NURSE’S EXPERIENCES
The experiences of registered intellectual disability nurses caring for
the older person with intellectual disability
Catriona M Doody, Kathleen Markey and Owen Doody
Aim and objectives. To explore the experiences of registered intellectual disability nurses caring for the older person with
intellectual disability.
Background. Increased longevity for the older person with intellectual disability is relatively a new phenomenon with social
and medical factors having significantly increased the lifespan. The ageing population of people with intellectual disability is
growing in Ireland, and they are outliving or expected to outlive their family carers.
Design. A qualitative Heideggerigan phenomenological approach allowed the researcher become immersed in the essence of
meaning and analyse how registered intellectual disability nurses working with the older person perceive, experience and
express their experience of caring.
Methods. After ethical approval was granted, data were collected through semi-structured interviews from seven participants
and were transcribed and analysed thematically using Burnard’s framework for data analysis.
Results. Three key themes were identified: ‘care delivery’, ‘inclusiveness’ and ‘client-focused care’. The study highlights the
need for effective planning, an integrated approach to services and that the registered intellectual disability nurse needs to be
integrated into the care delivery system within the health service to support client and family carers in the home environment.
Conclusions. Overall, the study shows the importance of teamwork, proactive planning, inclusion, attitudes, individualised
care, knowing the person and best practice in providing care for older people with intellectual disability.
Relevance to clinical practice. This paper reports on the findings of a study which explored the experiences of caring for the
older person with intellectual disability. Teamwork, proactive planning, client-centred approach and supporting clients living
at home are important as ageing is inevitable.
Key words: ageing, intellectual disability, nurses experience, older person
Accepted for publication: 22 July 2012
Introduction
Ageing with a lifelong disability is relatively a new phenom-
enon illustrated by dramatic changes in life expectancy for
people with intellectual disability (Carter & Jancer 1983,
Bigby 2004). This phenomenon was first highlighted in the
United States in the 1980s because of the growing number
of older people with intellectual disability outliving their
family carers (Fisher 2004). This increased longevity is
resulting in nurses coming into contact with ageing people
with intellectual disability, and the need for information
about ageing for adults with intellectual disability is intensi-
fying (Service & Hahn 2003). Knowledge of age-related
change is vital to mobilise action to slow its occurrence or
minimise its impact through appropriate individual or envi-
ronmental adaptation and compensation. However, often
general assumptions are made that physical decline or poor
health is attributable to the impact of ageing, thereby little
Authors: Catriona Doody, MSc, GradDip, Staff Nurse, Daughters
of Charity Service, Limerick; Kathleen Markey, Lecturer, Depart-
ment of Nursing and Midwifery, University of Limerick (North
Bank Campus), Limerick; Owen Doody, MSc, BSc, Lecturer,
Department of Nursing and Midwifery, University of Limerick
(North Bank Campus), Limerick, Ireland
Correspondence: Owen Doody, Lecturer, Department of Nursing
and Midwifery, University of Limerick (North Bank Campus),
Limerick, Ireland. Telephone: +353 61 213367.
E-mail: [email protected]
© 2012 Blackwell Publishing Ltd
1112 Journal of Clinical Nursing, 22, 1112–1123, doi: 10.1111/jocn.12020
cognisance of the fact that individuals with intellectual dis-
ability are more likely to suffer from health problems than
persons in the general population (O’Hara et al. 2010).
Therefore, the responsibility shifts onto RNIDs to recognise
atypical symptoms such as challenging behaviour that could
be indicative of an underlying health problem and support
people with an intellectual disability maintain their health.
Background
In Ireland, 26,066 people were registered on the National
Intellectual Disability Database (2009) by Kelly et al.
(2010) an increase of 37% since the 1974 Census. Propor-
tionately, the number of people over 35 with intellectual dis-
ability has increased from 29% in 1974 to 49%
(n = 12,773), reflecting an increased lifespan (Kelly et al.
2010). This changing age profile has implications for service
planning, including a demand for full-time residential ser-
vices, support services for ageing caregivers and services
designed specifically to meet the needs of older people with
intellectual disability (Bigby 2004). Irish government policies
have highlighted the need for appropriate services for indi-
viduals suited to their needs (Commission of Inquiry on
Mental Handicap, Government of Ireland 1965; Planning
for the Future, Government of Ireland Department of Health
1984; Needs and Abilities, Government of Ireland Depart-
ment of Health 1990; Shaping a Healthier Future, Govern-
ment of Ireland Department of Health 1994; Quality and
Fairness, Government of Ireland Department of Health &
Children 2001). However Jacobzone (2000) and Tolson et al.
