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A Masterclass in Networking

masterclass
  • Masterclass for staff working in Intellectual Disability
  • The importance of networking
  • Introduction to the recently published Code of Professional Conduct and Ethics
  • Developments of the new Standards and Requirements for Nurse Registration Education Programmes

The Nursing Network of Intellectual Disability (NNIDI) held a Masterclass on the 7th November 2014 in the School of Nursing & Midwifery, Trinity College Dublin.  This was the third national event hosted by NNIDI.  The overarching aim of this group is to promote and support networking among nurses working in the area of intellectual disability in Ireland.  It is hoped that this will advance best practice in the care and provision of services to people with intellectual disabilities.  The membership of NNIDI is open to all nurses working in intellectual disability services in Ireland.  The masterclass was Category 1 approved by NMBI, and attendance was free to those working in the Intellectual Disability field.

nursing logo

The opening address was delivered by Ms. Therese Danaher who was the outgoing Chairperson of NNIDI.  Mr. Paul Keenan, incoming Joint Chairperson gave a presentation on the aims of NNIDI and their plans for the future.  This first session was facilitated by Dr. Ruth Northway, a Professor of Learning Disability Nursing in the University of South Wales; she delivered a very engaging presentation entitled Making Connections to Enhance Professional Practice.  Dr. Northway teaches on a range of undergraduate and post graduate courses – she has research interests in the health needs of people with learning disabilities and in safeguarding people from abuse.  Dr. Northway actively involved the audience in group activity and discussion on how to develop services and strengthen networking amongst nurses.  The aim of this session was to support and empower nurses working in the area of intellectual disability nursing to develop effective network strategies.

masterclass

The second session was facilitated by Ms. Kathleen Walsh, Professional Officer of Standards of Practice and Guidance for the Nursing and Midwifery Board of Ireland (NMBI).  Ms. Walsh’s responsibilities in this role include giving support/advice on professional practice, coordination of the Ethics Committee activities, and development of professional guidance.  In addition, Ms. Walsh is project-managing the dissemination of the new code of professional conduct and ethics, and the revision of the scope of nursing and midwifery practice framework.  Ms. Walsh gave the first insightful presentation on the New Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives.  This was of particular interest to nurses in the audience, as it enables them to have a first-hand operational knowledge of the code of professional conduct and ethics.

The third session was facilitated by Dr. John Sweeney, an independent consultant who is currently undertaking a project with the Nursing and Midwifery Board of Ireland to develop new Standards and Requirements for Nurse Registration Education Programmes (2015).  Dr. Sweeney’s area of expertise includes dual diagnosis of mental health problems among people with an intellectual disability, nursing historiography, visual thinking strategies, curriculum design and evaluation, and inter-professional teaching and learning.  This presentation provided insight into the progress of the BSc. Nursing Curriculum Review, and raised awareness of the revision of the requirements and standards of the undergraduate nurse education programme in Ireland.  The presentation evoked discussions in relation to the potential changes, and the impacts this would have in the area of intellectual disability.  The closing remarks were delivered by Dr. Owen Doody, who is incoming Joint Chair person of NNIDI.

This masterclass provided a forum for consistent and timely communication of relevant information pertaining to nurses working in the area of intellectual disability.  The undergraduate student nurse education programme is constantly evolving, as are policies and procedures relating to students.  The masterclass provided a forum to share this information in a timely and efficient manner.  Preceptors are entrusted with clinical supervision, guidance, teaching and competency assessment of undergraduate student nurses.  Therefore, it is essential that they are aware of the code of professional conduct and ethics, and how this impacts in practice, in the area of intellectual disability.  This masterclass was also beneficial for clinical/practice nurses, as it acknowledged the important role of the nurse in clinical practice and education, and the importance of networking within the profession.

The feedback from participants was that the masterclass was very beneficial; it provided a forum for networking with staff from other organisations, it enhanced knowledge in relation to the New Code of Professional Conduct and Ethics for Registered Nurses and Registered Midwives, and the implication this will have in and on practice.  Participants also highlighted how beneficial it is to gain insight into the developments in the undergraduate curriculum and standards for practice placements.

Should you wish to view the presentations from the day or join the mailing group of NNIDI please go to www.nnidi.com

Author Bio

Karina O Sullivan is a committee member of NNIDI, and she currently works as a clinical placement co-ordinator within the Daughters of Charity Disability Support service in Dublin.

Catherine Timoney is a committee member of NNIDI – she has worked as a nurse in the Intellectual Disability field for over 30 years.

Jeanette McCallion welcomes movement towards a community-based social care model, but cautions that complex medical needs among people with intellectual disability still require medical services, previously provided in congregated settings, to be maintained and improved in this environment.

Jeanette and Cliona
  • The RTE documentary on Áras Attracta was very difficult for anyone to watch, but especially when you have a close family member with ID.
  • The only good thing to come out of the footage is that it started to make people take more notice of the care given to people with ID.
  • There is lots of discussion about change, and closing down centres such as Aras Attracta to set up more homes in the community for people with ID.
  • I am in favour of this in general, but the ‘one size fits all’ approach will not work for everyone.
  • Unfortunately my sister has such severe seizures that she needs a nurse with her at all times.
  • Because the centres are no longer taking in new people, and without there being special nursing care houses in the community, she is without a service.
  • I hope that this will soon be noticed and those who need medical care get the services they need.

In December last I watched RTE’s Primetime Investigates on Áras Attracta, Bungalow 3.  Knowing in advance that the footage would be bad, I debated with myself whether I should make myself watch it or not.  The main reason for my unease is that my seventeen year old sister Cliona has profound ID as well as an extreme epilepsy syndrome that no seizure drug has ever been able to influence.   At some stage in the future Cliona will be in full-time residential care.  In fact, suitable full-time residential care within a local service not unlike Áras Attracta is our ‘holy grail’, something that we have been relentlessly pursuing for Cliona over the last few years.

Watching the documentary was particularly painful for me. I could not believe the brutal force and complete lack of respect I was seeing.  All I kept thinking was ‘this could be Cliona’.  I felt nauseous, and so, so angry.  The abuse so clearly highlighted in the footage cannot be blamed on cutbacks or staff shortages.   I watched staff members idly sit around texting on their phones and watching television, amidst sickening displays of cruelty, violence, and taunting of elderly women with profound ID.  I could not stop thinking about it afterwards.  As the media storm took over the following day, I wondered what sort of a country we live in to provide ‘services’ like these to our most vulnerable?  I was embarrassed to have trained in a health system where this kind of inhumane treatment could happen.  There followed lots of discussion by government ministers on whether this sort of abuse ‘could’ be happening elsewhere.  How could anyone be so sanguine as to believe that this happened only in one particular house, in one particular centre, in one particular county?  I think the entire country was ashamed and appalled.  But when you face a future where your most loved family member will one day depend on the care provided by this state, this footage takes on a whole new dimension.

