Journal of Intellectual & Developmental Disability,

Vol. 29, No. 3, pp. 211–225, September 2004

Meeting in the middle: improving

communication in primary health care
consultations with people with an intellectual
disability

JENNY ZIVIANI1

School of Health and Rehabilitation Sciences, University of

Queensland, Australia

NICHOLAS LENNOX

, Queensland Centre for Intellectual and Developmental

Disability, University of Queensland, Australia

HEATHER ALLISON

, School of Health and Rehabilitation Sciences, University of

Queensland, Australia

MICHAEL LYONS

, Discipline of Occupational Therapy, University of Newcastle,

Australia

CHRIS DEL MAR

and Centre for General Practice, University of Queensland,

Australia

The increased presence and participation in Australian society of people with an

intellectual disability provides challenges for the provision of primary health
care. General practitioners (GPs) identify themselves as ill equipped to provide
1
Address for correspondence: Jenny Ziviani, Associate Professor, School of Health and Rehabilitation
Sciences, University of Queensland, St Lucia 4072, Brisbane, Australia. E-mail: j.ziviani@uq.edu.au

ISSN 1366-8250 print/ISSN 1469-9532 online/04/030211-15

# 2004 Australasian Society for the Study of Intellectual Disability Inc.
DOI: 10.1080/13668250412331285163
212 Ziviani, Lennox, Allison, Lyons & Del Mar

for this heterogeneous population. A major obstacle to the provision of

appropriate health care is seen as inadequate communication between the GP
and the person with an intellectual disability, who may or may not be
accompanied by a carer or advocate. This qualitative study in which five GPs,
three people with intellectual disability, seven carers and two advocates (parent
and friend) were interviewed was conducted in Brisbane, Australia. The aim
was to better understand the factors that have an impact upon the success of
communication in a medical consultation. Findings suggested that GPs were
concerned with the aspects of communication difficulties which influenced their
ability to adequately diagnose, manage and inform patients. Implications for
practice management were also identified. People with intellectual disability
reported frustration when they felt that they could not communicate adequately
with the GP and annoyance when they were not included in the communication
exchange. Carers were strong advocates for the person with intellectual
disability, but indicated insufficient skill and knowledge to provide the level of
assistance required in the consultation. The outcome was a model of cooperation
that outlined the responsibilities of all players in the medical encounter, prior to,
during and after the event.

Introduction
Adults with an intellectual disability are a heterogeneous group representing 1.86% of
the Australian population (Wen, 1997). In recent decades, emergence of the view
of intellectual disability as a social rather than a medical construct has been accompanied
by social policies advocating that people with an intellectual disability be supported to
live and participate in the community. The balance of responsibility for primary
health care delivery has thus shifted away from medical staff attached to institutions or
residential disability services and towards general practitioners (GPs). GPs,
however, have had limited experience or training regarding the health needs of
people with intellectual disability (Kerr, Dunstan, & Thapar, 1996; Lennox, Diggens,
& Ugoni, 1997), as have many other specialists and health practitioners with whom a
GP may consult (Lakhani & Bates, 1999; Lennox & Chaplin, 1996; Surgeon General,
2002).
People with an intellectual disability have very diverse health needs. Some have
chronic and complex health problems requiring constant monitoring, while others need
only the usual short term care or preventive measures such as immunisations (Lennox &
Kerr, 1997). As a group, however, they generally have poor health status relative to the
general population (Lennox, Beange, & Edwards, 2000), due to more complex and
difficult diagnosis, care and monitoring of their health conditions. Research has
indicated that deficits exist in the medical management of a range of issues affecting their
health including: visual and hearing impairments, medication, pain, dental hygiene,
epilepsy, constipation, malnutrition, obesity, health screening, mental disorders, gastro-
oesophageal reflux disease, immunisations, osteoporosis, thyroid disease, undescended
testes and hypogonadism (Beange, McElduff, & Baker, 1995; Lennox & Diggens, 1997;
Lennox, Green, Diggens, & Ugoni, 2001). Since many of these conditions are
preventable it appears that health promotion efforts are not reaching people with an
 Meeting in the middle 213