(2005) recognise that meeting the health and social-care
needs of the ageing population is challenging, particularly
those requiring long-term care. RNIDs have a multifaceted
and crucial role in meeting care needs (Alaszewski et al.
2001, Sheerin 2004) and have the potential to become
agents of inclusion as they work at the very heart of initia-
tives to develop services for people with intellectual disabil-
ity (Gates 2006). Within the RNID role direct care, care
management and administration, liaison work and educa-
tional activity are underpinned by the promotion of client
autonomy (Long & Kavarian 2008). However, while there
is a call for evidence-based care (Moulster & Turnbull
2004), there is a dearth of studies on the experiences of
RNID particularly in caring for older person. Additionally,
Gates (2006) identifies people with intellectual disability
view the RNID as possessing specialist knowledge, and
appropriate knowledge, skills and attitudes are vital in pro-
viding a holistic person-centred approach to care delivery.
Given that intellectual disability nursing is unique to Ireland
and the UK, nurses within the discipline need to create a
sound accessible research base highlighting the needs and
effective care strategies (Griffiths et al. 2007). Therefore, the
essence of intellectual disability nursing should be to endeav-
our to capture and illuminate the very heart and kernel of
care to create an evidence-based quality service worthy of
underpinning care (Doody et al. 2012). To fulfil this, it is
essential that RNIDs working with older people identify the
growing complexities and challenges working with this
population group and provide strong leadership to remain
viable as a profession and continue to serve people with
intellectual disabilities (Northway et al. 2006).
Methods
Aim
The study aimed to explore the experiences of RNIDs
caring for older people with intellectual disability.
Research design
In accordance with the study aim, a qualitative phenomeno-
logical approach was chosen, as it is considered appropriate
in examining the qualities of human experience (Balls
2009). Within the phenomenological approach, the partici-
pant is recognised as the expert in relation to the phenome-
non under enquiry, and while the researcher may know the
literature and theories, they do not know the relevant
dimensions of the experience being reported by the partici-
pant (Giorgi 2006), thereby allowing the researcher access
the participant’s lifeworld to gain a deeper understanding
of their experience (Balls 2009). Ethical approval was
obtained from the Ethics Research Committee of the orga-
nisation, and access was sought from the director of nur-
sing to the research site.
Participants and recruitment
A purposive sample of RNIDs working in a long-estab-
lished voluntary service providing community and residen-
tial services (n = 20) were mailed an information leaflet
and invitation letter to participate in the study. All partici-
pants were qualified over two years and had at least one
year’s experience working with the older person with
seven participating in the study. The participants com-
prised of men and women, of nurse and nurse manage-
ment grades and day and night staff. Written informed
consent was obtained, and confidentiality was protected;
participants’ had the right to withdraw at any time with-
out prejudice. Table 1 lists the demographic details of the
participants.
© 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 1112–1123 1113
Nurse’s experiences Nurses experience caring for older clients
Data collection
Data were collected by interviews using a semi-structured
qualitative approach in a venue of the participant’s choice,
lasting 60–90 minutes and audio-recorded to allow for
transcription. Interviews were aimed at exploring the par-
ticipant’s experience of caring for older people with intel-
lectual disability and were transcribed verbatim and as
analysis progressed questions related to emerging themes
were added. However, it is worthy to recognise that data
may have been influenced by the fact participants were
known to the first author.
Data analysis
The first author conducted the interviews, and the process
of data analysis followed Burnard (2006) thematic analysis
framework that is widely used in nursing research. This
involved six steps: taking memos after each interview, read-
ing transcripts and making notes of general themes,
repeated reading and generating open-coding headings to
describe all aspects of the data, reducing the codes under
higher order headings, returning to the data with the higher
order codes and collating the organised data for reporting.
Two members of the research team reviewed the transcripts
independently, and findings were compared and discussed
until consensus was reached.
Results
Three key themes emerged from the data: ‘care delivery’,
‘inclusiveness’ and ‘client-focused care’. Themes were for-
mulated by placing meaning on the participants’ statements
and organising the meanings into themes. The themes and
subthemes are highlighted in Table 2. Some of the themes
have overlapping elements, and some of the statements may
highlight more than one theme as narrative material is
generally nonlinear (Polit & Beck 2010).
