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  • 8/18/2019 Participation of Children With Disabilities

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    Participation of children with disabilities:

    measuring subjective and objective outcomes

    P. Raghavendra

    Disability & Community Inclusion, Faculty of Health Sciences, Flinders University, Adelaide, SA, Australia

    Accepted for publication 2 May 2013

    Correspondence:

    Parimala Raghavendra,PhD, Disability & Community

    Inclusion, Faculty of Health Sciences, Flinders University,

    GPO Box 2100, Adelaide, SA 5001, Australia

    E-mail: [email protected]

    Participation of children with disabilities at home, school and

    community has been the focus of intense research over the past

    decade. Was a key factor the publication of the International

    Classification of Functioning, Disability, and Health (ICF,

    World Health Organization 2001), with participation as the

    ultimate outcome, or was the field of childhood disability 

    ready to move on from impairment-focused assessments and

    interventions? My personal view is that it was an opportune

    time as the field was looking to shift focus and the ICF pro-vided a meaningful framework. A decade on since the release

    of the ICF, and later ICF-Child and Youth (ICF-CY, World

    Health Organization 2007), it is timely to examine where

    we are in promoting health and well-being of children with

    disabilities.

    This special issue of  Child: Care, Health and Development  is

    devoted to articles investigating the development of tools to

    measure participation in various age groups, starting from pre-

    school children with disabilities to young people in various

    contexts; describing the characteristics of participation in

    family contexts of under researched groups, and some initial

    research on intervention. The two invited commentaries from

    world renowned experts in the field of participation research

    in children with disabilities, King (2013) from Canada and

    Granlund (2013) from Sweden, set the stage for the special

    issue. They have skilfully described the complexities of defining

    and measuring participation and propose an emphasis not only 

    on attending/frequency of participation in activities,but also on

    the experience/meaning of involvement in life situations. They 

    have eloquently summarized where the field has been and where

    it should be heading, providing suggestions for innovative

    approaches to measurement of participation outcomes.

    The nine papers focus on the following aspects of participa-

    tion measurement and intervention: (1) Development and steps

    taken to establish psychometric properties of the newer partici-

    pation measures for pre-school to school aged children and

     youth in various environments such as school, family contexts

    and community; (2) Including children with profound disabili-

    ties and those with communication impairments focusing onself-report and parent-reported measures; (3) The importance

    of measuring assistance provided by caregivers in supporting

    their children with disabilities to participate; and (4) A goal-

    orientated Internet social networking intervention to increase

    social participation.

    Pre-school children

    A majority of research in participation has focused on school

    age children from 6 years and above (e.g. Fauconnier et al . 2009;

    King  et al . 2010; Coster  et al . 2011). The focus is shifting to

    examining participation of younger children with disabilities so

    that, in accordance with early intervention philosophy, appro-

    priate strategies can be put in place to enhance participation

    including communicative participation.

    Communicative participation

    The first two articles in this special issue are on a new measure

    FOCUS© – Focus on the Outcomes of Communication Under Six 

    bs_bs_banner Child: care, health and developmentEditorial   doi:10.1111/cch.12084

    © 2013 John Wiley & Sons Ltd   461

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    – to measure communicative participation for children younger

    than 6 years of age (Thomas-Stonell  et al . 2013; Washington

    et al . 2013). This tool can be completed by parents and/or pro-

    fessionals and measures changes in communication for partici-

    pation following intervention. Communication is an importanttenet of participation. Communication skills and abilities are

    needed for all children to participate in many activities and to

    convey thoughts, views and feelings about their own sense of 

    participation, and the participation of their peers or siblings. If 

    nature and extent of involvement/engagement in life situations

    are to be targeted for intervention, and goals are to be mean-

    ingful for children, then communicative participation plays a

    key role. The article by Thomas-Stonell and colleagues (2013)

    presents information on whether FOCUS© captured changes in

    communicative participation in children with speech impair-

    ments only, language impairments only and with both impair-

    ments. It also provides information on average hours of therapy 

    that the children received which resulted in changes in com-

    municative participation. The second article (Washington

    et al . 2013) presents information on the construct validity of 

    FOCUS© as a tool to measure changes in communication as

    needed in many life contexts for children with disabilities. Infor-

    mation on reliability and validity of new tools is critical so that

    they canbe used in research and practice with confidence. There

    is dearth of tools to measure outcomes of communicative par-

    ticipation in children with disabilities; hence FOCUS© will be a

    valuable tool.