intellectual disability, who may need more overt assistance from GPs on such issues as
the health benefits of exercise and the importance of regular medical checkups (Lennox,
2002; Pearson, Davis, Ruoff, & Dyer, 1998; Surgeon General, 2002; Webb & Rogers,
1999).
People with an intellectual disability vary greatly in their cognitive awareness and
functioning in both their speech and communication capacities and in literacy skills
(Wen, 1997). Even the most able of people may have difficulty comprehending the
complexities of a consultation with a GP. Regardless of the GP’s skills it is difficult for
many people with an intellectual disability to effectively communicate their health needs.
They may have difficulty in conveying symptoms and understanding what is happening
to them during medical examinations, tests and procedures. This is particularly so for
people who are unable to speak or for those who use alternative or augmentative
communication systems. People with an intellectual disability may also find it difficult to
understand what is being said throughout the consultation, for example, why they need
to take tablets, change their diet, or keep a wound clean. When people have difficulty
articulating their own health needs, proper medical assessment is difficult. This in turn
makes it more difficult for GPs to confidently diagnose and ascertain whether the person
is able to give informed consent for medical procedures. It also makes it difficult for GPs
to determine the likelihood of accurate compliance with treatment. For GPs, additional
skill, sensitivity and time are therefore required to initiate and maintain effective health
communication.
The issue of effective primary health care communication is not unique to this group
and factors impacting on patient satisfaction have been well researched (Williams,
Weinman, & Dale, 1998). What is unique, and therefore requiring attention, is the
complexity of the communication process for the individual with an intellectual
disability, their carer or advocate, and the GP. An advocate, who may be a paid support
worker, a family member or friend, can play an essential role in determining the efficacy
of health monitoring and outcomes by mediating between the patient and the GP. A key
element of this role is the facilitation of effective communication. In this context, the role
of the third person in the patient-doctor relationship has the potential to improve health
outcomes for people with an intellectual disability providing the person has adequate
health knowledge to assist diagnosis and to properly implement and monitor care.
The importance of adequate GP care for people with an intellectual disability can be
seen to rely heavily on effective communication. Health communication is a function of
the relationship between the person with the disability and the GP but also extends to
interaction between the GP and any advocate who may accompany the person. Key
aspects of primary health care communication have been identified in the literature
(Williams, Weinman, & Dale, 1998) and include the nature and type of information
provided by the GP, communication style and affect. Ineffective GP-patient commu-
nication is a major obstacle to the provision of adequate primary health care for people
with an intellectual disability (Lennox & Kerr, 1997). The current study was initiated to
investigate the nature of health communication between GPs and patients who have an
intellectual disability including those occasions when an advocate is in attendance. The
main research aims were to: (i) examine the nature of health communication; (ii) identify
factors perceived to be critical to effective health communications; and (iii) determine
obstacles to effective communication.
214 Ziviani, Lennox, Allison, Lyons & Del Mar

Method
Research design
Qualitative research methods seek to understand the meaning ascribed by individuals to
their experiences. Insight into personal meaning aids the researcher/practitioner in
interpreting the behaviours (including health-related behaviours) in which people engage
(Patton, 2002). Using techniques such as interviewing and observation, qualitative
researchers typically focus in-depth on a small number of participants (commonly
referred to as ‘‘informants’’), while recognising the shortcomings of generalising such
insights to other individuals and contexts beyond the study itself (Patton, 2002). These
methods are well-suited for areas of enquiry where there is very little previous research,
where there is an interest not only in the outcomes but also in the processes of human
interaction, and where the complexity of a phenomenon makes attempts to identify and
analyse discrete variables inappropriate. What is more, these methods allow the
researcher to modify his/her approach as the study unfolds (e.g., in accordance with
informants’ communication needs or as fresh lines of enquiry arise from informants’
responses). For all of the above reasons these methods were deemed particularly
appropriate to address the study aims.

Sampling
Unlike quantitative methods, which typically use probability sampling to enable research
findings to be generalised from the study sample to a broader population, the rationale
for using purposeful sampling in qualitative research is the pursuit of in-depth
understanding of a phenomenon without the same concern for generalisability beyond
the study group. To this end, information-rich cases are purposefully sampled for in-
depth study to enable the researcher to ‘‘learn a great deal about issues of central
importance to the inquiry’’ (Patton, 2002, p. 230). Several purposeful sampling methods
were used in this study, namely maximum variation and snowball sampling. Maximum
variation (heterogeneity) sampling aims to capture and describe themes derived from
informants who represent a wide variety of experiences. It is assumed that any common
patterns that emerge from informants are particularly important in capturing shared
perspectives of a phenomenon (Patton, 2002). Snowball (chain) sampling is a method by
which a researcher asks informants to refer him/her to other people who may be able to
provide new or extra perspectives on the issues being addressed in the study. It is
particularly useful when well-connected informants can link the researcher to others who
are not easily identified or are difficult to access.