Care delivery
Participants expressed the importance of teamwork, proac-
tive planning and family involvement as crucial components
of caring for the older person.
Teamwork
Teamwork was seen as essential by participants in the pro-
vision of quality care, and all acknowledged the pivotal role
the RNID plays in that process:
If you get new staff in the team they need to be cosseted along and
most crucial is that the RNID spear head the team. (Ann)
However, some participants felt their input in care planning
was not valued, and RNIDs need to be more involved in
care planning:
The RNID is with the person, whereas other team members haven’t
the same twenty-four hour service, so the RNID plays a big part
and needs to be involved more rather than been overlooked by the
team, it’s frustrating when the person is declining and your opinion
is not considered, nor listened to, it took a doctor (named location)
to say that what I was saying was right and now all systems are in
place. (Joan)
This frustration was identified as something that can affect
confidence in practice leading the RNID to question their
knowledge and skills in practice:
You think am I too pushy, am I going way too quickly with this
and you think maybe I’m a bad practitioner because I want to talk
about death when the person is still alive, and then someone comes
in and reinforces you’re on the right track, you can become
Table 1 Demographic details of the participants
Education Nursing Certificate (RNID) and
a certificate in palliative care
Nursing Certificate (RNID) and
a certificate in management
Nursing Diploma (RNID) two participants
Nursing Degree (RNID) two participant
Nursing Post-Graduate Degree (RNID)
one participant
Experience Ranging from 10–25 years in caring for
people with intellectual disability
Ranging from 3–10 years caring for older
people with intellectual disability
Gender Two males (James and Mike), five females
(Ann, Mary, Joan, Marie and Jackie)
Position/grade Two nurse managers, four staff nurse
(day duty), one staff nurse (night duty)
Table 2 Research themes and essences
Theme Essence
Care delivery Teamwork
Proactive planning
Family involvement in care
Inclusiveness Inclusion
Attitudes to clients with intellectual disability
Services for older people with intellectual disability
Client focused Individualised care
Knowing the person
Best practice
© 2012 Blackwell Publishing Ltd
1114 Journal of Clinical Nursing, 22, 1112–1123
C. Doody et al.
de-skilled from working in that environment, it takes your confi-
dence. (Jackie)
This frustration and lack of recognition often lead to feel-
ing angry, but participant recognised the team has a signifi-
cant role to play in providing care:
When you’ve seen something in the elderly person and brought it
to the attention of the team you’re often turned aside, it makes me
angry because I trained as an RNID, I’ve years of experience, I see
them regularly, but while it’s a battle the input required from the
multidisciplinary team is more as they age and we recognise this.
(Mary)
Proactive planning
While smaller numbers and homelike environments are
incorporated into today’s services, participants felt ser-
vices do not always focus on the inevitability of ageing
clients:
Mobility is a big thing it’s decreasing as one gets older and there
are certain aspects that really need to be looked at before it’s too
late, service is blind to the fact they are ageing. So we all have to
think of what’s happening now and what’s going to happen down
the line as facilities weren’t put in to allow for someone ageing so
your constantly trying to adapt the environment. (Mike)
The RNID is a valuable resource to consult with relating to
future planning; however, there is a concern that this is not
occurring:
I’ve never had the experience that I would have been involved in
planning the environment, or planning for the future needs, I feel
they don’t consult nurses who know the clients. (Marie)
Participants articulated that the older clients present with
more complex healthcare needs:
I worked with a younger age group and there wouldn’t be quarter
of the health issues that we would see with the older clients and
you need to plan and anticipate more. (Ann)
Family involvement in care
Participants identified the support from family members
and their input as fundamental in care provision, highlight-
ing the importance for healthcare professionals to encour-
age effective communication with the family during care
planning:
Family input is vital, we welcome and applaud it and keep families
informed of everything, we acknowledge what they do and try to
keep all doors of communication open, their input can sometimes
get things done so much faster, if they push, it happens. (James)
Family input was highlighted as having a visible impact on
the client’s emotional well-being:
They have a reason for perking up and been brighter it’s for family
and you know they are delighted to see them. (Mary)
Inclusiveness
Participants viewed inclusion within society as a crucial
element in being valued members of their community. Con-
sequently, this familiarity and presence may improve socie-
tal attitudes. Participants also expressed that services need
to be age-appropriate, develop supports in retirement, loss
and bereavement, thereby allowing for normal life course.
