The impact of intellectual disability nurse specialists in the United Kingdom and Eire Ireland: An integrative review

Abstract Aim To identify and evaluate the impact of Intellectual Disability Nurse Specialists person‐centred care for people with intellectual disability. Design An Integrative review of the literature was performed between January 2007–December 2017. Methods Searching the PubMed Library of Medicine, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline Ovid, PsychINFO, Health Source: Nursing/Academic edition. A total of eight articles were selected for the final study example, including four mixed methods studies and four qualitative studies. Results Three Intellectual Disability Nurse Specialist models were evaluated, and three main themes emerged: person‐centred care, organizational and practice development. Conclusion The Intellectual Disability Nurse Specialist expert knowledge and skills contribute to the development of effective systems and processes. The results highlighted the complex nature of the Intellectual Disability Nurse Specialist role and the importance of ongoing development, promotion and evaluation and their contribution to care in the healthcare setting.


| AIM AND ME THODS
The objective of this review was to systematically identify, appraise and synthesize the best available evidence for the impact of Intellectual Disability Nurse Specialists in comparison with an alternative or no intervention. The PRISMA checklist was used as a guide to the search and reporting of the results (Moher et al., 2015) ( Figure   S1). This research method extracted data in a systematic and methodological rigorous standard, aiming to synthesize investigations to support professional decision-making, improve clinical practice and reveal gaps in knowledge (Souza et al., 2010). A six-phase search strategy was used for this integrative review (Souza et al., 2010).
The review included primary qualitative and mixed methods study designs published in English, from January 2007-December 2017.
All citations and abstracts identified by the search strategy were downloaded to an Excel spreadsheet, and duplicates were identified and removed. Potential articles were screened for eligibility by title and abstract. Articles that met the inclusion criteria were independently reviewed by two authors. The articles included four qualitative studies: (Brown et al., 2016;Doody et al., 2013Doody et al., , 2016Doody et al., , 2017 and four mixed methods studies (Brown et al., 2012;Castles, Bailey, Gates, & Sooben, 2012MacArthur et al., 2015). derivatives of "People with Intellectual OR Developmental OR Learning AND Disability" (Population); "Impact of Intellectual OR Developmental OR Learning OR Clinical Nurse Specialist AND Disability Nurse" (Intervention); "General Population" (Comparison);

| Search strategy
and "Evaluation OR Effectiveness OR Person-centred care in the healthcare sector" (Outcome). Lastly, the reference lists of recent studies and reviews were searched for eligible papers that may have been previously missed.

| Eligibility criteria
The inclusion criteria established for articles selected were full

| Critical appraisal
The methodological quality of each study was assessed using Mixed Methods Study Design (Long et al., 2002). An extraction form was used to extricate relevant data comprises of ten domains: aims, methodology, study design, recruitment, data collection, researcher critical analysis, ethical consideration, rigorous data analysis, findings clearly stated and research value, with a potential score range to 100 per cent (Bettany-Saltikov & McSherry, 2016).
The scores are listed in Table S1. A further independent content analysis undertaken by the authors to analyse the outcomes of each article for data that specifically answered the aim of this review.

| Study selection
The search produced a total of 189 articles. The major headings and abstracts were scrutinized for relevance with 172 abstracts excluded in accordance with the inclusion criteria, and duplications were removed. The abstracts of the remaining 15 articles were scrutinized for relevance, by three reviewers, and read to identify eligibility applying the inclusion criteria. If there were conflicting opinions about inclusion/exclusion, the paper was discussed with supervisors (SC & KM) and the inclusion and exclusion criteria were re-applied.
This left ten research articles for further detailed assessment by two supervisors (SC & KM). The author forwarded a spreadsheet detailing research articles; title, abstract, year, reference; and study type to supervisors (SC & KM) for further scrutiny. Further two articles were removed, leaving eight articles that met all inclusion criteria. After the study selection process, eight studies were included in the integrative review.

| Characteristics of included studies
The included studies were published between 2007 and 2017 and were conducted in two countries: six in the United Kingdom and two in Éire Ireland (see Table S1). Five of the eight studies evaluated the role of the Learning Disability Liaison Nurse (Brown et al., 2012(Brown et al., , 2016Castles et al., 2012Castles et al., , 2014MacArthur et al., 2015); whilst one study evaluated the Registered Nurse-Intellectual Disability role (Doody et al., 2013); and two studies evaluated the Clinical Nurse Specialist-Intellectual Disability roles (Doody, Slevin, & Taggart, 2016, 2017.

