Abstract
The objective of this scoping review was to summarise evidence on the contribution of intellectual disabilities nurses to improve the health and well-being of children, adults and older people with intellectual disability, now and for the future. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (for Scoping Reviews) (PRISMA-ScR) process and Joanna Briggs Institute (JBI) guidance was used. We included 54 publications. We identified 154 interventions undertaken by intellectual disability nurses. We categorised the intellectual disability nursing interventions into three themes: effectuating nursing procedures, enhancing impact of services, and enhancing quality of life.
Findings point to high quality research being essential in determining the impact and effectiveness of intellectual disability nursing interventions across the lifespan. We recommend that a searchable online compendium of intellectual disability nurse interventions be established and regularly updated. This will provide opportunities to engage more effectively in evidence-based practice.
Keywords
Introduction
This is the first of a series of 4 papers of a 3-phase study undertaken between 1 February 2020 and 31 March 2021. The overall aim of the research was to identify nursing led interventions that are in place to address the challenging and changing needs of people with intellectual disability. This paper reports the findings from the scoping literature review phase of the study. The a priori literature search was undertaken between 1 February 2020 and 31 May 2020, and subsequent ad hoc literature search was undertaken during the duration of the project. A re-run of the literature search was undertaken in September 2023 to identify any new studies. We identified one new study. However, no new themes or interventions emerged from this study. The objective of this phase of the study was to identify interventions undertaken or that could be undertaken by intellectual disability nurses working directly with people with intellectual disabilities, and their impact on the health and wellbeing of people with intellectual disabilities. Paper 2 reports the findings from an online cross-sectional survey of intellectual disability nurses that identified 5 major themes of nursing interventions: effectuating nursing procedures, enhancing impact of intellectuality disability services, enhancing impact of mainstream services, enhancing quality of life, and enhancing intellectual disability nursing practice. Paper 3 reports the findings from evaluation questions of an online survey of intellectual disability and other nurses working with people with intellectual disabilities understood these interventions. Paper 4 reports the impacts and case examples of intellectual disability nursing interventions from an online survey of intellectual disability nurses and other nurses working predominantly with people with intellectual disabilities.
There is a lack of clarity on effective interventions that can be carried out by intellectual disability nurses. By interventions we mean any evidence-based actions, procedures, or treatments undertaken by the nurses (Hogston and Simpson, 2002). Intellectual disability nurse role expectations vary across countries. Lack of clarity on effective intellectual disability nursing interventions can result in confused and ambiguous expectations among healthcare professionals. This may result in reduced quality of health and healthcare experiences for people with intellectual disability. Clarity of role expectations for intellectual disabilities nurses is beneficial because it may improve communication, flexibility, and responsiveness at every level of health policy implementation for people with intellectual disability.
The Nursing and Midwifery Council of the United Kingdom and the Nursing and Midwifery Board of Ireland offer pre-registration intellectual disability nursing programmes and in the Netherlands students can choose to specialise in intellectual disability in the 4th year of a generic programme (Robinson et al.,2017). In other countries such as Australia, New Zealand and United States of America (USA) pre-registration nursing programmes have intellectual disability (Trollor et al., 2016). In countries like the USA and Canada, there are post-registration courses for nurses working with people with intellectual disability. Internationally, the role of intellectual disability nursing varies significantly but it is evident that the specialist knowledge and skills are essential in enhancing the delivery of person-centred care that improve health outcomes for people with intellectual disability (Brown et al., 2016).
The provision of health and healthcare services to people with intellectual disability is opportunistic. This is despite evidence that point to a need for specific and targeted interventions to achieve better outcomes (McIlfatrick et al., 2011; Chauhan et al., 2010; Robertson et. al., 2014), despite evidence demonstrating that preventative nursing interventions are effective in identifying the health needs of people with intellectual disability (Emerson et al., 2011; Robertson et. al., 2014). These nurses need to deliver effective nursing care to people with intellectual disability in challenging circumstances . This is also contrary to the the United Nations Convention on the Rights of Persons with Disability (Melville et al., 2006), which stipulates that people with intellectual disability have the right to the highest attainable standard of health.
The scoping literature review sought to answer the following question; What intellectual disability nursing interventions are in place to respond to the changing needs of people with intellectual disability, and what is the impact of these interventions?