Conversely, services need to embrace community support as
a two-way process facilitating the RNIDs integration into
community services and supporting family carers.
Inclusion
All participants commented on inclusion as a major part of
their role in promoting the clients integration within soci-
ety, relating to activities and using aged services:
They should do normal things that any elderly person does, go out
for meals, go to concerts, go to bingo, those types of activities and
pastimes and be brought in more with other elderly people. (Joan)
However, participants acknowledged that there were many
potential barriers to inclusion such as staffing levels and
expressed frustration regarding reduced staffing levels as it
prevents staff incorporating positive initiatives that promote
inclusion:
If you have a large group with fewer staff, you have less opportuni-
ties for going for walks, going to different social venues, maybe
joining a gym, joining clubs, meeting different people, their whole
life changes socially with that one aspect. (Jackie)
Participants wanted a greater emphasis to be placed on
preparing other nursing specialisms to care holistically for
clients, given there is a greater potential for older people
with intellectual disability to access acute services. They
saw student nurse training as an area that could be devel-
oped to allow greater exposure to people with intellectual
disability:
Student nurses only come here for a week if they are lucky its not
enough, our students do so many weeks in a general hospital and
mental health placements then those students should be doing the
same in intellectual disability. (James)
Participants identified that the RNID role needs to develop to
support clients living at home been cared for by aged carers:
© 2012 Blackwell Publishing Ltd
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Nurse’s experiences Nurses experience caring for older clients
There are clients at home and even though they’re getting the best
of care and their parents are brilliant with them the help of an
RNID would open pathways and support them. (Marie)
Attitudes to clients with intellectual disability
Participants commented on the importance of seeing the
person rather than the disability expressing that this was
not always the case in society at large:
Anything the normal community has, intellectual disability elderly
people should have, allowed or join and there wouldn’t be this
fear, this dread of a house being built/bought in the middle of the
community for people with disability. (Mike)
However, participants acknowledged that there have been
some improvements in attitudes of people to clients with
intellectual disability:
I think there’s a perception you can change attitudes but it takes
literally generations to change attitudes and today’s attitudes are
better than they were twenty years ago. (Mary)
However, there was frustration with the lack of knowledge
and understanding of some healthcare professionals within
the healthcare sector, where healthcare professionals only
see the disability and have no desire to learn about caring
for the older person with intellectual disability:
They look at their disability and the person behind the disability is
not seen they don’t give the time or wish to understand the client.
(Ann)
However, these negative attitudes can have a positive out-
come for the individual:
They view our ladies as been more prone to having complications
and that’s why, we get the care as soon as we need. (Jackie)
The RNID holds a unique attitude regarding dignity, respect
and personhood of the individual which is seen as the
cornerstone of care. In caring, the RNID respects each indi-
vidual and always sees the person as separate from the prob-
lem or behaviour leading to a positive unconditional regard:
They all have their good days and bad days. You don’t blame them
for being in bad form, they can always take out their bad form on
us that’s not a problem. (Mary)
Participants also identified a unique sense of pride and com-
mitment to the care and a willingness to explore all avenues
to meet the individual’s needs:
‘We’ve not rigid in our care, we’ll try anything. We will take ser-
vice users anywhere, anything for new experiences, anything to try
help with whatever difficulties arise. (Marie)
Services for older people with intellectual disability
Participants identified that service provision needs to differ
for older individuals and activities need to be implemented
at a slower pace, age appropriate and meaningful:
The elderly are a different group, things need to be slower we have
to think would you do that with your mother or granny, so we
think age appropriateness we have to think activities, maybe slower
mundane activities and they will let you know if it’s suitable as
they must gain enjoyment from the activity. (Joan)
Retirement was seen as an important aspect to aged services
but not fully in operation at present. Participants acknowl-
edged that retirement should be an active process rather
than a withdrawal from activities and guided by the service
user’s abilities:
There comes a time when you wind down and if you have an intel-
lectual disability it isn’t any different. They should retire but still
do things, retired people do things, they go travelling, bowling, for
nice walks and other things. (Mike)
The value of reminiscence was identified as a positive
aspect of caring for the older client and could contribute to
the life of an individual:
Certain clients would be able for reminiscence therapy, just even sit
down and have a one to one chat, where they came from and their
family. This means more to them and the family and a group could
be really fostered in that setting. (Ann)
It was identified that as life is a cycle from the cradle to the
grave, the RNID has a valued role and important role to play
in interpreting the needs of the individual in this area. One
factor acknowledged was the aspect of loss that the person
with intellectual disability may experience and while it is dif-
ficult to truly have an insight into the person’s feelings/expe-
riences one does need to be always aware of all possibilities:
As they age and either visits home are less frequent or the parents
have passed away, we see the knock-on affect of that daily because
they cannot understand where the family connection has gone. We
will never truly realise how it affects them, a normal person
grieves, but you need to think how they grieve and we can miss
out on that, there should be more on bereavement because we
don’t really know whether it’s a physical ailment or a loss as to
why there’re going downhill. (James)
Client-focused care
The aspect of client-focused care was expressed by partici-
pants who acknowledged that knowing the person assisted
them to tailor care to meet the needs of the individual.
