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Methodological Issues in Inclusive Intellectual
Disability Research: A Health Promotion
Needs Assessment of People Attending Irish
Disability Services
M. Boland*
, L. Daly*and A. Staines*
*UCD School of Public Health and Population Science, University College Dublin, Belfield, Dublin;
Department of Public
Health, Population Health Division, Health Services Executive, Eastern Region, Palmerstown, Dublin, Ireland
Accepted for publication 27 August 2007
Background This paper describes a novel combination of
inclusive methods to evaluate health and health pro-
motion needs of service users (clients) with intellectual
disability. Sixty centres provide disability services to
over 900 clients with intellectual disability in the East
Coast Area Health Board region of Ireland (population
approximately 325 000). This is the first known triangu-
lated large-scale approach to inclusive needs assess-
ment of clients using regional disability services in
Ireland.
Method The research included interviewer-directed sur-
veys of 247 clients with intellectual disability (or advo-
cates) and 180 clients with physical ⁄sensory disability;
focus groups for clients, service providers and carers;
and a postal survey for centre managers. Modification
of existing surveys was required for people with intel-
lectual disability.
Results Fifty-six of 60 (93.3%) centres participated. The
response rate at the client level was 98.8% (3 ⁄250 refus-
als). Health behaviours, likes and dislikes were well
described by clients and advocates. Clients identified
the need for more creative therapy, physical activity,
relaxation therapy and social activities. Service provid-
ers and carers emphasized more the need for speech
and language therapy, counselling, occupational therapy
and physiotherapy.
Conclusions Inclusive research methods can produce use-
ful outcome measures of the health promotion needs of
those with disability. Triangulation is valuable, where
clients, carers and service providers are all involved in
the research process.
Keywords: health promotion, health service evaluation,
inclusive, methodology.
Introduction
Research methods focusing on client views and satisfac-
tion produce valid outcome measures of the quality of
the service (Carr-Hill 1992). Valuable information can be
obtained from clients, carers and service providers to
inform the decisions of policy makers (Crawford et al.
2002). Inclusion of people with disabilities in research
on issues which affect their lives is essential to ensure
that research reflects the perspectives of people with dis-
abilities and focuses on the issues of greatest importance
to them (National Disability Authority 2002a,b). For
those with intellectual disability, becoming involved in
the evaluation of the services they receive is increasingly
stressed by researchers, clinicians and those involved in
service development (Hogg & Mittler 1987; Pitfield-
Smith & Davey 1990; Lowe 1992).
The rights-based approach to disability (Commission
on the Status of People with Disabilities 1996; National
Disability Authority 2002a,b) acknowledges the three
principles of equality, participation and choice for people
with disabilities. The United Nations Standard Rules on
Equalisation of Opportunities for Persons with Disabili-
ties (United Nations 1982) gives a strong commitment
from Governments to involve those with a disability in
research. The first priority of the National Disability
Authority’s (2001) (Ireland) Strategic Plan is to develop
policies which promote the equal rights of people with
Journal of Applied Research in Intellectual Disabilities 2008, 21, 199–209
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disabilities, and an objective under this priority is to
develop guidelines for effectively including people with
disabilities in all aspects of research that affect them.
Background: Inclusive Research
Inclusive research (involving people with disability as
participants) includes emancipatory research, participa-
tive research or an approach combining elements of
either or both with other additional methods (Oliver et
al. 1997). Emancipatory research occurs in partnership
with people with disabilities, with an equal relationship
between the researcher and the person or group being
researched (Oliver 1992; Zarb 1992). True emancipatory
research occurs when the research initiative and focus
originate from people with disability, who are involved
in securing funding and steering the research. In partici-
patory research people with disabilities who are repre-
sentative of the target population conduct the research
and are involved in all stages of the research process,
from initial determination of the research focus, to
reporting and dissemination of findings (Turnbull et al.
1998; Kitchin 2002). Additional inclusive methods have
been described (National Disability Authority 2002a):
•A steering or advisory committee is formed where
people with disabilities, service providers and others
such as policy makers are involved in project planning,
advice and feedback at various stages.
•Consultation and planning groups are set up to iden-
tify issues of importance for the target group prior to
commencing the research.
•People with disabilities are employed as researchers,
identifying any specific support needed for them. Clients
may share more empathy with a researcher with a dis-
ability, particularly if it is similar to their own, and may
be more open and frank (Alderson 1995; Ward 1997).
•People with a disability are direct respondents wher-
ever possible, or are represented by advocates if commu-
nication problems or intellectual disability prevents this.