    Community participation

    The article by Khetani and colleagues (2013) investigated 1509

    caregivers’ perception of community participation of their pre-

    school children with developmental delay and other disabilities

    in the USA. The authors found that nearly 40% of caregivers of 

     young children from birth to 5 years with disabilities expressed

    difficulty participating in community activities because of 

    their child’s functional limitations such as behavioural difficul-

    ties, speech, mobility and other challenges. The outcomes will

    provide input into finalizing a new tool of  Young Children’s

    Participation and Environment Measure (YC-PEM), a caregiver-report survey of children from birth to 5 years of age. This new 

    tool would help practitioners to assess community participation

    restrictions and factors of child, family and environment that

    can be supported to facilitate participation.

    Youth participation

    Adolescence is a time of significant change, where youth shift

    from family-focused to peer-focused relations and develop their

    own identities. It is important to have reliable and valid   self-

    report  tools as young people spend more time on their own or

    with their peers than their family. Tools also need to capture

     youth’s participation in a variety of contexts and activities. One

    new self-report measure,   The Questionnaire of Young People’sParticipation-QYPP , from the UK, specifically measures the par-

    ticipation frequency of young people with cerebral palsy or

    other disabilities between 14 and 21 years of age across multiple

    domains (Tuffrey  et al . 2013). The tool can be used as a proxy 

    when the young person is unable to self-report. The article

    presents information on the systematic process undertaken to

    establish reliability and content validity.

    The Child and Adolescent Scale of Participation  (CASP) was

    originally developed as a parent-report measure for use with

    children and youth with disabilities (Bedell 2004). The article

    by McDougall and colleagues (2013) investigated the psycho-

    metric properties of CASP’s youth self-report version with

     young people between 11 and 17 years of age and compared

    both youth and parent reports of youth’s activity and partici-

    pation. The youth and parents’ reports differed significantly 

    with youth reporting higher participation. This study highlights

    the importance of collecting information from both the young

    people with disabilities as well as parents/caregivers. This may 

    be important for setting priorities for intervention and identi-

    fying supports needed to enhance participation.

    Participation in family activities and school

    Participation in family activities especially by children with

    profound disabilities is an under-researched area. The article

    by Axelsson and colleagues (2013) presents information on

    a newly developed instrument   Child Participation in Family 

     Activities (Child-PFA) (Axelsson and Wilder 2013) and the level

    of engagement by two groups of children in family activities.

    One group was families with a child with profound intellectual

    and multiple disabilities and the other group was families with

    a typically developing child. The level of engagement of children

    in family activities provides additional important information

    beyond being present in number of activities (frequency of 

    participation).

    School participation has been investigated more widely using

    observation, interviews and surveys (e.g. Eriksson  et al . 2007;

    Raghavendra  et al . 2012). However, a relatively new tool,  Par-

    ticipation and Environment Measure for Children and Youth

    (PEM-CY, Coster et al . 2010) is parent-report instrument that

    examines participation and environment across home, school,

    and community. The article by Coster and colleagues (2013)

    provides information on frequency of and level of involvement

    462   P. Raghavendra

    © 2013 John Wiley & Sons Ltd, Child: care, health and development , 39, 4, 461–465

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    in activities at school and the features of the school environ-

    ment that could be barriers or facilitators for students with and

    without disabilities in the USA and Canada.

    Caregiver support for participation

    Tools to measure participation have ensured that participation

    is measured without specific focus on support so that the

    primary focus is on participation in terms of what the indi-

    vidual actually does. However, with certain groups of children

    and young people, the assistance/supports provided by parents/

    caregivers and use of technology might be important in terms

    of planning interventions. The article by Bourke-Taylor and

    Pallant (2013) describes Rasch analysis on the Assistance to Par-

    ticipate Scale   (APS). This tool was developed to measure the

    primary carer’s estimate of the amount of assistance needed by 

    their school-aged child with a disability to participate in play 

    and leisure activities. The simple eight item measure provides

    information on additional assistance needed by children to

    participate in play and leisure activities.

