Measuring Activity and Participation Outcomes for Children and Youth with Acquired Brain Injury: An Occupational Therapy Perspective

Abstract

Introduction
Intervention outcomes for children and youth with acquired brain injuries should be measured in terms of participation in activities. The aim of this study was to explore the occupational therapy outcome measures used with this group.

Method
One cycle of an action research study, which focused specifically on occupational therapists, is reported. Ten occupational therapists working with children and youth with acquired brain injuries collated the outcome measures they used and mapped their frequently used measures onto the International Classification of Functioning, Disability and Health — Children and Youth, using established linking rules.

Findings
Forty-two outcome measures and assessments were identified. Of these, 19 were used frequently and 15 were used as outcome measures. All activity and participation domains were represented, with learning and applying knowledge, mobility, communication and self-care (except looking after one's health) particularly well covered.

Conclusion
Occupational therapists are using measures that reflect the domains of activity and participation, unlike those previously identified which were linked predominantly to body functions. The importance of occupational therapists working in rehabilitation teams is reiterated in that some of the domains that are not covered by occupational therapists impact on participation, for example, pain.

Full text

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British Journal of Occupational Therapy February 2013 76(2)
Research
Introduction
Acquired brain injuries are a major cause of disability in children and youth in
the United Kingdom (UK). There are approximately 800-900 major paediatric
acquired brain injuries (ABI) resulting in significant disability annually in
the UK: 250 of non-traumatic comas including meningitis and encephalitis
(Forsyth et al 2001), 300 paediatric strokes (Kirkham 1999), an estimated
150 severe traumatic brain injuries (Parslow et al 2005) and 189 brain tumour
survivors with significant disability (Brain Tumour Research 2011). Many
of them will be referred to occupational therapy, but there is a lack of litera-
ture describing effective interventions and therapists often feel ill equipped
to manage this group of children and youth (Jones et al 2007).
Research into the effects of rehabilitation for children and youth with
ABI is crucial in enabling identification of optimum techniques to generate
the best clinical outcomes. However, the measurement of complex interven-
tions such as brain injury rehabilitation ‘is easier said than done’ (British
Society of Rehabilitation Medicine 2005, p1). Outcome measures aim to
document changes objectively over time for individual children and youth
(Majnemer 2010), but there are no agreed gold standard outcome measure(s)
to evaluate the effectiveness of rehabilitation for children and youth with
severe ABI (Forsyth 2008). The complexity of the interventions and the
individuality of the child or youth himself or herself present a host of
Measuring activity and participation outcomes
for children and youth with acquired brain
injury: an occupational therapy perspective
Carolyn Dunford,1Katrina Bannigan2and Lorna Wales 3
Key words:
Young people,
adolescent,
paediatrics.
Introduction:
Intervention outcomes for children and youth with acquired brain
injuries should be measured in terms of participation in activities. The aim of this study
was to explore the occupational therapy outcome measures used with this group.
Method:
One cycle of an action research study, which focused specifically on
occupational therapists, is reported. Ten occupational therapists working with
children and youth with acquired brain injuries collated the outcome measures
they used and mapped their frequently used measures onto the International
Classification of Functioning, Disability and Health – Children and Youth, using
established linking rules.
Findings:
Forty-two outcome measures and assessments were identified.
Of these, 19 were used frequently and 15 were used as outcome measures. All
activity and participation domains were represented, with learning and applying
knowledge, mobility, communication and self-care (except looking after one’s
health) particularly well covered.
Conclusion:
Occupational therapists are using measures that reflect the
domains of activity and participation, unlike those previously identified which
were linked predominantly to body functions. The importance of occupational
therapists working in rehabilitation teams is reiterated in that some of the
domains that are not covered by occupational therapists impact on participation,
for example, pain.
© The College of Occupational Therapists Ltd.
Submitted: 24 January 2012.
Accepted: 14 January 2013.
1Head of Research, Harrison Research Centre,
The Children’s Trust, Tadworth, Surrey.
2Reader in Occupational Therapy/Director of
Research Centre for Occupation and Mental
Health, Faculty of Health and Life Sciences,
York St John University, York.
3Research and Clinical Specialist Occupational
Therapist, Harrison Research Centre,
The Children’s Trust, Tadworth, Surrey.
Corresponding author: Dr Carolyn Dunford,
Head of Research, Harrison Research Centre,
The Children’s Trust, Tadworth Court, Tadworth,
Surrey KT20 5RU.
Email: cdunford@thechildrenstrust.org.uk
Reference: Dunford C, Bannigan K, Wales L
(2013) Measuring activity and participation
outcomes for children and youth with
acquired brain injury: an occupational therapy
perspective.
British Journal of Occupational
Therapy, 76(2),
67-76.