© 2012 Blackwell Publishing Ltd
1116 Journal of Clinical Nursing, 22, 1112–1123
C. Doody et al.
Although person-centeredness was acknowledged as desir-
able, participants felt restricted in its implementation.
Individualised care
The aspect of individuality was a core concept of caring
expressed by participants identifying that the client always
comes first:
I always deal with everyone as one person I think that comes with
experience. (Ann)
Service provision and environmental aspects to care have
developed to enable an individualised approach to be fos-
tered, incorporating personal aspects that allow for indi-
viduality such as personal belongings. However, while
services have developed in the light of individuality, it
remains an insidious process with not all areas benefiting
equally:
Coming from big wards with clients all together they did not have
personal clothing or personal belongings and may not have had
activities. They have now been given the chance in life to have
some ownership of their lives. They have their, own rooms, own
belongings, own clothes, own routine. They have a say in care-
planning and their families are able to visit them in this nice envi-
ronment but there’re units that don’t have this. (Joan)
Central to the aspect of individuality was individual pro-
gramme plans (IPPs) used across the service in conjunction
with each client’s individual care plan. While care plans
give structure to care through assessment, planning, imple-
mentation and evaluation, the value of IPPs is in ensuring
the individuality of each client and bringing team members
together starting with the client, their family, nurses and
MDT members:
We set goals during the IPP that the client would be able to
achieve, it is invaluable as it brings the people who look after him/
her together, the family, MDT, nurses once in the year and the
client will be there and part-take. (Marie)
While person-centredness is fundamental and desirable, par-
ticipants acknowledged the limitations that exist while
implementing person-centred care, such as client numbers,
and the fact that nurses on their own cannot deliver on
person-centredness without a whole service approach:
We’re only touching the tip of the iceberg in relation to person-cen-
teredness. We do our utmost in choice, in documentation, in family
involvement, but we would need ten times more staff to do what
possibly could be done for each service user to fulfil their dreams,
we do the best we can with person centeredness at the core.
(James)
One participant acknowledged the lack of understanding
about person-centred care as a potential barrier to its
implementation, suggesting the need to adopt a universal
approach across the organisation:
One of the greatest barriers is the lack of understanding of person-
centeredness. People think that the nurses are the only people to be
person-centred but everybody from the maintenance man, cook,
household staff and the team all have to be person-centred. (Ann)
Knowing the person
A central aspect raised during the interviews was the aspect
of knowing the person. This was deemed essential in identi-
fying asymptomatic signs of ill-health, identifying needs and
interpreting non-verbal communication:
Their health is determined by the staff being observant and know-
ing them, because if you have new staff, they’re not going to know
that the outburst they had today is completely different to what
they had a month ago, or the person sitting there doesn’t always sit
that way, if you don’t have familiar staff small things slip through
the net, they don’t get picked up, be they health issues or otherwise
you need familiarity. (Mike)
However, participants identified staff turnover as having a
negative impact on client care was:
I know you have to move, but I think they should consider the
elderly person when they’re moving staff because it can be a loss
and like a depression in a way, it should be done on a gradual
basis and they should always have one or two staff that are solid,
that are permanent, that have been with them and knows them
inside out, because it makes a difference. (Joan)
The aspect of knowing the person as unique and privileged
was acknowledged by participants:
It is a unique, privileged position to be in and I suppose for me
that’s why I stick with this type of nursing, because that’s inherent
in it and I think it’s really because we are RNIDs that we’ll stick
with a thing because we know the client and what’s right for them
and we don’t lose sight of that. (Jackie)
However, the diversity in the range of disabilities and care
situations is vast and varied as people with intellectual dis-
ability may have complex multiple health needs that need