Informants
In seeking information about the nature of communication in GP consultations with
people with an intellectual disability three different groups of informants were
approached. These were: GPs who regularly provide services for people with an
intellectual disability; adults with an intellectual disability who access GPs for their
primary health care; and people who act as health advocates, including friends, family
members or paid caregivers. All informants were drawn from the Greater Brisbane
Region.
In order to recruit informants with an intellectual disability one of the researchers
 Meeting in the middle 215

(third author) approached three community-based organisations providing housing and

support services for people with an intellectual disability within the Brisbane area. These
were chosen for reasons of heterogeneity and included a large, highly decentralised non-
government support service, a small local housing and support service, and a non-
government service providing both housing and vocational services. Permission was
granted to recruit informants with an intellectual disability who would be able to
comprehend the interview questions and provide personal perspectives on the topic.
Three informants were recruited, including two women with significant expressive
language difficulties and a man who was nonverbal but communicated through the use
of an electronic communication device. These services also provided a source for the
recruitment of seven paid support workers who had acted as health advocates. These
workers varied widely in age and years of experience and both genders were represented.
Since many adults with an intellectual disability who require assistance with GP
consultations live in supported accommodation it is a common experience for the health
advocate to be a paid carer.
It was through the aforementioned support service organisations that the researcher
was provided with contacts for two unpaid health advocates, one being the parent of a
person with an intellectual disability, and the other being a friend. The researcher was
also directed to a range of GPs who provide services to people with a disability. In order
to report on highly effective communication strategies, only those GPs who were
identified as effective primary health care providers by people with an intellectual
disability or their advocates were recruited. In total 17 informants were recruited for the
study, including five GPs (from four different practices), three adults with intellectual
disability, seven paid support workers (from three service organisations), one parent and
one unpaid advocate.

Data collection
All informants were asked to describe their experience of communication within the GP
encounter. Later, they were asked to identify specific factors that they considered critical
to effective health communication, and factors that were obstacles to effective health
communication. Lastly, they were asked to clarify how communication could be
improved and who needed to be responsible for each issue identified. The wording of the
questions for each group of informants varied slightly to make them more relevant.
Interviews were undertaken individually, although on one occasion a group of three
people were interviewed together. Informants were interviewed only once for up to two
hours in their own homes or workplaces. With the informants’ consent the interviews
were audiotaped and later transcribed verbatim.
It should be noted that there are procedural difficulties in interviewing people
with intellectual disability (Stalker, 1998), including issues of their comprehension
and acquiescence. Where informants with an intellectual disability in this study
had difficulty responding to the interview questions, the questions were paraphrased, and
in some cases followed up with closed questions, to ensure that the informants
understood the questions and to verify that the researcher was correctly interpreting their
responses.
216 Ziviani, Lennox, Allison, Lyons & Del Mar

Data analysis and rigour

The narrative data from all interviews were analysed in a number of ways. Since data
analysis in qualitative research is ongoing and inductive, constant comparative analysis
began while data collection was still in progress. As early interviews were transcribed the
researcher was able to consider emerging issues and raise them for comment or
confirmation in later interviews. At the completion of data collection all remaining
interviews were transcribed and thematic analysis of the substantial quantity of narrative
data began. From several readings of the interview transcripts, a list of codes that
described the emerging issues was developed and all interviews were then coded to assist
with the identification of common themes. Data management was facilitated through the
use of QSR NUD.IST (Version 3.0).
Qualitative researchers need to display the rigour of their investigative processes to
enhance the quality and credibility of their data interpretation. In the data collection
phase, all interviews were audiotaped and triangulation of data sources occurred through
the inclusion of informants from a range of backgrounds, abilities, ages and experiences.
As part of the data analysis, member checking occurred (i.e., a preliminary summary of
themes was presented to informants, in written or verbal form) to enable them to check
on the accuracy of representation of their experiences and perspectives.
The question of bias is one that all researchers need to address. Traditional
quantitative research has always encouraged distance between researchers and
participants, on the assumption that detachment reduces bias. However qualitative
researchers question this, asserting that researchers who have personal encounters with
participants develop empathy that leads to greater introspection and understanding of
human behaviours. To ensure that qualitative data is seen as credible, researchers need to
adopt and maintain a stance of neutrality with respect to the phenomenon being studied.
For the purposes of this study, the research assistant who undertook the interviews was
an occupational therapist who was not associated with any of the service organisations
approached.