I was heartened though, by the amount of noise and public outrage that ensued following the documentary.  At least there was talk about the state of ID services in this country.  Intellectual Disability is usually an area that struggles to attract media coverage and has not the same appeal as other areas for grabbing the public’s attention.  Unlike cancer it is always there, consumes lots of money, and will never be ‘cured’.  Cynics would also say that people with ID are low priority when it comes to funding, as they are a group of our population that cannot assert themselves through our democratic system.  Even within medical training, the area of ID is hugely neglected.  Although I trained as a general practitioner, over my many years studying and training on the job I did not get any specific training in this important, challenging and complex area that needs well-trained and interested doctors.  There should be specific training for doctors for some of the challenges that arise in looking after the complex needs of people with ID.

Another positive that arose from the awfulness of Áras Attracta was that it prompted me to attend the Inclusion Ireland AGM in April for the first time.  Up until then my entire focus was helping with the care of my sister, advocating for services for her, and not really contributing to the collective cause.  I now realise that I need to voice some of the difficulties and challenges we are facing with Cliona on a bigger stage, as I know that we are not the only family going through this.  I believe that families are so consumed with coming to terms with their child’s or sibling’s disability, as well as navigating the disability services, fighting cutbacks and knocking on closed doors, that they have no time or energy left to try to raise the issues on a more collective level.  I think it is especially important at the present time to become involved in advocacy for ID, as there seems to be movement towards changing the way care is provided.  And no-one can argue that change is not needed…  However, change needs to be carefully considered, and needs to remember everyone with ID, those with mild to profound ID as well as those with complex medical needs like my sister.

One term that I have become very familiar with in recent times is ‘decongregated settings’, which I understand to mean that new admissions to congregated-type centres will no longer happen, and that the current centres will be replaced by a community-based social care model.  The 2011 HSE policy ‘Time to Move on from Congregated Settings – A strategy for Community Inclusion’ outlines the detail of this plan.  I have read this report with great interest and I can see that there is good evidence from other countries to support this approach.  I clearly see that many people with ID could be better served if more closely integrated into the community.  However, the closed doors of the current congregated services have not been replaced by equivalent services in the community.  Furthermore, for those like my sister with complex epilepsy, or other medical needs there appears to be no discussion on how medical/nurse-led care will be provided in the community.

Currently Cliona is being cared for in the family home, with agency care staff paid for by the HSE through a private organisation, as there is no community nurse care available to her.  Because of limitations in the scope of the social care model around medication and seizure management, we as Cliona’s family have to be heavily involved.  My parents are in effect the house managers, and fill the gaps where a staff member cannot show up.  Each time new staff comes to the house, my parents try to train the carer on the complexities of caring for Cliona, and the different types of patterns she goes through.  The care-staff are wonderfully caring, and really seem to enjoy caring for Cliona, but often speak of how medically complex she is and question why she has not a nurse present with her.  They have had to manage some very severe and distressing tonic clonic seizures to the best of their ability.

What would I like for my sister?  Sadly Cliona’s seizures will never be cured, short of some miracle treatment for her unique type of epilepsy being developed.  I would like her to be accepted by a specialist ID service, either in a congregated centre with nursing care or in a nurse-led community house.  I am very concerned that the small percentage of people with ID who, like Cliona, also have complex medical needs, are being forgotten in the well-intentioned move to ‘Decongregated settings’.  Let’s not forget the minority within the minority; those with ID who also need clinical support for their complex medical needs.

Author Bio

Jeanette McCallionJeanette McCallion is older sister to Cliona, who is 17 years old and has a rare serious epilepsy syndrome with profound ID. She lives in Dublin not far from her parents and Cliona. Jeanette trained as a GP following her medical degree at Trinity College, and spent several years working in the Dublin hospitals and various GP practices around Dublin and Kildare. She is currently working in the area of Pharmaceutical Medicine. 

  • This article is for nurses working with people who have an intellectual disability.
  • It tells nurses that each person with an intellectual disability should have a care plan.
  • A care plan tells the nurse how the person with an intellectual disability would like to have their needs met.
  • The article gives the nurse five (5) ways to plan care with the person with an intellectual disability.
  • It looks at the good and not-so-good parts of each way.

Registered Intellectual Disability Nurses (RNID’s) are unique, being the only group of professionals who are educated solely to work with people with an intellectual disability (ID) (Northway et al 2006).  This specialised education is only available in Ireland and the UK.  RNIDs work in a wide range of settings, and have a diversity of roles and skills (one of which is care planning) in addressing  the needs of the person with an ID.  Good nursing practice dictates that the best available evidence should underpin healthcare decision making.  Whether working individually, or as part of a wider interdisciplinary team, all care provided by the nurse should be guided by a care plan.  Care planning is an ongoing process of working with the individual, involving assessment, planning, implementation and evaluation of the individual’s needs, culminating in a written care plan that documents the individual’s specific needs and how those are to be addressed.  Devising a care plan can be a complex process; therefore using a framework of care for guidance can make care planning more achievable.

As there are multiplicities of frameworks of care available, selecting the most appropriate one for the individual can be an onerous task.  This can be further complicated by the variety of practice settings within which intellectual disability nursing takes place, and the current needs of the individual e.g. health, social, educational and/or a combination of needs.  RNIDs need to understand the components of the various frameworks, and be able to justify the selection of the most appropriate framework to guide the development of the individuals care plan.  The components of a good framework of care should be specific to addressing the person’s individual needs, informed by evidence and seen as a continuous process of discussion, observation, planning, implementation and evaluation.  This paper presents a brief overview of the ideology underpinning five such framework approaches that the nurse can draw upon, along with some of the more common advantages and disadvantages associated with each one (Table 1).

Medical Model

The use of the medical model approach can be traced back to Hippocrates, Aristotle and Galen and has guided medicine and nursing across the centuries.  Since Nightingale’s era, the nursing profession has adopted an assessment, diagnosis, prescription and treatment model of care (McKenna and Slevin 2008).  Unfortunately, this diagnosis-orientated approach does not allow for independent thinking or holistic care within nursing.

Biomedical Model

This model is connected with scientific rigour and objectivity, and linked with well-established areas of science and medicine (Bickenbach 1993).  Using this model, disability can be classified, quantified and measured or rated (Smart 2009).  It is also linked with fragmenting the disability community, identifying individuals by their diagnosis e.g. the deaf, the blind.  Labelling the person with ID using the biomedical model legitimises disability as the individual is diagnosed as biologically inferior, thereby increasing the chance of stigma and prejudice (Smart 2009).  It is linked with routinisation of care (Pearson et al 2005) and should be questioned and challenged for its failure to address the social, physical and human barriers to disability or economic, political or social issues.

Bio-Psycho-Social Model

The biopsychosocial model of health and illness adopts a holistic view of health.  It combines biological, psychological and social factors, acknowledging that all play a significant role in human functioning in the context of disease or illness (Smeltzer 2007).  This framework views disability as arising from a combination of factors at the physical, emotional and environmental levels.  This approach takes the focus beyond the individual and addresses issues that when combined, affect the ability of the individual to maintain as high a level of health and wellbeing as possible, and to function within society.  Recognising that disabilities are often due to illness or injury, it does not dismiss the importance of the impact of biological, emotional and environmental issues on health, well-being, and function in society.  The disabling condition, rather than the person and the experience of the person with a disability, is the defining construct of the biopsychosocial model.