to be addressed from a holistic perspective encapsulating
the bio-psycho-social educational model of care:
You have the spectrum in every area that you go, you get the
whole spectrum from the; client, family, emotional, mental health,
communication issues whereas when you are working in a general
area you’re dealing mainly with physical ailments. (Mary)
© 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 1112–1123 1117
Nurse’s experiences Nurses experience caring for older clients
Best practice
It was acknowledged that best practice is a goal that all
RNIDs strive for and is something that is endless as one
tries to deliver care:
Evidence based practice plays a big role, first of all it safeguards
the nurse but we are the people that are starting the new practice
because we have the older clients, everything has to be evidence-
based especially now with the new format for training students and
for accountability. (Mike)
While best practice is a constant aim, participants feel they
will continue to be guided by experience and then grounded
by education and research literature:
It’s a combination of your academic study on that person, your
professionalism in getting to know that person. But really and truly
it is your day-to-day work, working with that person on a physical,
intellectual and intimate level. (Mary)
It was also articulated that many opportunities exist to cre-
ate best practice and action needs to be taken to capture
these opportunities by engaging in further research on the
care need of the older person with intellectual disability:
The amount of studies in the area are small, it’s an area that needs
looking at and the more it is studied the more use you will get out
of it and we have to start selling our uniqueness and stick to it; we
know the clients better and we shouldn’t just sit back. Nurse man-
agers have to be more proactive, people get bogged down in the
day-to-day work and there’s not enough scope for academia and
not enough opportunities given to nurses to do training. (James)
Discussion
People with intellectual disability are living longer with fac-
tors such as better health care, evidence-based medicine and
environmental factors contributing to their increased longev-
ity (Emerson & Ramcharan 2010). With increased longevity
come additional health needs and multiple chronic condi-
tions, often requiring increased collaborative interventions
(World Health Organisation 2003). While Jenkins et al.
(2006) identify a wide range of professionals involved in the
provision of services, Hickman et al. (2007) recognise fami-
lies know the person best and their involvement results in a
wealth of information that positively influences care provi-
sion. Additionally, the findings of this study reiterate the
positive effects of family involvement in care, emotional
well-being and advocating for services. Therefore, family’s
perspectives should be acknowledged and valued as an inte-
gral and valuable part of care planning. This teamwork
involving family, client and healthcare professionals is essen-
tial in providing quality care, meeting individual needs and
providing a seamless service for the client (Thompson &
Pickering 2001). RNIDs need to support families at home as
family carers play an essential role in care provision, thereby
safeguarding the health and well-being of the family as a
caregiver unit (Jeon 2004). This is essential as families who
have not needed support in the past need considerable help
and input at home as family carers age (Gilbert et al. 2008).
The support of an RNID in the community would assist gen-
eric services who lack the knowledge and experience of car-
ing for people with intellectual disability (Doody et al.
2011). The health of this population can only be improved
by a combination of primary prevention, early detection,
treatment and a willingness for health and disability sectors
to work together to achieve positive health outcomes (Webb
& Stanton 2009). However, for a team to be effective, all
members need to be a valued member, and personal contact
is not enough to facilitate effective working relationships,
rather there needs to be equal status between members
(Jenkins et al. 2006). The RNID is vital in the collaboration
of care and needs to be reflected in attitudes, practices and
partnerships with others, and therefore, continuity of care
and effective teamwork requires more proficient communica-
tion with the RNID adopting a leading role in collaboration
and care planning (Hart 2002, Gates 2006), with service
providers acknowledging the inevitability of an ageing client
group (Bigby 2010a) and not been tempted by short-term,
inexpensive solutions (Proctor 2000).