There are 12 organizations providing day, residential
and respite disability services to those with intellectual
disability in the East Coast Area Health Board region of
Ireland (population approximately 325 000), an area cov-
ering Wicklow and South Dublin. There are 60 separate
centres. Services are provided to over 900 clients (957 at
the time of this research) with intellectual disability. The
re-orientation in the health and social services towards
user consultation, allied with greater emphasis on the
rights-based model of disability, supports the concept of
asking clients with disability their views about the ser-
vices they receive, and about their needs. This paper
describes a novel combination of inclusive methods to
evaluate health and health promotion needs of clients
with intellectual disability.
Methods
The study consisted of three parts: an interviewer-direc-
ted questionnaire for clients with a disability or for an
advocate; focus groups for clients, service providers and
carers; and a postal survey for service providers.
Aims
This study aimed at assessing health behaviours of cli-
ents with intellectual disability, physical disability or
sensory disability attending residential, respite, day ser-
vice or training disability organizations in the Health
Services Executive East Coast Area in Ireland. A second
aim was to assess perceived health promotion needs of
these clients in order to identify areas to target health
education and preventive health.
Planning the research
An advisory group, comprising a person with a disabil-
ity, a nutritionist, a health promotion officer, a rights-
based worker and a disability director advised on meth-
odological process and the development of research
instruments. A steering group of a statistician, epidemi-
ologist and sociologist advised on sampling methods
and survey approach. The Intellectual Disability
Research Committee of one of the larger organizations
advised further on questionnaire development, ethics of
the research and appropriate language. Other individu-
als who gave advice were a lecturer in sports medicine
and the lead interviewer, who had a physical disability.
Participants
The sampling frame of relevant disability facilities is
shown in Table 1. National organizations and support
organizations were not included. An afternoon workshop
was held to explain and discuss the research with all prin-
cipal contact persons and centre managers. The lead
researcher initially visited all service providers and met
with clients in individual centres. There was considerable
overlap in service use by clients, which had to be taken
into account to prevent double-surveying of clients.
A sample size of 425 clients stratified by age and sex
and type of disability permitted estimates of a prevalence
of 20–80% to within a ±3.8% level of precision (Daly et al.
200 Journal of Applied Research in Intellectual Disabilities
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2000); 247 clients with intellectual disability and 180 with
physical ⁄sensory disability were sampled using a strati-
fied random sampling approach. Those under 15 years
old were excluded. Ethical approval was obtained.
Five interviewers were given specific training on the
social model of disability, etiquette and language when
interviewing clients with disability. An interview pack
was given to the interviewer of clients with a intellectual
disability, with detailed instructions for interviewers,
organization details, information sheets, consent forms,
master sheets, survey sheets, four flash cards with lists
to choose from to answer four closed questions, and line
drawings of smiley faces which were used for clients to
choose their like (or dislike) of an issue (Figure 1). The
questionnaires had no identifying data on them. Data
were analysed using Epi-Info statistical package (version
6) and SPSS statistical package.
Measures and procedure
Interviewer-directed questionnaires for clients
Two interviewer-directed questionnaires were devel-
oped, one for those with physical and sensory disability
and a shorter one for those with intellectual disability.
Questions used for those with physical disability were
Table 1 Description of organizations providing day, residential and respite services for people with intellectual disability in
ECAHB
Organization
code
Description
(no. centres)
Clients in facility
aged 15 years or more
Clients
surveyed
1 Day and residential service for clients with autism or
Asperger’s syndrome
54 22
2 Residential home for adult deaf blind 9 9
3
1
Group home 6 0
4
2
Network of residential and day services for 260 children
and adults (six centres and 10 group homes)
260 79
5 Group home 8 2
6
3
Work and supported employment (three centres) 114 26
7 Co-educational day and boarding school for approximately
160 students with special education needs
93
4
8
1
Residential, respite and day centre service for 140 children 27 0
9 Sheltered work and resource work (two centres) 55 26
10 Residential unit with 70 beds for female clients with
intellectual disability, mostly over 65 years old (two centres)
66 13
11
5
Training, employment and day ⁄residential (29 centres) 300 63
12
1
Workshop (42 clients) and group home (seven clients) 49 0
Other Facilities for people with disability other than learning:
day activity centre for people with physical disability. Four clients
with moderate learning disability were interviewed
4
Total 957 247
1
Facility did not wish to participate in interviewer questionnaire.
2
Includes garden training centre for clients with mixed intellectual abilities, adult activity day service for clients with moder-
ate ⁄severe intellectual disability most of whom also have physical and sensory disability, sheltered workshop, residential service for
clients with moderate, severe, profound intellectual disability, many of whom have challenging behaviour.
