Nurses' role in caring for people with a comorbidity of mental illness and intellectual disability:...

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Nurses’ role in caring for people with acomorbidity of mental illness and intellectualdisability: A literature review

Chris Taua, Julie Hepworth and Christine NevilleSchool of Nursing and Midwifery, The University of Queensland, Brisbane, Queensland, Australia

ABSTRACT: This article examines literature on the role of the nurse caring for people with a dualdisability (DD) of intellectual disability and mental illness. A search of the literature between 2000 and2010 resulted in a total of 21 articles that met the inclusion criteria. Seven key categories of the role ofthe nurse were identified: (i) advocacy/health promotion (including working with family); (ii)assessment/case management; (iii) behavioural interventions; (iv) communication; (v) leadership andthe nurse’s role within the multidisciplinary team; (vi) functions regarding medication administration;and (vii) safety/risk management. There is a paucity of research about the role of nurses working withpeople with DD, although a number of opinion-based articles exist. This article identifies a need for therole of the nurse working in DD to be more clearly articulated and for the development of evidence toguide best practice.

KEY WORDS: comorbidity, intellectual disability, mental illness, nurse, role.

INTRODUCTION

The demand on professional performance in nursingis ever increasing in response to numerous factors in thecurrent health-care environment. Economic restraintsand deinstitutionalization, resulting in the restructuring ofservices, together with legislative requirements aroundcompetency, require nurses to reflect, rethink, and recon-struct their roles (Pridding et al. 2007; Taua & Farrow2009). In particular, there is an increasing emphasis onhealth promotion, community care, differing access toservices, early intervention, and shorter inpatient admis-sions (World Health Organization & World Organizationof Family Doctors (WONCA) 2008). Despite recognitionof these changes, there remains little empirical evidenceor theory-based models that describe how nurses workingin services for people with a dual disability (DD) of intel-lectual disability (ID) and mental illness have adjusted to

these demands. As a result, the nurse’s role remainsill-defined, resulting in potential role confusion and a lackof evidence to develop best practice.

FOCUS OF THIS REVIEW

The existence of mental illness in ID is now well estab-lished in the literature (Cooper et al. 2007; Hatton 2002),and that nurses carry out the role of caring for peoplewith DD during episodes of mental illness is also known(Bray 1999; Pridding et al. 2007; Taua & Farrow 2009).However, the multiple challenges that nurses face inresponding to the mental health needs of this group iscritical to understanding the development of best care(Doyle 2000). Effective, evidenced-based DD nursingpractice is dispersed, inadequately defined, and has a poorresearch infrastructure, yet it is required to respond to allof the contemporary policy and practice requirementsrelated to both ID and mental health nursing (Doyle2000; Taua & Farrow 2009). What is evident is that thereis a clear absence of the articulation of the roles and

Correspondence: Chris Taua, School of Nursing and Human Ser-vices, Christchurch Polytechnic Institute of Technology, PO Box 540,Christchurch 8140, New Zealand. Email: [email protected]

Accepted September 2011.

International Journal of Mental Health Nursing (2011) ••, ••–•• doi: 10.1111/j.1447-0349.2011.00779.x

© 2011 The AuthorsInternational Journal of Mental Health Nursing © 2011 Australian College of Mental Health Nurses Inc.

responsibilities of the nurse. The identification of thislack of knowledge led to the aim of this review, which isto answer the question: what are the known roles andresponsibilities of nurses caring for people with DD?

LITERATURE REVIEW

Client groupService provision for people with DD has shifted fromtraditional institutional care, where individuals werecontained for their lifetime, to less restrictive andcommunity-based approaches (Cleary 2003; Higgins2004). Previous institutional care focused on various ide-ologies, including the perceived safety of self and others,minimal community resources, and family stigma relatedto having a family member with an ID. During the insti-tutional era, people were diagnosed as either having amental illness or ID, and it was commonly assumed notpossible to have an ID and a comorbid mental illness(Doyle 2000; Gabriel 1994). As a result of this, any pre-senting behavioural challenges were determined to becaused only by the ID, a notion referred to as ‘diagnosticovershadowing’, where everything about that person isattributed to the ID, and the issues around the comorbid-ity of the mental illness are missed (Deb et al. 2001; Owen& MacFarland 2002). This problem has not disappearedpost-deinstitutionalization. The resultant misdiagnosisimpedes optimal access to good health care for peoplewith DD. The traditional treatment triad of assessment,decision-making, and intervention is also complicated bythe fact that many people with DD might not displaytypical symptomatology, thereby presenting a challengeto nurses working in either ID or mental health-specificservices (Wallace & Beange 2008).

