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Journal of Communication Disorders 44 (2011) 261–275
Contents lists available at ScienceDirect
Journal of Communication Disorders
Case report
Applying the WHO ICF framework to communication assessment and
goal setting in Huntington’s Disease: A case discussion
Emma Power a,*, Alison Anderson b, Leanne Togher a
a
b
Speech Pathology, Faculty of Health Sciences, University of Sydney, East St Lidcombe, 1825 NSW, Australia
SWAHS, NSW Health, NSW, Australia
A R T I C L E I N F O
A B S T R A C T
Article history:
Received 29 March 2010
Received in revised form 14 November 2010
Accepted 7 December 2010
Available online 24 December 2010
Purpose: Huntington’s Disease (HD) is a fatal, hereditary neurodegenerative disorder that
is characterized by a triad of motor, cognitive and psychiatric symptoms that impact on
both communicative effectiveness and the treatment techniques used to maximize
communicative participation. The purpose of this article is to describe the application of
the World Health Organization’s International Classification of Functioning, Disability and
Health (ICF) to communication assessment and goal setting for a 37 year old man with HD.
Method: Communication assessment consisted of qualitative interviews based on the ICF
framework with the client and his mother, supplemented with quantitative communication assessments. Analysis and conceptualization of assessment information was
completed with a modified version of the Rehabilitation Problem Solving Form (RPS-Form)
(Steiner et al., 2002).
Results: While impairments in body structures and functions were evident, analysis
revealed that environmental factors such as family support were both key barriers and
facilitators to communicative participation.
Conclusions: This case illustrates the potential of using the ICF to conceptualize
communicative functioning and disability in HD and particularly highlights the
importance of consideration of personal and environmental factors in revealing
contributions to activity limitations and participation restrictions. Further investigation
of applications of ICF for individuals with HD is suggested.
Learning outcomes: As a result of this activity, readers will recognize the application of
the WHO ICF to assessment and goal setting in a complex hereditary condition,
Huntington Disease. As a result of this activity, readers will describe the use of the
Rehabilitation Problem Solving Form (RPS-Form) for communication disorders. As a result
of this activity, readers will identify relevant issues in comprehensive communication
assessment of a fatal, degenerative neurological condition such as the advantages and
challenges of clinical use of the ICF and its coding. As a result of this activity, readers will
introduce life storybooks as a potential legacy item in degenerative diseases.
Crown Copyright ß 2010 Published by Elsevier Inc. All rights reserved.
Keywords:
Huntington Disease
ICF
Assessment
Goal-setting
Rehabilitation
1. Introduction
Huntington’s Disease (HD) is a hereditary, fatal neurodegenerative condition that can have a profound effect on an
individual’s communication. Subcortical and cortical degeneration in HD results in physical, cognitive and emotional
symptoms that manifest between 35 and 40 years of age (Folstein, 1989). There is a slow progression of these symptoms over
* Corresponding author. Tel.: +61 2 9351 9748; fax: +61 2 9351 9173.
E-mail address: [email protected] (E. Power).
0021-9924/$ – see front matter . Crown Copyright ß 2010 Published by Elsevier Inc. All rights reserved.
doi:10.1016/j.jcomdis.2010.12.004
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an average of 16 years, although this can be highly variable ranging from 4 to 38 years (Folstein, 1989). Consequently, up to
88% of people with HD require residential care and virtually all people with HD need long-term medical, nursing and allied
health support for themselves and their families (Nance & Sanders, 1996).
The primary communication symptoms in HD include progressive deterioration of speech and cognitive-linguistic skills (see
Yorkston & Beukelman, 2007 for a detailed review). In summary, individuals may present with hyperkinetic or occasionally
hypokinetic dysarthria, partially reflecting the underlying movement disorder of chorea (Darley, Aronson, & Brown, 1969).
Speech intelligibility may be significantly reduced for everyday listeners (Klasner & Yorkston, 2005) and some individuals may
be non-verbal in later stages of the disease (Podoll, Caspary, Lange, & Noth, 1988). Cognitive-linguistic impairments observed
include deficits of problem solving and understanding complex or implied meanings (Chenery, Copland, & Murdoch, 2002;
Murray & Stout, 1999). Social situations may be problematic due to difficulties following conversational rules (pragmatics) and
interpreting facial expressions and tone of voice (Speedie, Brake, Folstein, Bowers, & Heilman, 1990). In later stages, individuals
may exhibit primary language impairments such as reduced syntactic complexity of sentences, word finding problems as well
as verbal and written comprehension difficulties (Murray, 2000; Wallesch & Fehrenbach, 1988).
The complex interplay of disease symptoms and the hereditary nature of HD increase the challenge of supporting
individuals with their communicative participation and treatment options. Motor deficits such as chorea and dysphagia
(Young et al., 1986), cognitive decline such as short-term memory loss and subcortical dementia (Bamford, Caine, Kido, Cox,
& Shoulson, 1995) and emotional changes such as agitation, apathy, depression and aggression (Paulsen, Ready, Hamilton,
Mega, & Cummings, 2001) may all impact on the effectiveness of communication assessments and treatments (Klasner &
Yorkston, 2001). HD is autosomal dominant and each child of an affected parent has a 50% chance of inheriting the disease.
The marital and parental pressure on families often leads to significant family breakdown and a difficult upbringing for
children (Keenan, Miedzybrodzka, van Teijlingen, McKee, & Simpson, 2007; Korer & Fitzsimmons, 1985). The hereditary
nature of the disease and individuals’ prior experience with it may influence how they cope with life and influence how they
approach assessment and treatment planning (Hunt & Walker, 1989).
Therefore, assessment and goal setting in HD can be complex due to the long-term triad of symptoms and complex social
dynamics associated with the hereditary nature of the disease. To date, research into communication difficulties in HD has
focused largely on communication impairments with limited use of functional tasks. The impact of speech and cognitivelinguistic impairments on an individual’s daily activities and life participation has rarely been studied in HD and to our
knowledge, no communication assessments have been specifically designed for, or standardized and validated on the HD
population. The challenge for clinicians is to create assessment protocols that capture the relative contribution of these
disease-related factors but also integrate social and environmental factors to develop interventions aimed beyond the level
of impairment to life participation.
The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) (2001) is a
potential biopsychosocial framework to meet this challenge with a person-centred approach. It offers the opportunity to
systematically conceptualize assessment and goal setting by considering disability and functioning at the level of body
functions and structures and also the activities people undertake (the execution of a task or action) and at a societal level, the
areas of life in which they participate. Critically, it also recognizes that these domains cannot be understood without
consideration of contextual factors and adds these elements to the previous International Classification of Impairments,
Disabilities, and Handicaps (ICIDH) (World Health Organization, 1980). Contextual factors include the person’s environment
from the physical to societal level and also personal factors such as age and gender that may affect the way they experience
their health condition. In a disease with such a complex interplay of symptoms and social and familial consequences, the
multidimensional biopsychosocial nature of the ICF offers an important clinical tool for speech-language pathologists
working with people with HD.