3
Includes sheltered workshop for those with mostly mild intellectual disability, supported employment for those with mostly mild
intellectual disability, recruitment service and supported employment in the community.
4
Facility requested that no more than three interviews be held.
5
Includes sheltered and supported employment for clients, most of whom have mild intellectual disability, in seven separate facili-
ties; and many community homes for clients with moderate ⁄severe ⁄profound intellectual disability.
How do you feel today? (Show flash card)
1. Well [ ]
2. Oka
y
3. Not ver
y
well
Figure 1 Smiley face sequence.
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modified for clients with intellectual disability after con-
sultation with steering group members and piloting
with clients (Table 2). In many instances, questionnaires
had to be rephrased in order to capture a concept, e.g.
of time. The survey instrument for those with intellec-
tual disability took 20 min to administer and mirrored
the questionnaire for those with physical or sensory dis-
ability, with some sections shortened, and others omit-
ted. It sought information on client demographics,
details of disability, services received, perceived health
status, dentition, screening, physical activity, diet, inju-
ries, social and family supports, and tobacco, alcohol
and drug use.
The questionnaires were developed from four existing
instruments: the SLAN questionnaire which has been
used to survey health-related behaviour in Irish people
(SLAN 2003); Euro-Qol EQ-5D (Kind et al. 1998), a gen-
eric state-of-health measure which describes states of
health in five dimensions: mobility, self care, usual
activities, pain or discomfort, and anxiety or depression;
PAS-ADD (Moss et al. 1996); and the Health Assessment
Questionnaire–disability index (Ramey et al. 1996), one
of the first self-report surveys of functional status in dis-
ability. The questionnaire was piloted on six clients. The
manager usually spoke to clients before the interview
session, as one manager described that ‘feelings of fear
and insecurity may occur when approached out-of-the-
blue’.
An advocate or key worker was present if clients or
advocates wished. Written informed consent was
Table 2 Modifications of questionnaire for people with physical ⁄sensory disability adapted for people with intellectual disability
Question
Content
Issue as described in survey
for people with physical ⁄
sensory disability
Modification for people with
intellectual disability (closed questions
with several answers to choose from,
unless indicated)
Concepts of health Health How do you feel today? Are you well?
Mental health How do you cope or manage with things that happen every day?
Quality of life Do you enjoy life?
Concept of time
1
Weekly schedule Where do you go every day – what do you
do on Monday and Tuesday?
Time travelling to centre What time do you leave the house, and
what time do you arrive in the centre?
Time spent watching television What programme do you watch first?
After which programme do you stop watching TV?
Having a learning disability Do you find it hard to learn new things?
Were you born with a learning disability?
2
Evaluating staff
relationship
How do you get on with
the staff here?
Staff (if present) asked to look away as
appropriate symbol (smiley face scale)
pointed at by client
Quality of Life
measurement
(ED-5Q)
3
Performing normal
activities today
Can you do the things today that you
usually do every day?
4
Social supports How would you rate the physical
support you get from a,b,c.
Who helps you most during the week
to do the things you like to do?
Is it a, b, c or somebody else?
How would you rate the emotional
support you get from a,b,c
Who lives and cares about you and listens
to you during the week?
Screening Have you had breast screening
within the past 5 years?
Did you ever get a special X-ray of your breast
for a check-up? Can you remember when that was?
Advocate assistance Entire questionnaire modified to ask advocate’s opinion
1
Open questions.
2
Question asked directly; some understood that they had a disability; some clients did not.
3
Kind et al. (1998).
4
Many had difficulty in understanding this question.
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obtained from clients over 18 years, or from a parent or
guardian if clients were not able to give their own con-
sent. In these cases, the clients indicated assent. Clients
aged less than 18 years had the survey procedure
explained to them first and their consent ⁄assent sought.
In some instances consent was given by the centre
manager, acting as guardian, to interview advocates
about clients with severe ⁄profound intellectual disabil-
ity. The advocate, when assisting the client, interpreted
on behalf of the client. However, in the case of people
with severe ⁄profound intellectual disabilities, the advo-
cate’s view of the answer was taken. If a client was
unable or did not wish to continue then the survey was
stopped.
Focus group for clients ⁄carers ⁄service providers
A topic guide was developed introducing major
themes. Themes were informed by issues clients men-
tioned during the questionnaire, and the findings of
the questionnaire. The centre managers provided
names of those who had agreed for the researcher to
approach them. The same trained facilitator was pres-
ent at all groups. Participants are described in Table 3.
Focus groups were made as accessible as possible (see
Table 4).