It is well documented that people with ID experiencenumerous comorbid health issues, and have generallylived much shorter lives than the people without ID(Benson 2004; Bouras 2008; Deb et al. 2001; Owen &MacFarland 2002). For some, these comorbidities arecaused by the very nature of the ID, and/or the aetiologythat causes specific syndromes. An example here is Downsyndrome, where there is a much higher incidence ofcardiac conditions, mental health issues, and respiratoryand endocrine disorders. As well, the increased incidenceof comorbidity of mental illness might be due to thenumerous health disparities and vulnerabilities related tobiological, psychological, and social factors that eitherimpact them in a negative way or limit their social roles(Hardy & Bouras 2002; Ouellette-Kuntz et al. 2005;Powrie 2001). In recognizing this, it is now more accepted

that people with ID encounter the full range of mentalhealth issues experienced by populations without ID, andprevalence ranges are reported to be 25–40%, comparedwith 20% in the people without ID (Cooper et al. 2007;Deb et al. 2001; Hatton 2002).

Service provisionThe comorbidity of ID and mental illness also presents apractical concern in regard to service provision (Bouras &Szymanski 1997; Chaplin 2004; 2009). In caring forpeople with DD, staff must adequately respond to mul-tiple medical conditions, various cognitive and develop-mental complexities, as well as extensive communicationchallenges. Genetic impacts often result in specific behav-ioural phenotypes, presenting further complex carechallenges. Therefore, identifying the most appropriateservice with the right mix of adequately-prepared staff forthe role has been the topic of debate and research formore than three decades (Chaplin et al. 2009; Chaplin2004; Moss et al. 2000). The central issue is whether theassessment, care, and treatment of people with DD is bestprovided in ID-specific mental health services (DD ser-vices) or within the generic mental health system.

Current evidence about the provision of mentalhealth services for people with ID is unconvincing anderratic, relying on retrospective or anecdotal reports, andmany uncontrolled studies with small numbers of partici-pants (Bouras & Holt 2004; Chaplin 2004; Hudson &Chan 2002). Chaplin’s (2004) literature review foundthat of 27 studies identified, only two were gold standard,randomized, controlled trials. He identified both ageneral absence of high-quality research and no qualita-tive studies, expressing concern at the lack of evidence toguide clinicians and managers in the development ofbest practice in service provision.

In considering the best setting for the provision of care,it is acknowledged that not all mental health treatmentcentres have dedicated DD services, and many individualsare cared for within generic psychiatric services. Forexample, the white paper on services for people with ID inthe UK stated there was an expectation that people withDD should be able to access psychiatric services whereverpossible (Department of Health 2001). However, Chaplin(2004) maintained there was inconclusive evidence thatgeneric psychiatric services best serve people with DD. Inparticular, anecdotal evidence has revealed consumer andfamily/carer dissatisfaction with mainstream psychiatricservices (Raghavan 2004). One of the key factors identifiedwas regarding a skill deficit in generic mental health staffto adequately assess and treat people with DD. The RoyalCollege of Psychiatrists (2003) agreed that the provision of

2 C. TAUA ET AL.


care in mainstream mental health services is often notviable. They also alluded to the complexities aroundbehaviour, particularly in people with severe disabilities,to be beyond the expertise of some staff. Moreover, theystressed that people with DD have a right to expect skilledstaff caring for them.

Furthermore, Chaplin (2004) cautioned not to makethe assumption that a person with a DD will fit intogeneric mental health services, and that staff working inthese services have the skills to work with them. Chaplinrecommended specific DD research be undertaken tounderstand the particular needs of people with DD,advocating the use of qualitative methodologies to iden-tify the views of patients, carers, and staff. Similarly,Cutler (2001) argued that the best placement is a DDfacility, because mental health facilities have ‘functionallimitations’. The decision about placement for mentalhealth care often depends on the service the person isalready receiving, and this might not always be the appro-priate guideline; for example, if the person is already inan ID service, then the admission might not be to a DDfacility. Clearly the risk here is that an incorrect diagnosismight be made that results in incorrect management andtreatment.