Nursing Model

In an attempt to move away from the medical model of care, nursing models were developed in the 1960s and are described as frames of reference, providing guidelines which facilitate the nursing process (assessing, planning, implementing and evaluating nursing care) and enhance the quality of care (Fawcett et al 1992). There are numerous models of nursing available, each representing a distinct way of thinking about and guiding nursing practice (Murphy et al 2010).

Roper, Logan and Tierney Model of Nursing

Developed in the 1970s, the Roper, Logan and Tierney model of nursing is based on a model of living which views the person as an active participant in the development of their nursing care. It focuses on identifying the person’s actual and potential problems in 12 activities of living (ALs). It takes into account the biological, psychological, sociocultural, environmental and politico-economic factors that influence the person’s ALs, and the lifespan or stage of development of the person. Also, the inclusion of a dependence/independence continuum acknowledges the person’s changing health status during illness. These four components culminate in the development of an individualised nursing care plan framed by the nursing process (Tierney 1998). This is the most widely used nursing model in ID settings.

Ecology of Health Model

In response to practitioners’ desire for a specialist model of nursing, the ecology of health model was developed in order to specifically address the healthcare needs of the person with intellectual disabilities (Aldridge 2004). The person is seen as having physical and psychological elements that form the self and which exist within a social environment. The person relates to their environment through a process of interaction, thus forming an ecological system. Underpinning this model is the idea that all care plans are person-centred, structured and purposeful. The model allows for contributions from the individual and also reflects what is important to the person in their life, in turn promoting person-centeredness. Its implementation in ID settings, with its holistic approach, deems it influential in ID practice (Barr 2005).

Social Model

The Social model approach is the antithesis of the medical model; it emerged as a reaction to the dominance of the medical model from the analysis of the experiences of institutionalised disabled persons (Scullion 2010). Within this approach, the emphasis is not on the person’s disability but on the way in which physical, social, and/or cultural environments disadvantage or exclude people with disabilities.

Social Model of Disability

This model developed in the mid-1970s, relating to people with physical and sensory impairments. It  differentiates between impairment (i.e. loss of function of the body) and disability (i.e. meaning society attaches to the presence of impairment) (Chappell et al 2001). Disability is viewed as a consequence of society’s lack of awareness and concern about those persons who may require modifications in order to lead full lives. This model sees staff delivering care within the home, with involvement in decision making and care planning by the person and his/her family. The notion of addressing rights and equality is to the forefront of this model, with nursing interventions focused on increasing social inclusion by reducing or eliminating barriers to good health (Northway et al 2006).

Person-Centred Planning

Person-centred planning (PCP) is identified as one of the key points for the delivery and development of services for persons with disabilities. Underpinned by core values, and the central tenet being putting the person first (Valuing People 2001, National Disability Authority (NDA) 2005), it acknowledges that care begins with the individual and focuses on what the person and the family think is important for the person, as opposed to what the healthcare professional considers to be necessary for the person (NDA 2005).

Personal Outcomes Measures (POMs)

Quality of Life measures are used to assess the impact of service initiatives on the lives of people with ID and to guide programme delivery (McCormack and Farrell 2009). POM’s place emphasis on quality assurance and quality improvements within services to support person-centred development (Gardner and Carran 2005). The move away from congregated settings towards community settings was the impetus for the development of these measures to assess quality.

Person-centred nursing framework

The person-centred nursing framework (McCormack and McCance 2006) contains four constructs focusing on the professional competence of the nurse, i.e. the nurse’s knowledge, decision making, prioritising and delivery of care. The care environment addresses the context within which care will be delivered. The person-centred process focuses on engaging with the individual, acknowledging their beliefs and values and facilitating shared decision making and the delivery of physical care by a competent nurse. The outcome construct addresses the expected results from the person-centred planning.

Eclectic approach

An eclectic model of care is one that combines elements from different frameworks that include a reflective, person-centred, evidence-based and outcome-focused approach to care, and above all ensure best practice for the individual. McKenna (2009) suggests that each nursing framework is limited by the vision of its creator and no one framework can deal with all eventualities. Any combination of frameworks may be used with the key aspects of concepts incorporated to achieve a new or differing nursing framework.

Eclectic modelof care

Moulster et al (2012) developed an eclectic model of reflective and evidence-based person-centred care for use with individuals with ID, amalgamating elements from Roper, Logan and Tierney (Roper et al 2000), the Tidal Model (Barker 2001), Orem’s Self Care Model (2001), Ecology of Health Model (Aldridge 2004) and Person-Centred Nursing Model (McCormack and McCance 2006). This model has been shown to improve clinical governance, makes outcomes easier to measure, and the effectiveness and/or ineffectiveness of the outcomes easier to identify.

Discussion

Frameworks of care in practice guide the assessment, planning, implementation and evaluation of care and support in practice, in turn developing and maintaining consistency in how care is delivered.  RNIDs have a duty to underpin their practice with evidence-based frameworks of care.  These frameworks all contain concepts capable of being researched and research evidence underpins practice, therefore the adoption of frameworks is an important factor in developing evidence-based effective nursing practice.  They are also useful in nurse education as tools to identify what nursing is, who the recipients of care are and what skills and knowledge RNIDs  should possess in order to be fit for practice.  The provision of high quality, safe nursing care is central to nursing practice – thus, care delivered through a framed knowledge base is more likely to be of a high standard (Cutliffe et al 2010).

What is evident is that no one framework can reflect all of the needs of a person with ID, and therefore diversity in frameworks will allow individual models build upon each other. Individuals’ needs change according to the stage of their lives, or their physical, mental and social health status, and so the nurse must be skilled in selecting the most appropriate framework, most suited to address the person’s current needs. This may involve combining a number of elements from various different frameworks. Cross-modelling can be strengthening and enriching (Walkup 2000), and nurses with increased awareness of a variety of frameworks and their strengths and weaknesses, can make informed judgements on which particular framework suits the individual and the practice setting. Each framework is capable of adaptation; therefore RNIDs need to be cognisant of the potential to refine or modify a chosen framework.

While the authors have provided an overview of various frameworks that can be used with persons with ID, there are numerous others that can be adapted for use in a variety of health and social care settings. For example, Peplau’s model has been used to frame care delivered to children with ID in the community (Doyle and Buckley 2012), and Barkers’ (2001) tidal model has been adopted to support persons with ID who also have mental health difficulties.

Conclusion

This paper has provided an overview of five framework approaches used with persons with ID in planning care. Key advantages and disadvantages of those reviewed have been identified. The decision to use a specific framework approach with persons with ID should be well-informed, and its components should be fit for purpose, meeting the needs of the person with ID.  Frameworks of care represent an important and integral part of intellectual disability nursing practice, and are powerful in meeting the needs of the person with ID in the 21st century.