DOI: 10.4276/030802213X13603244419158
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68 British Journal of Occupational Therapy February 2013 76(2)
Measuring activity and participation outcomes for children and youth with acquired brain injury: an occupational therapy perspective
challenges in capturing the effects of residential, multi-
disciplinary rehabilitation. Furthermore, identifying the
specific role of occupational therapy when it is interwoven
with a range of other health and education interventions
presents significant challenges.
Within a rehabilitation context, occupational therapy aims
to promote health and wellbeing by enabling participation
in occupations (College of Occupational Therapists 2009).
The World Health Organization (WHO) (2007, p9) defines
participation as ‘involvement in a life situation’. Participation
can also be seen as the ultimate goal of rehabilitation and is
associated with increased quality of life (Bedell and Coster
2008). The International Classification of Functioning,
Disability and Health – Children and Youth (ICF-CY) version
identifies the domains of activity and participation as learn-
ing and applying knowledge, general tasks and demands,
communication, mobility, self-care, domestic life, interpersonal
interactions and relationships, major life areas and commu-
nity social and civic life (WHO 2007). Environmental and
personal factors also need to be considered (WHO 2007).
Outcome measures need to consider both objective and
subjective dimensions that reflect the child’s engagement
in his or her common occupations in a range of environ-
mental settings. Such measures are likely to reflect activity
and participation domains. Ehrenfors et al (2009) in Sweden
identified a total of 175 formal assessments in use with
children with ABI and 43 of these were widely used. Despite
identifying a large number of assessments, aspects of the
ICF categories – activity and participation and the environ-
ment – were not covered. Thirty out of the 43 widely used
assessments were primarily linked to body functions
(Ehrenfors et al 2009). Given that occupational therapy, in
line with the ICF-CY, is not primarily concerned with body
functions but with activity and participation, these findings
were of concern. This prompted the occupational therapists
at The Children’s Trust (TCT) to examine their practice in
relation to outcome measurement.
TCT is the largest specialist residential rehabilitation
centre in the UK for children and youth with ABI, multiple
disabilities and complex health needs. TCT receives an
average of 49 referrals for residential rehabilitation every
year. The multidisciplinary team comprises 10 occupational
therapists plus doctors, nurses and carers, physiotherapists,
speech and language therapists, teachers, psychologists, family
therapist, play therapist, hospital play specialists, leisure team,
social workers and support staff. This team offers a 24-hour
approach to rehabilitation. TCT defines rehabilitation as a
process that seeks to enable children, youth and their families
to return to their lives as successfully as possible and to par-
ticipate fully at home, at school and within the community
following a brain injury.
The aim of this study was to explore the outcome mea-
surement practice of occupational therapists working with
children and youth with ABI in a specialist UK setting. This
would establish if the selection of outcome measures was
in keeping with the broader aspirations of rehabilitation
espoused by the ICF-CY.
Method
The decision was taken to replicate the work of Ehrenfors
et al (2009) to enable the present study to contribute to a
wider body of knowledge. This approach to research design
and data collection required some modification because
the focus of the study was on the use of outcome measures
in one organisation rather than in a nation. The data collec-
tion and analysis methods of Ehrenfors et al (2009) were
embedded into a broader action research methodology
because the team’s ultimate aim is to change its practice
around its use of outcome measures. The essence of action
research is that it combines research and action and it has
two common characteristics, that is, a research partnership
and a cyclical process (Waterman et al 2001).
A research partnership
The steering group was identified as the team of people who
would ultimately be responsible for the implementation of
any changes related to the use of outcome measures that
may be indicated by this study. This participatory approach
was adopted because any changes to established practice
are more successful if the people that the change is likely
to affect are involved (Hart and Bond 1995). The nature of
partnerships between the research and researched varies within
action research. The degree of involvement, or participation,
of the researched may range from cooperation to collective
action (Waterman et al 2001). In this study, the steering
group included key stakeholders, that is, researchers, senior
management, heads of professions and clinicians (including
three occupational therapists), to facilitate a participatory
approach. The steering group developed the data collection
process, which involved information gathering from the
wider team (including the seven other occupational thera-
pists), reflection and problem solving using Ehrenfors et al
(2009) as a guide. All information collected was collated,
discussed and analysed by the steering group.
A cyclical process (data collection)
In action research, data collection involves a cyclical process
using an action research cycle, which involves some kind of
action intervention (Waterman et al 2001). Action research
is dependent on context and so it cannot be prescriptive.
This is because, whilst action researchers follow a schema,
‘their approach is far less predetermined and generally lacks
detail in design “apart from that of the immediate future”’
(Waterman et al 1995, p19). What is reported here is a
retrospective account of how the data were collected. This
paper reports one part, that is the first cycle of action, from
a much larger action research study.
The cycle of action focused upon is the collation and
mapping of outcome measures used by occupational ther-
apists. In this cycle, with the support of the steering group
(see above), the occupational therapy team identified the
outcome measures they used in the department. It was not
necessary to secure formal ethical approval because the study
was a service evaluation and the process for collecting the
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British Journal of Occupational Therapy February 2013 76(2)
Carolyn Dunford, Katrina Bannigan and Lorna Wales
data was negotiated and agreed with participants through
the steering group and approved by TCT research committee.