Successful ageing must be prepared for long in advance;
a happy old age is the criterion and reward of a well-con-
ducted life (Ouwehand et al. 2007). The RNID should
ensure each person has a tailored made health plan that
identifies their health status and risks, based on their indi-
vidual needs, which is updated at regular intervals or transi-
tion points (Department of Health 2001). For this to occur,
RNIDs need to engage the client and their family in design-
ing the health plan and address aspects such as ageing in
place, which considers future plans for care provision and
support (Forbat 2006, Bigby 2010b). This is essential as
older people with intellectual disability remain vulnerable
to premature and often inappropriate admission to residen-
tial aged facilities (Bigby 2010b). Here, the RNID operates
within a person- and family-centred approach, ensuring
they advocate for the needs and desires of the individual
along with empowering the client and family within deci-
sion-making.
Recent literature to define health indicators for people
with intellectual disability includes the Pomona Project in
Europe (Walsh 2008) and the National Core Indicators
(NCI) project in the United States (Bradley & Moseley
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1118 Journal of Clinical Nursing, 22, 1112–1123
C. Doody et al.
2007). Health checks have been recommended internation-
ally, and RNIDs need to ensure health checks are con-
ducted with this vulnerable group. While health checks
from the general population have been used or adapted
such as the Comprehensive Gerontological Assessment
(CGA) and others have been devised for adults with intel-
lectual disability such as the Cardiff checklist (Baxter et al.
2006) and the Comprehensive Health Assessment Program
(CHAP) (Lennox et al. 2004), the RNID continually needs
to consider these in relation to their applicability to the
range of disability and cognitive function of the individual
been assessed. Others such as Ruddick and Oliver (2005)
developed a self-reporting health status measure for people
with intellectual disability, and Fender et al. (2007) devel-
oped a health assessment based on the CHAP to include
self-defined health and consider functional age. However
these tools need further evaluation before assertions of
general applicability can be made.
The mission of the RNID workforce is to meet the needs
of an increasingly diverse population in an ever-changing
healthcare environment, thereby intellectual disability nurs-
ing will always need to redefine and redesign itself to
ensure its practice is meeting the changing needs of individ-
uals and their carers (Department of Health & Children
2002). Gates (2006) suggests this may be achieved through
person-centredness that focuses on what is important for
the person now and for the future and acting upon this in
collaboration with the person’s family and friends. Society
and clients demand high-quality care based on evidence
requiring an urgent development of various strategies for
the implementation of evidence-based practice (EBP),
implying challenges for several key groups including the
RNIDs who have an important task to develop organisa-
tional strategies to realise EBP (Bostrom et al. 2006). As
nurses, the RNID needs to enhance health status, longevity,
functional ability and quality of life of ageing adults with
intellectual disability. This can only be achieved by increas-
ing information resources and staff reading habits, and
despite the noted phenomenon of the ageing population,
old age has only recently been conceptualised as a separate
and distinct life stage for people with intellectual disability.
Thereby, the RNID is often limited to evidence regarding
physical health issues based primarily on generalisations
form clinical and research findings on the general popula-
tion and adults and children with intellectual disability
(Prasher & Janicki 2002). Nevertheless, the RNID can use
evidence from a range of other academic disciplines (Gates
& Atherton 2001, Mitchell 2004), but the benefits of
having a defined body of knowledge in nursing the older
person with intellectual disability include better client care,
enhanced professional status for nurses and guidance for
research and education (Newell & Burnard 2006).
This study highlighted the aspect of individuality as a
core concept of caring. McCormack (2003) emphasises that
the nurse must be able to particularise the person, who that
the person is, the relationship that exists between them and
the client and the understandings and expectations implicit
in the relationship. Turnbull (2004) and Brewster and
Ramcharan (2010) recognise knowing the person as a central
aspect of nursing practice and constitute a unique contribu-
tion to quality client care where clients are recognised and
treated as individuals, which is a strongly held value of the
RNID. Thus, knowing the client evolves from the interrela-
tionship of competent communication and accuracy of
understanding that are crucial and a vital component of
everyday nursing (Finch 2004), which is crucial in predict-
ing a client’s pattern of clinical responses, thereby enabling
nurses to make accurate clinical decisions (Morrison 2011)
and implement nursing interventions in a supportive man-
ner that positively affect client outcomes (Simmons et al.
2003). Individual programme plans play a vital role in care
delivery, and regular evaluation of care is vital to good
practice (Turnbull 2004). Measures of progress can be eval-
uated, which consequently instil a sense of enthusiasm in
families while also revitalising and motivating the nurse.