Table 1: Advantages & Disadvantages of Framework Approaches

table


References available from authors on request
 

Author Bio

Sandra Fleming and Carmel Doyle are Assistant Professors at the School of Nursing and Midwifery, Trinity College Dublin.

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by Sheelagh Wickham, School of Nursing, Dublin City University,

This article explores the roles of the clinical nurse specialists (CNS) in one setting in Ireland, namely intellectual disability nursing. In 1998 the Report of the Commission on Nursing: A blueprint for the future recommended the establishment of the National Council for the Professional Development of Nursing and Midwifery (NCNM). It also recognised the need to ‘promote intellectual disability nursing as a career’ (Government of Ireland 1998, 172). The establishment of the NCNM and the issuing, by the Council, of the definition for clinical nurse specialism, allowed the development of the specialist nurse in Ireland to formally begin, particularly in the area of intellectual disability nursing. Since then a number of nurses working in the area of intellectual disability have been recognised as clinical nurse specialists (CNS) by the NCNM.

Following the establishment of the National Council for the Professional Development of Nursing and Midwifery and the issuing of a clear definition for clinical nurse specialist, a report was commissioned to explore the clinical nurse specialist and advanced practice in intellectual disability nursing. The report, Proposed framework for the development of clinical specialism and advanced practice in intellectual disability nursing, was published in 2002. It identified clear pathways for the clinical nurse specialist in the intellectual disability area. This report further aided the development of specialist nursing in intellectual disability by its publication.

The report’s clear recommendations included specific suggestions relating to education, but also advice that the ‘clinical career pathway for intellectual disability nursing be incorporated into all seven broad bands of nursing and midwifery recognised by the Report of the Commission on Nursing 1998’ (DoHC, 2002). The bands suggested by the Commission, transverse all nursing disciplines and included such areas as high dependency, community, rehabilitation etc—all areas where clients with intellectual disability may be found at different times as they move along the healthcare continuum. It continues echoing the Commission report in listing themes or areas of practice where the clinical nurse specialist in intellectual disability could specialise. It was a long but not exhaustive list and, similar to the Commission, it included such areas as sensory development, assistive technology, health promotion, care of the elderly person etc. Clinical career pathways were suggested in these practice areas as the report highlights that the work of the clinical nurse specialist in intellectual disability is varied and incorporates such roles as educator, clinical leader, consultant and researcher (DoHC, 2002).

The 2002 report went on to state ‘the value and contribution of specialist roles to client care should not be underestimated…. Clinical nurse specialists are ideally positioned to provide specialist direct care services to clients and their families. These clinical specialists are in a position to proactively respond to client needs and identify current and future service requirements’ (DHC, 2002, 21). This clear recognition of the possible benefits for the clients gives added incentive and encouragement for nurses working at this specialist level in intellectual disability.

The potential benefits were further recognised and clearly outlined in the report by the Eastern Regional Health Authority. It stated, ‘The development of the clinical focus of the role of the nurse in a specific area of practice along with the integration of nursing research and audit in intellectual disability nursing services and the provision of a clinical career pathway will assist in Intellectual Disability Services significantly increasing treatment options and quality of care’ (Eastern Regional Health Authority, 2002, 32). The development of these varied posts in intellectual disability clinical nurse specialism were seen as likely to aid and assist intellectual disability clients where clearly the potential benefits for the clients is recognised.

The NCNM has worked to develop clinical nurse specialism in intellectual disability nursing. In the Council’s study exploring the effectiveness of the clinical nurse specialist, it noted that the establishment of further clinical nurse specialist posts within intellectual disability services is highly desirable. At that time there was 105 recognised clinical nurse specialists intellectual disability posts (NCNM, 2004, 46). In March 2006 there were a total of 116 clinical nurse specialists in intellectual disability recognised by the NCNM (see Table 2). They are spread over the various Health Service Executive areas, but are predominately based in the Eastern Region, with the second largest number in the Southern region. These figures show an increase of 11.5% from the 2004 figures, with the number growing.

The various reports mentioned identified areas of practice in which the clinical nurse specialist in intellectual disability nursing may be active, but they did not explore the roles or competencies which have been outlined by the NCNM as:

  • Clinical Focus
  • Patient/Client Advocate
  • Education and Training
  • Audit and Research and
  • Consultant.

As the NCNM states, these individual competencies ‘are shared by all nurses who practise at specialist level’ (NCNM, 2004a, 10). The activities of the clinical nurse specialist in these individual roles have rarely been explored. A small study in 2005 in the Irish healthcare setting has attempted to do this and the study results raised issues in research, education of colleagues and education of clients and families.

The NCNM definition gives clear guidelines for research. ‘The specialist nurse or midwife will participate in nursing research and audit’ (NCNM, 2004a). The identification of this role is further echoed in the study of Hurlimann et al. (2001) which examined clinical nurse specialist roles and clearly identified ‘researcher’ as very much part of the clinical nurse specialist’s work. When questioned about conducting research related to the specialist area and/or other areas of nursing practice, the responses showed a variety of activity, with only 13% on average involved in research. Clearly this appears to be an area where the clinical nurse specialist is not very active and further investigation is warranted to explore this issue.

Education of colleagues is considered a key role of the clinical nurse specialist’s work. Reid-Priest (1989) describes education as a ‘traditional part’ of the role. The clinical nurse specialist educates at a number of levels: patients, staff, family/carers and student nurses. Miller (1995) sees the need for the educator component as ‘immense’ and Henderson (2004) concurs and points out that clinical nurse specialists will also need to educate others about their specialist role as well as education relating to their specialist area of practice. It is clearly an area where the clinical nurse specialists are very active.

Working with clients and families has always been a key part of intellectual disability nursing. This continues as the nurse specialises and advances practice. However, activity in this area is varied considering the many diverse care settings and distinct abilities of the clients with intellectual disability.

The role of the CNS is growing in importance. There are some clear roles identified for the nurse who advances or wishes to advance along this clinical career pathway in intellectual disability nursing. Humphries (1999) believes that clinical nurse specialists have the potential to have a major impact on the future development of healthcare. A clinical nurse specialist in intellectual disability care needs to be active in many roles.

This study explored the roles of clinical nurse specialists (CNS) in one setting in Ireland. The study is limited in size and location. The fact that it was not carried out in a specific area of intellectual disability care restricts its findings, but highlights some interesting factors, such as the active role of the CNS in education, and the limited evidence of a research role. The study demonstrates room for further exploration in this area.

A larger study of the total population of all clinical nurse specialists in Ireland is currently being carried out. Questionnaires have already been distributed to all clinical nurse specialists on the NCNM register. Following this, it should be possible to specifically report findings relating to the active roles of the clinical nurse specialists in intellectual disability. It is hoped the findings from the bigger study can contribute to the future growth and development of the clinical nurse specialist’s role, particularly in the area of intellectual disability where there are an increasing number of nurses following this career pathway

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by E. Hartnett, P. Gallagher, Dublin City University

This article is an overview of a research study carried out in completion of a Masters of Science Degree, Disabilities Studies, in University College Dublin (2004). To begin with, the term ‘social model of disability’ is clarified. This is followed by background information and methods employed for the study. Finally the study results are discussed.