There are estimated 1.5 million people (approximately 2.16% of adults and 2.5% of children) with intellectual disability in the UK, this is changing and increasing (Mencap, 2012, Mencap, 2020). People with intellectual disability are high and frequent users of all health services, including primary care, child health services, acute healthcare services and specialist intellectual disability services. There is increasing complexity of the health and social care needs and conditions of this population (Truesdale and Brown, 2017). They are known to have much greater health needs than those of comparable age groups (Backer et al., 2009; Kerr, 2004; Straetmans, et al., 2007; Hatton and Emerson, 2015; Kavanagh et al., 2017; LeDer, 2020; Robertson et al., 2017; Savage and Emerson, 2016; Emerson et al., 2016a; Emerson et al., 2016b), and experience preventable higher mortality rates (Mencap 2007; Heslop et al., 2013; Heslop et al., 2014; Robertson et al., 2015; Bakker-van Gijssel et al., 2017; LeDeR, 2020). These health problems are commonly, and widely undiagnosed, misdiagnosed, and untreated (Llewellyn et al., 2015; Emerson and Brigham, 2015). People with intellectual disability are more likely to be dependent on others for their health and healthcare outcomes (Campbell and Martin, 2009).
Poor uptake of health services amongst the population of people with intellectual disability is a longstanding issue (Allerton and Emerson, 2012; Robertson et al., 2014). People with intellectual disability are likely to be passive participants in their health and healthcare and are dependent on others for their health and healthcare outcomes (Campbell and Martin, 2009). The provision of health services for people with intellectual disability appear opportunistic, despite the need for targeted interventions (Chauhan et al., 2010; Robertson et. al., 2014). Preventative nursing interventions such as health screening are effective in identifying the health needs of people with intellectual disability (Emerson et al., 2011; Robertson et. al., 2014).
The lack of role clarity of the professionals working with people with intellectual disability has been consistently identified as one of the most common barriers to better health outcomes for people with intellectual disability (Mafuba, 2009, 2013; Mafuba and Gates, 2015; Mafuba, Gates and Cozens, 2018b). These outcomes could be improved through appropriate intellectual disability nursing interventions. It is therefore important to clarify the interventions intellectual disability nurses can play to minimise the potential consequences of the risks the result in the preventable premature death of people with intellectual disability. Lack of clarity on effective nursing interventions can result in confused and ambiguous expectations among healthcare professionals, as well as reduced quality of health and healthcare experiences for people with intellectual disability. It is important to establish the evidence base for the most effective interventions to delivering nursing care to people with intellectual disability.
Methods
The Preferred Reporting Items for Systematic Reiviews Meta-Analyses for Scoping Reviews (PRISMA-ScR) process and Joanna Briggs Institute (JBI) guidance were used to select the literature for review and to present the findings (Trico et al., 2018; Peters et al., 2017). We adopted a mixed methods approach to the review and synthesis due to the heterogeneous nature of the literature. JBI tools were used to pool findings and rate them for quality. Thematic synthesis (Braun et al., 2019) was used to generate analytical themes.
Eligibility criteria
Inclusion and exclusion criteria
Sources were included if they were published before commencement of this review and were published in English, or subsequently translated into English. Peer reviewed journal articles, unpublished studies (e.g., theses) were considered for review if they included references to intellectual disability nursing interventions.
Types of studies
Qualitative, quantitative and mixed method studies published in peer-reviewed journals, opinion papers, and literature reviews were included.
Types of phenomena of interest
Intellectual disability nurse interventions that focused on improving the health and well-being of pregnant women with intellectual disabilities, children, adults, and older people with intellectual disability.
Types of participants
Intellectual disability nurses and other nurses that exclusively worked with people with intellectual disability across the lifespan, people with intellectual disability, and carers of people with intellectual disability. We included literature reviews, and opinion papers that focussed on interventions undertaken by intellectual disability nurses even though they had no participants.
Search terms
Search terms.
Information sources
We searched the JBI Reports (Wiley Online Library); MEDLINE; EMBASE; PsycINFO; CINAHL (EBSCOhost); ScienceDirect; Google Scholar; Academic Search Elite; Index to Theses (UK and Ireland); ETHOS; ProQuest; and Dissertations Abstracts, NICE, UK Government publications, and professional organisations’ publications.
Search strategy
Table 1 shows the search terms that were used, how they were combined, and how databases were searched. We also searched the reference and citation lists of the review papers for additional literature.
Selection of sources of evidence
Documents were assessed by three reviewers for methodological validity and relevance. We used the JBI Checklist for analytical cross-sectional studies (JBI, 2020a), the JBI Checklist for qualitative research (JBI, 2020b), the JBI Checklist for randomised controlled trials (JBI, 2020c), the JBI Checklist for systematic reviews and research syntheses (JBI, 2020d), and the JBI Checklist for text and opinion (JBI, 2020e) to appraise literatures.
Data charting process
Three reviewers independently carried out data extraction using a data extraction form based on Timmins and McCabe (2005). Any disagreements that arose between the reviewers was resolved through discussion with a review panel comprising members of the research team.