    Intervention

    The articles in this issue and research published to date repeat-

    edly highlight that participation of children with disabilities at

    home, school and community is compromised (e.g. Imms et al .

    2008; King et al . 2010; Raghavendra et al . 2011, 2012). So what

    can the field of childhood disability do about this? Participationin a variety of activities is important for overall health and

    well-being (King  et al . 2003). How can we enhance, facilitate,

    optimize and/or increase the participation of children with dis-

    abilities? In 2004, as a visiting research fellow at Malaradalen

    University in Sweden, I embarked on a systematic review of 

    participation interventions for children with disabilities with

    Mats Granlund. We did not find any suitable studies and hence

    the review resulted in a zero or null review. In 2013, we were

    hoping to receive many manuscripts for the special issue focus-

    ing on intervention strategies/approaches/techniques to facili-

    tate participation; however, we only received one manuscript!

    The paper from our group (Raghavendra  et al . 2013) inves-

    tigated the effectiveness of training and support provided to

     youth with disabilities and families on goals around using the

    Internet for social networking and its impact on their social

    participation. The outcomes were positive both at the objective

    and subjective outcome levels. The lack of research internation-

    ally focusing on enhancing participation indicates the complex-

    ity of the construct of participation, challenges in measurement

    of outcomes, and paucity of tools to measure the outcome at

    societal and individual levels. A model for optimizing partici-

    pation has been proposed by Palisano and colleagues (2012)

    and this needs further utility and validation. The Participation

    Model for Augmentative and Alternative Communication pro-

    posed by Beukelman and Mirenda (2013) has been utilized by practitioners and researchers in the field of augmentative and

    alternative communication. This model might provide another

    framework for intervention as it begins with identifying current

    participation patterns and communication needs. Then the

    opportunity barriers (policy, practice, knowledge, skills and

    attitude barriers) and access barriers (motoric, linguistic, lite-

    racy, sensory/perceptual) that might be preventing the partici-

    pation are identified. Intervention strategies are targeted to

    address each of the barriers.

    Where to from here?As King (2013) has emphasized in this issue, participation is not

    one universal concept. The knowledge we have about partici-

    pation of children with disabilities is mostly from developed

    countries with adequate resources. What are the participation

    patterns of children with disabilities from developing countries

    with fewer resources, and countries where culture, values,

    beliefs, and attitudes might be different? For example, partici-

    pating in recreational and leisure activities may not be relevant

    or possible in an impoverished country where a young person

    with or without disability may be expected to be home to look 

    after younger siblings or farm animals. Hence, we need researchfrom a variety of countries/environments.

    With development of mobile technologies and software

    applications (Apps), it will be easier to measure the attendance

    or frequency of participation; the Apps may also be able to

    measure immediate response to the child’s sense of inclusion,

    belonging and involvement. Science, technology and practice

    can come together to advance and address issues raised by King

    (2013) and Granlund (2013); for example, measuring in-the-

    moment experience of participation, and increasing skills and

    strategies that might result in higher than average engagement

    in several activities.

    Conclusions

    The articles and the invited reviews add to our knowledge and

    understanding of the complex construct of participation and

    measurement issues and provide some solutions. Practitioners

    need to think about participation as the ultimate goal and

    outcome for children with disabilities in all facets of their life. I

    urge the researchers and practitioners to continue to investigate

    Editorial   463

    © 2013 John Wiley & Sons Ltd, Child: care, health and development , 39, 4,461–465

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    best ways to provide interventions at the individual, community 

    and societal level addressing personal and/or environmental

    barriers. I would also like to add that we all have a responsibility 

    to ensure the research evidence reaches practitioners, families

    and young people with disabilities in a timely manner. I hope tosee a special issue in the not too distant future that will specifi-

    cally be devoted to intervention frameworks/approaches and

    research with outcomes on facilitating participation and also

    focusing on issues relevant to children with disabilities living in

    different countries/environments.

    Acknowledgements

    I sincerely thank Gillian King, for co-editing this special issue

    with me and co-ordinating the review process for several manu-

    scripts. I also want to thank Helen McConachie, Associate

    Editor of  Child: Care, Health and Development  for inviting me

    to edit the special issue and providing ongoing support.

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    © 2013 John Wiley & Sons Ltd, Child: care, health and development , 39, 4,461–465