Results and discussion

While communication was the key focus of the research, informants expressed strong
opinions on the service provision aspects of the doctor-patient encounter, including the
processes by which problem solving occurs in primary health care and some wider
aspects of practice management. All informants provided important suggestions as to
ways that all stakeholders may collaborate in the maintenance of primary health for
people with an intellectual disability. The results are reported here in a number of ways.
Firstly, the key findings of each group of informants are reported separately. This is
followed by a summation of the critical issues and barriers identified by informants.
Finally, the data on responsibilities for effective communication are summarised.

Perspectives of people with an intellectual disability

It was difficult for the informants with an intellectual disability to label issues, for
example, as ‘‘critical for effective communication’’ or ‘‘barriers’’. Rather, they discussed
the quality of the encounter, and made it clear what they did and did not like in a GP
consultation. These informants raised three key themes. Firstly, they confirmed the
 Meeting in the middle 217

difficulty of communication in the GP setting, especially when the encounter was rushed.
The informants expressed appreciation for the assistance they received from carers when
attending a GP consultation. However, there was some expression of frustration about
not being able to discuss the issues with the GP alone.
The second theme was their preference for a GP whom they could trust, and who
would demonstrate warmth and interest in them. Many people with disability were
eloquent in their desire for the GP to be aware of them as adults. They wanted the GP to
speak directly to them, rather than about them, in an age-appropriate manner. As one
patient commented: ‘‘Looking at me and saying the questions for me if they are about
me. A bit like any other patient. I am a human just like anyone else. Dr G still thinks I’m
two years old.’’
The third theme was one of annoyance about inappropriate communication. The
informants expressed annoyance that doctors often preferred to minimise contact with
them, especially when an advocate was present. This included reduced eye contact,
reduced direct conversation, childlike conversation and reduced physical contact, to the
extent that one informant described how a GP had seemed reluctant to examine her at
all.

Perspectives of General Practitioners

GPs raised six key themes, all of which related to the management of people with an
intellectual disability who had compromised communication. Unlike the informants with
disability, GPs made very little reference to the interpersonal or relational aspects of the
GP-patient encounter. The first and most pressing theme raised by GPs was the
professional difficulty they faced in diagnosing and prescribing treatment when
communication was compromised. GPs indicated that when people with an intellectual
disability had difficulty recounting a medical history and current medical information to
them, their information-gathering process took longer, was more difficult, and they were
more cautious about the veracity of their diagnosis. This was especially so if the data
were complex or detailed or when people used an alternative or augmentative
communication (AAC) method, such as signing or an electronic communication
device. Furthermore, GPs expressed concern that people with an intellectual disability
were often not able to fully understand explanations or instructions provided, and that
this had the potential to compromise compliance with treatment. GPs suggested that
individuals with an intellectual disability should try to use the same GP for an extended
period, so that the GP had an opportunity to develop a greater understanding of the
history, abilities and communication style of each individual.
Related to this theme, GPs also raised the complexity of managing the care of some
people with an intellectual disability. They indicated some reluctance to initiate reviews
of medication regimes, especially if the GP had little previous history and knew that the
person had been on the medication for a long time. GPs expressed that they often felt
uncertain that they had enough clear evidence to justify health investigations which were
invasive, complex or time consuming, especially when they were uncertain about the
reaction of the person to a potentially uncomfortable procedure. They also expressed
some caution about engaging in extensive investigations because they found it difficult to
locate specialists who were willing to take on people with an intellectual disability.
The third theme identified by the GPs was the impact of ineffective communication on
the time taken to complete a consultation. Communication difficulties were seen to make
218 Ziviani, Lennox, Allison, Lyons & Del Mar