Data items
We extracted: author(s) details, year, country of origin, study objectives, methods (type of paper, study design, setting (where applicable), participants (where applicable), number of studies (where applicable), data collection methods (where applicable), data analysis methods (where applicable) and findings / conclusions.
Critical appraisal within sources of evidence
We used the JBI levels of evidence: Levels of evidence for effectiveness (JBI, 2013) to rate papers.
Synthesis
We adopted a narrative approach to synthesis because of the heterogeneous and disparate in nature of the literature. The inclusion of diverse forms of evidence was important for broadening the evidence base to inform the review (Sandelowski et al., 2012). We used the Braun et al.’s (2019) approach to thematic analysis to generate analytical themes. Three members of the research team of six undertook data synthesis, with the remaining three members making a review panel that reviewed and agreed the emerging themes.
We identified 154 interventions undertaken by intellectual disability nurses. We categorised the interventions into three themes: Effectuating nursing procedures (52 interventions), Enhancing impact of services (73 interventions), and Enhancing quality of life (41 interventions). Out of the 154 interventions only 2 were underpinned by some evidence of effectiveness.
Results
Selection of literatures
We included 3 literature reviews, 42 primary research papers, and 9 opinion and text papers in the review. Figure 1 Literature appraisal and selection flow diagram.
Critical appraisal within sources of evidence
Results and characteristics of sources of evidence.
Results and characteristics of sources of evidence
Discussion
What is clear from this scoping review is the wide range of interventions that intellectual disability nurses undertake in a complex sphere of practice. The sheer extent of these interventions signifies that intellectual disability nurses need to constantly adapt and engage in a wide range of roles, as well as constantly assimilating emergent roles (Northway et. al., 2017). The literature also documents the complexity and changing nature of care and care needs of people with intellectual disability, the changing environments in which intellectual disability nurses are practising, and the increasing expectation for intellectual disability nurses to meet the health needs of people across the lifespan.
In the effectuating nursing procedures theme, we identified a wide range of nursing procedures that intellectual disability nurses currently undertake. In enhancing the impact of services theme the need for intellectual disability nurses to engage in inter-professional working cannot be over-emphasised – their input is often essential in ensuring care is co-ordinated, integrated, and meets the needs of the individual and their support network. We have also identified the wide range of roles undertaken by intellectual disability nurses across the lifespan and in a wide range of settings that focus on enhancing the quality of life of people with intellectual disability.
Effectuating nursing procedures
In this theme we identified 52 (34%) interventions. The interventions in this theme relate to practice where intellectual disability nurses work to deliver direct care to people with intellectual disability.
Maternity
The review by McCarron et al., (2018) highlighted the need for intellectual disability nurses to work with people with access pre-natal screening services but a very limted number of studies identified interventions undertaken by intellectual disability nurses in this area. Providing support in this area is important because without such support it is likely that pregnant women with intellectual disability may be unable to access appropriate maternity care. The lack of any evidence of intellectual disability nurse interventions in this area may be indicative of the fact that maternity practice is outside the competence scope of nursing practice in general, so it is likely that intellectual disability nursing interventions in relation to women will always be limited. However, it could be argued that the need for intellectual disability nurses to work with women with intellectual disabilities to access maternity and pre-natal screening services is important (McCarron et al., 2018). Expectant mothers with intellectual disabilities may face child protection issues and intellectual disability nurses can undertake important interventions to support them through these processes. It could be argued that intellectual disabilities nurses are well placed to work directly with pregnant women with intellectual disabilities through supporting them psychologically, as well as supporting them to access appropriate maternity services.
All age groups
Intellectual disability nurses undertake a wide range of needs assessments for people with intellectual disabilities in a wide range of settings and across the lifespan (Quinn and Smolinski, 2018). Complex and changing needs require continuous assessment to maintain and improve the health and wellbeing of people with intellectual disability. Evidence-based needs assessment is more likely to result in the development and implementation of effective interventions (McCarron et al., 2018); Quinn and Smolinski, 2018; Doody, Slevin and Taggart, 2017; Delahunty, 2017; Sutherland, 2017; Nelson and Carey, 2016).
Evidence demonstrates that intellectual disability nurses undertake health screening (McCarron et al., 2018); pre-admission screening (Morton-Nance, 2015) and pre-natal screening as well as providing support in relation to diagnosis (Northway et al., 2017). Undertaking screening is an important intervention carried out by intellectual disability nurses and has potential to reduce the consequences of undiagnosed health needs that are prevalent in the population of people with intellectual disability.