An overview of the draft of the 2001 London Learn-ing Disability Plan in the UK outlined the improvementsto be made to the integration of services for people withlearning disability (Hallawell 2001). Hallawell pointedout that specialist services should not be provided as asubstitute for mainstream services, as these should beavailable to all, and specialist services should only beprovided on a needs basis. Moreover, if people with DDwere to be managed effectively through the same struc-tures as others with mental illness without disability,mental health nurses would require new knowledge andskills.

DD NURSING

As well as the debate about the optimal provision ofservice, the role of nurses caring for people with DD isambiguous. Research about the roles and responsibilitiesof nurses working within mainstream mental health ser-vices and specific ID services is growing, but what isknown about nurses working within mental health ser-vices and caring for people with DD is much less appar-ent. The reason for this lack of research could be dueto there being sparse specialist DD services. Yet withthe outcomes of deinstitutionalization resulting in lessID-specific services and the increased use of genericmental health services caring for people with DD, the

call in nursing literature for further role developmentand focused engagement of mental health nurses in thecare of people with DD is timely (Doyle 2000). A lit-erature review to explore the nursing care of peoplewith DD in acute inpatient units revealed the role of thenurse in behavioural management, advocacy and leader-ship, and the nurse as an educator, with mention of therole of the nurse in regard to family and other teammembers (Pridding et al. 2007). Pridding et al.’s reviewdid not focus specifically on literature regarding DD,incorporating more generic ID nursing roles. There areexpectations for nurses to have generalist skills, as wellas the ability to fill gaps when other professionals, suchas the social worker or the psychologist, were unavail-able (Cowman et al. 2001). When DD nursing is moreclosely examined, such as in the ethnographic studyby Taua and Farrow (2009), its culture clearly involvesnumerous activities. The nurse carries out, for example,therapeutic communication, documentation, and manag-ing the day-to-day running of the specialist unit. A keyfinding of that study was the absence of an articulatedDD focus in the nursing work, with the suggestion thatnurses ‘struggle to understand and define their role in anenvironment that is itself not clearly defined’ (Taua &Farrow 2009, p. 281).

Since deinstitutionalization, nurses within genericmental health inpatient units have seen major changes tothe population group (Ailey 2003). People admitted toinpatient units in the 21st century are often much moretransient, with care focused on their recovery and returnhome. People arrive at services in crisis, and the majoritystay less time, and yet the issues presented are often morecomplex (Ailey 2003). Nursing has generally adjusted wellto this changing environment, providing recovery-focusedcare (O’Brien et al. 2009). However, earlier models ofcare for people with ID responded to a breadth of healthneeds, but deinstitutionalization has meant that manypeople do not receive specialized care nor is it deliveredby staff who know them and understand their needs (Taua& Farrow 2009). It is suggested, therefore, given thatpeople with DD are regularly admitted to generic mentalhealth services, that problems arise when mental healthnurses state that they do not feel adequately prepared tosupport people with DD and struggle to provide optimumcare.

METHODS

The search strategy for the literature review involvedsearching the electronic databases Proquest, CINAHL,OVID, EBSCO health source, Medline, and Psychinfo for

NURSES’ ROLE IN DUAL DISABILITY 3


relevant articles. Primary parameters for this search wereEnglish language, adults (aged 18+), and the dates 2000–2010. Articles produced prior to this date have beenincluded in an extensive literature review undertaken byPridding et al. (2007), and therefore, the intention wasnot to repeat these findings. Due to the paucity ofresearch literature on DD nursing, the search was supple-mented by hand-searching of reference lists. Articles thatrelated exclusively to children, forensic populations,disorder-specific populations, and older adults wereexcluded.

The following search terms were used either individu-ally or in a variety of combinations for each database:(mental retard*) OR (learning disability) OR (intellectualdisability) OR (developmental disability) OR (comorbid*)OR (dual disability) or (dual diagnosis NOT alcohol NOTdrug NOT addiction) AND (psych*), OR (mental) AND(nurs*) or (car*). Initially, the search was to include onlypeer-reviewed articles and research studies; however, dueto the aforementioned paucity, theoretical and policyarticles were also included.

Articles were evaluated to establish their relevance tothe role of the nurse working within a setting wherepeople with both intellectual disability (including theabove terms) and mental illness were supported. Articlesthat did not meet that criterion were reconsidered if theterms ‘carer’, ‘health-care worker’, and ‘multidisciplinary’were evident, or there was evidence that there had been

an admission to an inpatient service where clearly therewould be nursing staff. The articles that met all criteriawere then acquired.