The National Disability Authority (2004), a body which plays a vital role in monitoring quality and standards in disability service provision in Ireland, emphasises that it is committed to a social model of disability. The National Disability Authority (2002, p.7) describes this social model as one which:
places a person’s impairment in the context of the social and environmental factors which create disabling barriers to their participation in society. This contrasts with more medical and individual concepts of disability which equate a person’s impairment with their disability, without placing it in context. For example, employing the social model of disability would mean that a wheelchair user cannot get in to a building because of the planning and design of the building or the attitudes of the owner, rather than being unable to climb steps.

It is exclusion from society, as opposed to an impairment, that disables the person according to the social model (Richardson, 2000). Many changes took place in Irish disability legislation and policy in the 1990s that were consistent with the social model. During that decade people with disabilities in Ireland challenged the medical model with its perception of people with disabilities as objects of pity in need of handouts and charity from the state. Society was being challenged to take responsibility for the role it plays in oppressing people with disabilities. The social model advocates society addressing these responsibilities. It also advocates challenging the fact that, traditionally, professionals held much control over the lives of people with disabilities. Northway (1997) highlights the importance of professionals being aware of the social model and of the potential that professionals have to oppress people with disabilities.

STUDY SAMPLE PARTICIPANTS STAFFING GRADE

Participants organisation Staff nurseCNM1**CNM2Other
Religious (no nursing school)X
Voluntary (no nursing school)XXX
Health board (no nursing school)X
Health Board (with nursing school)X
Diploma student nurseX
Nurse lecturerX
An Bord AltranaisX
Department of HealthX
National Council*X
*National Council for the Professional Development of Nursing and Midwifery
** CNM1= Clinical Nurse Manager level one.
Note: Eleven 11 Xs are shown in this grid because one participant fitted into two categories, the details of this overlap have not been included to preserve the anonymity of the participant.

Registered Intellectual Disability Nurses (RNID) are a group of Irish professionals involved in the provision of services to people with an intellectual disability. A review of the literature revealed a scarcity of information in relation to the role that the social model plays in Irish intellectual disability nursing. This study aimed to shed some light on this research gap. The stated aim of the study was to explore the role of the social model of disability in Irish intellectual disability nursing from the nursing perspective. The objectives were to explore:

  • Awareness and use of the social model.
  • How the social model could enhance Irish intellectual disability nursing.
  • Limitations of the social model for Irish intellectual disability nursing.

The sample included ten RNIDs working on the frontline, in management, in education, with the Department of Health, with An Bord Altranais and with the National Council for the Professional Development of Nursing and Midwifery. Frontline and management participants were working in organisations run by religious orders, voluntary bodies and health boards. Table One illustrates the sample participants. In order to gain a deep understanding of each participant’s perspective on the study’s focus of inquiry, in-depth interviewing was employed. Data were analysed using Glaser and Strauss’s (1967) constant comparative analysis.

In relation to the first objective, the results revealed that although the term ‘the social model’ was not one that the majority of participants used, evidence of aspects of the social model were very apparent from participants’ descriptions of their work practices and outlook in disability. Participants emphasised upholding the rights of people with intellectual disability and treating adults with intellectual disability as adults and not children. Participants also emphasised considering the person before their impairment and changing environments to fit the person instead of expecting the person to fit the environment. Participants emphasised that RNIDs look at health in a holistic way and promote well-being and ability in all dimensions of the person’s life. This description of meeting health needs would appear to have much in common with the social model and its focus on ability and opportunity, as opposed to impairment and dependency, as associated with the medical model of disability.

Participants described the following limitations of the social model for intellectual disability nursing. This model may conflict with service providers’ philosophy; the nurse’s duty to care may limit the amount of service user empowerment they can promote in certain situations; adhering to a contract of employment may mean the nurse cannot truly advocate for the service user. Two participants described the social model as being unrealistic and ignoring the reality of impairment.

Despite these limitations, participants also spoke of how the social model could contribute to intellectual disability nursing. These contributions included promoting self worth and sense of identity for people with an intellectual disability, promoting inclusion and disability awareness, an opportunity to improve on how services were delivered in the past, and providing a bigger and better picture than within the limits of the medical model.

Role confusion was an issue spoken of by study participants. Commitment to the social model or aspects of this model could support Irish intellectual disability nursing in clarifying the role of the RNID by offering a clear language, underlying values and principles and a network of support that accompanies the social model. Through networking with the organisations that are committed to the social model (including the National Disability Authority), RNIDs could contribute to sharing resources, experience and knowledge, promoting quality service provision with an emphasis on what service users want.

From this study it would appear that the social model has much to offer Irish intellectual disability nursing and further research on a larger scale could contribute valuable information in relation to this focus of inquiry.

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by Evelyn Reilly, RNID, Clinical Nurse Specialist in dementia care, Daughters of Charity Services, Dublin.

With improved social conditions, improved access to health care and advances in medical care, the life expectancy of people with intellectual disabilities (ID) has increased dramatically over the past number of years. Caring for this population involves two key areas: medical management and care planning. Contact between these two areas should be routine and ongoing, depending on the individual’s needs.

Medical management will involve systematic treatment of all treatable medical conditions, such as epilepsy, sensory impairment or hypothyroidism. Treatment of these conditions should be as thorough as it is in the generic population. Co-morbid (accompanying) mental disorders (such as depression) should be treated appropriately. In particular, the treatment should be tailored to a clearly established diagnosis, rather than to vague behavioural symptoms, such as aggression. The use of neuoroleptic medications for behavioural control should be limited to acute situations, and should be replaced whenever possible by appropriate behavioural, cognitive and environmental interventions. Indeed, the use of neuroleptic medication for clients with dementia can carry the risk of significant side effects and can more often be seen as a form of chemical restraint.

A comprehensive care plan with careful direction and supervision is essential when there is an overwhelming loss of personal care skills and mobility during the last stages of the disease. Ultimately, offering a specifically designed person-centred approach to care is crucial when working with people with ID and Alzheimer’s disease. The individual may no longer be able to sit up, to walk, chew or swallow food, or control bladder or bowel. Added to these losses of function and general unresponsiveness, the person may develop the onset of epilepsy and is at a greater risk of infection. Given the total loss of body functions, the medical care team are responsible for deterring infections and promoting optimum quality of life. Care planning is as much an integral part of the wider process of providing dementia care as it is a feature in its own right.

Challenges of care planning in dementia care

The label of dementia tends to prompt very negative stereotyped responses and consequently care plans tend to be viewed in terms of risk, dependency and disability. The low expectations of staff and carers, and the assumption that people with dementia cannot do much, leads to an enforced reliance and dependence on support.

Care planning calls for documenting and carrying out a treatment strategy appropriate to each stage of the disease. The general principles of care should include:

  1. Helping the individual to preserve and maximise function
  2. Using interventions and supports that are appropriate to the stage of the disease
  3. Conducting care planning that is multidisciplinary and involves information from multiple sources.