While the ICF has been applied to some clinical areas in speech-language pathology (e.g., Brush, Threats, & Calkins, 2003;
Ma, Worrall, & Threats, 2007), rehabilitation medicine (Steiner et al., 2002) and neurodegenerative disease excluding HD
(Lomax, Brown, & Howard, 2004; Muo et al., 2005), experts in the field have conceded even recently, that it is yet to be
commonly integrated into clinical and research practice (Ma, Threats, & Worrall, 2008). The literature contains articles in
which the ICF is applied to hypothetical case studies (e.g., Brush et al., 2003) or more broadly in conceptualizing
communication related functioning in health conditions (e.g., dementia; Byrne & Orange, 2005). Additionally, some authors
have used the ICF framework and classification codes in order to describe the ICF’s application to a particular area of speech
pathology (e.g., dysphagia; Threats, 2007b). However there are no reports applying the current WHO ICF framework and
coding to actual clinical cases in communication disorders for HD. A case report, based on the previous classification system,
however, provides some encouragement for this approach (Klasner & Yorkston, 2001). Klasner and Yorkston (2001)
demonstrated some success in implementing linguistic and cognitive supplementation strategies for a man with HD living in
the community to improve his conversations with his wife and his ability to complete daily tasks. They utilized impairmentbased assessments and qualitative interviews with the man and his wife to formulate activity and participation-based
treatment goals. Klasner and Yorkston reported the goals with broad reference to the WHO’s previous beta classification
system, the ICIDH-2. It is not clear whether the ICIDH-2 was used systematically to drive the development of the content for
the qualitative interviews in the assessment phase. Although the ICIDH-2 beta form did address environmental and personal
factors, these were not explicitly considered in the assessment or analysis. Despite this, Klasner and Yorkston considered the
use of qualitative interviews, with a focus on participation to be crucial for development of goals targeted at everyday life
situations of a man with HD.
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In this article we describe the first application of the ICF to communication assessment and goal setting for a man with HD
living in a residential care setting. We use a case-based approach to extend previous research (Klasner & Yorkston, 2001) by
applying the ICF as a general conceptual framework and explicitly examining the contribution of environmental and
personal factors on functioning and disability. We also use the ICF to systematically guide the content of qualitative
interviews and examine the feasibility of its coding system for the assessment and goal setting process. Utilizing such a casebased approach, especially in rarer disease populations and newer research areas, provides a detailed examination of the
translation of theoretical constructs into clinical process and provides further grounding to guide future research and clinical
practice (Edwards, Dattilio, & Bromley, 2004).
2. Method
2.1. Case report
ER, a 37 year old man, was diagnosed with HD at age 26 by a neurologist in 1996. For 5–6 years prior to diagnosis he had
increasing symptoms, including dropping objects, behaviour change and arm and facial chorea. ER’s father passed away at
age 33 with HD. ER’s two siblings both had HD. One sibling had a juvenile onset and died aged 16 and the other sibling died in
a residential care facility aged 33. ER obtained a mechanical trade qualification and prior to stopping work was employed as a
petrol station attendant. ER had two children aged between 5 and 10 years from a relationship that ended in 1993. Despite
his strong attempts to maintain contact with his children, he was estranged from them. He entered specialized residential
care in 2002 some distance from his home and his main family contact was his mother. Medical reviews were conducted to
stage disease severity using the Unified Huntington’s Disease Rating Scale (UHDRS) (Huntington Study Group, 1996). At the
time of assessment, ER’s UHDRS motor, neuropsychiatric, functional and cognitive totals scores were 74, 16, 42 and 25,
respectively indicating he was in the advanced stages of the disease. ER had significant limb and truncal chorea, moderate
apathy as well as visual gaze difficulties and he required assistance with most activities of daily living.
2.2. History of communication assessment
In early 2003, a number of assessments were administered to describe ER’s communication skills across the impairment,
activity and participation domains of the ICF. The Western Aphasia Battery (WAB) (Kertesz, 1982), the Frenchay Dysarthria
Assessment (Enderby, 1983), and the pragmatic protocol (Prutting & Kirschner, 1987) examined his expressive and receptive
language processing (impairment level), speech intelligibility (activity and participation), as well as pragmatic skills in
individual and group conversations (activity and participation). ER, six nurses working in a specialist residential care unit for
people with HD and two speech-language pathologists experienced in HD rated his communication effectiveness using a
modified 20-item version of the Communicative Effectiveness Index (CETI) (Lomas et al., 1989) (activity and participation).
ER’s mother was unable to participate in the assessment due to health reasons. The original published CETI was designed to
evaluate functional communication of people with aphasia and was composed of visual analogue scales using the anchors ‘as
able before the stroke’ and ‘not at all’ at either end of a 10 cm line. The original form was modified to allow for staff, families
and clients with HD to rate communication using a simplified visually presented 5 point scale (1. Never able, 2. Rarely able, 3.
Sometimes able, 4. Mostly able, 5. Always able). Additionally, items were added or modified to account for intelligibility,
ability to repair conversation, comprehension of information and both starting as well as maintaining conversations. For
example, the original item 10, ‘Having a conversation and changing the subject’ was divided into ‘Starting a conversation’ and
‘Continuing conversations and changing the topic’. Four items were added, including ‘Make your speech clear’, ‘Understand
instructions from staff’, ‘Understand complex information’, and ‘Making yourself understood if others can’t understand you’.
At the time, ER also participated in the speech-language pathology weekly resident ‘Talking Group’ (Berarducci, Power,
Anderson, & Togher, 2003) and had regular mealtime dysphagia review assessments.
2.3. Intervention request
A few months following the communication assessment, ER’s mother reported to the service social worker that she and
ER were concerned for the loss of relationship with his children. She requested assistance to pass on information about ER to
his children should they re-connect in the future. Referral to speech-language pathology occurred at the interdisciplinary
case conference and speech-language pathologists investigated the intervention request further with ER and his mother
using semi-structured interviews. This information was combined with findings from the recent communication
assessments.
2.4. Semi-structured interviews
Similar to Klasner and Yorkston’s (2001) approach, we chose semi-structured guided interviews to examine
communication-related activities and participation from ER and his mother’s perspective as the above assessments
covered a more narrow context. The interview questions were structured according to the components of ICF framework to
conceptualize ER’s functioning and disability, but also to explore personal and environmental factors. No formal
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Table 1
Examples of opening questions and probes used in the qualitative interviews.
Areas considered
Examples
Opening questions
‘Tell me about what communication is like for you/and ER now?’
Probe: ‘Can you compare ‘in person’ versus over the phone or in letters?’
Clarifier: ‘Do you mean how clear speech is, or how much he says to you?’
‘What would you like to achieve by working with speech pathology?’
Functioning and disability
‘What communication situations do you most enjoy/are most frustrating?’
‘In terms of communication, what is working well for you/you and ER’?, ‘What is more difficult?’
‘Tell me about this in relation to your life?’
Probe: ‘‘For example, reading/following sport?’’
‘Tell me about this in relation to your relationships?’
Probe: ‘For example, being a father/son?’
‘What parts of your life do you find rewarding/disappointing?’
Environment: barriers
‘Tell me about things that make communication/being involved in life more difficult?’
Probe: ‘. . .in relation to [equipment or technology/the environment here
(at the residential facility)/people in your life/the health system and how it is set up]?’
Facilitators
‘What things do you think help communication/being involved?’
Probe: as above
Personal factors
‘Looking beyond the HD, what personality and other factors do you think are
important for us to know?’