Articles were eligible if they met the following criteria:

• The health-care workers discussed included nurses,and

• The focus was the comorbidity of ID and mentalillness, and

• The mental health care of people with DD

The combinations of these searches produced 1261initial titles; a flow diagram of the search outcomes isprovided in Figure 1. Of the 21 articles finally reviewed,less than half (42%) were research studies. Consequently,this report also accepted articles reporting clinical expe-rience, case studies, and professional development, aswell as conceptual articles. Due to the small number ofrelevant research articles, this review was undertakenusing systematic principles, rather than as a systematicreview exercise (Fig. 1).

The main objective of this review was not to give a fulldescription of the studies, but provide a general overviewof the key categories evident in the articles. The relevantinformation in the articles was read multiple times, analy-sed, and classified into key categories (Table 1), and thenagreed upon by all authors. The names of the categoriesare derived from terms that were in common use withinthe articles.

FIG. 1: Flow diagram of the review usingsystematic principles.

4 C. TAUA ET AL.


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RESULTS

The results of the literature identified (in alphabeticalorder): (i) advocacy/health promotion (including work-ing with family); (ii) assessment; (iii) behavioural inter-ventions; (iv) communication; (v) leadership and thenurse’s role within the multidisciplinary team; (vi) func-tions regarding medication administration; and (vii) safetyand risk management as the most common categories ofthe nursing role. A discussion of these categories is pre-sented below.

Advocacy and health promotionThe advocacy and health promotion role of the nurse iscentral to effective health care, particularly in relation tothe morbidity and mortality disparities faced by peoplewith DD (Fisher 2004; Higgins 2004; Kwok 2001; Vogel2007). Higgins identified the role of the nurse as one thatis closely involved with health action planning. Assessingthe vulnerability and need to increase protective factorsfor people with DD is also a crucial part of the nurse’s role(Hardy & Bouras 2002). Hughes (2009) identified thenurse as being significant in the provision of support andadvocacy to families, caregivers, and the individual.Establishing collaborative relationships with family andsignificant others is stated as being essential to effectivetreatment, and advocacy is pivotal to ensure access toappropriate services (Bush 2003; Devine & Taggart 2008;Encinares & Golea 2005; Hardy & Bouras 2002). Consis-tent with this research is Pridding et al.’s (2007) work, inwhich they maintained that alongside fundamentalnursing roles, the nurse has a responsibility to developeffective relationships with families.

Pridding et al. (2007) explained that while the nurse isnot always the most appropriate person to provide advo-cacy, due to potential power imbalances, for example,in instances of compulsory admission, the nurse canpromote self-advocacy in terms of an individual’s self-determination, provide information, and assist the personto access other relevant agencies. While this notion islaudable, it might be, however, complicated by the pres-ence of the DD.

A literature review undertaken by Fisher (2004) exam-ined both the health-care needs and service accessibilityfor people with ID, including the identification of defi-ciencies in mental health care. It was purported that whilenurses were committed to health promotion and preven-tion, they needed to ensure ‘aware(ness) of the existingand future health care, special needs and challenges’ thataffect people with ID (Fisher 2004, p. 49). Devine andTaggart (2008) also mentioned the role of the nurse in the

promotion of positive mental health for people with ID byensuring that care is ‘person centred and inclusive’. Cutler(2001) contended that nurses are skilled in the area ofpatient advocacy. She goes on to propose that nursesworking in this area in advanced roles have the ‘potentialto impact systems of care by serving in managerial rolesand as members of advisory and policy making boards’ (p.616). This managerial form of advocacy is reinforced byPridding et al. (2007), who maintained that nurses mustextend their role into service coordination. Kwok (2001)referred to the importance of nurses in DD, particularlyin regard to their role in advising ‘appropriate standards ofcare’.