consultation times longer and potentially more frustrating for both doctor and patient.
Some GPs expressed concerns that the care of people with an intellectual disability
increased their workload substantially. However, avoiding misunderstandings was seen
as highly important, as failure to do so could result in faulty diagnosis and/or
inappropriate treatment. The constant time constraints experienced in general practice
settings made it harder to achieve effective communication with people whose
communication was compromised. It was suggested that people with an intellectual
disability or their advocates should always book a long appointment and inform the GP
ahead of time, so that time pressures might be lessened. An earlier study (Lennox,
Diggens, & Ugoni, 1997) found that 52% of the GPs surveyed said they would be more
willing to see people with an intellectual disability if provided with greater remuneration.
This issue was not raised by the GPs interviewed as they were a group who were selected
as already treating people with intellectual disability. This criterion may also have
identified GPs who had a more positive regard for people with an intellectual disability.
The GPs who were interviewed may have considered, as did 48% of their colleagues in
the Lennox, Diggens, and Ugoni study, that increased remuneration would not make
them more willing to see people with an intellectual disability, as this may have been a
minor issue for them. As one GP commented:

Sometimes you just have to set aside half an hour or whatever length of time.
Because you won’t do it properly in the time limit. Or you accept that there
are certain problems that arise, you’ve got to deal with them and you know
you’re going to be an hour late and you just shrug your shoulders and put up
with it. But you try not to do that because it’s very disruptive to everyone.
You’re under pressure from that point on in the day.
A pressing theme that GPs presented was the need for advocates to attend the
consultation. They considered that many of the communication difficulties could be
reduced if, as often as possible, people with an intellectual disability came to the GP with
a person to act as their advocate. The advocate could report on the person’s health status
or assist the doctor to understand the idiosyncrasies of the person’s communication style.
GPs considered that health advocates would be particularly effective if they came
prepared with a sound knowledge of the person, appropriate records, and pertinent
issues to be presented, accompanied by evidence or observations to inform the
consultation. It was thought that having an advocate present would ensure that any
explanations or treatment advice could be repeated or reinforced within the home
setting. GPs were concerned that, in some situations, advocates attending appointments
made inadequate preparation for GP consultations and found it hard to present
pertinent health issues or to cite any observations to support the discussion. Similarly,
GPs expressed concerns about the skill level of some health advocates to assist in
implementation of treatment. GPs acknowledged that people needed to be trained to act
as health advocates but felt that this was the responsibility of the family or support
organisation.
Another theme raised by GPs was the need for better record keeping. The GPs were
uniformly concerned that record keeping regarding the medical history and health status
of many people with a disability was poorly implemented. They indicated that people
with a disability often had a limited medical record if they had come from an
institutional setting. However, GPs were also concerned about an ongoing lack of record
keeping regarding the health status of the person between visits. Such record keeping was
 Meeting in the middle 219

deemed to be very important because of the inconsistency of caregivers in some settings.

Lack of careful record keeping meant that it was often difficult to glean information
from support workers acting as health advocates. GPs expressed the need for a central
health record to be kept at the person’s home, updated by carers between visits and
brought to GP consultations. They acknowledged that such record keeping was time
consuming, and would require supervision and training of support staff, but that it was
necessary to ensure consistency of care.
Finally, most GPs interviewed cited concerns about informed consent for people with
an intellectual disability. They expressed confusion about the most recent changes in
Queensland’s power of attorney legislation, and were uncertain about how to seek
informed consent if they needed to perform a minor procedure on a patient who required
substituted decision making. They expressed frustration at situations where the health
advocate was unable to give consent, and this needed to be sought from a parent or from
an employee of a statutory body. They were concerned that treatment could be
compromised if consent could not be gained quickly.

Perspectives of health advocates

Health advocates raised the issue of health care equity for people with an intellectual
disability, and discussed practical issues about the quality of the health encounter,
including the nature of their role as advocates. The issue identified as being of most
concern was their perception that some people with an intellectual disability do not
receive the same quality of care that would be offered to a person without a disability.
They discussed the reluctance of some GPs to examine and diagnose issues over and
above the person’s intellectual disability, including major psychological or psychiatric
problems, and noted a willingness to prescribe medication as the only solution to
behavioural issues. Similarly, they cited instances of people who had struggled to obtain
assistance for minor treatable concerns such as constipation or skin conditions. Most
advocates also mentioned the reluctance they sometimes encountered when seeking a
review of management, a referral to a specialist or some further investigation of an
ongoing health concern in a person with an intellectual disability. Despite the volume of
suggestions that advocates made about the value of good communication skills, many
advocates indicated that the measure of a good GP was one who was prepared to
investigate and ‘‘get to the bottom of’’ health issues, and that their willingness to do so
was even more valued than communication skills.
Health advocates discussed appropriate ways of communicating with people with an
intellectual disability. GPs were urged to talk to the person who was the patient, and not
solely to the advocate. Health advocates urged GPs to retain eye contact with the person,
to speak to them in a manner that was age appropriate, and to explain to the person
what was happening while they were being physically examined. In keeping with the
above theme, support workers urged GPs to find ways to communicate health
information more effectively to people with an intellectual disability. They said that GPs
needed to take the time to explain health issues to people in simple, straightforward
terms appropriate to their level of understanding. Similarly, GPs were urged to develop a
range of alternate approaches for gathering information and explaining issues to people
who were nonverbal. This might include diagrams of the body, photographs of
instruments, dolls or models with which they could explain a health issue to the person
and the advocate. It was also advised that GPs constantly check that the person and
220 Ziviani, Lennox, Allison, Lyons & Del Mar