Probe: ‘Tell me about your coping strategies’
Perceptions of the future
‘Tell me about how you see your/ER’s communication over time’
As above for Environment but with future tense
Client priorities
‘With the options we have, tell me about the most important to least important for you’
questionnaires or scales were available for these purposes. We explored current as well as potential future communication
issues for ER and his mother. The addition of future issues is consistent with an anticipatory approach to communication
management in degenerative diseases where future communication decline is factored into communication management
plans (Yorkston & Beukelman, 2007). The interview followed suggestions by Creswell (2003) and utilized open-ended
questions based on the components of the ICF, followed by focused probes to further explore and clarify information (see
Table 1 for examples). The interview also included questions on their perception of future communication issues and
targeted their priorities for intervention. As ER had some difficulty understanding complex information, questions posed to
him were more structured and he was given more time to respond.
2.5. Analysis and coding
Analysis and coding of the quantitative and qualitative data occurred in a number of steps and utilized a modified version
of the ICF-based Rehabilitation Problem Solving Form (RPS-Form) (Steiner et al., 2002). The RPS-Form has been used to
document rehabilitation assessment and clinical problem solving in physical therapy. The original form has two sections.
The first covers patient and family perspectives of problems and disabilities in their own words under the headings of body
structure/function and activities and participation. The second section includes the health professional’s perspectives on
mediators relevant to identified target problems and allows the professional to document these under body structure/
function and activities/participation as well as contextual factors. For the current case, the form was modified with
permission in two ways (see Fig. 1). Firstly, a specific section was added to document client and family’s opinions on
environmental and personal factors. Secondly, the modified form contains an added column for consideration of future issues
to reflect the degenerative nature of HD. For our purposes, the ‘staff’ section does not strictly contain assessment
observations directly made by staff alone. It may also contain information gained from the client and family through
questionnaires, rating scales or interviews as well as observational assessments. The distinction made here is that both types
of information are interpreted and coded by the staff member according to their perspective to create a holistic picture of
functioning. This division preserves the integrity of the client’s and family’s input as much as possible in their own words, but
also considers their perspective as part of the integration of data utilized and coded by staff.
In the first step of the analysis, results from quantitative testing were listed in a document. Then, during the semistructured interviews with ER (face to face) and his mother (over the phone), field notes were taken by one of the speechlanguage pathologists (EP). A content analysis of field notes was completed and verbally reflected back to ER and his mother.
They provided feedback on whether they concurred with statements or advised of amendments to maximize validity
(Creswell, 2003). The content analysis was guided by the interview format and statements were divided into the broad
domains of the ICF, i.e., body structure and functions, activity and participation, environmental factors and personal factors.
Statements were divided into current or future focused issues and then entered on the modified RPS-Form in the client and
family sections. Information from ER’s responses to the modified CETI was also included here. Then following guidelines of
[()TD$FIG]
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Fig. 1. Rehabilitation Problem Solving Form (RPS-Form). ß by Dr Werner Steiner, 2002. Modified by Dr Emma Power with kind permission.
the AIHW (Australian Institute of Health & Welfare, 2003), each item was coded according to the ICF alphanumeric coding
system. Body functions, body structures, activities and participation and environmental factors were classified by drawing
on each ICF chapter and ‘nested’ codes within each chapter (see Appendix A for information of coding system with
examples). Personal factors are not yet coded in the ICF. We chose to conceptualize ER’s functioning beyond the broad
chapter headings and coded to the fourth classification level where applicable with respect to the detail of our assessment
results. This detail enabled us to analyse ER’s assessment results with greater specificity for determining management goals.
Utilizing the specific ICF alphanumeric coding system assisted our analysis by enabling us to manage this complex
information in a structured and replicable way.
The ICF coding is neutral and so qualifiers are required to provide a meaningful understanding of an individual’s
classification of functioning and disability. We contained coding of qualifiers to the level of the first qualifier, i.e., a generic
qualifier that represents the extent or severity of the impairment or activity and participation difficulty for ER’s performance
(World Health Organization, 2001). The first level qualifier for environmental factors consists of the extent to which an
environmental factor was a barrier or facilitator (World Health Organization, 2001). This qualifier parallels more traditional
clinical practice notions of severity. Coded results were then transferred to the ‘Staff’ sections of the RPS-Form.
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2.6. Verification and reliability
For the content analysis, the original de-identified transcript was reviewed by an independent, qualified speech-language
pathologist. Any disagreements on the allocation of statements to ICF components were resolved with consensus discussion.
For the ICF coding, inter-coder reliability with the same independent rater was established for the ICF codes to the fourth
classification level for chapter categories. While we were able to conduct reliability ratings for the coding, we felt that
severity of impairment, activities and participation and extent of environmental barrier/facilitators was best determined
using a consensus-based approach by two clinicians (EP, AA) who had worked face to face with ER for the assessment.
2.7. Informed consent
ER and his mother gave written informed consent for publication of the case study on forms approved by the local Human
Ethics Committee. ER’s mother edited components of this manuscript relating to ER’s case history.
3. Results
3.1. Communication assessment findings
3.1.1. Speech functioning
On testing, ER presented with mild hyperkinetic dysarthria characterized by imprecise consonants, intermittent strainedstrangled and hoarse vocal quality. Forced inspiration–expiration and reduced respiratory control was observed during
speech, which may have contributed to shorter sentences and variable phrasing. He had some difficulty varying loudness
(often using excessive loudness) and presented with pitch variations. Despite some motor deficits and decreased
naturalness, he scored at ceiling on the word and sentence level intelligibility testing. Staff judged him to have mildmoderate intelligibility difficulties in 1:1 and group conversations and noted he needed to repeat himself. Intelligibility
fluctuated with his severe truncal chorea and background noise. ER reported using some of his own speech strategies such as
taking a good breath before talking to ‘have enough air’.
3.1.2. Cognitive linguistic functioning
ER’s WAB quotient was 86.6, classifying him with a mild aphasic impairment. Overall, he took increased time to provide
answers and follow instructions on testing. His picture description consisted of simple utterances with reduced grammatical
complexity. He could identify objects and follow one- and two-step commands, but had difficulty with three-part
instructions. Word fluency was reduced. ER was able to read and comprehend paragraph level material well. However, his
chorea appeared to contribute to difficulty writing legibly and writing more than a phrase was laborious. Spelling errors
were also observed.
Observation of ER’s pragmatics skills in 1:1 and group settings revealed mild-moderate difficulties across several areas.
He had some limited topic selection, increased pause time, a small number of interruptions and amount of overlap, reduced
quantity of output with short turns and a reliance on the communication partner to initiate and maintain topics. He varied
his communicative style for sensitive, serious and humorous topics and he revised if there was a communication breakdown.
He listened well to others’ conversations, provided some opinions and observations and used a variety of speech acts (e.g.,
requests, opinions, and statements). He appeared more animated and discussed a wider range of conversational topics in the
group situation compared to one to one. Intelligibility and prosodic ability were mildly impaired as stated above.
Nonverbally, his body posture, arm and leg movements were distracting and more subtle gestures were distorted by facial
and limb chorea. Sometimes ER required prompts and encouragement to attend the group.
With regard to communicative effectiveness, ER rated himself as ‘Mostly able’ (8/20) and ‘Always able’ (7/20) to
participate in the modified CETI items, with an average rating of 4.0/5. He identified that he was ‘Rarely able’ or ‘Sometimes
able’ to ‘Continue conversations and follow the topic’, ‘Be part of a fast conversation with other people talking’ and
‘Understand complex information’. ER’s ratings were consistent with speech-language pathologists (n = 2, average rating 4.2)
and nursing ratings (n = 6, average rating 4.1), indicating some consistency in perception. However, staff rated his ability to
‘Describe things in detail’ and ‘Start conversations with others’ lower (‘Rarely/Sometimes able’) compared to ER (‘Mostly’).