| Participants characteristics
Study sample sizes varied from 7 to 85 (mean = 38) participants (including Intellectual Disability nurses, carers, family and health professionals). Participants varied with two reporting on interviews with 23 family/carers and persons with intellectual disability (Brown et al., 2016;Doody et al., 2017); two studies reported on interviews with 38 individuals including Registered Nurse Intellectual Disability and Clinical Nurse Specialists in Intellectual Disability roles (Doody et al., 2013(Doody et al., , 2016. The remaining four of the eight studies interviewed 242 family/carers, persons with intellectual disability and Healthcare professionals (Brown et al., 2012;Castles et al., 2012Castles et al., , 2014MacArthur et al., 2015).

| Theme Outcome analysis
From the eight peer review articles, three main themes emerged: (1) person-centred care; (2) Systems and care co-ordination; and (3) Practice Development-Professional and Client/Family education.

| Person-centred care
All studies reported that person-centred care was a significant component of the Intellectual Disability Nurse Specialists' role (Brown et al., 2012(Brown et al., , 2016Castles et al., 2012Castles et al., , 2014Doody et al., 2013Doody et al., , 2016Doody et al., , 2017MacArthur et al., 2015). This was associated with the Intellectual Disability Nurse Specialist "seeing the person rather sues played a central role in facilitating communication, especially in relation to treatment consent and patient-centred approaches (Brown et al., 2016).

| Systems and co-ordination of care
All eight studies identified that Intellectual Disability Nurse Specialists promoted and facilitated effective systems and co-ordination of care in the general and acute healthcare sectors through reasonable and achievable adjustments and policy and procedure development (Brown et al., 2012(Brown et al., , 2016Castles et al., 2012Castles et al., , 2014Doody et al., 2016Doody et al., , 2017MacArthur et al., 2015). The development of a referral service ensured that people with intellectual disability were linked with and able to access Intellectual Disability Nurse Specialist services (Brown et al., 2012;MacArthur et al., 2015).
An emphasis on reasonable and achievable adjustments ensured advanced admission preparation including; securing additional nursing resources; preparing ward staff; facilitating equipment and communication tools; advanced discharge planning; transfer from acute hospital to continuing care environment for end-of-life care; single room or group room accommodation; and private waiting areas in outpatient departments (Brown et al., 2016;Castles et al., 2012Castles et al., , 2014MacArthur et al., 2015). Intellectual Disability Nurse Specialists were found to advocate for people with intellectual disability by supporting medical teams to achieve equitable care and through treatment options based on clinical need, rather than intellectual disability (MacArthur et al., 2015). Intellectual Disability Nurse Specialists liaised with community care managers, hospital social services departments and discharge planners to assist with timely discharge (Castles et al., 2014) and worked directly with governmental services, provided greater autonomy and enabled fluid inter-agency working between and across health and social services (Doody et al., 2016).
Intellectual Disability Nurse Specialists also ensured continuity of person-centred care approaches through the development of policies, procedures and care pathways, specifically tailored to meet people with intellectual disability (Brown et al., 2012). This ensured access to National Screening programmes and quality indicator im-