advocate understood the explanation. As one social worker explained: ‘‘[GPs] being able
to explain complex issues with everyday terms, experiences and language. To give
medical examples that the person can appreciate, that is on their level of understanding.’’
GPs were also urged to be aware and responsive to the emotional needs of the person
with an intellectual disability and to be tolerant of any fears or negative reactions
experienced by them. In the doctor-patient encounter, a person with intellectual
disability may be awed by the situation, and thus not volunteer information and accede
to suggestions from the doctor who is seen as an authority figure. Advocates thought
that fearful clients could be assisted by reassurance from a familiar GP, increasing
explanations to allay their fears, greater tolerance shown to unpredictable behaviours
and, in extreme cases, provision of services at more appropriate times or in the person’s
home.
People who acted as health advocates were keen to clarify the role of the advocate.
They recognised that it was a very important role, usually entrusted to older or more
experienced caregivers. They were concerned that GPs realise that funding for many
people with disability was inadequate and it was not always possible to send an
advocate. They were keen to stress that they were not health experts and did not always
know what to report. They indicated that they were assisted in their reporting when GPs
were able to ask the person with the disability very specific questions. They also felt it
was important that the GP pass on information to advocates so this could be
disseminated to all stakeholders.

Service provision
The health advocate informants raised a number of general practice management issues,
which, if implemented, they felt would facilitate the participation of people with an
intellectual disability. The building needed to be located centrally, for people using public
transport, and ideally located near shops or some other public facilities so that people
who were unable to make a telephone appointment could ‘‘drop in’’ to make an
appointment. The building needed to be physically accessible for people with limited
mobility. The practice needed to have some flexibility in its service provision, offering the
option of after-hours appointments, home visits, and phone consultations in certain
cases. Other suggestions included the deployment of warm and friendly front desk staff
who were tolerant of people with unusual behaviour and attentive to ways that they
could minimise waiting-room time, such as making bookings at less busy times of the
day, or by telephoning if lengthy delays were anticipated. There were a range of
suggestions about layout and the provision of pastimes for people unable to read. Most
informants noted that people with disability often needed extra time in the consultation
and practices needed to plan for this eventuality. A summary of the issues considered
critical to good communication by all participants is summarised in Table 1.

Model of cooperation – Meeting in the middle

Both GPs and advocates were unified in their assertion that all parties needed to work
together to prepare for and manage primary health care consultations for people with an
intellectual disability. The model proposed in Table 2 promotes a clear sharing of
responsibility, with assistance by each party in the monitoring and maintenance of the
health of the person with an intellectual disability. The informants suggested specific
 Meeting in the middle 221