Assessment/case managementGiven that DD is a complex area, it is reasonable to expectnurses to have specialized knowledge and skills (Higgins2004; Slevin et al. 2008; Vogel 2007; Xenitidis et al. 2004).It is nurses who are with patients 24 h per day, and there-fore best placed to recognize the subtle changes and symp-tomatology that might indicate mental health issues (Vogel2007). Ailey (2003) highlighted the fundamental impor-tance of the role of effective nursing assessment in recog-nizing the barriers to mental health care, suggesting thatthe nursing process is fundamental to thorough assess-ment. Devine and Taggart (2008) and Taua and Farrow(2009) emphasized the importance of nurses having theskills to identify and report key issues regarding a person’smental health status, not least because they maintain thatpsychiatrists rely on nurses’ reports. However, a contem-porary, evidence-based assessment framework to guidenursing care in DD is absent in the literature. Such aframework would be considered part of the ‘nursingprocess’, which draws on both what is known and clinicaldecision-making. The nurse undertakes an assessment,which includes communication with the person, and thisinforms nursing care diagnoses, a set of interventions, andevaluation (Tomey & Alligood 2006). This assessmentframework is not to be confused with the assessment toolsthat are used as for clinical illness-related diagnostics; forexample, the Psychiatric Assessment Schedules for Adultswith Developmental Disabilities (Moss 2002), an ‘instru-ment designed to identify psychiatric symptoms in peoplewith ID’ (Holden & Gitlesen 2004, p. 556). The problemwith the use of specific assessment frameworks for assess-ing the mental health needs of people with DD is that theyare often reliant on subjective information from thepatient, and that is not always possible to obtain (Taua &Farrow 2009).

One of the greatest challenges for health-care profes-sionals is to be able to transform their assessment findings

6 C. TAUA ET AL.


into appropriate treatment plans. Two common mentalhealth nursing assessment frameworks, ABET (appear-ance, behaviours, expression, thoughts) (Cutler 2001)and JOMAAC (judgement, orientation, memory, affect,attitude, cognition) (Hamer 1998; Vogel 2007), are repor-tedly useful in the recognition of impaired cognitionand/or communication abilities. No empirical evidencewas found regarding the effectiveness of these models.They might also have limited use when information aboutthe person’s baseline level of functioning is required, asthey still require a degree of subjective information,which is not always possible. While Taua and Farrow(2009) found assessment to be fundamental to the DDnursing role, they also refer to the absence of an evidence-based assessment framework to guide DD nursing prac-tice. Nurses in that study utilized a generic mental healthassessment framework, which was shown to be problem-atic. Higgins (2004) identified the need for nurses tohave the skills and knowledge to complete a ‘multimodalassessment (which entails) developing comprehensivecare plans, implementing and evaluating effectiveness ofcare plans, care management skills; ongoing review andprogramme modification’ (p. 1346). A similar approachwas described in reference to the multidimensional treat-ment approach, involving consideration of the biological,psychological, social, and developmental needs (Dosen2007). It is noted that while the first three dimensions,biological, psychological, and social, are easily accepted byhealth professionals, consideration of the developmentaldimension has been of minimal significance, and shouldbe included into training programmes preparing nurses towork with people with DD. Understanding developmen-tal theory, relevant social factors, and the eliminationof any possible physical causes is critically important(Hughes 2009).

Although Slevin et al. (2008) identified nurses as thecore group within the team and ‘crucial to accurateassessments and evaluation’ (p. 544), some literaturepoints to the absence of necessary nursing skill or knowl-edge (Gibson 2009; Haut & Hull 2000; Xenitidis et al.2004). This absence was often related to nurses’ area ofcare or their scope of practice in relation to the keyhealth needs of the individual; for example, nurses edu-cated to work in either generic mental health or ID ser-vices. Indeed Haut and Hull (2000) have questioned theability of learning disability nurses to participate inmental health assessment, given that their own researchdemonstrated a clear need for specialist nursing staff todevelop this knowledge.

Therefore, because people with DD have specific andcomplex needs, nursing practice in DD settings requires

nurses to have even more advanced skills. Cutler (2001)further suggests that advanced practice mental healthnurses were well placed to provide care. Similarly,Higgins (2004) also advocated the use of advanced thera-peutic skills in assessing the needs of people with DD andto enhance quality support.