| Practice development
Six of the eight studies identified that Intellectual Disability Nurse Specialists promoted and facilitated effective professional development and practice development for clients/family (Brown et al., 2012;Castles et al., 2012Castles et al., , 2014Doody et al., 2012Doody et al., , 2016. Intellectual Disability Nurse Specialists supported and enabled a range of educational and professional development programmes for health professionals that contributed to the enhancement of knowledge, skills and attitudes in caring for people with intellectual disability (Brown et al., 2012). Education and training were facilitated through a range of programmes, such as hospital induction programmes, patient experience training, nurse preceptorship, junior doctors' training, medical assessment unit training and healthcare support worker workshops (Castles et al., 2014;Doody et al., 2013Doody et al., , 2016. Also, a range of tailored training courses were developed and delivered that focused on effective communication, capacity and consent and the appropriate application of legislation to health professionals (Castles et al., 2014;Doody et al., 2013Doody et al., , 2016. Intellectual Disability Nurse Specialists also contributed to undergraduate education in local universities, whilst some offered practical placement, providing a wider learning experience for student nurses to apply theory to practice (Brown et al., 2012). Furthermore, Intellectual Disability Nurse Specialists provided a wide variety of education and training for nurses, students and others involved in caring for persons with intellectual disability through presentations, conferences, practice publications and research (Doody et al., 2013(Doody et al., , 2016. The Intellectual Disability Nurse Specialists central role also included supporting staff with education, training and advice from phonebased consultations (Doody et al., 2016).
Alternatively, Intellectual Disability Nurse Specialists promoted and facilitated effective client/family education by sourcing training and tailoring information that met the client and family's educational need (Doody et al., 2016. Their educational role included not only information delivery but also linking clients and families into courses and training that enhanced client autonomy . By tailoring education to meet the client's specific needs and interventions, the Intellectual Disability Nurse Specialist demonstrated and provided training and resources that provided valuable education and information to families (Doody et al., 2016. Intellectual Disability Nurse Specialists acknowledged that education/information provision was a major component in providing realistic expectations and planning to support clients and families' long-term goals . Nurse Specialists are unique in being the only healthcare specialist to address healthcare barriers in people with intellectual disability and enabling access to health services (Castles et al., 2014;Doody, 2017). Research identified that Intellectual Disability Nurse

| D ISCUSS I ON
Specialists are achieving person-centred care through holistic care co-ordination, as a result of knowing the person, empowering and inclusive care co-ordination (Brown et al., 2016;Castles et al., 2014).
The Intellectual Disability Nurse Specialists extensive knowledge and skill ensures tailored care that meet individual needs, whilst their "unique attitude regarding dignity, respect and personhood is the cornerstone of care" (p1117) are all aspects of person-centred care (Doody et al., 2013;McCarron et al., 2018). Their mediation and advocacy improved communication between health professionals and people with intellectual disability (Brown et al., 2016;Castles et al., 2014). This was achieved by individually adapting communication approaches by balancing information suited to the client's capacity at any given stage in their care (Brown et al., 2016;Castles et al., 2014).
The Equality and Human Rights Commission "reasonable and achievable adjustments" include three categories: Adjustments to physical features, auxiliary aids and services and adjustments to policies and procedures (Equality & Human Rights Commission, 2016). MacArthur et al., (2015) identified a fourth category relevant to people with intellectual disability specific needs, being "behavioural and emotional adjustments." Intellectual Disability Nurse Specialists are in a prime position to promote and facilitate effective systems and care co-ordination through reasonable and achievable adjustments.
The Intellectual Disability Nurse Specialists' expertise and clinical experience of working with patients with intellectual disability, with complex co-morbidities and communication issues, play a central role in facilitating communication, especially in relation to consent for treatment and ensuring patient centred approaches' (Brown et al., 2016).
A Learning Disability Liaison Nurse service ensures three key elements of reasonable and achievable adjustments: "auxiliary aids and services"; "policy and procedure adjustments" and "behavioural and emotional adjustments" (MacArthur et al., 2015). Pointu et al. (2009) research into hospital length of stay for people with intellectual disability identified that prior to the introduction of the Learning Disability Liaison Nurse, people with intellectual disability had prolonged hospital stays, which had an impact on overall health outcomes, including mortality rates. Since the introduction of the Learning Disability Liaison Nurse there have been significant reductions in length of stays (Castles et al., 2014), thus reducing complications associated with long hospital stays morbidity and mortality rates (Pointu et al., 2009). Australian baccalaureate nursing curriculum identified that over half (52%) of the Nursing schools offered no intellectual disability content (Troller et al., 2016). Of the Nursing schools that provided units of study that contained some auditable intellectual disability content, the average of 3.6 hr per unit of study was taught (Troller et al., 2016). In addition to this, research into acute care nurses' experience of nursing patients with intellectual disability identified that they felt underprepared when caring for people with intellectual disability with communication concerns (Lewis et al., 2017). This research identified failure of hospitals and staff to meet the needs of those with intellectual disability, limited knowledge and skills of staff and hospital system failures to achieve "reasonable and achievable adjustments" to care (Iacono et al., 2014). These factors identify that Australian health professionals require further education and skill development relating to intellectual disability, both in the current healthcare sector and at university level, as outlined in the WHO Global Disability Action Plan 2014-2021. As Australian authors, we note that in Australia the baccalaureate of nursing would benefit from further development of intellectual disability curriculum and/or the development of postgraduate qualifications to enhance nurse's