Table 1
Summary of issues raised by participants

Issues critical to good communication Barriers to good communication

Before the appointment
Meeting with caregivers to clarify issues
Compilation of records/observations
Skilled advocate plans issues
Person with disability consulted
about appointment
Minimising waiting time
Belief that person with an intellectual disability
deserves equitable health care services
At the appointment
GP is familiar with person
and their communication
GP seeks verbal or nonverbal information
from person in skilled respectful manner
GP seeks information from advocate
without ignoring person
Advocate skilled in relating relevant issues
Adequate time for discussion or problem solving
Person enables full examination to occur
Adequate access to services for referral
After the appointment
Results of visit recorded in central record
System for sharing health information with
other caregivers or advocates
Treatment is followed up
Before the appointment
Lack of preparation before
appointment to generate key concerns.
Lack of record keeping regarding
relevant behaviours or symptoms.
Lack of a unified central record
including past medical history.
Lack of skilled advocate to take
responsibility for health monitoring.
Behavioural difficulties due to
illness or disruption to routine.
Excessive waiting time.
Boredom during waiting time.
At the appointment
Person and advocate unfamiliar with GP.
Inability of person with a disability
to independently relate problems to GP.
Use of AAC method.
Lack of presence of advocate.
Lack of skill of advocate to relate issues.
Inconsistency of advocate attending.
Lack of time to spend on problem solving.
Anxiety of person with a disability.
Lack of appropriate communication
with person with a disability.
After the appointment
Lack of appropriate record keeping.
Lack of communication with other
caregivers or advocates.
Lack of compliance with treatment.

tasks for GPs and others for people with an intellectual disability or their support
workers/advocates to achieve this aim: ‘‘You want health professionals to work with you
towards the bigger goal…’’ [support worker]; ‘‘It will take a broad range of different
service providers and health professionals to make this person’s life better in the long
run.’’ [GP].
In this model five key areas are identified which might contribute to greater
collaboration in the provision of primary health care. First, training issues underpin
basic awareness and preparedness for consultation. The importance of education and
training for medical personnel has been canvassed before when considering the health
needs of people with an intellectual disability (Cook & Lennox, 2000; Lennox &
Diggens, 1999), yet the preparation for support workers has not received as much
attention. GPs further felt that the recent changes to power of attorney law in
Queensland (1998) have caused delays as GPs have sought permission to perform minor
procedures. They felt strongly that more guidelines were required so that this legislation
did not interfere with the implementation of good medical practice.
222 Ziviani, Lennox, Allison, Lyons & Del Mar

Table 2
Model of cooperation – Meeting in the middle

General Practitioners People with Disability and Advocates

Awareness and Training

Knowledge of local services (e.g., housing) Knowledge of symptoms/disease processes.
Identify a range of specialists willing to consult Recording health issues, medication, etc.
Informed consent issues Planning for consultation (generation
of issues, observing, gathering evidence.
Assertiveness in advocacy role.
Improving Access to Health Services
Centrally located service, public transport Comprehensive medical records maintained.
Flexible options offered including One consistent advocate to attend clinic
after-hours or home visits if possible, especially if person uses
alternative communication methods.
Find out less busy times, alternative
options for visiting.
Preparation for Consultation
Ensure adequate time for consultation – remind Ensure adequate time for consultation –
carers to make double appointments always book double appointments.
Clinic staff minimise waiting time Always book same GP if possible.
Provide activities for waiting-room time Prepare for visit including pre-visits.
or alternate room for waiting Bring records.
Plan information to be raised with GP.
Minimise time in waiting-room.
Avoid difficulties in waiting-room.
Appropriate Sharing of Information during Consultation
Review health record Provide health records.
Engage person (look at and address them) Assist patient to identify problem.
Listen to person – attend to body language Assist GP by advising effective
Prompt person to contribute – persist if methods for asking or explaining.
person’s communication style is difficult Provide additional information/observations.
Use age-appropriate speech style Offer lifestyle data.
Examine patient, be aware of fears Assist in allaying fears.
Ask specific questions to prompt carers Be person’s advocate – be assertive for them.
Explain clearly and check understanding Need to generate issues.
Use alternative methods for seeking information Assist in explaining issues to person.
or transmitting information Record issues or ask GP to do so.
Contribute to person’s record
Treatment and Follow-up
Prepare person for investigations Record relevant information for staff.
Be prepared to investigate and refer Clear rules regarding who has
access to information and how it is used.

Second, the context in which primary health care occurs was raised on numerous
occasions. These issues include physical accessibility and location of the consulting
rooms, and greater flexibility of consulting options on the part of the GP, to cope with
people who may be very anxious or disruptive in a local surgery. In situations where a
person’s speech was very limited or difficult to understand, and especially in cases where
people were completely nonverbal and required augmentative systems of communication,
support organisations were urged always to send an advocate. Organisations were also
urged to pay due attention to the consistency and experience of any advocate, and the
 Meeting in the middle 223