Data analysis
Following Ehrenfors et al (2009), the data generated (that is,
the outcome measures identified) were analysed manually.
The outcome measures were mapped onto the ICF-CY
components of body functions and structures, activity and
participation, and the environment to identify domains
addressed and any gaps, using the linking rules established
by Cieza et al (2002, 2005). It was agreed that only frequently
used (more than 50% of the time) outcome measures were
to be mapped onto the ICF-CY, because in a specialist set-
ting such as this a wide range of measures is available but
many will only be used infrequently with very specific types
or ages of children or youth, for example, the Bayley Scales
of Infant Development (Bayley 2006).
The mapping of each measure was conducted by a
member of the steering group who knew the measure well
and was guided by the widely adopted eight linking rules
of Cieza et al (2005): good knowledge of ICF required; link
concept to most precise category; do not use ‘other specified’;
do not use ‘unspecified’ categories; if insufficient informa-
tion then code as not definable; use ‘personal factor’ where
relevant; use ‘not covered’ where relevant; and assign diag-
nosis to ‘health condition’.
Those measures used only for the purpose of assessment
and, therefore, not repeated were not mapped; for example,
Loewenstein Occupational Therapy Cognitive Assessment
(Itzkovich et al 2000). The majority of measures were designed
for documenting changes over time, with acceptable reliability
and validity and some evidence to support their use as an
outcome measure (see Table 1). The decision to use these
as outcome measures was a clinical one, even where they had
not specifically been designed for this purpose.The others
were included in the absence of measures relevant for
specific groups of children and youth, for example, those
under 3 years or in a minimally conscious or vegetative state
(see Table 1). Several measures are routinely collected and
submitted as a requirement of the UK Rehabilitation Outcomes
Collaborative (UKROC) and were included in the mapping
exercise, despite being adult measures, that is, Functional
Independence Measure + Functional Assessment Measure,
Northwick Park Nursing Dependency Score, Northwick
Park Therapy D ependency Score and Rehabilitation
Complexity Score (see Table 1).
In this study, the mapping of the measures was also
performed blind by one other steering group member to
increase the validity of the findings. Where there were dis-
agreements or uncertainty, the eight linking rules were
consulted and discussed until consensus was reached.
There was no disagreement that was not eventually resolved.
Table 1. Psychometric properties of frequently used outcome measures
Measure Validity Reliability Evidence to support use as outcome measure
Assessment of Motor and Process Skills (AMPS) Acceptable Acceptable Sensitive to small changes in activities of daily living
2 years+ (Fisher and Bray (Fisher and Bray >0.5 logits increase = statistically and clinically
Jones 2010) Jones 2010) significant change (Fisher and Bray Jones 2010).
Detailed Assessment of Speed of Handwriting (DASH) Acceptable Acceptable Evaluates effectiveness of interventions. Can be
9 years-16 years 11 months (Barnett et al 2007) (Barnett et al 2007) readministered after 3 months (Barnett et al 2007).
Developmental Test of Visual Motor Integration (VMI) Acceptable Acceptable Tests intervention effectiveness. Can be readministered
2-18 years (Beery et al 2010) (Beery et al 2010) after one month (Beery et al 2010).
Functional Independence Measure + Functional Acceptable Acceptable Proven sensitivity to clinically relevant change
Assessment Measure (FIM+FAM) (Hobart et al 2001) (Hobart et al 2001) (van Baalen et al 2006).
8 years+ (UKROC)
Goal Attainment Scaling (GAS) Moderate Moderate Detects change over time within and between groups
All ages (Steenbeek et al 2007) (Steenbeek et al 2007) (Steenbeek et al 2007).
Hawaii Early Learning Profile (HELP) Not tested Not tested Records developmental progress. Not standardised.
Birth–3 years
Measure of Processes of Care (MPOC) Acceptable Acceptable Useful for programme evaluation (King et al 2004a).
All ages (King et al 2004a) (King et al 2004a)
Northwick Park Nursing Dependency Score Not validated with children and youth but validity, reliability and sensitivity to change demonstrated
All ages (UKROC) with adults.
Northwick Park Therapy Dependency Score Not validated with children and youth but validity, reliability and sensitivity to change demonstrated
All ages (UKROC) with adults.
Pediatric Evaluation of Disability Index (PEDI) Acceptable Acceptable Identifies treatment progress. Can be repeated, no time
6 months-7 years (Haley et al 1992) (Haley et al 1992) limit prescribed (Haley et al 1992).
Rehabilitation Complexity Scale (RCS) Not validated with children and youth but validity, reliability and sensitivity to change demonstrated
All ages (UKROC) with adults.