Staff reported that ER met most of his basic communicative needs without significant help.
3.2. Semi-structured interviews and ICF coding
The combined coded interview and assessment data are represented on the modified RPS-Form in Fig. 2a and b. Due to the
density of responses and issues, the tables are divided into functioning and disability and then contextual factors separately,
although it is acknowledged these components are inter-related. Inter-rater reliability agreement for the ICF coding was 93%.
3.2.1. Functioning and disability
ER presented with mild-moderate impairments in speech functions (b310.1, b330.1, b320.1, b760.2, b440.2). He also had
impairments in higher level cognitive functions (b164.2). Many of his primary language functions (mental functions of
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267
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language) were intact. However, he had some mildly reduced syntactic complexity and auditory comprehension impairment
(b167.1). His written expression was poor and laborious (b16711.3). His chorea contributed to difficulty controlling
voluntary limb/truncal/facial movements (b760.3) and he had some apathy (b1301.2). ER’s insight into his communication
abilities appeared only mildly reduced (b1644.1) and was considered a relative strength in his functioning.
ER’s activity and participation related strengths included good reported ability to understand nursing commands
(d310.0) with an intact ability to communicate immediate needs (d2). The most important activity limitation/participation
restriction prioritized by ER was his complete inability to interact and converse with his children (d350.4) and an inability
perform the role of father and be involved in their lives (d7600.4). He and his mother expressed strong concerns about their
lack of involvement and relationship with his children at the time and into the future (ER: ‘I can’t see my kids or be their dad’,
and ‘they won’t understand me later when I get worse’). They acknowledged that they had exhausted options for this
relationship and were looking to alternative ways of communicating in the future. Other limitations and restrictions
identified by ER and his mother as most important included decreased speech intelligibility, particularly on the phone with
his mother (d330.1-2), reduced initiation (d3500.2) and maintenance of conversations with other residents and his mother
Fig. 2. (a) Rehabilitation Problem Solving Form (RPS-Form) for functioning and disability completed based on ER’s qualitative and quantitative assessment
data. ß by Dr Werner Steiner, 2002. Modified by Dr Emma Power with kind permission. (b) Rehabilitation Problem Solving Form (RPS-Form) for contextual
factors completed based on ER’s qualitative and quantitative assessment data. ß by Dr Werner Steiner, 2002. Modified by Dr Emma Power with kind
permission.
[()TD$FIG]
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Fig. 2. (Continued ).
(d350.2-3). ER also had reduced ability to initiate and maintain a relationship with his mother (d6701.2). His socializing was
dependent on others to provide opportunity (d9205.3).
3.2.2. Contextual factors
Examining contextual factors allowed us to explore perceived contributors to participation functioning and disability.
ER’s mother and speech-language pathologists identified that a lack of specialized facilities close to their home (e580.3)
resulted in fewer communication opportunities and quality time together as ER’s mother could not frequently visit in person.
She also identified that she understood that his speech was ‘a little hard to understand’ and she needed to take more
responsibility for the conversation. However, ER’s mother considered the background noise near the nurse’s station as the
main difficulty in phone conversations with him (e350.1) as it meant she had to listen harder and ask him to repeat more.
Despite some speech and language impairments, ER’s communication functioning appeared potentially sufficient to
communicate with his children. His reduced activities and participation in relation to his children was identified by staff and
the family as being due to a complete barrier of family estrangement (coded as support and attitudes e310.4; e410.4) rather
than impairments of speech and language functions or personal factors (e.g., not desiring contact with them). Speech-
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language pathologists, staff and the family all reported that in the future, they were very concerned that his speech and
language decline would contribute as a major Barrier to communicating with his children. ER, his mother and speechlanguage pathologists considered the ‘Talking Group’ as a Facilitator (e355 + 2) but he missed these opportunities if not
invited to come. ER and his mother reported that they felt the best way to maintain ER’s speech and language skills was to
‘keep talking’ (ER), and ‘if you don’t use it you’ll lose it. . .well lose it faster anyway, because he will probably lose it
eventually’ (mother). ER, speech-language pathologists and nursing staff also considered his mother as a significant
facilitator as both a support (e310 + 3) and an advocate for him (e410 + 4) and her family over the years. ER’s mother and staff
identified his dog as a facilitator for conversational stimulus and enjoyment (d350 + 2) and this topic was utilized in art
therapy and the ‘Talking Group’.
ER and his mother strongly emphasized personal factors in the interview. ER’s mother reported that it was important
people knew his longstanding communicative style was as ‘not a man of many words’ but he ‘enjoyed company and always
got along with people’. They both reported that their long experience with HD made them feel somewhat prepared for coping
with his future decline, which they saw as inevitable (ER: ‘I know what will happen, I’ve seen it all over the years’, and his
mother ‘We know what we’re in for, it is going to get worse. You’re never fully prepared but from all our experience we are
and we’ll manage as we go’). They reported that this experience meant they understood the proactive nature of what they
were requesting (mother: ‘Because we know what will happen is why we need to do it now, before his speech gets worse’).
Additionally, ER had previously helped to construct his sibling’s communication book and had positive feelings towards
communication books. ER stated he was not afraid of dying, but instead was afraid he would not be able to say goodbye to his
children and tell them he loved them.
3.3. Communication intervention goals
Once the RPS-Form was completed and discussed by both of the speech-language pathologists, the findings were
discussed with ER and his mother. From this discussion ER and his mother decided on three main goals and interventions
that would assist with achieving their goals. The goals focused on their priority areas of d3 communication and d7
interactions/relationships:
Goal 1: Despite adequate communication skills, ER is currently unable to communicate with his children (e310.4; e410.4).
ER, and his mother will collaborate with speech-language pathologists to produce a legacy life story book and DVD
(environmental product, e125) that will maintain his capacity to: (i) tell his children about himself and his love for them
(d350) and (ii) fulfill the role of father (d7600) when his communication declines or he passes away.
Goal 2: ER and his mother wish to maintain their relationship with phone conversations that are less effortful (d6701/
d330). A mobile phone for ER (environmental product/technology, e1250) would enable conversations in quieter areas
(e2501) to reduce background noise and maximize ER’s intelligibility (d330).
Goal 3: ER and his mother believe that he should continue to maintain and practise his conversations with other residents
in his home (d9205). Staff will continue to encourage and invite ER to the weekly ‘Talking Group’ (e355). The strategy of
personal invitation from nursing staff/student speech-language pathologists (e355, e340) will help ER to overcome
initiation and apathy difficulties to participate in this group.
4. Discussion
This report describes the application of the ICF to communication assessment and goal setting for a man with HD and his
mother. Analysis of data from formal assessments and qualitative interviews revealed that ER had mild-moderate
communication impairments in body structures and functions and he, his mother and staff were concerned for any future
communication deterioration. The most significant barrier to participation in important life areas for ER was not his
communicative impairments, but environmental factors such as family attitude and reduced support that arose from his
family breakdown. The following section will divide discussion of ER’s case into three areas; the goals established by ER and
his mother, how the ICF framework contributed to the assessment and goal setting process and important issues for clinical
application of the ICF.
4.1. Goals established collaboratively with ER and his mother
Three goals were developed focused on supporting participation in communication activities with ER’s children, his
mother and fellow residents. The goals provide further support for recent findings that family wish to see increased social
communication participation for their loved ones with HD (Hartelius, Jonsson, Rickeberg, & Laakso, 2010).