Service provider postal questionnaire
A questionnaire for centre managers was compiled with
the assistance of some of the advisory group and the
steering group. The survey instrument was developed
specifically for this study with some questions adapted
from a Health-Promoting Hospital Questionnaire (Frazer
et al. 2003) and Residential Services Setting Question-
naire (Emerson et al. 1995). The questionnaire asked
about health promotion activities, health promotion
needs, health promotion evaluation, health policies,
smoking, nutrition, physical activity and barriers to
health promotion.
Results
Response rates
Four of 60 centres did not wish to take part in the client
survey (centre response rate 93.3%). Clients attending
these organizations totalled 83. Thus 91.3% (874 ⁄957) of
clients were available for sampling. There were no
refusals by parents. The response rate at client level was
98.8% (3 ⁄250 refusals). The service provider question-
naire was sent to 25 managers, with a response rate of
88%.
Results of client surveys
Methodological issues experienced during the client surveys
Almost all the clients made the interviewers welcome,
and were happy to participate, and the survey did not
appear to intrude on them or upset them. All participat-
ing facilities were keen to assist in obtaining valid view-
points of clients. Clients were adept at giving their likes
and dislikes of aspects of the service. Health behaviours
were well described by clients and advocates. In some
cases, advocates were asked the same question in order
to check for consistency; this was most often needed
when conceptual difficulties arose, for example in dura-
tion of a health-related behaviour, or in quantification
of frequency of a health-related behaviour. For most
clients, open-ended questions received a brief response,
or none. Methods to improve the service were rarely
suggested. Similarly barriers were not often described.
Clients were in all cases able to complete the interview.
Techniques used to include clients who might other-
wise have been excluded were the use of computer pad
technology (by one client who could not speak), use of
interpreters for sign language for deaf clients, and use
of hand signing for deaf ⁄blind clients. A summary of
the methods used to maximize inclusion is shown in
Table 4.
Table 3 Description of Focus Group Participants
Description of group n Participants
Clients with intellectual disability 12 Six clients in a group home, and six in a service setting
Parents ⁄siblings of those with
intellectual disability (two groups)
7 + 4 Eight mothers, two fathers and one sibling
Service providers for those with
intellectual disability (two groups)
7 + 3 One rights officer, a sports co-ordinator,
a group home leader and seven managers
Service providers for those with autism 2 Manager and day-care nurse
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Description of clients
There were 247 respondents with intellectual disability.
Clients’ mean age was 35.5 years; 95% were born with
their disability. Most had an unknown cause or diagno-
sis for their intellectual disability. Categorization of cli-
ents’ disability is shown in Table 5.
Leading known causes for intellectual disability were
Down syndrome (17.0% of total clients), autism or
Asperger’s syndrome (10.1%), and cerebral palsy (4.5%).
Approximately one-third of clients (84, 34.0%) had a
mild intellectual disability. Fewer clients had a low
moderate disability (52, 21.0%), a moderate disability
(56, 22.7%), and a severe or profound disability (46,
Table 4 Methods used to maximize inclusive approach
Key concerns Method used to optimize
Plan for inclusion of clients
and service providers
Visit to each facility; meet manager, staff, clients
Workshop for service providers
Consultation and planning group meeting
Intellectual Disability Research Group advice
Focus Groups for clients, parents, carers, service providers
Ethical research Research Ethics Committee approval
1
Voluntary enrolment, informed consent
Right of refusal prior to or during interview
Confidentiality
Data Protection Act adhered to
Informed consent Information sheet, modified for clients with intellectual disability
Consent and assent, if aged under 18 years, always sought
Participatory approach Employed interviewer with disability
Person with disability, service providers, fund-holders,
policy makers, rights-based officer on advisory group
Piloting among people with disability
Face-to-face interviewing: people with disability were direct respondents
Advocate interpretation where communication difficulties ⁄learning difficulties
Focus group meetings with clients, service providers, carers ⁄parents
Accessible meetings Wheelchair accessible buildings for meetings and focus groups,
with ramps and lifts, and accessible toilet facilities
Evening ⁄early morning sessions to suit carers and workers
Accessible communication Simple, short phrases; easy to read ⁄understand language
Interpreter of modern and ‘old’ sign language
Computer aided communication
Modification of survey instrument
Accessible information Line drawings in questionnaire; smiley face sequence (Figure 1)
Flash cards – large print
Pictures used in focus groups
Accessible transport Researcher visited clients
Wheelchair-accessible bus used for focus group participants
Payment of transport costs for focus group participants
Inclusion of respondents Advocate ⁄key-worker for those with severe ⁄profound
intellectual disability and deaf–blind
Researcher behaviour Training of researchers: understanding of disability, the social model,
the project, etiquette, acceptable language
Feedback Presentation at Intellectual Research Study Day
Presentation to clients and service providers
Easy to read report will be disseminated to clients
1
Research Ethics Committees of the Faculty of Public Health of Royal College of Physicians of Ireland and The Hospitaller Order St
John of God Brothers.