Another significant intervention undertaken by intellectual disability nurses across the lifespan is care planning (Taua, Hepworth and Neville, 2012). In addition, Dahm and Wadwnsten (2008) have highlighted the importance of care planning to the delivery of effective nursing interventions. It is surprising that only two studies (Taua et al., 2012; Dahm and Wadwnsten, 2008) in this review identified and described care planning as an important intervention as an important role undertaken by intellectual disability nurses.
Other essential nursing procedures identified in the literatures are nutrition and dysphagia management (Northway et al., 2017), managing violence and challenging behaviour (Campbell, 2011), positive behaviour support (Northway et al., 2017); and development and implementation of behaviour support plans (McCarron et al., 2018). What is clear from these studies is the complexity and varied nature of the nursing interventions undertaken by intellectual disability nurses across the lifespan. This complexity requires intellectual disability nurses to be adaptable to deliver effective care to people with intellectual disability.
Several studies have identified facilitating communication as an important role for intellectual disability nurses (Oulton et al., 2019; Northway et al., 2017; Adams and Shah, 2016; Wagemans et al., 2015; Arrey, 2014). Effective interventions by intellectual disability nurses need to engage all stakeholders, and this requires effective communication (Taua et al., 2012; Wagemans et al., 2015). This communication needs to be multi-faceted and involve parents and relatives, be inter-professional, intra-agency, and inter-agency. Intellectual disability nurses are in a unique position because in most cases they are the healthcare professional with a complete picture of a person with an intellectual disability, as well as being at the centre of communication (Wagemans et al., 2015). It can be argued that effective communication is an important intervention in intellectual disability nursing practice because it underpins effective delivery of healthcare to people with intellectual disability.
Children
Intellectual disability nurses also to have skills to assess a wide range of the needs of children with intellectual disability and Northway et al. (2017) have highlighted the need for intellectual disability nurses to be involved in developmental assessments (Northway et al., 2017; Delahunty, 2017). However, this review has identified a limited range of interventions undertaken by intellectual disability nurses in this area. What emerges from this scoping review is that intellectual disability nurses need to be able to work across the lifespan, including working directly with children who often have enduring complex needs.
Interventions reported in some studies in this review include facilitating specialist clinics (Oulton et al., 2019), implementing early interventions (Mason and Phipps, 2010), and implementing control and restraint procedures in the physical management of challenging behaviours (Lovell et al., 2015). These interventions illustrate the complexity of the roles of intellectual disability nurses. However, what is not clear from these studies is the evidence-base to support these interventions, and robust evidence to demonstrate their effectiveness and impact.
Adults
Undertaking nursing procedures is fundamental to the role of intellectual disability nurses when working with adults in a wide range of settings. The literature included in this review shows that intellectual disability nurses undertake a wide range of assessment activities when working with adults including; assessing risk (Pennington et al., 2019), direct assessment (Wilson et al., 2020) undertaking focused assessment in order to avoid diagnostic overshadowing (Taua et al., 2017), receiving and assessing referrals from other services and agencies (Doody et al., 2019), undertaking pain assessments (Quinn and Smolinski, 2018), and assessing and preparing patients with intellectual disability for surgery (Drozd and Clinch, 2016). This demonstrates that intellectual disability nurses work with adults with intellectual disability who have diverse and complex needs. It is more likely that intellectual disability nurses require knowledge and competence to use a wide range of assessment tools, as well as knowledge of different and unrelated health care needs.
The studies in this scoping review show that intellectual disability nurses work with a wide range of complex needs and activities such as anxiety (Brown et al., 2016), epilepsy (Pennington et al., 2019), long-term conditions (Marsham, 2012), risk (Pennington et al., 2019), medication (Ring et al., 2018), self-harm (Mason and Phipps, 2010), family therapy and support (Mason and Phipps, 2010), psychological interventions (Mason and Phipps, 2010), behavioural interventions and support (Cleary and Doody, 2017), and building therapeutic relationships (Lovell et al., 2015). What is evident here is that intellectual disability nurses have a wide range of skills required to directly manage a wide range of complex health and healthcare needs in a wide range of contexts and settings. This may require intellectual disability nurses to constantly learn and develop new skills. The literature suggests that intellectual disability nurses may have to switch between a wide range of activities in a day’s work and are likely to require advanced multi-tasking and critical thinking skills.
Older adults
We identified a limited number of nursing procedures undertaken by intellectual disability nurses in this area, which include undertaking clinical diagnosis (Drozd and Clinch, 2016), providing environmental supports and staff training in the principles of person-centred dementia (Cleary and Doody, 2017), diagnosing mental health problems (Jenkins, 2012), undertaking assessments of mobility decline (Nelson and Carey, 2016), and undertaking dementia assessments (Northway et al., 2017). Factors such as limited employment of specialist intellectual disability nurses in older people’s care homes, along with reduced life expectancy for people with intellectual disability may contribute to this limited involvement.
