Nature and extent of intellectual disability nursing research in Ireland: a scoping review to inform health and health service research.

OBJECTIVES: To capture the extent and nature of intellectual disability nursing publications in Ireland.
DESIGN: Scoping review using Arksey and O'Malley approach. DATA SOURCES: Six databases (PsycINFO, CINAHL, Medline, Academic Search Complete, Scopus, Embase) were searched along with a web-based search of the eight academic institutions delivering intellectual disability nurse education in Ireland for publications indexed from the earliest available date to the 31 December 2020. ELIGIBILITY CRITERIA: Publications by an academic, practitioner or student working in intellectual disability practice or education in Ireland relating to intellectual disability nursing, care or education. DATA EXTRACTION AND SYNTHESIS: Data pertaining to type of paper/design, authors (academic/professional/student), year, collaboration (national/international), topic/content area and title were extracted from each paper. Data were analysed by two authors using Colorafi and Evans content analysis steps where data was tabulated, and a narrative synthesis undertaken.
RESULTS: The reporting of the review is in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) and PRISMA extension for Scoping Reviews Checklist. Database and web-based searching resulting 245 articles meeting the criteria for this review. Through content analysis the 245 articles were mapped onto six themes: supporting inclusion, future planning, aspects of health, interventions, education, professional development and research, and personal and professional accounts of caring.
CONCLUSIONS: This review highlights the extent and nature of intellectual disability publications by academic, practitioner or student working in intellectual disability nursing in Ireland together with opportunities for future growth and development. From the findings it is apparent that there is an ongoing need for intellectual disability nurses to define their role across the full trajectory of health provision and to make visible their role in person-family centred support, inclusion, and contributions in health education, health promotion and health management. © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

This is the first scoping review to provide a comprehensive overview of Irish intellectual disability nursing research literature.

This review was based on a comprehensive search of institutional websites and six databases.

A formal quality appraisal process was not included in the review.

Results from this review serve to advance the awareness of intellectual disability nursing research and provide guidance for future research.

While a librarian was consulted regarding the search strategy, the services of a librarian were not included in this review.

Background

It has been previously suggested that there is a deficit in intellectual disability nursing research1–4 which can be somewhat attributed to the low visibility of the intellectual disability nurse among the population of healthcare workers. Ireland and the UK remain the only countries providing a specialist undergraduate, direct entry intellectual/learning disability nurse education programme.5 Internationally different models of nurse education exist for intellectual disability such as generalist programmes with pockets of specialisation (eg, Netherlands) and inclusion in generalist programmes (eg, Australia, New Zealand, USA and Canada). In the USA, Canada and some parts of Europe a postregistration certificate and developmental disability nursing associations exist. In Ireland and the UK, students can complete a specialised preregistration branch programme in intellectual/learning disability and these programmes lead to the qualification and registration of intellectual/learning disability nurses with their national boards (Nursing and Midwifery Board of Ireland, Nursing and Midwifery Council). The debate surrounding the status of intellectual/learning disability nursing within the profession of nursing has long been argued.6 However, in the last 30 years, Ireland has witnessed many developments within the profession of intellectual disability nursing. One such development being undergraduate nurse education moving from the traditional hospital-based certificate apprenticeship model to third-level institutions providing diploma level in 1994 and moving to a 4-year degree level programme of study in 2002.7

From an Irish context the report of the Commission on Nursing8 recommended that earlier certificate and diploma educated nurses be supported to undertake postregistration education to support them to attain degree status and to preceptor future students. Building on from this report, the National Council for the Professional Development of Nursing and Midwifery (NCPDNM) was established in 1999. The NCPDNM oversaw the introduction of clinical nurse specialists (CNS) and advanced nurse practitioners posts in all areas of nursing in Ireland9–12 and the development of CNS in intellectual disability was described.13

Given the economic climate, and the focus on cost cutting measures and value for money, all agencies, services and provisions are under scrutiny and review. In Ireland a national review of undergraduate nurse education14 resulted in the development of national requirements and standards for undergraduate nursing which aligned to the Report of the Review of Undergraduate Nursing and Midwifery Programmes,15 European Union (EU) Nursing Competences16 and the continuation of the five-entry point to nursing (General, Mental Health, Children’s, and Intellectual Disability) and Midwifery.

Internationally, recent published literature pertaining to intellectual disability nursing has focused on understanding the role,17 the uniqueness of the role,18 challenges,19 practice, policy and legislative issues20 and the demographic profile of the intellectual disability nursing workforce.21 However, given the changing landscape of intellectual disability nursing, service delivery and education over the years in Ireland and the suggested lack of research, this paper aims to identify the existing landscape of intellectual disability nursing publications from Irish intellectual disability academic, practising nurses or student working in intellectual disability through a scoping review of the published literature.

Methods

The methodologically approach proposed by Arksey and O’Malley22 for scoping reviews was chosen as it enables a comprehensive and systematic process to search the literature and to establish the full range and nature of the literature published on a particular topic. This involved a five-step process: (1) identifying the research question, (2) identifying relevant studies, (3) study choice, (4) plotting the data and (5) arranging, summarising and communicating the outcomes. This was an interactive process where each step was returned to and advanced during the review.