Behavioural interventionsThe presence of mental illness symptomatology inpeople with ID is often, but not exclusively, associatedwith an increased need for behavioural support, yet theuse of psychological or behavioural therapies (positivebehavioural support) is often limited due to erroneousassumptions or misunderstandings around the benefit ofproviding them (Cooper & van der Speck 2009; Kwok &Chui 2008; Tasse & Wehmeyer 2010; Vogel 2007).Nurses who work with people with DD in the inpatientcare setting are often the primary staff member pre-sent during the acute phase, and therefore, are possiblybest placed to guide and manage behavioural responsesto mental illness symptomatology (Slevin et al. 2008).Devine and Taggart (2008) highlighted several behav-ioural management strategies that nurses might use inmanaging challenging behaviour, including cognitivebehavioural, psychodynamic, and family therapy, alongwith social interventions, if appropriate for an individu-al’s situation. The focus of the article is on nurses;although their use of these therapies is not specificallydiscussed, they concluded that the nurse is best placedto support the individual during periods of distress.They claimed that nurses with a 24 h per day presenceare the key health professionals that can be ‘attunedto the person’s passive communications signals’ (Devine& Taggart 2008, p. 47). Ailey (2003) referred to similarbehavioural models, going further to advocate future useof interpersonal and ecological models to ensure benefi-cial models of treatment. Slevin et al. (2008) also iden-tified the nurse as the one who is most available, andtherefore, the one undertaking continued and consistentobservation of both behaviour and mental health status.Consistency in behaviour management by staff is alsohighlighted by Wink et al. (2010). These authors pro-moted the need for consistent daily schedules andensuring clear and understandable behavioural goals andexpectations (Wink et al. 2010). In contrast, Chaplin(2009) reported that people with ID in psychiatric unitsare more likely to receive seclusion, restraint, or one-to-one nursing, and suggests this might be because staffworking in those services are not well prepared to carefor people with DD. It seems that although there isemerging consensus supporting positive behaviour



support for people with ID, there remains a relativepaucity in the research literature in regard to thenursing role regarding this. It is suggested that nursesare ideally placed to implement positive behaviour sup-port across relevant settings.

CommunicationTherapeutic communication skills are fundamental in allareas of nursing, but there is much variation in the abilityto communicate in the area of DD (Devine & Taggart2008; Hardy & Bouras 2002; Pridding et al. 2007). Theability to establish a rapport with patients is the key toundertaking effective assessment and care planning, andnurses are again well placed to do this (Vogel 2007).Devine and Taggart identified the importance of demon-strating genuine interest; having a presence, particularlyduring stressful times; and the need for the nurse to beable to ‘tune in’ to passive or non-conventional commu-nication signals. Gibson (2009) also highlighted the needfor staff working with people with ID to have an aware-ness and knowledge regarding the use of alternative formsof communication. The ability of staff to manage persis-tent behaviours seeking reassurance was highlighted, andthey noted that it was important for staff to develop strat-egies to avoid frustration or aggravation while providingappropriate reassurance (Hartley et al. 2008).

Yet communication within DD nursing is not onlyabout the work with the person being cared for; oral andwritten communication is also part of the primary nursingrole (Taua & Farrow 2009). The importance of accuratecommunication and its transmission to other teammembers was highly valued, demonstrating that commu-nication tasks are key nursing roles in documenting andreporting the care delivered, and the health status andresponse of the individual to care.

Leadership/the multidisciplinary teamThe nurse working in DD needs to be skilled in carecoordination, as well as contributing to the team, andindeed at times leading the team (Cutler 2001; Hardy &Bouras 2002; Higgins 2004; Kwok 2001; Pridding et al.2007; Taua & Farrow 2009; Vogel 2007). While it is oftenplausible that nurses are referred to as part of the team,rather than primary providers of care, they have theability to provide much broader interventions, Cutlerstressed the critical importance of a team approach inregard to the role of the nurse. She argued that nursesworking in this area have the skills to act as consultantsand leaders of multidisciplinary teams in managerial rolesand as advisors and policy makers. Higgins (2004) andDevine and Taggart (2008) also supported the role of the

nurse as team leader, referring to the need for a multi-modal approach in DD care, with the recognition that thenurse is best placed to lead this. Likewise, Higgins (2004)purported that the person who should coordinate theteam is a skilled professional with the ability to ‘collate,present and disseminate the assessment information’ (p.1345). The role of the nurse should not be confined to theinpatient team, and might extend to interagency collabo-ration with other services, particularly primary care ser-vices and family (Taggart et al. 2010).