End of life care
We unearthed a limited number of papers identifying interventions undertaken by intellectual disability nurses in this vital area of practice (Ng, 2011; Keenan et al., 2018; Wagemans et al., 2015). This is concerning, given the impact of bereavement on emotional and psychological wellbeing. Interventions include assessing changing health conditions and detecting deterioration (Ng, 2011), completing hospital or hospice referrals (Bailey et al., 2014), managing end of life care (Bailey et al., 2014), pressure relief and skin care (Bailey et al., 2014), bereavement counselling (McCarron et al., 2018), and facilitating communication (Oulton et al., 2019). The range of interventions require well developed direct care knowledge and skills, care co-ordination skills, as well as skills to deliver psychological support. In one sense this complexity illustrates the uniqueness of the knowledge and skills of intellectual disability nurses in relation to people with intellectual disability across the lifespan with diverse backgrounds and needs.
Enhancing impact of services
In this theme we identified 73 (47%) interventions. The interventions relate to activities where intellectual disability nurses work with other professionals and organisations, facilitating others to provide better care to people with intellectual disability.
Maternity
Only two publication identified intellectual disability nursing roles that focused on enhancing the impact and or effectiveness of maternity services (Northway et al., 2017; McCarron et al., 2018). The dearth of literature identifying interventions undertaken by intellectual disability nurses in relation to maternity is perhaps not surprising given that midwifery is a separate profession from nursing. However, intellectual disability nurses need to work collaboratively with maternity services through health facilitation and health liaison to improve access to maternity services by women with intellectual disability. Working collaboratively in this area is likely to be complex and varied. This requires intellectual disability nurses to develop a complex repertoire of knowledge and skills.
All age groups
Evidence from the publications in this review suggests that intellectual disability nurses spend a significant amount of time in their practice in roles that focus on ensuring that other professionals and services effectively support people with intellectual disability across the lifespan. The interventions we identified include; assessing effectiveness of interventions (Mafuba et al., 2018a), monitoring effectiveness of medications and treatments (Adams and Shah, 2016), providing support with the decision-making (McCarron et al., 2018), facilitating access to health services (Mafuba et al., 2018a, 2018b); Mafuba and Gates, 2015; Mafuba, 2013; Brown et al., 2012), facilitating the making of and implementation of reasonable adjustments (Cope and Shaw, 2019; (Mafuba et al., 2018b; MacArthur et al., 2015), facilitating transitions (Delahunty, 2017; Northway et al., 2017), undertaking health liaison activities (Northway et al., 2017; Morton-Nance, 2015), engaging in public health activities including health prevention (Mafuba and Gates, 2015; Mafuba, 2013), health protection (Mafuba and Gates, 2015; Mafuba, 2013) and health surveillance (Mafuba et al., 2018a; Mafuba and Gates, 2015; Mafuba, 2013; Sheerin, 2012). It is evident from these literatures that intellectual disability nurses play a significant role in enhancing the effectiveness of preventative interventions implemented by other organisations and professionals. To enhance their own effectiveness, intellectual disability nurses need to work collaboratively in improving access to mainstream services.
To further enhance the impact and effectiveness of other healthcare professionals and agencies intellectual disability nurses need to be involved in information sharing, liaise with other professionals and agencies, make, and facilitate reasonable adjustments, provide support in primary care, raise awareness on intellectual disability, and support families. This is important because intellectual disability nurses need to ensure that other professionals and healthcare agencies effectively meet the needs of people with intellectual disability. Intellectual disability nurses, therefore, they need to engage with all stakeholders at individual, community, and population levels.
Children
We found only three publications that explicitly identified roles and interventions undertaken by intellectual disability nurses to improve mainstream services for children (Marshall and Foster, 2002; Delahunty, 2017; Oulton et al., 2019). As in other areas of intellectual disability nursing practice noted earlier, the limited number studies that identified interventions undertaken by intellectual disability nurses in this area is concerning. This is important and we concur with Delahunty (2017) that interventions by intellectual disability nurses in this area are essential in enhancing the effectiveness of transition services. Intellectual disability nurses are often in more regular contact with children, they support and therefore better placed to facilitate links between children and adult services. Increasingly, in our own experiences, more intellectual disability nurses are taking on roles in school nursing services. This development is likely to improve how services respond to the healthcare needs pf children with intellectual disability.