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18.6%). For nine clients (3.7%) there was no level of dis-
ability available. Of the 247 respondents, 67 (27.1%)
were interviewed in residential centres and 180 (72.9%)
in non-residential centres, which included day activity
centres.
Services required by clients
The leading therapeutic intervention and rehabilitation
services received by clients with intellectual disabilities
were creative therapy (craft activities) (59.8%) and phys-
ical activity sessions (43.2%). Many clients wished to
receive more of these activities (43.9% and 35.8% respec-
tively). While a quarter (23.3%) received relaxation ther-
apy, a further third of all clients with intellectual
disabilities wished to receive more relaxation therapy
(33.8%). The major personal assistance and support ser-
vices that clients with intellectual disabilities received
were social or recreational activities (31.0%). A third
(31.8%) wished to receive this service more often, or to
commence receiving it.
Results of service provider surveys
The 22 service providers who responded to the survey
were experienced managers, with an average of
13 years of work experience in services for people with
disabilities and 10 years in their current organization.
The leading services of which organizations wished to
provide more for clients were physiotherapy, speech
and language therapy, occupational therapy and addic-
tion services and personal safety. Service providers did
not identify the need expressed by clients for more cre-
ative therapy, with no organization wishing to provide
more of that service. Few service providers identified a
need for more physical activity sessions (3 ⁄22, 13.6%)
or more relaxation classes (2 ⁄22, 9.1%). While 18 of 22
(81.8%) organizations said they provided social ⁄recrea-
tional activities, only two wished to provide more
activities.
Service providers were asked about specific health
promotion initiatives, and the level of benefit they
would provide for clients in the facility. In descending
order, service providers felt the greatest benefits would
accrue from healthy eating programmes, development
of generalized health promotion programmes for clients,
healthy weight programmes and exercise programmes.
Other programmes which service providers felt would
be beneficial included the following: dealing with
challenging behaviour, food handling, (both staff
programmes), relaxation, skin and foot care. Leading
barriers perceived by service providers to providing
health promotion were heavy workload, lack of
resources, insufficient staff, and doing administra-
tion ⁄paperwork.
Results of focus groups
Focus group themes echoed findings of the service pro-
vider questionnaires, with clients and carers speaking
of the need that many clients had for regular specific
therapeutic and rehabilitation services such as physio-
therapy, occupational therapy, speech therapy and psy-
chological services. All groups reported that more
resources were needed and that many areas were
‘under strength’.
Autism is a communication disorder and I think
there’s a huge onus on us to see that our people
are given whatever tools are necessary to try to
enhance their communication, you know. (Service
Provider)
You need an OT? You need her now – you don’t
need her in 5 weeks time. If you need services it’s
now you need them, not in 3 months time,
5 months time. If you need a bathroom conversion,
you fill in your form and an OT has to come out
and pass it, and if there’s a half an OT on for the
whole of (the region) for the summer, you’re going
to get that next Christmas. (Carer)
Table 5 Description of disability of the 247 respondents to the
client survey
Description of
disability(s)
Number of
clients
% within
category
Intellectual disability alone 134 54.2
Intellectual
1
and sensory disability (54)
Intellectual and sensory disability:
deaf and blind, speech impairment
4 1.6
Intellectual and visual impairment alone 11 4.5
Intellectual and hearing impairment alone 8 3.2
Intellectual and speech impairment alone 31 12.7
Intellectual
1
and physical disability (59)
Intellectual, physical, deaf, blind, speech 5 2.0
Intellectual, physical, speech 15 6.0
Intellectual, physical, blind, speech 2 0.8
Intellectual, physical alone 37 15.0
Total 247 100.0
1
Moderate, severe or profound intellectual disability.
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Certainly, while we buy in psychological services,
I’d like to buy more if we could afford it. We’ve no
occupational therapist. I’d like to buy more if I
could, but it is difficult and we’ve tried in the past
to liaise with other intellectual disability services.
(Service Provider)
Participants criticized the lack of professionals in the
community, leading to infrequent sessions of physio-
therapy for clients and deterioration in functional
status.
We have found it very difficult to get services par-
ticularly …the district nurse as she was then came
out and said I’m sorry I can’t help you; you need
too much help.(Carer).
But there are a lot of gaps in the services. (Carer)
Clients reported the benefit of complementary thera-
pies such as massage and aromatherapy, which helped
them to relax and sleep, but felt that they should be pro-
vided more often.