ER’s most important goal was to tell his children about himself, his love for them and to be involved in the role of father,
despite his estrangement from them. Creation of a life story book and DVD was chosen by ER and speech-language
pathologists as the most effective way to achieve this goal. Life story work may take the form of a book or recorded narrative
that documents a person’s life history (Shadden, Hagstrom, & Koski, 2008). This approach has been used in a variety of
contexts for different purposes including a reminiscence tool for people with dementia (Moos & Bjorn, 2006), preservation or
development of post stroke identity in aphasia (Pound, Parr, Lindsay, & Woolf, 2000) and as a legacy item for people with
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terminal illness (Rosenbaum et al., 2006). People with terminal illness and their families who engaged in life story work have
reported increased social interaction and reduced caregiver stress compared to families who received supportive telephone
conversations from researchers (Allen, Hilgeman, Ege, Shuster, & Burgio, 2008). Despite being years away from a traditional
palliative stage, the essential component of this goal for ER was production of a legacy item that he himself would make using
his relatively intact speech abilities. ER and his mother acknowledged the uncertainty that his children would eventually see
the book and DVD due to their estrangement. However, both ER and his mother reported that constructing the items would
bring them significant peace of mind in telling his children he loved them and fulfilling the role of father. The speechlanguage pathologists had been using a life story intervention program with many HD clients. However, this was the first
time that the requested focus of a client’s book was specifically as a legacy item. It is also the first study to raise the issue of
life story books as legacy items for people with communication difficulties in HD. Life story work may be an important aspect
of a communication intervention plan for a person with HD. However, unlike other more rapidly progressing terminal
conditions, life story work in HD needs to be considered well before a palliative stage is reached and before communication
declines if the person with HD is to construct his own life story and message to loved ones.
The family’s second goal focused on reducing conversational effort on the phone due to background noise. Noisy
environments are significant barriers to participation for people with communication difficulties (Howe, 2008). It was
unlikely that we could change the actual physical environment of the nurses’ station to reduce noise. However, modification
of the communication technology with a cordless phone was considered feasible. Fortuitously, a short time after ER’s
assessment, the residential care facility upgraded fixed line phones to cordless ward phones. This provided more
communication-friendly locations not only for ER, but also for other residents with a variety of communication difficulties
(e.g., hearing loss). System level environmental changes may be effective ways to minimize communication barriers for a
larger proportion of the population in a particular environment (Howe, 2008).
ER’s third goal was to continue to attend the weekly ‘Talking Group’ as part of his total interdisciplinary care plan
program. As many of the residents engaged in daily TV viewing and newspaper reading, the group provides a supported
opportunity for residents to discuss events of the week and raise awareness of topics of interest within the group that could
be discussed further outside the group. Both ER and his mother emphasized the importance of the group as a positive,
enjoyable experience socializing with fellow residents (Berarducci et al., 2003). This also supports research that found that
families of people with HD view social communication-opportunities for people with HD as critically important to
participation (Hartelius et al., 2010). ER’s case demonstrates this may be even more crucial for residents with reduced
contact with family and friends.
ER and his mother also wanted ER to ‘keep talking’ and considered that the ‘Talking Group’ would assist with maintaining
his communication skills. His mother’s use of the phrase ‘use it or lose it’ is supported by a key principle of neuroplasticity
(Kleim & Jones, 2008) where neuronal networks that are not engaged in a specific task over time, may degrade. Encouraging
ER to continue to communicate in the group may support some maintenance of his communication skills over time. Studies
with HD rodent models (R6/2 mouse) have suggested that even minimal environmental enrichment may slow disease
progression (Hockly et al., 2002). The notion of neuroplasticity and environmental enrichment associated with
communication over time in HD deserves further exploration.
4.2. How the ICF framework contributed to the assessment and goal setting process
Assessment and goal setting in HD can be challenging. Although few communication assessments are designed or
validated for people with HD, the ICF enabled more targeted, holistic assessment with available tests and qualitative
interviews. Utilizing the ICF ensured we gave consideration to each ICF domain regardless of the specific assessments
used, which may change depending on client level of functioning or clinician preference. The interviews
provided unique information about activity and participation areas important to ER and support the claim
(Klasner & Yorkston, 2001) that qualitative interviewing is a valuable method for determining participation-based
intervention goals in HD.
Another important aspect of our evaluation was that the ICF encouraged more positive emphasis on functioning as well as
disability and communication facilitators (Byrne & Orange, 2005). ER presented with communication impairments that were
consistent with the HD literature. However, the modified CETI and structured interview explored his strengths. These
revealed retained communication skills and insight that was important to acknowledge and document. Although insight can
often be impaired in HD (Deckel & Morrison, 1996; Hoth et al., 2007), ER’s relatively intact insight was a crucial feature in
engaging with clinicians and developing highly anticipatory treatment goals. The interviews also focused on ‘What can
help?’ (through Facilitators or a reduction in Barriers), which encouraged ER and his mother to actively contribute to his
communication goals and treatment options.
Most importantly, this case highlights the importance of specific examination of environmental and personal
contributors to communication-based limitations and restrictions. Explicit consideration of barriers (and facilitators) in ER’s
environment revealed that the strongest barriers to his participation was not his communication impairment but instead
attitudes and levels of support from some of his family. Strained family relationships may be particularly present in some HD
families (Keenan et al., 2007; Korer & Fitzsimmons, 1985) and may result in decreased communicative opportunities for the
person with HD (Hartelius, Jonsson, Rickeberg, & Laakso, 2009). Although our previous assessment approach may have
revealed this issue for ER, the ICF framework increased the weighting of environmental and personal factors as potential
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contributors to ER’s disability and functioning. Additionally, the ICF coding more explicitly documented not only the
presence of these factors but their relative degree of impact on activities and participation. This ensured the balance of
impacts on ER’s communication was represented across impairment and contextual domains. However, the communicative
impairment was relevant. ER, his mother and staff considered it a crucial future communication challenge as the disease
progressed and his mild-moderate communication impairment was viewed as one of ER’s current strengths.
Additionally, ER and his mother’s positive personal coping styles and familiarity with the disease were acknowledged
with this ICF based approach and their expertise was more formally represented and incorporated into the decision-making
for treatment planning. The addition of the two time periods, ‘Current’ and ‘Future’ on the modified RPS-Form (Steiner et al.,
2002) also allowed us to represent ER and his mother’s views on how they might engage with future treatment planning, or if
they had declined to talk about the future, it enabled staff to consider what anticipatory planning could be enacted. While
some evidence suggests that a carer’s coping style in HD often involves avoidance which makes future planning difficult
(Lowit & van Teijlingen, 2005), ER’s case demonstrates this should not be a universal assumption. In relation to the ICF
personal factors, ER’s case reinforces that while personal factors are mostly considered separate to the person’s disease/
condition (Threats, 2007a), in HD and other hereditary diseases, the disease may still impact an individual’s personality. For
ER, he described the disease as being ever present in his upbringing. Without him even demonstrating symptoms, HD
impacted strongly on his personal coping style and attitudes due to the experience of living with his father and two siblings
who had HD. Although not yet formally coded in the ICF, exploring and documenting personal factors allows for a greater
understanding of the whole person.