Adults
The publications included in this review identified a wide range of interventions undertaken by intellectual disability nurses in a wide range of services. These interventions include; undertaking mental capacity assessments (Oulton et al., 2019; Drozd and Clinch, 2016), modifying mental health interventions to suit people with IDs (Taua et al., 2017), providing diagnostic advice (MacArthur et al., 2015). Providing seizure guidance to people with intellectual disability living in the community (Auberry and Cullen, 2016), providing seizure telephone triage in the community (Auberry and Cullen, 2016), ordering and interpreting investigations (Ring et al., 2018), preparing women psychologically for cancer screening (Lloyd and Coulson, (2014), developing easy to understand letters, guidelines and information (Brown et al., 2012; Marriott et al., 2015), developing health education material (Taggart et al., 2011; Cope and Shaw, 2019; Mafuba et al., 2018a; McCarron et al., 2018; Northway et al., 2017), delivering formal / informal education (Doody et al., 2017), and supporting staff to develop practice guidelines and policies (Doody et al., 2019), providing support with substance misuse interventions (Lovell and Bailey, 2016), providing support women to manage cervical screening (Marriott et al., 2015), supporting women to self-examine breasts (Taggart et al., 2011), providing behavioural advice (MacArthur et al., 2015), and monitoring and evaluating care interventions (Doody et al., 2017; Slevin and Sines, 2005), encouraging clients to make their own decisions (Llewellyn, 2005), escalating treatment pathways (Marsham, 2012), facilitating self-management (Marsham, 2012; Doody et al., 2019; Doody et al., 2017; MacArthur et al., 2015; Wagemans et al., 2015; Morton-Nance, 2015; Bailey et al., 2014; Brown et al., 2012; Marshall and Foster, 2002), match information with capacity to understand (Brown et al., 2016), consult, refer, and make recommendations to other professionals relating to client care and client care issues (Doody, 2019), and record keeping (Lovell et al., 2014), and providing leadership in improving services (Mafuba, 2013).
For people with intellectual disabilities, these interventions may mean the difference between accessing appropriate services and support. As noted earlier, intellectual disability nurses’ practice in complex environments which, are often multi-disciplinary and multiple agencies. To improve services and enhance their impact and enhancing effectiveness, intellectual disability nurses need to work collaboratively to improve access to mainstream services. This will require them to engage in creative communication (Taua et al., 2017) to enable things to happen (Llewellyn, 2005).
Older adults
We found only two publications that considered intellectual disability nurse involvement with the impact of services for older adults. This is of significant concern given the growing population of older adults with intellectual disability, who often have complex and enduring healthcare needs which require accessing a multiplicity of services. These services are often in multiple agencies and are likely to be complex to navigate. Cleary and Doody, 2017; Bailey et al. (2014) identified the intellectual disability nurse role in coordinating services in order to improve healthcare service delivery to older adults. Given the complexity of the landscape services of services for older adults in the UK, this is a vital role. Navigating service accessibility for older adults is dependent on geographical location and the complexity of the person’s morbidity. For intellectual disability nurses, matching services to the needs of the older adults they support indicate the need to undertake complex interventions involving other professionals and a wide range of agencies.
End of life care
The provision of end-of-life care for people with intellectual disabilities is complex (Morton-Nance and Schafer, 2012). The experience of end-of-life is a very individual and personal experience. Consequently, it could be argued that effective end of life care for people with intellectual disabilities necessitates the need for a person-centred approach. The intellectual disability nurse interventions identified in the literatures in this review, in some way, illustrate this necessity. The interventions undertaken by intellectual disability nurses in the literatures include; advance care planning (Wagemans et al., 2015), coordinating services (Cleary and Doody, 2017; Bailey et al., 2014), making referrals within the MDT (Bailey et al., 2014), planning for end of life (Bailey et al., 2014), shaping the nature of end-of-life care and influencing end-of-life decisions (Wagemans et al., 2015), supporting relatives and helping medical staff to make person centred decisions (Wagemans et al., 2015), and making and facilitating reasonable adjustments (Cope and Shaw, 2019; Mafuba et al., 2018a; Northway et al., 2017; Cleary and Doody, 2017; Drozd, and Clinch, 2016; MacArthur et al., 2015; Marriott et al., 2015; Morton-Nance, 2015).