However, limitations such as environment and staffing have
a significant impact on care delivery despite an intention to
consider client and nursing values (McCormack et al. 2002,
Rycroft-Malone et al. 2002). At a time when nurses stretch
their professional efforts given the nursing shortages and
numerous understaffing issues, it is more significant than
ever that nurses understand the importance of their commu-
nication (Finch 2004). Transformation of practice is not
just a matter of changing individual practitioners alone but
discovering, analysing and transforming the social, cultural
and environmental conditions under which their practice
occurs (Carr & Kemmis 2005,). This study identifies that
best practice was a goal that RNIDs strive for and that
experience and research were facets that complement each
other in that process, also highlighting the need for RNIDs
to value practice and create evidence from the networking
of information with others. Many nursing issues impact on
the quality of care of the older person including nurse’s
attitudes, lack of expertise and lack of nursing education in
older person care (Lewis & Stenfert-Kroese 2010). How-
ever, given the current economic climate/environment, the
non-replacement of staff and staff embargos, it is vital that
we remain focused on the support we provide and the
impact this has on our clients and their families, and
thereby, the RNID has a vital role in developing and
© 2012 Blackwell Publishing Ltd
Journal of Clinical Nursing, 22, 1112–1123 1119
Nurse’s experiences Nurses experience caring for older clients
supporting the older person and publishing their efforts. In
addition, there has been a review of disability services
under the value for money and policy review initiative
2008–2011 in Ireland, and given the current economic
downturn, one may be concerned that such improved out-
comes may not be valued against financial savings (Doody
2012). However, it is clear that ‘one size fits all’ approach
to health and personal care services will not produce the
desired results (National Disability Authority 2010).
Thereby, it will be necessary to develop an approach that
takes into account the differences between groups such as
age, type or degree of disability when planning and deliver-
ing community living systems and practice (National Dis-
ability Authority 2010), thus reinforcing the RNID role in
care provision for the older person.
There is a necessity for active retirement rather than tra-
ditional approaches where, as one ages, they were treated
as vulnerable, non-productive adults requiring care (Llewellyn
et al. 2004), thereby promoting their rights to retire and
lead a more relaxed lifestyle (Bigby 2010a). While loss and
bereavement support is essential, McEvoy et al. (2010)
identify that healthcare professionals may think they have
the skills and resources to support someone who has been
bereaved but in practice find it is an area with which they
are unfamiliar. Services may have to consider referral to
bereavement counselling services where the specialist skills
of trained bereavement counsellors are acknowledged.
Additionally, while understanding the feelings and experi-
ences in coping with loss is dependent on familiarity and
knowing the person, Hollins and Tuffreu-Wijne (2010) rec-
ognise that sensitive and timely support is possible but only
achieved if everyone works closely and actively together
with the individual at the heart of all initiatives. This col-
lective working is vital as people with intellectual disability
may express symptoms behaviourally rather than in words,
and grieving is recognised as lasting up to two years.
Conclusion
Healthcare for older people with intellectual disability
will present enormous challenges for services. To consid-
erably improve clients’ quality of life, services need to
carefully consider a pragmatic view of the issues and
develop realistic, proactive and responsive strategies.
However, this is achievable only if RNIDs are enabled
to take a leadership role and provide direction for new
strategies. Nevertheless, the RNID needs to focus on
breaking down professional boundaries and the issues
involved in collaboration with different agencies, with
the ultimate aim of providing a seamless service that is
needs based. Service philosophies have encouraged people
with intellectual disability to cast off their dependent
state by developing a variety of skills and adopting val-
ued social roles; however, if services fully embrace the
principles, then one would expect this client group to
use ordinary generic services. However, intellectual dis-
ability is a complex condition with many associated
pathologies. Most integrated care initiatives have a dis-
ease-specific approach that may not be directly translat-
able to individuals with multiple needs. Therefore,
generic services will need to be informed, supported and
have access to specialist support to inform these services
of the complex range of health issues in the older person
with intellectual disability.
Relevance to clinical practice
• People with intellectual disability are living longer.
• This research explores the experiences of registered
intellectual disability nurses caring for the older person
with intellectual disability.
• Teamwork and proactive planning is essential as ageing
is inevitable.
• Supporting clients living at home places an onus
and responsibility on services to facilitate home visits.
• Client-centred approaches to care based on best practice
are warranted.
Contributions
Study design: CD, KM; data collection and analysis: CD
and manuscript preparation: CD, KM, OD.
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