Acceptable = 0.7 and above; moderate = 0.6 and above. UKROC = United Kingdom Rehabilitation Outcomes Collaborative.
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70 British Journal of Occupational Therapy February 2013 76(2)
Measuring activity and participation outcomes for children and youth with acquired brain injury: an occupational therapy perspective
Table 2. A summary of the outcome measures frequently used by the occupational therapists in the study and mapped onto the ICF domain
Outcome measures frequently used ICF domain ICF code
Assessment of Motor and Process Skills (AMPS) Learning and applying knowledge d160,d161,d163,d175,d177
General tasks and demands d210,d220
Mobility d140,d415,d420,d430,d440,d445,d450d460,d465
Self-care d510,d540,d5501,d560
Domestic life d6200,d630,d640,d6505,d6506
Products and technology e1151,e120
Mental functions b130,b140,b144,b147,b156,b160,b163b164,b176,b180
Detailed Assessment of Speed of Handwriting Learning and applying knowledge d130,d170
(DASH)
Developmental Test of Visual Motor Integration Learning and applying knowledge d130
(VMI) Mental functions b147,b1561
Functional Independence Measure + Learning and applying knowledge d132,d166,d170,d175
Functional Assessment Measure (FIM+FAM)* Communication d330
Mobility d4200,d450,d4551,d460
Self-care d510,d520,d530,d540,d550,d571
Domestic life d6200,d6300,d6301,d640,d6400
Interpersonal interactions and relationships d7
Major life areas d810-d839,d840-d859,d860-d879
Community, social and civic life d920
Mental functions b114,b140,b144,b152
Digestive, metabolic and endocrine functions b5105
Goal Attainment Scaling (GAS)* Can map to any domain
Hawaii Early Learning Profile (HELP)* Learning and applying knowledge d110-d129,d130-d159,d160-d179
General tasks and demands d210
Communication d310,d330,d331,d332,d335
Mobility d410-d429,d430-d449,d450-d469
Self-care d5100,d5300,d540,d550
Measure of Processes of Care (MPOC)* Support and relationships e340,e355,e360
Attitudes e430,e440,e450,e455
Northwick Park Nursing Dependency Score* Communication d330-d349
Mobility d420,d4551
Self-care d510,d520,d530,d540,d550,d560,d571
Domestic life d6300
Support and relationships e340,e355
Skin and related structures s810
Table 1 (continued)
Measure Validity Reliability Evidence to support use as outcome measure
Rivermead Behavioural Memory Test (RBMT) Acceptable Acceptable Parallel versions permit retest without practice effect
5 years+ (Wilson et al 1991) (Wilson et al 1991) (Wilson et al 1991).
School Function Assessment (SFA) Moderate Acceptable Documents progress and effects of intervention.
5-12 years (Davies et al 2004) (Coster et al 1998) Can be readministered after varying intervals of time
(Coster et al 1998).
Sensory Modality Assessment and Rehabilitation Not validated with children and youth but relevant measure for those with disorders of consciousness
Techniques (SMART) (Gill-Thwaites and Munday 2004).
18 years+ (but being validated for children and
youth at TCT)
Wessex Head Injury Matrix (WHIM) Acceptable Acceptable Monitors cognitive recovery. Can be repeated daily
16 years+ (Shiel et al 2000) (Shiel et al 2000) (Shiel et al 2000).
Acceptable = 0.7 and above; moderate = 0.6 and above.
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Carolyn Dunford, Katrina Bannigan and Lorna Wales
Table 2 (continued)
Outcome measures frequently used ICF domain ICF code
Northwick Park Therapy Dependency Score* General tasks and demands d2
Communication d7
Self-care d5
Domestic life d6
Major life areas d8
Products and technology e115,e120
Support and relationships e3
Services, systems and policies e5
Mental functions b152
Cardiovascular, haematological, immunological b440
and respiratory functions
Digestive, metabolic and endocrine functions b5100,b5101,b5102,b5103,b5105
Neuromusculoskeletal and movement functions b735
Pediatric Evaluation of Disability Index (PEDI)* Learning and applying knowledge d175
Communication d310,d330-349
Mobility d420,d4500,d4501,d4502,d4550,d4551
Self-care d510,d5201,d5202,d5205,d530,d5400,d5401,d5402,
d5403,d550,d560,d571
Domestic life d640
Major life areas d880
Mental functions b114
Rehabilitation Complexity Scale (RCS)* Self-care d530,d540,d550,d560,d571
Products and technology e115
Support and relationships e355
Rivermead Behavioural Memory Test (RBMT) Mental functions b144
School Function Assessment (SFA)* Learning and applying knowledge d145
General tasks and demands d210,d220,d230,d240,d250
Communication d310-d329,d330-349
Mobility d410,d415,d430-449, d4551,d470-d489
Self-care d510,d5205,d530,d540,d550,d560, d571
Interpersonal interactions and relationships d7400,d7402
Major life areas d820
Products and technology e310
Sensory Modality Assessment and Communication d310-d329,d330-d349
Rehabilitation Techniques (SMART) Mental functions b110
Sensory functions and pain b210,b230-b249,b250-b279
Neuromusculoskeletal and movement functions b760
Wessex Head Injury Matrix (WHIM) Mental functions b110, b114, b140, b144
Sensory functions and pain b210
Voice and speech functions b310
* = Outcome measures used by other professional groups at TCT that the occupational therapists work alongside. b = Body functions; s = Body structure;
d = Activity and participation; e = Environments.
