Child:

Editorial
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care, health and development

doi:10.1111/cch.12084

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: parimala.raghavendra@flinders.edu.au

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 provided 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 preschool 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

2013 John Wiley & Sons Ltd

it should be heading, providing suggestions for innovative

approaches to measurement of participation outcomes.
The nine papers focus on the following aspects of participation measurement and intervention: (1) Development and steps
taken to establish psychometric properties of the newer participation 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 disabilities and those with communication impairments focusing on
self-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 goalorientated 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, appropriate 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

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462 P. Raghavendra

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 professionals and measures changes in communication for participation following intervention. Communication is an important
tenet 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 meaningful 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 impairments only, language impairments only and with both impairments. It also provides information on average hours of therapy
that the children received which resulted in changes in communicative 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. Information on reliability and validity of new tools is critical so that
they can be used in research and practice with confidence. There
is dearth of tools to measure outcomes of communicative participation 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 preschool 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 childs functional limitations such as behavioural difficulties, speech, mobility and other challenges. The outcomes will
provide input into finalizing a new tool of Young Childrens
Participation and Environment Measure (YC-PEM), a caregiverreport 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

2013 John Wiley & Sons Ltd, Child: care, health and development, 39, 4, 461465

own identities. It is important to have reliable and valid selfreport tools as young people spend more time on their own or
with their peers than their family. Tools also need to capture
youths participation in a variety of contexts and activities. One
new self-report measure, The Questionnaire of Young Peoples
Participation-QYPP, from the UK, specifically measures the participation 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 psychometric properties of CASPs youth self-report version with
young people between 11 and 17 years of age and compared
both youth and parent reports of youths activity and participation. 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 identifying 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, Participation 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

Editorial

in activities at school and the features of the school environment 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 individual 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 Participate Scale (APS). This tool was developed to measure the
primary carers 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 repeatedly 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? Participation
in 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 disabilities? 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 focusing on intervention strategies/approaches/techniques to facilitate participation; however, we only received one manuscript!
The paper from our group (Raghavendra et al. 2013) investigated 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 internationally focusing on enhancing participation indicates the complexity of the construct of participation, challenges in measurement
of outcomes, and paucity of tools to measure the outcome at

463

societal and individual levels. A model for optimizing participation has been proposed by Palisano and colleagues (2012)
and this needs further utility and validation. The Participation
Model for Augmentative and Alternative Communication proposed 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, literacy, sensory/perceptual) that might be preventing the participation 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 participation 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, participating 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 research
from 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 childs 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-themoment 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

2013 John Wiley & Sons Ltd, Child: care, health and development, 39, 4, 461465

464 P. Raghavendra

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 to
see a special issue in the not too distant future that will specifically 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 manuscripts. 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, 461465