how and why the child does what he does, and how education can contribute to enhancing their abilities. By sharing his work with other professionals and parents, besides empowerment, teachers contribute to building supportive learning environment for all participants in the educational process.

Implications for practice

The ability to translate theory into practice is necessary when looking for a sound evidenced-based approach to education of students with PIMD. Although there is not much information concerning the results of teaching and the strategies to teach such a population, it is necessary to analyze intervention and education in order to be able to produce information on the kind of educational needs of these children, and how well this responds to the needs of the children.

The identification of quality indicators for school activities  as a way to help professionals decide  not just on the activities they provide,  but also on the quality of interactions among students, activities and the people involved in the activities, can promote inclusion, happiness and, indeed, better quality of life  for students with PIMD.

Based on the discussions above, Appendix 1 proposes a set of quality indicators which support assessment of education, particularly assessment of quality activities for children with PIMD. It should be noted that such a set of quality indicators is not designed to assess the child but to document to which extent the needs of the child are provided for during an activity.

Future studies regarding education of children with PIMD can help validate content and structure of this checklist and draw conclusions regarding its usefulness.

References

Contacto:

Isabel Amaral, Departamento de Ciencias da Comunicação e Linguagem (aposentada), Escola Superior de Educação, Instituto Politécnico de Setúbal, Av. Inf. D. João, 159, 1 Dto 2890-097 Alcochete, Portugal / isabel.maria.amaral@gmail.com
Martina Celizic, MALI DOM, Baštijanova 1D, 10 000 Zagreb, Croatia / martina.celizic@maildom.hz

(recebido em junho de 2015, aceite para publicação em julho de 2015)