Table 3. A summary of ICF-CY mapping
Body functions: Mental functions; digestive, metabolic and endocrine; cardiovascular, haematological, immunological and respiratory; neuromusculoskeletal
and movement related. No measure maps onto genitourinary and reproductive functions, although there are medical interventions that address these areas.
Body structures: Skin.
Activity and participation: Learning and applying knowledge; general tasks and demands; mobility; self-care (except looking after one’s health); domestic life;
communication; interpersonal interactions and relationships; major life areas; community, social and civic life.
Environment: Support and relationships; products and technology; services, systems and policies; attitudes. Natural and human-made changes to the
environment are not represented.
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72 British Journal of Occupational Therapy February 2013 76(2)
Measuring activity and participation outcomes for children and youth with acquired brain injury: an occupational therapy perspective
Findings
Forty-two outcome measures and assessments were identi-
fied that were used solely by occupational therapists or in
conjunction with other team members. Nineteen of these
measures were used frequently and, of these, 15 were used
as outcome measures. All activity and participation domains
were represented to some extent, with learning and applying
knowledge, mobility, communication and self-care occurring
most often in the mapping exercise. The body function and
structure domains covered were digestive, metabolic and
endocrine; cardiovascular, haematological, immunological
and respiratory; mental functions; neuromusculoskeletal and
movement-related functions; and skin integrity. The environ-
ment domains represented were support, relationships,
products, technology, attitudes and services, systems and
policies. Environment domains not represented were natural
and human-made changes to the environment. The mapping
of the outcome measures frequently used by occupational
therapists at TCT is shown in detail in Table 2. The measures
frequently used by occupational therapists at TCT map
onto various domains of impairment, activity, participation
and environmental aspects of health (see Table 2). The
ICF-CY mapping is summarised in Table 3.
The outcomes were initially mapped onto ICF-CY level
one chapter headings, of which there are 30 in total. The
only outcome measure that mapped onto any of the eight
body structure headings was the Northwick Park Nursing
Dependency Score (Turner-Stokes et al 1998) for skin
integrity. Six out of the eight body function chapter level
headings were represented, with the exceptions being voice
and speech functions and genitourinary and reproductive
functions. All nine activity and participation chapter headings
are represented, but no one measure covers all nine chapter
headings. Although self-care is particularly well covered, the
subheading of looking after one’s health is not covered at
all. Only one of the five environmental chapters is miss-
ing: natural and human-made changes to the environment.
Following analysis of the mapping process and consider-
ation of occupational therapy core skills and the specific
condition of ABI, the key gaps identified were pain, leisure,
play and the looking after one’s health aspect of self-care.
Discussion
Generally literature shows that the majority of outcome
measures used for children and youth with ABI have been
focused at the impairment (body functions and structure)
level and fewer directed at activity, participation and the envi-
ronment (Ehrenfors et al 2009, Aiachini et al 2010). The
outcomes used at TCT by occupational therapists include
a mixture, some at the impairment level but, reassuringly,
also some at the activity and participation level. Given the
nature of ABI, the authors consider it appropriate for
occupational therapists to use measures that consider the
brain injury impairment and the impact that it has on activity,
participation and the environment.
The key impairments in ABI are cognitive, physical and
behavioural (van Tol et al 2011); therefore, it was expected
to have some measures mapping to mental functions and
neuromusculoskeletal and movement-related functions.
Behaviour as a concept does not readily map onto a
specific area, but the activity and participation domain of
‘tasks and demands’ includes undertaking single and
multiple tasks, carrying out daily routines, handling stress
and managing one’s own behaviour and was, therefore,
thought to capture behavioural aspects. The School Function
Assessment (SFA) (Coster et al 1998), Northwick Park
Therapy Dependency Scale and Assessment of Motor and
Process Skills (AMPS) map onto tasks and demands.
Specific behavioural goals may also be identified using
Goal Attainment Scaling (GAS).
When working with children and youth with ABI, occu-
pational therapists need to have a clear understanding of
the child’s or youth’s level of impairment, to apply clinical
reasoning to hypothesise how these impairments will impact
on occupational performance, and to test these using activity
and participation measures (Adcock and Burke, in press).
Children and youth with ABI have a recovery period,
particularly during the first year post-injury, which can be
difficult to separate from natural development when mea-
suring intervention effects (Forsyth et al 2010). This can
be managed through the use of control groups and statistical
modelling using recovery trajectories.