It is important to enable people with dementia to retain skills, strengths, preferences and relationships. Family, friends and staff are integral to the overall care management plan. They should be used as genuine supports and encouraged to gain a better understanding of the nature and course of the disease. A balance should be maintained between providing supports that compensate for the loss of skills and encouraging the individual to perform activities that may preserve function. As the disease progresses, treatment practices need to be modified to meet the changing needs of the individual.

Care plans are essential for accurate record keeping and facilitate good communication, so that all members of the direct care team are singing from the same hymn sheet. They provide a framework for describing, defining and possibly quantifying a problem to ensure a common understanding amongst the professionals and carers who use them. They suggest strategies to address problems that arise. They provide consistency and continuity in care, and they give direction and help to set goals for the future. Overall, a comprehensive care plan will promote the best quality of life for the individual.

Care management involves structural activities such as making referrals for appropriate services, making environmental modifications, changing the general plan of care according to identified sustainable abilities of the individual. It involves individualised applications of clinical strategies to address problem management and carer concerns. The care plan is crucial in this step as it helps identify changes and personal care needs. It should be reviewed and evaluated regularly and modified to suit changing circumstances. Indeed, as the stages of the disease progress the needs of the person changes dramatically, as should the care plan and care management.

Once the suspicion of dementia has been clinically confirmed, the individual’s family or carers need to made aware that changes need to be made in daily routine and the environment so that the person can feel safe and secure in his or her home/service setting. What may have been comfortable and appealing for the person in the past may be now unrecognisable, and consequently result in unpredictable behaviour. While the individual continues to remain mobile, their judgment may be decreasing, and he or she may be at risk of falling or wandering off. Under these circumstances, some of the person’s responsibilities may need to be reviewed and modified.

Important issues for the individual with dementia
  • Improve physical well-being (mobility)
  • Improve psychological well-being
  • Maintain social functioning (ability to communicate)
  • Maintain levels of independence (self-care)
  • Ensure safety.
Important issues for the carers
  • Improve psychological well-being (stress, emotional burden)
  • Improve knowledge skills (education, information)
  • Improve satisfaction (support/coordination of services).
Assessment of need

It is well documented that the client with dementia must be involved in their own overall care, but with the progression of the disease there is a steady deterioration in memory and the ability to communicate—often the individual cannot articulate their needs anymore. A comprehensive assessment of needs is crucial. This may be assessed under the following headings:

Neurological impairment

Diminishing cognitive impairment, from a day-to-day care perspective, is a factor that must be accepted and worked with. Good medical diagnosis and ongoing monitoring are essential. In isolation, however, these are not sufficient for good care and practice.

Physical health

With increasing difficulty in communication this population are at increased risk of having their physical needs overlooked. Pain is an important issue affecting quality of life and an important goal in the care plan process for people with ID. It is estimated the one-third of those with dementia are in constant pain and more than half suffer severe pain. This population are less likely to report pain, therefore influencing the effectiveness of pain management strategies. Simple needs are also at risk (such as inadequate fluid intake,

Constipation, agitation) all of which can influence behavioural episodes. If the physical problems of people with dementia are mismanaged, the physical factors exacerbate the symptoms of dementia.

Biography

All lives are shaped by background history and critical incidents in the past. Being aware of some of the losses and stresses experienced by people with dementia over their lifetime can be hugely beneficial. Collecting and sharing knowledge is critical for these individuals.

Personality

The personality of the individual has developed over his/her lifetime and is reflected in how that person reacts to stress. This will impact on how they deal with the experience of increasing loss of self and identity. As carers we must learn as much about these matters as possible to help us understand individual responses.

Social environment

The dynamics created by individual interactive styles can make a person feel valued or devalued. It is important to consider what people say and do, and how they say and do it have direct effects on the emotional well being of others. Therefore the social environment can support or undermine a person’s sense of personal value.

Personal and sensory environment

People respond to information from the physical environment by adapting their behaviour. This response is based on prior learning and recognition of the cues around them. For people with dementia the physical environment can be enabling or disabling, and it must be considered that dementia care is not about care of the dying; it is about meaningful life for the living. The sensory environment can be a powerful initiator of positive and negative behavioural responses and have a significant effect on the signs and symptoms of dementia. It is important to create a world within which people with ID and dementia can find comfort and pleasure, express their individuality, and rediscover human connection.

Care plan content

The values and beliefs we hold have a profound effect on the way we think and behave. The mark of a good care plan is not that it is ‘correct’, but that it likely to lead to a better life for the individual. The following details should be in place for those with ID and dementia:

  • Personal details
  • Social information
  • Preferences about food and daily life.
  • The role of relatives and friends
  • Health record
  • Risk assessment for safety
  • Manual handling and pressure sores
  • Extent of confusion/challenging behaviour.
  • Medication and medical treatment
  • Any nursing care
  • Self-care ability
  • Help required
  • Preferences about future care
  • Religious/spiritual and cultural background.
  • Advance directives—wishes about death and dying.
  • Who is responsible for implementation (key worker)
  • When it needs to be evaluated.

The following key elements should exist in the plan:

  • Each care goal.
  • How and when the goal is to be attained
  • What strategies are to be tried
  • Who is responsible for implementing each strategy
  • When it needs to be evaluated

The care plan will provide a rounded picture of the client’s self-help abilities, the aims of the individual plan, the essential ongoing care and level of support required, the outline of the usual daily routine and the client’s own goals for the future.

Care plan meetings

These should be held every six months, or more often if necessary. The progression of the disease can often be rapid and the care plan will need to be regularly modified to accommodate ongoing changing needs. It is important that all people involved in the persons life is involved in the planning process. Unit staff, key worker, nursing staff, family members, the MDT, day services and, of course, the individual who presents with dementia. The members of the team must prioritise and set goals and needs for the individual.

Conclusion

Implementing the principles of the person-centred approach to dementia care is a powerful way to raise staff awareness of the needs of people with dementia. The care plan needs to be fluid and changeable. Periodic scheduled re-evaluation must take place, with changes being made as necessary. The ultimate goal of care planning is to guide all who are involved in the care of the individual to provide appropriate treatment, in order to ensure optimal outcomes. The key principle is positive action, which actively works to ensure that dependency and negativity is always minimised.

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Paul Horan, Lecturer, School of Nursing and Midwifery, Trinity College Dublin Following on from Michael McKeon’s recent article in Frontline (56, p.25), Paul Horan examines some of the hard facts facing service configurations for persons with intellectual disability in post-modern Ireland.

Recent pay awards, well deserved as they are, for house parent grades have created a pay anomaly which may mean the death knell of the specialist nursing profession for people with intellectual disability in Ireland, as we currently know that role? (otherwise it seems to refer to Ireland??).

