The experiences of registered intellectual disability nurses caring for the older person with intellectual disability

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.


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


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:




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.



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)




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



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




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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The experiences of registered intellectual disability nurses caring for the older person with intellectual disability