Self-care is a key occupation and there are several
different outcome measures covering this domain, but the
looking after one’s health aspect of self-care is not covered.
Not only is it not measured as an outcome but also clinical
experience suggests that it is patchily addressed during
intervention. This is a significant omission as this is a
potential health promotion intervention that can ensure
that children and youth with disabilities make healthy lifestyle
choices for the future, and it can empower individuals to
take responsibility for managing their own health and
disability. For example, even 5-9 year olds can be expected
to avoid harmful substances, tell others when they are sick
and follow safety rules at home and school. Cycle 2 of the
action research process needs to explore interventions
provided related to looking after one’s health and to identify
a suitable outcome measure.
Interpersonal interactions and relationships are also
important in enabling participation in meaningful occu-
pations. Parents of children and youth with ABI develop
strategies over time to promote their child’s social partici-
pation (Bedell et al 2005). Occupational therapists have
the potential to identify and support successful strategies
with parents. The SFA covers ‘relating with persons in
authority’ and ‘relating with equals’ in the school setting,
which are important aspects of interpersonal interactions.
GAS identifies goals for therapy with parents /carers and
children and youth through a semi-structured interview.
Anecdotally, the goal setting process at TCT, using GAS,
often identifies goals relating to this domain, particularly
maintaining previous friendships and interacting with peers.
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British Journal of Occupational Therapy February 2013 76(2)
Carolyn Dunford, Katrina Bannigan and Lorna Wales
Goals such as going to the green, or to a burger café, with
friends have been identified in the past. Further analysis of
the domains represented by GAS will be explored in Cycle 2.
Occupational therapists could also use the Canadian
Occupational Performance Measure (Law et al 2005) to measure
the occupational therapy specific input related to specific
GAS goals (Cusick et al 2006) and this is currently under
discussion as a possible activity for a future cycle of action.
Gaps identified from ICF mapping exercise
As well as looking after one’s health aspect of self-care,
other gaps identified by the ICF mapping exercise are key
occupational performance domains for children and youth,
that is, play and leisure, and a suitable outcome measure
needs to be selected. The Pediatric Evaluation of Disability
Index (Haley et al 1992) has a brief section on engagement
in play, but more wide-ranging measures are required. The
Children’s Assessment of Participation and Enjoyment
(King et al 2004b) has also been identified as an outcome
measure for children and youth with ABI that identifies
participation in play and leisure activities and Cycle 2 will
consider using this in the future. Play activities and partici-
pation are also key domains for play therapists and hospital
play specialists at TCT who are keen to identify suitable out-
come measures. Future cycles of action could focus on an
exploration of how the interventions of play therapists and
specialists are different, or overlap with, occupational therapy.
As already noted, it may be that GAS is capturing outcomes
in the areas identified as gaps and Cycle 2 needs to analyse
the GAS goals being set and map them onto the ICF-CY.
Pain is another crucial impairment domain to address
as children and youth are unlikely to engage in the thera-
peutic process if they are in pain. Although pain is a key
area for doctors and nurses to address, occupational thera-
pists, alongside their colleagues, can have a role in iden-
tifying the appropriate tool and observing and monitoring
behaviours that may indicate that pain is an issue (Royal
College of Nursing 2009).
Measuring activity and participation
This mapping process did not separate activity and par-
ticipation, nor does the ICF-CY, but it defines activity as
‘execution of a task or action’ and participation as ‘involvement
in a life situation’ (WHO 2007, p9). Identifying whether the
measures are measuring activity or participation requires
further interpretation. However, an individual needs to be
able to perform an activity before he or she can participate.
The fact that someone can perform an activity does not
mean that he or she uses this skill to participate in life
situations (Bendixen and Kreider 2011). It has been noted
that participation is complex and poorly defined as a con-
struct and, therefore, difficult to operationalise (Coster and
Khetani 2008). Hoogsteen and Woodgate (2010) suggested
four attributes of participation:
1. The child must take part in something or with someone
2. Child must feel included or have a sense of inclusion
3. Child must have choice or control over what they are taking
part in
4. The child must work toward obtaining a personal or socially
meaningful goal (pp329-30).
This presents a potential definition that could be adopted
more broadly by occupational therapists working with
children and youth. If a conceptual framework can be agreed,
it is crucial that the outcomes of occupational therapy are
measured in terms of increased activity performance and
participation, as we know that children and youth with ABI
and other disabilities have reduced levels of activity and
participation compared with their typically developing peers
(Law et al 2011). The AMPS (Fisher and Bray Jones 2010)
and the SFA (Coster et al 1998) provide an opportunity for
occupational therapists to measure the activity and partici-
pation of children and youth with ABI and provide insights
into the potential challenges. Occupational therapy aims to
balance adapting tasks and environments with developing
strategies to enable children’s and youth’s participation.