In some ways this anomaly has started a debate in public which has been going on in the intellectual disability sector for many years with regard to the merits and demerits of health and social-care provision for people with intellectual disability. Should care provision follow a social model or should it follow a purely health-focused model (or a medical model, as some call it) of provision. Matthews (1996) suggested that the care of people with intellectual disabilities can be seen by some as a social, rather than a health, issue. There are many issues which need to be addressed, notwithstanding the most important one, which is how professional and caring groups can best meet the needs of people with intellectual disabilities. In some ways the argument lies in the middle ground—because of the broad range and spectrum of needs with which the overall population of people of with intellectual disabilities present. Some clients will benefit from a social-care framework and some from a more nursing/healthcare framework of care. Probably the best framework is one which meets the needs of people with intellectual disabilities without necessarily being pigeon-holed into a particular philosophical paradigm.

The recent pay award which has created a situation where house parents who may have no formal training in caring for people with intellectual disabilities can earn more in real terms than their nursing colleagues. In some ways the latter makes a mockery of the hard work and effort exercised by people who study to become nurses in this field. It is also another example of how government policy in the field of intellectual disabilities is ill thought through.

Do we really need nurses to care for people with intellectual disabilities? Would carers and families rather we didn’t have nurses working with people with intellectual disabilities? After all, people with intellectual disabilities are not sick, so why do they need a nurse to care for them?

These are difficult questions which require careful consideration. My first argument is that the essence of nursing is not just caring for sick people but, as Orem (1981) and Florence Nightingale put it, nursing is really much more about helping people achieve an optimum level of healthy functioning. Surely, is that not what nurses for people with intellectual disability excel at—the art and science of helping and enabling people with intellectual disability to achieve their full potential? So what do nurses who work in this sector really do? According to Seal (1998):

Nurses working with clients with intellectual disabilities have a wide range of skills which enable them to care for clients of all ages and with a widely differing levels of ability—carrying out simple and complex nursing tasks in both social and health care settings.

Nurses work with clients in a broad range of intellectual disabilities—from mild to profound and across their lifespan. Outlined below is a range of skills and roles which nurses working in the intellectual disability sector possess and engage in.

Role of Nurses working with People with Intellectual Disabilities
Care Management Activities
  • Assessing
  • Planning
  • Implementing
  • Evaluating
  • Monitoring
  • Delegation
  • Researching
  • Liaison
Caring Role
  • Healing Relationship
  • Providing Comfort
  • Being Present
  • Increasing Client Participation
  • Comfort and Communication – Healing Touch
  • Providing Emotional Support
  • Providing Information Support
  • Providing Guidance
Nursing Roles
  • Nurse Counsellor
  • Nurse Assessor
  • Nurse Clinician
  • Nurse Therapist
  • Nurse Advisor
  • Nurse Manager
  • Nurse Teacher
  • Nurse Mediator
Teaching and Education
  • Coaching
  • Educating
  • Health Promotion
  • Educational Design
  • Lecturing Role
  • Supervising Research
  • Role Model

(Benner, 1984 & Savage, 1998)

In many ways we do need nurses to work with people with intellectual disabilities, nurses who have been specially trained and educated to carry out the many and complex tasks sometimes required to provide high-quality care. If the role of nurses working with people with intellectual disabilities is further encroached upon, ‘there is a danger that this may lead to the general health needs of people with intellectual disabilities being overlooked’, to paraphrase so why is it quotation marks? Matthews (1996). Specialist registered mental handicap nurses are ideally suited to bridging gaps existing service provision. There is also a role for nurses in this arena to work in partnership with primary healthcare teams and networks, as suggested in Primary care: A new direction (Department of Health and Children, 2001).

Although, having said this, the author is not naïve. What is really required are (I’m never sure!) is a range of professionals (including the RNMH) and support workers working in collaboration to meet the needs of clients and their carers.

Would carers, families and people with intellectual disabilities rather we didn’t have nurses working with people with intellectual disabilities? I can’t answer this question, but answers are needed, because I feel if carers and clients don’t advocate for the role of the nurse in the intellectual disability sector, the role may indeed become extinct in its current format.

To conclude, the future provision of care for people with intellectual disability may have been altered? considerably as a result of the stroke of a bureaucratic pen in the Labour Court, creating a pay anomaly which devalues the RMHN/RNMH. In many ways this is unacceptable—nursing and social-care frameworks for people with intellectual disabilities have been disenfranchised as a consequence, which is an intolerable outcome for all concerned.

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Following on from Michael McKeon’s article in the last issue of Frontline, Paul Horan examines some the hard facts facing models of care for people with intellectual disability.

Recent pay awards, well deserved as they are, for house parent grades have created a pay anomaly which may mean the death knell of the specialist nursing profession for people with intellectual disability in Ireland, as we currently know it.

In some ways this anomaly has started a debate in public which has been going on in the intellectual disability sector for many years with regard to the merits of health and social-care provision for people with intellectual disability. Should care provision follow a social model or should it follow a purely health-focused model or, as some might say, a medical model of provision.

There are many issues which need to be addressed, notwithstanding the most important one, which is how professional and caring groups can best meet the needs of people with intellectual disabilities. In some ways the argument lies in the middle ground—because of the broad range and spectrum of needs with which the overall population of people of with intellectual disabilities present. Some clients will benefit from a social care framework and some from a more nursing/healthcare framework of care. Probably the best framework is one which meets the needs of people with intellectual disabilities without necessarily being pigeon-holed into a particular philosophical standpoint.

The recent pay award which has created a situation where house parents who may have no formal training in caring for people with intellectual disabilities may in real terms earn more than their nursing colleagues, in some ways makes a mockery of the hard work and effort exercised by people who study to become nurses in this field. It is also another example of how governmental policy in the field of intellectual disabilities is ill thought through.

Do we really need nurses to care for people with intellectual disabilities? Would carers, families and people intellectual rather we didn’t have nurses working with people with intellectual disabilities? After all, people with intellectual disabilities are not sick, so why do they need a nurse to care for them?

Difficult questions which require careful consideration.

My first argument is that the essence of nursing is not just caring for sick people but, as Orem (1981) and Florence Nightingale put it, nursing is really much more about helping people achieve an optimum level of healthy functioning. Surely, is that not what nurses for people with intellectual disability excel at—the art and science of helping and enabling people with intellectual disability to achieve their full potential? So what do nurses who work in this sector really do? According to Seal (1998):

Nurses working with clients with intellectual disabilities have a wide range of skills which enable them to care for clients of all ages and with a widely differing levels of ability—carrying out simple and complex nursing tasks in both social and health care settings.

Nurses work with clients in a broad range of intellectual disabilities—from mild to profound and across the whole spectrum of lifespan. Outlined below is a range of skills and roles which nurses working in the intellectual disability sector possess and engage in.

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What is the role of nursing in intellectual disability services? asks Michael McKeon, Lecturer in Nursing,

The Commission on Nursing, the commencement of the degree nurse training programmes and the increase in the number of student nurse places may allow the skills of the nurse in intellectual disability to be fully utilised in the delivery and management of services to people with intellectual disability in a wide variety of locations. But some concerns are still apparent. With the rapid and continuous changes in the way that services are provided to people with intellectual disability, the role and responsibilities of nurses in intellectual disability has come under pressure from many areas.