Overall, the integration of the ICF framework and coding into our assessment and goal setting process enabled a more
systematic and holistic examination of important areas. These were activities and participation for ER and his mother, the
degree to which body function impairments and environmental factors contributed to limitations and restrictions, the
personal expertise possessed by ER and his mother and the strategies that were key to developing his goals. An assessment
that focused at the impairment and even activity level alone may not have resulted in the goals established by this ICF-based
process.
4.3. Important issues for clinical applications of the ICF
Through this case study, we also identified some important issues in the implementation of an ICF-based approach to
assessment and goal setting. The first issue related to the large scope and complexity of the ICF. Although we gradually
increased our familiarity with the ICF, at first we found it to be overwhelming. Our experience reflects a common criticism
from rehabilitation medicine (Stucki, Ewert, & Cieza, 2003) and speech-language pathology (Threats & Worrall, 2004), that
the ICF is unwieldy in its original form. However, the strength of the ICF is the systematic consideration of a wide range of
domains and this is particularly relevant for complex diseases such as HD. To assist clinical implementation, smaller core sets
that limit classifications to specific conditions or contexts are in development for chronic conditions such as stroke (Cieza
et al., 2004) and neurological conditions in post acute settings (Stier-Jarmer et al., 2005). While some neurodegenerative
disease sets are in progress such as Multiple Sclerosis, none have been developed for HD.
The use of the modified RPS-Form (Steiner et al., 2002) was a resource that assisted with conceptualization of the major
ICF components from multiple viewpoints. In the present study we used the form primarily as a systematic representation of
multiple viewpoints of ER’s functioning and contextual factors. It enabled us to draw together our assessment findings in one
document for the purposes of clinical problem solving in a way we had not done previously. Due to the density of
information, we did not represent proposed causal mediators on the form with arrows as proposed by Steiner et al. (2002).
Additionally, the ICF itself does not assist with prioritization of potential areas for intervention. Instead, we asked ER and his
mother to confirm their key priorities and then discussed the range of facilitators and barriers identified by ER, his mother
and staff. We then documented our conclusions separately into the goals identified above. Potentially, we could have also
represented these specific findings on the form, or on three separate forms for each goal. Clinicians may find the form a
helpful resource to mediate various stages of the assessment and goal-setting process in conjunction with clients and staff.
The addition of the two time frames of ‘current’ and ‘future’ may be beneficial for speech-language pathologists working with
people with degenerative disease and also people with chronic conditions such as dysarthria or aphasia, where future
aspirations and concerns can be documented.
Our second issue was providing efficient, user-friendly access to the ICF framework and coding to establish collaborative
treatment goals for ER and his mother. This is an essential ethical underpinning of the ICF (Threats, 2006) and mandated in
Annex 6 of the ICF. We discussed contents of the RPS-Form with both ER and his mother and simplified ICF concepts and
language to maximize access their access to the ICF. While both ER and his mother engaged in discussion regarding the
general findings and interviews, they declined to participate in detailed discussion of the framework and coding. A number of
other factors may have contributed to their level of engagement and access to the ICF. These include the inherent complexity
of the ICF, our own developing knowledge of its language, ER’s language impairments and his mother’s geographical distance
to the unit. Further consolidation of our ICF knowledge will assist with development of user-friendly client resources to
support discussion of the ICF framework and coding in response to varying levels of engagement and interest.
The third issue was the complexity of the ICF coding system. Initially, the orientation to the codes and the implementation
of coding was time-consuming. However, our coding became more efficient as our familiarity with the system improved. We
achieved excellent levels of inter-rater reliability within chapters to the fourth level of coding between the independent
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raters, although there were some coding discrepancies identified. For example, two codes exist for written tasks; ‘Writing’
(d170) and ‘Expression of Written language’ (b16711) and each rater attributed ER’s difficulty with writing to a different
code. Additionally, ‘apathy’ was considered by one rater to be related to the disease (b1644.1), while the second rater
attributed this to personal factors (not coded specifically). Organic mood disorders and personality-based coping styles can
be difficult to both distinguish and therefore classify on the ICF (Threats, 2007a). Apathy and depression may be symptoms of
HD, as well as reactive states that arise from coping with the disease (Deckel & Morrison, 1996). For ER, this distinction was
less difficult in relation to denial and depression as he did not present with these symptoms at the time. However, as the
second rater was not familiar with ER’s case it may have been difficult to determine whether ‘apathy’ should be coded as part
of the disease symptoms or in personal factors. It was for this reason that the second independent rater did not code the
qualifiers and instead this was done by consensus with the two speech-language pathologists that were familiar with ER. ICF
research has demonstrated that ICF classifications may require further revisions (Jette, Tao, & Haley, 2007; Whiteneck &
Dijkers, 2009). Additionally, codes and qualifiers require further trials in clinical settings to establish its feasibility and
reliability when applied to a whole client caseload (Rauch, Cieza, & Stucki, 2008).
Finally, while the ICF concepts of performance and capacity and ‘with and without assistance’ were implicitly explored in
interviews with ER and his mother, we found their specific implementation and classification to be overlapping and
confusing. There was a difficulty determining what would constitute a ‘standard’ level or environment for communicative
functioning (capacity) both with and without assistance, compared to that which an individual does in their current
environment (performance qualifier) both with and without assistance. In this circumstance, coding to this level was not
clinically feasible. Instead, we identified that for socialising, ER required others to provide the opportunity much of the time
(d9205.3). We then identified that a clinician inviting ER individually to a communication group was an environmental
facilitator for participation. Our difficulty with the classification of capacity and performance reflects the view that these may
be clinically difficult concepts (Threats & Worrall, 2004) and further research and application is required to assist clinicians
to consider these categories. The current development of the procedural manual and guide for the standardized application
of the ICF: a manual for health professionals, when published, may assist clinicians to resolve some of these challenges
associated with the clinical implementation of the ICF (Threats, 2008).
The findings of this case report cannot be generalized to all individuals with HD. However, the approach is encouraging
and worthy of further clinical and research applications for people living with HD in residential and community settings or
people with other neurodegenerative diseases. While the speech-language pathologists in this study participated in
interdisciplinary case management with ER and his mother, this trial application of the ICF focused specifically on his
communication-related needs. Future research should investigate how interdisciplinary teams can utilize the ICF for
assessment and goal setting in HD.
5. Conclusion
This report illustrates the potential systematic use of the ICF to conceptualize communicative functioning and disability
in HD and the importance of personal and environmental contributors to communication-based activity limitations and
participation restrictions. Another unique finding was the potential use of life story books and DVDs as legacy items for
people with HD. The ICF is a valuable tool for speech-language pathologists working with people with HD and their families.
This real world case is a preliminary contribution to respond to calls for the integration of the ICF into clinical practice (Ma
et al., 2008) and involvement of people with HD in their assessment and goal setting (Hartelius et al., 2009).
Acknowledgements
ER and his mother as generous collaborators and drivers to disseminate this work to professionals and families. The local
Human Ethics Committee helped us to develop individualized consent forms for ER and his mother for informed consent to
publish the work. We also would like to acknowledge others who provided valuable discussion or comments on this paper:
Robyn O’Halloran, Karla McGregor, Audrey Holland, Natalie Munro, Elise Baker, Tricia McCabe, Alison Ferguson, Ros Madden
and Elias Mpofu.
Appendix A. Outline of the ICF alphanumeric coding system
The ICF uses an alphanumeric coding system in which letters b, s, d and e denote body functions, body structures, activities and
participation and environmental factors, respectively. Personal factors are not currently coded in the present version of the ICF.