The Assessment of Motor and Process Skills
(AMPS)
The AMPS is a measure of a person’s performance of activities
of daily living tasks in a natural, task-relevant environment
(Fisher and Bray Jones 2010). Every attempt is made to
ensure that the AMPS setting in the residential environment
is ecologically valid by moving task items and furniture
around, and practising using the appliances prior to the
assessment. Whilst AMPS in the residential rehabilitation
setting is primarily an assessment focusing at the activity
level, it also echoes some of the attributes of participation
mentioned earlier. Although it is not a measure of partici-
pation, the AMPS interview is a crucial part of the assess-
ment when the therapist gains a sense of the child’s previous
areas of participation in everyday tasks from the child’s
report. The two tasks that are subsequently performed for
assessment are agreed jointly between the therapist and
the child or youth.
Children and youth in a residential rehabilitation centre
following an ABI have reduced opportunities for activity and
participation. They have yet to return home and resume their
previous occupations or change their occupations in light
of their newly acquired performance limitations. The results
of the AMPS assessment can provide information for
children and youth and their families to make informed
decisions about their potential to re-engage in occupations
at home and in their communities. AMPS results indicate
whether the person falls within age-expected norms and
also prompts the therapist to rate the person’s level of
safety and independence. This is important evidence for
children and youth and their families to base future choices
about participation in occupation on their return home.
The School Function Assessment (SFA)
The SFA is a multidisciplinary tool designed to measure
primary school pupils’ participation in school life and maps
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74 British Journal of Occupational Therapy February 2013 76(2)
Measuring activity and participation outcomes for children and youth with acquired brain injury: an occupational therapy perspective
onto a number of domains (see Table 2). The SFA not only
considers the pupil’s abilities but also examines the extent
to which the environment acts as a support or barrier to
function. The school environment at TCT is a pupil referral
school unit and not the pupil’s local school, but the SFA
enables teachers and therapists to define the pupil’s level of
special educational needs and the support required for him
or her to access a future education placement. The SFA is also
used to guide education and therapy goal setting, prompting
consideration of participation issues. It can be seen from the
mapping process (Table 2) that the SFA reflects a broad range
of ICF-CY domains and captures input from the education
and therapy multidisciplinary teams.
There are a number of additional measures that have
been specifically designed to measure participation which
are not currently in use at TCT; for example, Children’s
Assessment of Participation and Enjoyment, and Participation
and Environment Measure for Children and Youth (King et al
2004b, Coster et al 2012). The steering group need to consider
using these measures in the next cycle of action. The ICF-CY
has only been in existence since 2007 and it will be refined
and developed over time whilst influencing clinical practice.
Core ICF sets are being developed for various conditions and,
whilst one exists for adults with traumatic brain injuries,
there is not yet one for children and youth with ABI (Aiachini
et al 2010). Checklists and questionnaires are also being
developed for children and youth of different ages, which
identify the changing nature of body functions, structures,
activity and participation from birth to 18 years.
The process of mapping and linking assessments, out-
come measures and interventions to the ICF-CY is challeng-
ing due to varying use of language to describe the concepts
and topics of interest (Cieza et al 2005). Furthermore, mea-
sures map onto different levels within the ICF-CY and, whilst
broad chapter headings may be represented, there may
still be significant omissions at lower levels, as shown by
self-care being generally well covered by several different
measures but none of them being mapped onto looking after
one’s health. Outcome measures for children and youth with
ABI need to take into account the nature of brain injuries,
recovery, the impact of interrupted development and the
child’s or youth’s ongoing development following the
injury (Wales and Dunford 2011).
A ‘basket’ of outcome measures has been identified for
use with adults with ABI (British Society of Rehabilitation
Medicine 2005). This study provides support for the use of
specific measures by occupational therapy researchers, as
well as practitioners, as part of a wider basket of measures for
rehabilitation. It is important to agree on suitable measures
so that, in the future, energy can be directed towards devel-
oping and evaluating interventions rather than measures.
Limitations
There are limitations that need to be considered in relation
to this study. There are inherent biases in action research
due to the more dynamic nature of the methodology. It reports
one cycle of action, which is only part of a much larger action
research study. As this cycle highlighted specific and impor-
tant issues for consideration by occupational therapists, its
validity and relevance are not undermined by being reported
in this manner. As only one group of occupational thera-
pists was focused on, others may find that more outcome
measures are used with children and youth with ABI; however,
considering that TCT is a leading specialist organisation
for this group of children and youth, and such a broad range
of measures was identified, it seems unlikely that coverage
has not been achieved.
It is also acknowledged that the measures identified in
this study belong to the practice of a specific group of occu-
pational therapists and only frequently used measures were
included. It cannot be assumed that these are indicative of
the practice of other teams of occupational therapists work-
ing with children and youth with ABI, as this would need
to be confirmed in future cycles of action or other studies.