OK, the person would use their oils and that with
the massage and it is really very good, very relax-
ing. The aromatherapist comes. What she does, it
helps you for your whole body. It actually helps
you with what you do during the day but helps
you to get through the evening and get through the
night because it is long-lasting. And it also helps to
restore your balance. (Client)
The importance of having time for creative activity,
leisure, life-skills and non-work activities was empha-
sized by clients and parents, reflecting results of the
client questionnaire.
I go to (centre) and I paint with (name). I love
painting. I wouldn’t give up painting and they
were trying to get me working in a coffee shop
so they were, and if they get that job for me I
would have to just keep Wednesday for painting.
I wouldn’t give up painting. I love it now. (Cli-
ent)
(Name of daughter) works two days a week, and
then, that means she has only three days to take
part here; there are so many programmes going on
that, you know it is marvellous. They have choices,
if they can fit them in. (Parent)
Some of them love swimming, some of them would
love to dance …There’s a wide variety of different
things they are able to do and other people would
love to do things they can’t. Some people would
love to be on a bicycle and then other people that
couldn’t do that, you know? So you are kind of
dealing with a different variety there, you know?
(Service Provider)
The theme of social support arose during focus group
meetings. Service providers saw themselves as advo-
cates and confidantes for clients. Family members were
perceived as very important by staff, but in some cases
over-protective or over-directive towards clients.
It ends up with the advocate of the individual mak-
ing a lot of the decisions for people who wouldn’t
be able to make those decisions, in their best inter-
est. The person who would know them best obvi-
ously would be the best person to do that. (Service
Provider)
You see we find that some, when they have a prob-
lem with the social part of their lives, because they
depend totally on the staff here, some of them don’t
have any family other than the people who work
here, who become their family and their friends
and …they’ve always tried to encourage it before
about taking (clients) out and that sort of thing, but
after working a thirty-nine hour week you don’t
really want to come and take somebody out after
working a eight ‘til eight. You don’t want to take
somebody to the pub, you know. There we kind of
have problems, where you don’t have people to
help them in their social life. (Service Provider)
The role of the community in social support was
accepted as very important, not only in engaging clients
in community life, but also as a means of enhancing dis-
ability awareness within the community. Most service
providers felt that this was an area requiring further
development.
I think would be fantastic, just to see our lads being
able to get up on a Saturday morning, those who
are capable, and to feel comfortable going down to
their local shop- the acceptance from the commu-
nity. (Service Provider)
(Clients) definitely (need) the community living.
We try to as much as possible for those that are
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2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd, 21, 199–209
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high functioning to get rid of the feeling of being
institutionalised. (Service Provider)
Thus, focus group themes echoed in many ways the
findings of the questionnaires, with clients, carers and
service providers highlighting the unmet need for cer-
tain services for people with disability. The need for
acceptance of people with disability in the community
was stressed, with all stakeholders emphasizing the
importance of community interaction for both clients
and the community.
Discussion
This study found that inclusive methods are valuable in
disability research as part of a triangulated approach to
service evaluation. Data gained from three sources (cli-
ents ⁄advocates, service providers and carers) were com-
plementary but all three sources were needed to build a
complete picture of needs for clients with intellectual
disability. We found that adjustments in methodology
were needed to make the process truly inclusive for cli-
ents.
The main findings of this study were that clients
wished to receive more creative therapy services, physi-
cal activity sessions and relaxation therapy. A third
wished to partake in social and recreational services
more often. Service providers put more emphasis on
physiotherapy, speech and language therapy, occupa-
tional therapy and counselling. Service providers felt
that benefit would accrue to clients from programmes in
healthy eating and physical activity. During focus group
meetings, carers not only acknowledged the need for
therapeutic and rehabilitation services but also stressed
the benefit of creative therapy, leisure activities and
socializing for clients.
Thus, clients made an important contribution to the
review of services they received, prioritizing stated
health promotion needs differently than service provid-
ers and carers. The literature supports our findings that
people with moderate intellectual disability and limited
expressive skills can provide reliable information about
their need, when questions are presented in a structured
and supported format (Wadsworth and Harper 1991;
Ward and Simons 1998). The limitations to this study
are communication difficulties.
People with intellectual disability have difficulty
understanding concepts and expressing responses (Fin-
lay & Lyons 2001). Our advisory group, together with
piloting, aided in questionnaire modification to over-
come these issues. Views of advocates can be valuable
where clients have limited receptive or expressive lan-
guage (Lennox et al. 2004). We found that key workers
generally gave pertinent views on health behaviours
and health promotion needs of clients. A short duration
of acquaintance with clients limited advocates’ value in
some cases.