Medication administrationThe use of psychotropic medication for people with DD iswell known and well debated, indicating numerous casesof polypharmacy and the use of medication as a chemicalrestraint. The current focus is on the use of medicationfor its therapeutic benefits, rather than behaviouralcontrol (Cutler 2001). However, medication remains themost commonly-used biological intervention (Ailey 2003;Devine & Taggart 2008; Kwok & Chui 2008). Devine andTaggart (2008) and Vogel (2007) identified the importanceof nurses’ role in medication administration, and empha-sized that they must adhere to their regulating bodiesstandards regarding the administration of medications.As well, Vogel (2007) highlighted the role of the nurse inensuring that non-regulated staff were aware of the side-effects of medication. Ailey (2003) also cautioned aboutthe importance of adequate education and training forhealth professionals in regard to medication, particularlygiven the amount of polypharmacy and mismanagementwith the DD population. General nursing responsibilitiesaround administration are of course a fundamental role ofthe nurse in any setting, but extra caution must be taken bythe nurse working with people with DD in regard to closemonitoring for side-effects and the person’s capacity toconsent. The nurse’s responsibility is to provide accurateinformation and to monitor for side-effects and interac-tions with other medications. It is well documented thatpeople with ID are thought to be more likely to experienceside-effects, yet are less likely to be able to report them(Hellings 1999). Haut and Hull’s (2000) research studyrevealed that there was a knowledge deficit in staff aboutpsychotropic medication in terms of their ability to admin-ister the medication itself, and awareness of the side-effects. Kwok and Chui (2008) found that the use ofpsychotropic medication, alongside behavioural treat-ment, was the main intervention in DD. Therefore, theneed to develop nurses’ knowledge about psychotropicmedication is highlighted by research that showed that thearea of medication administration was frequent wheresituations of risk occurred in DD (Taua & Farrow 2009).

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Safety/risk managementFinally, safety and risk management issues, more exten-sively discussed in the literature, present particular chal-lenges for nurses because of the numerous factors thatimpact people with DD. These factors range from genet-ics, behavioural phenotypes, to increased vulnerabilityto abuse (Ailey 2003; Campbell 2011; Devine & Taggart2008; Higgins 2004; Slevin et al. 2008). The presence ofmental illness symptomatology, often associated withincreased need for support, exacerbates this risk. Forexample, a person with limited communication skills whois depressed might use aggressive or aberrant behavioursto express their distress (Holden & Gitlesen 2004; Tasse &Wehmeyer 2010). In acknowledging this, behaviours, suchas aggression, self-injurious behaviour, and other stereo-typy (repetitive or ritualistic movements or behavioursoften seen in people with ID) often cause complexities fornursing care. Therefore, managing disturbed behaviour isseen as a primary role for nurses working with people withID, and more particularly, with DD (Campbell 2011).

In a literature review undertaken to identify the roles ofmental health nurses in inpatient units caring for peoplewith DD, an expectation that nurses have specialized skillsto respond to disturbed or challenging behaviour wasdescribed (Pridding et al. 2007). These skills included theability to establish and maintain therapeutic relationships,boundary setting, advanced risk assessment skills, firm-ness, and consistency, alongside empathy and having posi-tive regard for the person (Encinares & Golea 2005; Winket al. 2010). Slevin et al. (2008) also identified the role ofthe nurse in undertaking special observations in order tomaintain the safety of an individual and/or others.

A risk assessment tool specifically for primary caremental health and learning disability services was trialledin a study undertaken in Scotland (Stein 2005). While allmembers of the multidisciplinary team were expectedto complete the tool, in many cases, it was the nurses onlywho undertook this task. Hardy and Bouras (2002) alsoreferred to the role of the nurse in managing and com-pleting comprehensive risk assessment tools. Taua andFarrow (2009) found that crisis and risk managementwere seen to be a primary nursing role in DD.

DISCUSSION AND CONCLUSIONS

The literature discussed in this review was mostly theo-retical with limited empirical research. Thus, an inte-grated review using systematic principles was undertaken,rather than a complete systematic review. We sought todescribe the significance of the nurse in DD, especially

because of the complexities of people who have limitedcognitive capacity and communication to express theirhealth experiences and/or concerns. However, despite therelative lack of high-quality research evidence, a numberof conclusions can be drawn. The most common catego-ries constituting the role of the nurse in this review wereassessment and care planning, advocacy, and health pro-motion, as well as safety and risk management. Althoughnot as regularly cited, but no less important, is the role ofthe nurse within the multidisciplinary team, especiallyin regard to the leadership role, managing challengingbehaviour, and the administration of medication. Whatwas surprising was a lesser reference to the importance ofcommunication; however, this aspect of nursing in DDmight well be encompassed within all previous mentionedroles.