Furthermore, the members of the steering group were not
experts in ICF-CY terminology and applied the eight link-
ing rules with reference to Cieza et al (2002, 2005) and TCT
colleagues’ work to the best of their ability. It is possible that
other researchers may have made different decisions.
Despite these considerations, potential measures for use
by occupational therapists working with children and youth
with ABI, and clear gaps in current practice, have been high-
lighted. This knowledge is invaluable in exploring the con-
tribution of occupational therapists to measuring activity and
participation with children and youth with ABI.
Conclusion
There is currently no holy-grail single measure for measur-
ing the effectiveness of rehabilitation for children and youth
with ABI; nor is there likely to be (Forsyth 2008). A range of
measures is required, focusing on the known impairments,
activity and participation and environment domains associated
with ABI, and this study has identified 15 potential candi-
dates for the children and youth ‘basket’. Although this study
identifies that there are more measures being used that
reflect the domains of activity and participation and the envi-
ronment than in previous studies, there are still gaps and a
lack of depth of coverage in significant areas. Furthermore,
the SFA is the only participation measure in use.
The relationship between activity and participation,
and the construct of participation, in relation to these
measures requires further exploration. Many of the mea-
sures identified reflected activity rather than participation,
with the SFA being the only tool that specifically measures
participation. There is a range of measures that explicitly
assesses participation which is not in current use at TCT.
Occupational therapists need to consider measuring their
interventions in terms of increased participation in occu-
pations that are meaningful to the child or youth and his
or her family.
Furthermore, the next cycle of action needs to explore
the findings from these outcome measures to identify domains
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75
British Journal of Occupational Therapy February 2013 76(2)
Carolyn Dunford, Katrina Bannigan and Lorna Wales
that are responsive to rehabilitation and those that are not.
Additional measures to cover the identified gaps need to
be agreed and relevant training provided to implement them
into clinical practice. Using measures that capture activity
and participation in addition to impairment measures is
important for occupational therapists to evaluate the effec-
tiveness of their interventions in terms of increased levels of
occupational performance for children and youth with ABI.
Acknowledgements
Thank you to The Children’s Trust and the Research Centre for Occupation in
Mental Health for supporting this project and to the steering group members
Fiona Adcock, Head of Brain Injury Community Team; Liz Bray, Head of Nursing,
Rehabilitation; Dr Gail Hermon, Clinical Director, Rehabilitation; Sally Jenkinson,
Director of Children’s Services; Helena Jones, Head of Nursing; Gemma Kelly,
Senior Physiotherapist; Jo Lloyd, Senior Occupational Therapist; and Amanda
Ruff, Head of Speech and Language Therapy.
Conflict of interest:
None declared.
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Key findings
■Measuring the effectiveness of rehabilitation for children and youth
with ABI requires a range of measures.
■Measures should focus on known impairments, and the impact on
activity, participation and environment domains.
What the study has added
More measures are being used that reflect the domains of activity, partici-
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Thank you to all those who have already submitted
manuscripts to be considered for the special issue of the
British Journal of Occupational Therapy planned for early
2014 on ‘Occupational Performance Measures for Health
and Wellbeing: Research and Practice’. We are now offering
a further opportunity for people to submit papers to be
considered for this special issue. We are happy to receive
research papers, critical reviews, practice analyses and
opinion pieces.
This special issue will provide a forum to present con-
temporary research about occupational performance measures
in terms of their use both in planning care and in document-
ing occupational performance outcomes. Occupational
performance results from complex interactions between the
person and the environments in which he or she carries out
activities, tasks and roles that are meaningful or required of
him or her (Baum and Christiansen 2005).
The special issue will be guest edited by Professor
Carolyn Baum, Occupational Therapy and Neurology, and
Elias Michael Director, Program in Occupational Therapy,
Washington University School of Medicine, St Louis, MO, USA,
and a member of the British Journal of Occupational Therapy’s
International Advisory Board.
Priority will be given to research manuscripts that have a
direct impact on practice or policy. Manuscripts should be
submitted in the normal manner (http://mc.manuscriptcentral.
com/bjot) and will be considered for publication using the
journal’s usual peer review process.
Authors should indicate clearly in their covering letter and
at the end of the abstract that they wish their submission to
be considered for inclusion in the ‘Occupational Performance
Measures’ special issue.
The next deadline for submission is 29 April 2013. If you
have any queries, please contact either: Professor Diane Cox,
Editorial Board, email: diane.cox@cumbria.ac.uk, or Dr Justine
Williams, Editorial Assistant, email: justine.williams@cot.co.uk,
Tel: 00 44 (0)20 7450 2313.
Baum CM, Christiansen C (2005) Overview of a PEOP framework to support
occupation-based practice occupations. In: C Christiansen, CM Baum, eds.
Occupational therapy: performance, participation and well-being.
3rd ed.
Thorofare, NJ: Slack.
Special Issue – Occupational Performance Measures for Health and
Wellbeing: Research and Practice
Call for papers Professor Carolyn Baum
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