We found a simple pictogram (Figure 1) to be easy to
use for clients with moderate intellectual disability, as
reported previously (McVilly 1995; Wadsworth and Har-
per 1991; Cummins 1992). We found closed questions or
scaled option responses more suitable for clients with
intellectual disability, and those few open questions that
were posed often yielded no response or ‘I don’t know’
– as found elsewhere (Wadsworth and Harper 1991).
Flash cards were also useful for closed questions where
a choice from more than two responses was needed.
Holding focus groups with people with an intellectual
disability as participants is infrequently described in the
literature. Communication and concepts are major issues
and in ability to participate with other members has been
a limiting factor in other studies (Goodman 1998; Fraser
and Fraser 2001; Martin et al. 1997). We found that crea-
tive methods of enhancing participation and feedback
such as drawings, and pictures were of great benefit.
Research involving clients with intellectual disability
is complex if inclusion is to occur, and valid results are
to be obtained (Walmsley 2004). Some describe soliciting
the views of people with an intellectual disability as
being fraught with difficulties (Atkinson 1988; Finlay &
Lyons 2001) and ‘by no means easy’ (McVilly 1995).
Contrary to these reports, we would describe the pro-
cess as positive and personally enriching. Our excellent
response rates are perhaps an indication of how under-
studied this population has been in Ireland. Clients who
could communicate were for the most part cheerful,
friendly and engaging. Advocates appeared genuinely
interested in the client and caring about the client’s wel-
fare. Service providers were immensely facilitating, and
many attended focus group meetings outside their work
hours. Parents and carers were supportive of the client’s
wish to give views, and were eager to give their own
views, travelling on winter evenings to attend focus
group meetings, and openly sharing experiences. Inter-
viewers facilitated the project, one staying for three
nights in a distant disability centre to complete inter-
views.
Findings of this evaluation of health and health pro-
motion needs of clients are valuable and valid and are
being reported to policy makers, service providers, and
in easy-to-read format to clients. Our main recommen-
dation is that policy makers and service providers
Journal of Applied Research in Intellectual Disabilities 207
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should increasingly promote health in clients with intel-
lectual disability in Ireland. While resource-intensive
health promotion needs (such as speech and language
therapy, physiotherapy) have been recognized by ser-
vice providers and carers, clients identify important
needs as those that are less ‘health service’ related –
such as creative therapy, relaxation sessions and social
activities. The critical need for physical activity promo-
tion and healthy eating stressed by all stakeholders
should be addressed.
Acknowledgments
The authors gratefully acknowledge the help provided
by disability organizations within the East Coast Area
region, and are indebted to clients, advocates, parents
and service providers for their views. Thanks are due to
members of the Health Promotion Department, HSE
East Coast Area, and the steering and advisory commit-
tee members for their guidance and to the interviewers.
This study was funded through the Cardiovascular
Strategy of the Health Services Executive, East Coast
Area.
Correspondence
Any correspondence should be directed to Dr Ma
´irin
Boland, Department of Public Health, Population Health
Division, Health Services Executive, Eastern Region,
Stewarts Sports Centre Mezzanine Floor, Waterstown
Ave, Palmerstown, Dublin 20, Ireland (e-mail: mairin.
boland@gmail.com).
References
Alderson P. (1995) Listening to Children: Children, Ethics and
Social Research. Barnados, London.
Atkinson D. (1988) Research interviews with people with men-
tal handicaps. Mental Handicap Research 1, 75–90.
Carr-Hill R. (1992) The measurement of patient satisfaction.
Journal of Public Health Medicine 14, 236–249.
Commission on the Status of People with Disabilities (1996) A
Strategy for Equality. Stationery Office, Dublin.
Crawford M., Rutter D., ManleyC. , Weaver T., Bhui K., Fulop
N. & Tyrer P. (2002) Systematic review of involving patients
in the planning and development of health care. British Medi-
cal Journal 325, 7375.1263.
Cummins R. (1992) Comprehensive Quality of Life Scale-Intellectual
Disability (COMQoL-ID). Deakin University, Victoria, Australia.
Daly L., Bourke G. & McGilvray J. (2000) Interpretation and Uses
of Medical Statistics. Blackwell Science, Oxford.
Emerson E., Alborz A., Felce D. & Lowe K. (1995) Residential
Services Setting QuestionnaireHester Adrian Research Centre,
University of Manchester, Manchester.
Finlay W. & Lyons E. (2001) Methodological issues in inter-
viewing and using self-report questionnaires with people
with mental retardation. Psychological Assessment 13, 319–335.
Fraser M. & Fraser A. (2001) Are people with learning disabili-
ties able to contribute to focus groups on health promotion?