Current palliative care services in the UK are fragmented (Dening et al., 2018). For people with intellectual disabilities, there is clearly a need for co-ordination of existing palliative care services for their needs to be met. Intellectual disability nurses need to undertake important interventions to address inequalities in care provision for people with intellectual disabilities who are at the end of their lives. These roles include facilitating collaborative working (Arrey, 2014), educating healthcare professionals about the needs of people with intellectual disabilities needing end of life care (Cleary and Doody, 2017; Morton-Nance, 2015; MacArthur et al., 2015; Dalgarno and Riordan, 2014; Brown et al., 2012; Slevin and Sines, 2005), finding resources for end of life care (Bailey et al., 2014), sharing information with other professionals (Mafuba et al., 2018a; Wagemans et al., 2015), and liaising with health, social care, disability services and multi-disciplinary team in primary care and secondary care (McCarron et al., 2018; Marshall and Foster, 2002). For people with intellectual disability, there is clearly a need for co-ordination of existing palliative care services for their needs to be met. Intellectual disability nurses need to undertake important interventions to address inequalities in care provision for people with intellectual disability who are at the end of their lives.
Enhancing quality of life
In this theme we identified 41 (27%) interventions. The interventions are focused on addressing the determinants of health.
All age groups
In the literatures under review the interventions we identified include; addressing determinants of health and health inequalities (Cope and Shaw, 2019; Mafuba et al., 2018a; Sheerin, 2012), advocating for people with intellectual disabilities and / or their families (Cope and Shaw, 2019; McCarron et al., 2018; Ring et al., 2018; Doody et al., 2017; Brown et al., 2016; Morton-Nance, 2015; Dalgarno and Riordan, 2014; Taua et al., 2012; Brown et al., 2012; Llewellyn and Northway, 2007; Llewellyn, 2005), enabling and empowering people with intellectual disabilities to make their own informed choices (Sheerin, 2012), educating people with intellectual disabilities and their carers about health and healthy lifestyles (Mafuba et al., 2018b; Mafuba and Gates, 2015; Mafuba, 2013; Taggart et al., 2011; Mafuba, 2009; Cleary and Doody, 2017; Morton-Nance, 2015; MacArthur et al., 2015; Dalgarno and Riordan, 2014; Northway et al., 2017; Brown et al., 2012; Slevin and Sines, 2005), promoting, enabling and supporting healthy lifestyle choices (Mafuba et al., 2018a; Cope and Shaw, 2019; Doody et al., 2019; McCarron et al., 2018; Northway et al., 2017; Adams and Shah, 2016; Nelson and Carey, 2016; Mafuba and Gates, 2015; Mafuba, 2013; Taua et al., 2012; Sheerin, 2012; Taggart et al., 2011; Mafuba, 2009; DoH, 2007; Marshall et al., 2003), training and raising awareness (Oulton et al., 2019; Doody et al., 2019; Cleary and Doody, 2017; Marriott et al., 2015; Morton-Nance, 2015; Arrey, 2014; Lovell et al., 2014; Doody et al., 2013; Taggart et al., 2011; DoH, 2007), promoting human rights to healthy life (Cope and Shaw, 2019), providing support with the decision-making about healthy lifestyles (McCarron et al., 2018), supporting social connectedness and community integration (McCarron et al., 2018), supporting individuals to remain in their home (Northway et al., 2017), supporting families (McCarron et al., 2018; Cope and Shaw, 2019; Northway et al., 2017; Bailey et al., 2014), and safeguarding of children and adults (Northway et al., 2017).
For people with intellectual disability, improving the quality of their lives is essential for their health and wellbeing. Intellectual disability nurses can contribute to this through enabling and supporting healthy lifestyle choices and by addressing determinants of health. It could be argued that maintaining people with intellectual disability in better health is an important intervention undertaken by intellectual disability nurses. This may mean that they need to engage in health improvement by supporting people with intellectual disability to develop skills to self-manage their conditions that may limit life.
Children
We found only three publications that considered intellectual disability nurse involvement with addressing the determinants of health for children (Emerson et al., 2011; Marshall and Foster, 2002; Oulton et al., 2019). This is of significant concern given the growing population of children with intellectual disability, who often have complex and enduring health needs which may impact on their ability to lead healthy and active lifestyles (Emerson et al., 2011). Intellectual disability nurses have an important role to play in mitigating the effects intellectual disability on children’s health. However, in this review we only identified continence promotion (Marshall and Foster, 2002), and provision of informal support and advice (Oulton et al., 2019) as the only interventions undertaken by intellectual disability nurses. The reason could be very well that school nursing services do not tent to normally employ intellectual disability nurses in the roles of school nurses.