Life expectancy of people with ID is increasing inresponse to advances in medicine and health care, parallelwith the non-ID population (Fisher 2004; Ouellette-Kuntz et al. 2005). Nursing care of people with ID andmental illness has also changed dramatically, with nursesworking in both specialist DD and generic mental healthservices. Unfortunately, what is shown in much of theliterature is that despite an increase in knowledge andawareness of the health needs of people with ID, andindeed DD, their health problems are still too oftenoverlooked. Health screening still requires significantimprovement, and the education and training of the work-force to understand and respond to those particular com-plexities of DD is required. This review has gone someway to revealing the importance of the nurse in advocacyand health promotion.

It is well recognized that people with DD present withhigh levels of challenging behaviour, and have morecomplex support needs requiring more intense care(Schalock et al. 2010; Tasse & Wehmeyer 2010). There-fore, the finding in this review around effective assess-ment is concerning. Arguably, while there are identifiedassessment frameworks specifically for DD nursing,they are not evidence based, and the paucity of researcharound these frameworks in relation to contemporarycare is another concern. Given the complexity in recog-nizing mental illness in ID, it is vital that nurses have theknowledge and skills to identify both typical and atypicalsymptomatology, are aware of the impact of negative lifeevents on an individual, and able to formulate an effectiveand holistic health plan. Several authors (e.g. Ailey 2003;Chaplin 2004; Gabriel 1994; Higgins 2004 and Taua &Farrow 2009) have advocated that a quality understand-ing and knowledge base of staff working within DD iscritical. However, the important role of the nurse in



working effectively in utilizing behavioural managementstrategies is apparent in the few articles found. Alongsidethis behavioural work was the nurse working to managesafety and risk, as well as medication administration andeducation (Ailey 2003).

The nurse in DD is not only critical to effective care,but also to team function. Nurses are the one health-careprofessional who have constant contact with people ininpatient services, and therefore, are well placed to leadthe team and coordinate care (Ailey 2003; Devine &Taggart 2008; Higgins 2004; Taua & Farrow 2009). Theability to do this suggests the need for highly-skilled andknowledgeable nurses. As well, advanced knowledgeand skills are required, given the identified complexity ofcare in regard to the comorbidity of DD and resultantbehavioural challenges, alongside the ability to advocate,educate, and communicate with many and various others.

Communication challenges in DD are well docu-mented throughout the literature; however, this reviewrevealed no research studies that explored how nurses cancommunicate effectively. Without effective communica-tion skills (and these skills are not limited to verbal com-munication), it becomes difficult to evaluate the successof assessment and intervention plans.

LimitationsThis review is subject to some limitations. The main limi-tations are related to the lack of quality research studies.The few studies found have different methodologies,making any comparisons difficult, and there were no rep-lications. Due to the relatively small number of researcharticles found, none were excluded on grounds of quality,and this might have introduced bias. Stronger themesmight have emerged also if forensic, child and youth, andolder persons’ health and disorder-specific (such as per-sonality disorder) studies were included; however, thiswas not possible within the confines of this particularreview. It is noted also that there might be also be somerisk in limiting the research to only DD, in that it mightexclude some aspects of the generic role of the nurseworking in either ID or mental health that might or mightnot be relevant to nurses working in DD. However,despite the eventual range of articles reviewed, the keyroles and responsibilities of nurses in the area have beenidentified and contribute to both current knowledge andareas for future research.

SummaryThere is general agreement that people with ID are proneto mental illness at a significant rate; however, the currentevidence for the effective provision of effective mental

health services for this cohort is unconvincing and erratic(Bouras & Holt 2004). Current literature focuses on manyretrospective or anecdotal reports, uncontrolled studieswith small numbers of participants (Chaplin 2004), and adearth of research directing best practice (Bouras et al.2003). It has been suggested that people with DD are oneof the most overlooked and underserved groups withinhealth-care systems (Benson 2004; Voelker 2002). As sug-gested by Pridding et al. (2007) and Ailey (2003), nursesare well placed to play a key role in inpatient care forpeople with DD. This review also found this to be appar-ent. Given the prevalence of mental health issues forpeople with ID, it is time to ensure that nurses have theskills and knowledge to ‘get it right’. Therefore, the needfor ongoing or further education for nurses, as the mostregular health-care professional in inpatient services,working with people with DD is imperative in both clini-cal training and by developing education curricula.

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