The letters are followed by a numeric code that starts with a chapter number (one digit), followed by a second level (two digit),
and third and forth levels (one digit for each) allowing for increasing specification. Codes are neutral and require qualifiers to
provide meaning. Generic qualifiers represent the extent or severity of the problem for impairment of structure or function, and
activity limitations/participation restrictions for the person’s current functioning. This is represented with a decimal point after
the category code with a score from 0 = no problem, 1 = mild problem, 2 = moderate problem, 3 = severe problem, 4 = complete
problem. Environmental factors can be coded as barriers or facilitators using the same 0–4 scale as above. Facilitators are noted
with a ‘+’ sign and barriers are noted simply after a decimal point ‘.’ (Table 2).
b
s
d
e
Body functions
Body structures
Activities and
participation
Environmental
factors
Mild difficulty
understanding
spoken language
Moderate damage
to parietal
lobe of brain
Severe breakdown
of child–parent
relationship
Absence of support
of friends
d7 interpersonal
interactions and
relationships
e3 support and
relationships
s1 structure of the
nervous system
b1 mental functions
Level 1
(chapter level)
e320 friends
d7601 child-parent
relationships
d760 family
relationships
s11002 parietal lobe
b16700 reception
of spoken language
b1670 reception
of language
s1100 structure
of cortical lobes
Level 4
Level 3
b167 mental
functions of
language
s110 structure
of brain
Level 2
4
3
2
1
Severity
qualifier (0–4)
e320.4
d7601.43
s11002.2
b16700.1
Final code
Note: For activity and participation domains, the ICF provides a single domain list that may be applied differently by the user. In this study we used the same domains for both activity limitation and participation
restrictions rather than attempting to designate some domains as activities and others as participation (Australian Institute of Health and Welfare, 2003).
Letter
ICF
component
Example
Table 2
Outline of the ICF alphanumeric coding system with examples.
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Appendix B. Continuing education
1. In Huntington Disease physical, cognitive and psychiatric symptoms all may impact on the communication impairment.
a. True
b. False
2. In the current case, background noise was seen by ER’s mother as a greater barrier to understanding his speech on the
phone, than ER’s own dysarthria.
a. True
b. False
3. In this study, the two independent raters achieved less than 80% agreement on the categorization of the ICF domains.
a. True
b. False
4. For ER, communication impairment was determined as the most important contributing factor to his participation
restrictions.
a. True
b. False
5. The neuroplasticity principle of ‘use it or lose it’ was advanced by ER’s mother as a strategy to minimise communication
decline.
a. True
b. False
References
Allen, R. S., Hilgeman, M. M., Ege, M. A., Shuster, J. L., & Burgio, L. D. (2008). Legacy activities as interventions approaching the end of life. Journal of Palliative
Medicine, 11(7), 1029–1038.
Australian Institute of Health and Welfare. (2003). ICF Australian user guide, Version 1.0. Canberra: AIHW.
Bamford, K. A., Caine, E. D., Kido, D. K., Cox, C., & Shoulson, I. (1995). A prospective evaluation of cognitive decline in early Huntington’s disease—functional and
radiographic correlates. Neurology, 45(10), 1867–1873.
Berarducci, M., Power, E., Anderson, A., & Togher, L. (2003). Maximising participation in Huntington Disease through group language therapy. ACQuiring Knowledge
in Speech, Language and Hearing, 5(1), 3–6.
Brush, J. A., Threats, T. T., & Calkins, M. P. (2003). Influences on perceived function of a nursing home resident. Journal of Communication Disorders, 36(5), 379–393.
Byrne, K., & Orange, J. B. (2005). Conceptualizing communication enhancement in dementia for family caregivers using the WHO-ICF framework. Advances in
Speech-Language Pathology, 7(4), 187–202.
Chenery, H. J., Copland, D. A., & Murdoch, B. E. (2002). Complex language functions and subcortical mechanisms: Evidence from Huntington’s Disease and patients
with non-thalamic subcortical lesions. International Journal of Language & Communication Disorders, 37(4), 459–474.
Cieza, A., Ewert, T., Ustün, T., Chatterji, S., Kostanjsek, N., & Stucki, G. (2004). Development of ICF Core Sets for patients with chronic conditions. Journal of
Rehabilitation Medicine, 36, 9–11.
Creswell, J. W. (2003). Research design: Qualitative, quantitative, and mixed methods approaches (2nd ed.). Thousand Oaks, CA: Sage Publications.
Darley, F. L., Aronson, A. E., & Brown, J. R. (1969). Clusters of deviant speech dimensions in the dysarthrias. Journal of Speech and Hearing Research, 12(3), 462–496.
Deckel, A. W., & Morrison, D. (1996). Evidence of a neurologically based ‘‘denial of illness’’ in patients with Huntington’s Disease. Archives of Clinical
Neuropsychology, 11(4), 295–302.
Edwards, D. J. A., Dattilio, F. M., & Bromley, D. B. (2004). Developing evidence-based practice: The role of case-based research. Professional Psychology-Research &
Practice, 35(6), 589–597.
Enderby, P. M. (1983). Frenchay dysarthria assessment. Austin, TX: Pro-Ed.
Folstein, S. E. (1989). Huntington’s Disease: A disorder of families. Baltimore: Johns Hopkins University Press.
Hartelius, L., Jonsson, M., Rickeberg, A., & Laakso, K. (2009). Communication and Huntington’s disease: Qualitative interviews and focus groups with persons with
Huntington’s disease, family members, and carers. International Journal of Language & Communication Disorders 99999(1)doi:10.1080/13682820903105145.
Hartelius, L., Jonsson, M., Rickeberg, A., & Laakso, K. (2010). Communication and Huntington’s Disease: Qualitative interviews and focus groups with persons with
Huntington’s Disease, family members, and carers. International Journal of Language & Communication Disorders, 45(3), 381–393.
Hockly, E., Cordery, P. M., Woodman, B., Mahal, A., Van Dellen, A., Blakemore, C., et al. (2002). Environmental enrichment slows disease progression in R6/2
Huntington’s disease mice. Annals of Neurology, 51(2), 235–242.
Hoth, K. F., Paulsen, J. S., Moser, D. J., Tranel, D., Clark, L. A., & Bechara, A. (2007). Patients with Huntington’s Disease have impaired awareness of cognitive,
emotional, and functional abilities. Journal of Clinical and Experimental Neuropsychology, 29(4), 365–376.
Howe, T. J. (2008). The ICF Contextual Factors related to speech-language pathology. International Journal of Speech-Language Pathology, 10(1), 27–37.
Hunt, V. P., & Walker, F. O. (1989). Dysphagia in Huntington’s Disease. Journal of Neuroscience Nursing, 21(2), 92–95.
Huntington Study Group. (1996). Unified Huntington’s Disease rating scale: Reliability and consistency. Movement Disorders, 11(2), 136–142.
Jette, A. M., Tao, W., & Haley, S. M. (2007). Blending activity and participation sub-domains of the ICF 1. Disability and Rehabilitation, 29(22), 1741–1750.
Keenan, K. F., Miedzybrodzka, Z., van Teijlingen, E., McKee, L., & Simpson, S. A. (2007). Young people’s experiences of growing up in a family affected by
Huntington’s Disease. Clinical Genetics, 71(2), 120–129.