Methodological Issues in Nursing Research 33, 225–233.
Frazer K., Clarke A. & Daly L. (2003) Smoke Free Hospital Initia-
tive. Health Promoting Hospitals Network, Dublin.
Goodman K. (1998) Service user involvement. In: Developing and
Managing High Quality Services for People with Learning Disabli-
ties, Vol. 16 (ed M. Kellaway), pp. 257–269. Ashgate, Aldershot.
Hogg J. & Mittler P. (1987) Staff Training in Mental Handicap.
Croom Helm, London.
Kind P., Dolan P., Gudex C. & Williams A. (1998) Variations in
population health status: results from a United Kingdom
national questionnaire survey. British Medical Journal 316,
736–741.
Kitchin R. (2002) The researched opinions on research: disabled
people and disability research. Disability and Society 15, 25–47.
Lennox N., Taylor M., Rey-Conde T., Bain C., Boyle F. & Purdie
D. (2004) Ask for it: development of a health advocacy inter-
vention for adults with intellectual disability and their gen-
eral practitioners. Health Promotion International 19, 167–175.
Lowe K. (1992) Consumer based service-what consumers think.
The British Journal of Mental Subnormality 38, 6–14.
Martin D., Roy A., Wells M. & Lewis J. (1997) Health gain
through screening – users’ and carers’ perspectives of health
care: developing primary health services for people with an
intellectual disability. Journal of Intellectual and Development
Disability 22, 241–249.
McVilly K. (1995) Interviewing people with a learning disability
about their residential service. British Journal of Learning Dis-
abilities 23, 138–142.
Moss C., Prosser H., Costello H., Simpson N. & Patel P. (1996)
PAS-ADD Checklist. Hester-Adrian Research Centre, Man-
chester.
National Disability Authority (2001) A Matter of Rights: Strategic
Plan 2001-2003. National Disability Authority, Dublin.
National Disability Authority (2002a) Guidelines for Including
People with Disabilities in Research. National Disability Author-
ity, Dublin, Ireland.
National Disability Authority (2002b) Ask Me: Guidelines for
Effective Consultation with People with Disabilities. National
Disability Authority, Dublin.
Oliver M. (1992) Changing the social relations of research
production. Disability, Handicap and Society 7, 101–114.
Oliver M., Ward L. & Zarb G. (1997) Doing Disability Research.
Barnes & Mercer, Leeds.
Pitfield-Smith S. & Davey R. (1990) Consumer Participation: An
Essential Component of Disability Program Evaluation. National
Evaluation Conference, Sydney.
208 Journal of Applied Research in Intellectual Disabilities
2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd, 21, 199–209
14683148, 2008, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2007.00404.x by Dublin City University, Wiley Online Library on [08/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
Ramey D., Fries J. & Singh G. (1996) The Health Assessment
Questionnaire 1995 – status and review. In: Quality of Life
and Pharmacoeconomics in Clinical Trials (ed B. Spilker), pp.
227–237. Lippincott-Raven, Philadelphia, PA.
SLAN (2003) The National Health and Lifestyle Surveys. Health
Promotion Unit, Department of Health and Children; Centre
for Health Promotion Studies, National University of Ireland
Galway; and Department of Public Health Medicine and Epi-
demiology, University College Dublin, Dublin.
Turnbull A., Friesen B. J. & Ramirez C. (1998) Participatory action
research as a model for conducting family research. Journal of
the Association for Persons with Severe Handicap 23, 178–188.
United Nations (1982). United Nations World Programme of
Action Concerning Disabled Persons (A ⁄37 ⁄51) United Nations,
New York.
Wadsworth J. & Harper D. (1991) Increasing the reliability
of self-report by adults with moderate mental retardation. Jour-
nal of the Association for People with Severe Handicaps 16, 228–32.
Walmsley J. (2004) Inclusive learning disability research: the
(nondisabled) researcher’s role. British Journal of Learning Dis-
abilities 32, 65–71.
Ward L. (1997) Seen and Heard: Involving Disabled Children and
Young People in Research and Development Projects. York Pub-
lishing Services, York.
Ward L. & Simons K. (1998). Practising partnership: involving
people with learning difficulties in research. British Journal
of Learning Disabilities 26, 128–131.
Zarb G. (1992) On the road to Damascus; first steps towards
changing the relations of disability research production.
Disability, Handicap and Society 7, 125–138.
Journal of Applied Research in Intellectual Disabilities 209
2007 The Authors. Journal compilation 2007 Blackwell Publishing Ltd, 21, 199–209
14683148, 2008, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/j.1468-3148.2007.00404.x by Dublin City University, Wiley Online Library on [08/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