The Commission of Nursing was quite explicit in stating that the central role of the intellectual disability nurse is a single, stand-alone, independent and autonomous discipline within nursing. The commission went further and called for the establishment of a clinical nurse specialist and advanced nurse practitioner in intellectual disability nursing. If that brings to mind the prospect of magnificent things happening in intellectual disability nursing, think again.

In industrial relations, the outcome of a recent pay awards made to intellectual disability staff left the nurse’s salary lower that that of house parents, assistant house parents and care assistant personnel, who received a well deserved pay increase in recognition of their need to care and support many parts of the health and social-care network in Ireland. However, many of them are not specifically educated for the intellectual disability field. The long-term effect of this disparity in pay levels may be that nursing in intellectual disability as a career option within the healthcare field will be eroded, with fewer and fewer people attracted into the nursing discipline. The CAO entry points for intellectual disability nursing study at universities in 2003 has been set quite low in order to attract students to take up this branch of nursing. This seems to acknowledge the modest level of interest there is in intellectual disability nursing even, during the year of the Special Olympics World Summer Games.

The courts have placed the ongoing debate concerning the role of the nurse in Child Development Education Centres (CDECs) with the Department of Education and Science. This has now been implemented as education in its purest form—delivered by the teacher as the lead profession, and not by nurses. The end result of all this is that the realisation of the maximum potential for the severely and profoundly intellectual disability person may not be achieved. Surely the defining roles of nurses, teachers and other practitioners is crucial if work in this specific area of education is to be consistent with court decisions, as well as to remain consistent with the over-riding need to maximise the potential of the person with severe or profound intellectual disability.

Because of the shortage of nurses in intellectual disability services, the government has agreed to an increase in academic training placements to 240 per annum, promising to maintain this level for the next seven years. Two new intellectual disability-training facilities have been established in Letterkenny and Waterford. Nevertheless, in order to maintain services at the level necessary to meet demand, service providers still have to recruit non-intellectual-disability trained nurses to fill nursing vacancies. In some cases they can only provide basic care. This has resulted in a grade mix of nurses, including psychiatric, general, paediatric and overseas nurses. While any profession can provide a positive influence on the care to people with intellectual disability, inevitably a mix grade of nurses has led to a blurring of roles and a lowering of morale among intellectual disability nurses and led to the original question, is nursing in intellectual disability just another pair of hands?

People with intellectual disability, and their families, are vulnerable members of society and the limitations caused by the poverty of service-funding in Ireland is compounded by the lack of emphasis on quality healthcare—including health promotion, primary care and acute care. The many examples of health needs identified during the ‘Healthy Athlete’ programme of the Special Olympics Games clearly highlighted the need for effective intellectual disability practitioners to play a key role in ensuring that people with intellectual disability have access to all elements of healthcare, as part of social inclusion.

A recent study by McCray and Carter (2002) found it desirable that future practitioners should maintain the specialist perspectives of the intellectual disability nurse, together with the social worker’s role in facilitating care-management. This is not the first time the idea of a social-nurse practitioner has appeared in the intellectual disability debate. Could this be an answer, so that people with intellectual disability and their families are provided with the most consistent support, and nurses do not just become ‘another pair of hands’?

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Next year, new courses will be offered in eight third-level settings to provide intellectual disability nursing training programmes at degree level. Michael McKeon explains

The Commission of Nursing, established in 1997, examined the role of the nurse in the health service and produced a report the following year entitled A blueprint for the future. The Commission’s report highlighted the need to promote the distinct identity and unique working environment of intellectual disability nursing. Recommendations were made to develop a strategy—in consultation with nurse educators, intellectual disability nurses and service providers—to promote intellectual disability nursing as a career. Following this report much has changed; next year will see a new four-year degree course in intellectual disability nursing being provided by universities and third level educational colleges.

With much debate about nursing, many changes are taking place. Last year saw an end to the traditional apprentice student nurse model of training, in which students were working and studying throughout their training. The main feature of future nursing training is an emphasis on learning nursing knowledge and clinical skills without the pressure of working at the same time. The current position for this year, September 2001–2002, is that the eight traditional schools of nursing, in association with universities and third level educational colleges, are providing a three-year national diploma programme in nursing. This year’s graduates are the first students to qualify under this system with a university-recognised qualification.

Starting in September 2002, nurse training will leave the traditional nursing schools based in hospitals and residential centres, to locate in Irish universities and third-level colleges. The necessary clinical experience will still be part of nurse training, with student clinical placements in hospitals, residential centres and community and associated health services that are all part of a modern healthcare system.

Intellectual disability nursing has eight nursing training schools at present. The new courses will be offered by four universities and four third-level colleges to provide eight intellectual disability nursing training programmes at degree level.

Degree in Intellectual Disability Nursing

UniversityThird-level College
Dublin City UniversityDundalk Institute of Technology
University College CorkLetterkenny Institute of Technology
Trinity College DublinSt Angela’s College, Sligo
University of LimerickWaterford Institute of Technology

A Nursing Education Forum was established following recommendation by the Nursing Commission. It believes that students graduating from the new nursing degree programme should be professional nurses who are safe, caring, competent decision makers, willing to accept personal and professional accountability for evidence-based practice. It considers that graduates in intellectual disability nursing should be flexible, adaptable and reflective practitioners, integral members of the multidisciplinary team, with a life-long approach to learning.

The nursing degree programme will involve considerable change, requiring a proactive and sustained approach from both universities and health service providers. One practice to be discontinued in the new process is the assessment test and interview for school leavers to enter nurse training. The nurse application system is transferred to the Central Applications Office (CAO), which handles applications for entry to all registration diploma nursing programmes and future nursing degree programmes.

For each nursing education programme, a quota of places is allocated specifically for applicants on grounds of mature years (over 23 years) who would not meet the standard educational requirements. Given that the proportion of mature applicants for nursing rose from 14% in 1977 to 29% in 2000, and that current demographic trends indicate that the number of school leavers is expected to drop in the future, intellectual disability nursing will be attracting more mature people in future years.

Another change in intellectual disability nursing is the update and review in the syllabus for intellectual disability nurse training which was completed in November 2000, as part of the requirements and standards for nurse educational programmes. The syllabus is indicative. It allows scope for the continuing development of subject matter and for the extension of new knowledge to accommodate emerging trends in intellectual disability. It is divided into four areas: nursing and professional development; person-centred care; health sciences and applied nursing principles; and nursing, sociology, law and the environment. Information technology, life-course planning, disability, society and barriers to inclusion, assistive technology, and research-based nursing practice are all new aspects of the syllabus of intellectual disability nursing in the new millennium.

Change is occurring at an astonishing rate in the field of healthcare, in intellectual disability and in nursing, driven by economic, political and technological forces. To achieve successful change, everyone involved—health care providers, people with intellectual disability, parents and nurses—need to be empowered to fully participate in bringing about changes that ultimately improve care. To quote Florence Nightingale (1860): ‘There are two classes of people in the world—those who take the best and enjoy it and those who wish for something better and try to create it. The world needs the appreciation of the first and the discontent of the second.’