Kertesz, A. (1982). Western aphasia battery. New York: Grune and Stratton.
Klasner, E. R., & Yorkston, K. M. (2001). Linguistic and cognitive supplementation strategies as augmentative and alternative communication techniques in
Huntington’s Disease: Case report. Augmentative and Alternative Communication, 17(3), 154–160.
Klasner, E. R., & Yorkston, K. M. (2005). Speech intelligibility in ALS and HD dysarthria: The everyday listener’s perspective. Journal of Medical Speech-Language
Pathology, 13(2), 127–139.
Kleim, J. A., & Jones, T. A. (2008). Principles of experience-dependent neural plasticity: Implications for rehabilitation after brain damage. Journal of Speech,
Language, and Hearing Research, 51(Suppl.), S225–S239.
Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s Chorea on family life. British Journal of Social Work, 15(6), 581–597.
Lomas, J., Pickard, L., Bester, S., Elbard, H., Finlayson, A., & Zoghaib, C. (1989). The communicative effectiveness index: Development and psychometric evaluation
of a functional communication measure for adult aphasia. Journal of Speech and Hearing Disorders, 54(1), 113–124.
Lomax, C. L., Brown, R. G., & Howard, R. J. (2004). Measuring disability in patients with neurodegenerative disease using the ‘Yesterday Interview’. International
Journal of Geriatric Psychiatry, 19(11), 1058–1064.
Author's personal copy
E. Power et al. / Journal of Communication Disorders 44 (2011) 261–275
275
Lowit, A., & van Teijlingen, E. R. (2005). Avoidance as a strategy of (not) coping: Qualitative interviews with carers of Huntington’s Disease patients. BMC Family
Practice, 14(6), 38.
Ma, E. P. M., Threats, T. T., & Worrall, L. E. (2008). An introduction to the International Classification of Functioning, Disability and Health (ICF) for speech-language
pathology: Its past, present and future. International Journal of Speech-Language Pathology, 10(1), 2–8.
Ma, E. P. M., Worrall, L., & Threats, T. T. (2007). The international classification of functioning, disability and health (ICF) in clinical practice. Seminars in Speech and
Language, 28(4), 241–243.
Moos, I., & Bjorn, A. (2006). Use of the life story in the institutional care of people with dementia: A review of intervention studies. Ageing & Society, 26, 431–454.
Muo, R., Schindler, A., Vernero, I., Schindler, O., Ferrario, E., & Frisoni, G. (2005). Alzheimer’s disease-associated disability: An ICF approach. Disability and
Rehabilitation, 27, 1405–1413.
Murray, L. L. (2000). Spoken language production in Huntington’s and Parkinson’s Diseases. Journal of Speech Language and Hearing Research, 43(6), 1350–1366.
Murray, L. L., & Stout, J. C. (1999). Discourse comprehension in Huntington’s and Parkinson’s Diseases. American Journal of Speech-Language Pathology, 8(2), 137–
148.
Nance, M. A., & Sanders, G. (1996). Characteristics of individuals with Huntington Disease in long-term care. Journal of Movement Disorders, 11, 542–548.
Paulsen, J. S., Ready, R. E., Hamilton, J. M., Mega, M. S., & Cummings, J. L. (2001). Neuropsychiatric aspects of Huntington’s Disease. Journal of Neurology
Neurosurgery and Psychiatry, 71(3), 310–314.
Podoll, K., Caspary, P., Lange, H. W., & Noth, J. (1988). Language functions in Huntington’s Disease. Brain, 111, 1475–1503.
Pound, C., Parr, S., Lindsay, J., & Woolf, C. (2000). Beyond aphasia: Therapies for living with communication disability. Speechmark: Bicester.
Prutting, C. A., & Kirschner, D. M. (1987). A clinical appraisal of the pragmatic aspects of language. Journal of Speech and Hearing Disorders, 52, 105–119.
Rauch, A., Cieza, A., & Stucki, G. (2008). How to apply the International Classification of Functioning Disability and Health (ICF) for rehabilitation management in
clinical practice. European Journal of Physical and Rehabilitation Medicine, 44, 329–342.
Rosenbaum, E., Garlan, R. W., Hirschberger, N., Siegel, A. L., Butler, L. D., & Spiegel, D. (2006). The life tape project: Increasing family social support and symbolic
immortality with a brief existential intervention for cancer patients and their families. Omega-Journal of Death and Dying, 53(4), 321–339.
Shadden, B. B., Hagstrom, F., & Koski, P. R. (2008). Neurogenic communication disorders: Life stories and the narrative self. San Diego: Plural Pub.
Speedie, L. J., Brake, N., Folstein, S. E., Bowers, D., & Heilman, K. M. (1990). Comprehension of prosody in Huntingtons Disease. Journal of Neurology Neurosurgery and
Psychiatry, 53(7), 607–610.
Steiner, W. A., Ryser, L., Huber, E., Uebelhart, D., Aeschlimann, A., & Stucki, G. (2002). Use of the ICF Model as a clinical problem-solving tool in physical therapy and
rehabilitation medicine. Physical Therapy, 82(11), 1098–1107.
Stier-Jarmer, M., Grill, E., Ewert, T., Bartholomeyczik, S., Finger, M., Mokrusch, T., et al. (2005). ICF Core Set for patients with neurological conditions in early postacute rehabilitation facilities. Disability and Rehabilitation, 27, 389–395.
Stucki, G., Ewert, T., & Cieza, A. (2003). Value and application of the ICF in rehabilitation medicine. Disability and Rehabilitation, 25, 628–634.
Threats, T. T. (2006). Towards an international framework for communication disorders: Use of the ICF. Journal of Communication Disorders, 39(4), 251–265.
Threats, T. T. (2007a). Access for persons with neurogenic communication disorders: Influences of Personal and Environmental Factors of the ICF. Aphasiology,
21(1), 67–80.
Threats, T. T. (2007b). Use of the ICF in dysphagia management. Seminars in Speech and Language, 28(4), 323–333.
Threats, T. T. (2008). Use of the ICF for clinical practice in speech-language pathology. International Journal of Speech-Language Pathology, 10(1), 50–60.
Threats, T. T., & Worrall, L. (2004). Classifying communication disability using the ICF. Advances in Speech-Language Pathology, 6(1), 53–62.
Wallesch, C. W., & Fehrenbach, R. A. (1988). On the neurolinguistic nature of abnormalities in Huntington’s disease. Journal of Neurology, Neurosurgery, and
Psychiatry, 51, 367–373.
Whiteneck, G., & Dijkers, M. P. (2009). Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors.
Archives of Physical Medicine and Rehabilitation, 90(11, Suppl. 1), S22–S35.
World Health Organization. (1980). International Classification of Impairments, Disabilities and Handicaps (ICIDH). Geneva: World Health Organization.
World Health Organization. (2001). ICF: International classification of functioning, disability and health. Geneva: World Health Organization.
Yorkston, K. M., & Beukelman, D. R. (2007). AAC Intervention for progressive conditions: Multiple sclerosis, Parkinson’s Disease, and Huntington’s Disease augmentative
communication strategies for adults with acute or chronic medical conditions. Baltimore: Paul H. Brookes Publishing Company. pp. 317–346.
Young, A., Shoulson, I., Penney, J., Starosta-Rubinstein, S., Gomez, F., Travers, H., et al. (1986). Huntington’s disease in Venezuela: Neurologic features and
functional decline. Neurology, 36(2), 244–249.