fact that maintenance of records between appointments made access to quality primary
care much easier.
Third, the issue of preparation emerged in this study. Preparation can be achieved
organisationally by minimising waiting times and making consultation times long enough
to accommodate the communication needs of people with intellectual disability.
However, it also includes the preparedness of the person seeking the consultation and
their advocate. GPs recommended that the person always be prepared for the visit, with
reminders and pre-visits to reduce anxiety. It was suggested by participants, and
supported by the literature (Stone, 1990), that advocates be well prepared with a range of
issues to be raised and with relevant observations and records that will assist the GP.
Collaboration through sharing of information is highlighted as the fourth area. This
can take the form of sharing recorded information and working together to raise and
deal with health issues, allaying fears and having adequate background information
available. It was also suggested that both GPs and support persons develop a range of
alternative approaches to information gathering, which involve the person as much as
possible, such as the use of diagrams and dolls for indicating sites of pain or discomfort.
Following up appropriately was the fifth area of cooperation, ensuring that the findings
of the appointment were recorded appropriately, that any decisions or treatments were
enacted and that the information was appropriately shared.
While speculative, this model provides a basis for advancing research in this area by
allowing for the development and testing of research hypotheses. While all participants
agreed to the need for collaboration, there were many impediments to this happening,
including carer turnover; burn out; lack of training of carers and GPs; and the fact of
medical services provision being time limited in a population that clearly needs more
time for every part of the consultation process. The ongoing problem of health history,
which is often lost or limited, and the need for an ongoing record that is accessible to all
involved, was also mentioned. In addition, different carers can have quite different views
of what has or has not gone on in a medical consultation and can interpret outcomes
accordingly. Beyond testing this model, future studies need to focus on the ways in which
the philosophical stance of individuals interacts with systems (both funding and
structural) to enhance the primary health care for individuals with intellectual disability.
The trialing of personal health records is another structural aspect of enhancing effective
communication that warrants attention. Ideally these records would belong to the
patient and would include information about what they like and do not like; a visual aid
to communication; record keeping of such things as mood and seizures; tips on how to
access medical practitioners and prepare for consultations; information for the GP staff;
and an ongoing health record and health review prompt for the GP. Trials of funded
health review processes for adults with intellectual disability which incorporate these
features would support this line of investigation (Lennox, 2002; Webb & Rogers, 1999).

Study limitations
Any reading of the findings and recommendations of this study must take account of
many factors that characterise it. Firstly, the 17 informants, while information-rich in
relation to the study aims, can in no way be presumed to represent the broad spectrum
of people who come within any of the 3 stakeholder groups whose experiences were
canvassed. They inhabit a small corner of the metropolitan area in the state of
Queensland. They are people who were readily identified by the researchers either by
224 Ziviani, Lennox, Allison, Lyons & Del Mar

reputation or by their affiliation with services with which the researchers were
acquainted. Furthermore, they were available and willing to participate at the particular
time when the study was conducted. Secondly, the research process, while rigorous
within the resources of the study, allowed for only limited engagement with informants.
More time to engage with informants not only through interviews but possibly also
through some observation of GP consultations would likely have enhanced the
researchers’ understanding of informants’ experiences and viewpoints. The qualitative
interview has been likened to ‘‘a progressive dialogue’’ (Beer, 1997, p. 115) in which
questions and statements of interviewer and respondent (and hence shared under-
standings) build on each other over time, a process which is likely to be somewhat
circumscribed in a single interview. Finally, we, the researchers (academics from
occupational therapy and medicine) bring our own professional viewpoints to the
research process. While this colours the ‘‘lens’’ through which we view our research
informants and interpret their experiences (Hasselkus, 1997), we accept that our
subjectivity is inevitable and have used our awareness of it to sharpen our reflexive
consideration of its influence in the conduct of this study.

Conclusions
This qualitative study has proposed a conceptual model, which proposes attention to
training, access, adequate preparation, and shared information to guide better
communication between doctor, patient and carer. Support workers were urged to
encourage people with intellectual disability to go to the same GP all the time and to get
to know them well. To support this transaction the preparation of adequate medical
records and documentation of observations by support workers was also encouraged.
The GP can then get to know the patient and hence better understand their nonverbal
communication and other cues. GPs were also encouraged to learn some elements of
alternative communication, and to use other media such as pictures to communicate,
because even though these GPs were highly selected, there were still concerns about the
effectiveness of their communications.

Acknowledgements
We acknowledge the financial support of the General Practice Evaluation Program in
enabling this research. We thank the participating adults with intellectual disability,
support workers, family members, support organisations and general practitioners.

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