Adults
Adults with intellectual disability are known to be inactive and lead sedentary lives (Messent et al., 1999). The number of interventions that are relevant to improving the quality of life of people with intellectual disabilities we have identified include; assessing people’s understanding of their needs (Marsham, 2012), developing health education material (Taggart et al., 2011), giving information and advice (Cope and Shaw, 2019; Mafuba et al., 2018a; McCarron et al., 2018; Northway et al., 2017; Doody et al., 2019; Doody et al., 2017; MacArthur et al., 2015; Wagemans et al., 2015; Morton-Nance, 2015; Bailey et al., 2014; Brown et al., 2012; Marshall and Foster, 2002), encouraging clients to make their own decisions about healthy living (Llewellyn, 2005), facilitating development of coping skills (Marsham, 2012), promoting amelioration of detrimental effects of challenging behaviour (Slevin and Sines, 2005), promoting employment (Northway et al., 2017), promoting independence (Drozd and Clinch, 2016), promoting health checks and screening, personal and sexual relationships (Northway et al., 2017), promoting resilience (Northway et al., 2017; Dalgarno and Riordan, 2014), supporting people with IDs with a history of offending behaviour to develop appropriate relationships (Lovell and Bailey, 2016), and building therapeutic relationships (Lovell et al., 2015; Arrey, 2014; Lee and Kiemle, 2014; Mason and Phipps, 2010).
Intellectual disability nurses play important roles in assessing people’s understanding of their needs, developing health education material, giving information and advice, encouraging people with intellectual disability to make their own decisions about healthy living, promoting employment, promoting health checks, and screening. Intellectual disability nurses play important roles in supporting adults with intellectual disabilities to live a physically active and healthy lives.
Older adults
None of the publications we reviewed specifically identified interventions undertaken by intellectual disability nurses in addressing the determinants of health of older adults with intellectual disability. This is a significant concern given the growing population of older adults with intellectual disability, who often have complex and enduring health needs which may impact on their ability to lead healthy and active lifestyles (Emerson et al., 2011).
End of life care
We found minimal publications that considered intellectual disability nurse involvement in enhancing the quality of life of people with intellectual disabilities in palliative care. End of life experience is likely to be physically and emotionally debilitating. Intellectual disability nurses have an important role to play in meeting the palliative care needs of people with intellectual disabilities. However, in this review we only identified assessing changing health conditions and detecting deterioration (Ng, 2011; Wagemans et al., 2015), advance care planning (Wagemans et al., 2015), and supporting relatives and helping medical staff to make decisions (Wagemans et al., 2015) as the only interventions undertaken by intellectual disability nurses with respect to Enhancing the quality of life of people with intellectual disabilities at the end of their lives.
Intellectual disability nurses have an important role to play in meeting the palliative care needs of people with intellectual disability.
Limitations
The terms of the review from the funding organisation were such that we included opinion publications. Covid-19 restrictions at the time of literature search restricted our ability to physically access some libraries. The research was concluded in March 2021 and we acknowledge that other studies may have been published since then that may add to the body of evidence in this area
Conclusions
Although there is some evidence to support the emerging themes, the literature is limited in robustness and scope. High quality research is essential in determining the impact and effectiveness of intellectual disability nursing interventions across the lifespan. The lack of evidence to demonstrate the impact and effectiveness of interventions undertaken by intellectual disability nurses pose a challenge for intellectual disability nurses and the profession, whose wider contribution is ambiguous in the wider health and social care sphere practice.
While we are conscious of the narrative nature of our review, we conclude that important lessons can be learnt to further develop and clarify the interventions undertaken by intellectual disability nurses in meeting the needs of people with intellectual disability. The interventions undertaken by intellectual disability nurses need to be understood in the context of the complexity and changing needs of people with intellectual disability, as well as the introduction of the new NMC (2018) standards for pre-registration nurse education in the UK.
Recommendations for research
Given the well documented complexity, poorer health, higher rates of co-morbidity, inequalities in health, poor access to health services and higher rates of premature mortality experienced by people with intellectual disability, research to further clarify intellectual disability nurse interventions, more specifically in relation to maternity, children, older adult, and end of life care is needed. Research need to be undertaken focusing on the impact and effectiveness of intellectual disability nursing interventions.
Recommendations for practice
Intellectual disability nurses undertake a wide range of interventions in a complex sphere of practice. Intellectual disability nurses need to develop skills to constantly adapt to meet the changing needs of people with intellectual disabilities.
Recommendations for education
There appears to be a variation within some countries and between countries as the interventions intellectual are trained to undertake. Nurse educators need to be more collaborative nationally and internationally to develop learning opportunities for intellectual disability nurses to improve their knowledge and skills as they take on new roles that involve complex interventions.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This scoping review of literature was funded by the Royal College of Nursing (RCN) Foundation, United Kingdom (Grant No. 20200217). The funders did not play any role in how it was conducted.
Ethical statement
Data Availability Statement
Raw data were generated at the University of West London. Data supporting the findings of this study are available from the corresponding author Professor Kay Mafuba (