Identifying the research question

What is the nature and extent of intellectual disability nursing research in Ireland? This question was addressed by identifying the range and extent of Irish intellectual disability nursing publications by intellectual disability academic, practisisng nurses or student working in intellectual disability in Ireland.

Identifying relevant studies

The review search was conducted in 2021 across six databases: PsycINFO, CINAHL, Medline, Academic Search Complete, Scopus, Embase. Searches were conducted in title or abstract in each database using key words, truncation and Boolean methods. String one of the searches consisted of TI OR AB (intellectual disability OR mental retardation OR learning disability OR developmental disability). String two involved TI OR AB (nurs*) and string three composed of TI OR AB (Ireland OR Irish OR Republic of Ireland). Following which the three search strings were combined using the AND Boolean operator. The search process was piloted and agreed by all authors (OD, MEB and TH). Publications up to and including the 31 December 2020 were included in the review. No attempt was made to draw conclusions or make judgement on the quality of the literature as the focus of this review was on identifying, mapping and charting the nature and extent of the literature; critical appraisal and risk of bias assessments are not required in scoping reviews.

Study choice

All results retrieved from each database search (n=442) were exported to Endnote and screened for duplicates. In order to ensure relevant publications were not missed23 24 it was decided to conduct an additional search of the nursing schools/departments. The home pages of the eight academic institutions (four universities and four institutes of technology) that deliver intellectual disability nurse education in Ireland were searched. Each institution’s Department/School of Nursing’s webpage were searched for intellectual disability lecturers and their publication profile/listed publications were checked to identify any articles relating to intellectual disability nursing, care or education not already identified in the database search process. The web search identified an additional 169 results for inclusion which were combined with the results from the databases. The dual search method retrieved 611 results which were screened with 270 duplicates removed leaving 341 for screening. The next stage involved screening titles/abstracts and verifying authors were academic, practitioner or student working in intellectual disability in Ireland, as a result 69 papers were excluded. The remaining 272 went to a full-text review and 27 were excluded as they did not relate to intellectual disability nursing, care or education, with 245 meeting the criteria for this review. The screening process was conducted by paired reviewers (OD/MEB or OD/TH) and the search process and results are shown in figure 1 and the review was reported in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews Checklist.25

Figure 1

PRISMA flow diagram. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Plotting the data

Narrative, charts, tables and diagram illustrations were used to present the data from this review. To assist plotting the data, content analysis process was conducted following Colorafi and Evans26 steps of (1) create a coding framework, (2) add codes and memos, (3) apply the first level of coding, (4) categorise codes and applying the second level of coding, (5) revise and redefine codes, (6) add memos, (7) visualise data and (8) represent the data. The data were coded by two reviewers (MEB/TH) and where disagreement occurred this was resolved by the third reviewer (OD).

Arranging, summarising and communicating the outcomes

The findings of this review were charted, collated, summarised and reported based on the researchers’ analysis of the papers that met the review criteria. In coding of the data, it was acknowledged that the code could be included in multiple themes as overlap between themes is common.27 Here a discussion took place between all authors (OD/MEB/TH) and a consensus was reached. The researchers considered how the code sat within the overall theme and charting of the data in relation to the research questions. This flexible approach to analysis allowed for ordering, coding, categorising and summarising of data to present under six themes described below and make recommendations to inform health and health service research.

Patient and public involvement

Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Results

In line with the aim and methodological process of this review, the results identify the study characteristics and six themes that were developed namely: supporting inclusion; future planning; aspects of health; interventions; education, professional development and research, and personal and professional accounts of caring.

Study characteristic

Within this scoping review 245 publications were identified (figure 2) and the top three types of published papers were quantitative research papers 82 (33.5%), discussion/practice papers 60 (24.5%) and qualitative research papers 38 (15.4%). Of note was that just over one third of papers (n=95, 38.5%) had international author representation and 148 papers (59.1%) were interprofessional authorship (figure 2).

Figure 2

Type of publications.

A total of 33 academic authors were identified within the review (figure 3) and 22 authors from a professional nursing background contributed 42 publications (figure 4). The top three academic contributions were from McCarron (n=82, 33.2%), Doody (n=50, 20.2%) and Burke (n=25, 10.1%) accounting for a total of 63.6% (n=157) of the publications.

Figure 3

Academic authors.

Figure 4

Publications by nurses in practice.

Within the papers reviewed there was one paper written by a mother in collaboration with a practising nurse and academic28 and one paper written by a sibling in collaboration with a practising nurse and academic.29 In addition, academics supported student publication papers with 13 students and 18 papers evident within the review (figure 5).

Figure 5

Student involvement in publications.

The growth of publication over the years is noted with the first publication evident from 1998 onwards and growing slowly in number during the early years with an average of three publications per year between 1998 and 2009 to a dramatic increase in the years between 2010 and 2020 with an average 18 papers per year (figure 6).

Figure 6

Publication span and volume.

Theme 1: supporting inclusion

The first theme ‘supporting inclusion’ addressed topics affecting service user inclusion (n=19). The topics focused on marginalisation, human rights, community living, employment and decision making (table 1).

Table 1

Supporting inclusion

Subthemes	Article topic area
Marginalisation	Marginalisation and sexuality52
Human rights	Human rights and housing policy53Human rights and citizenship of older adults54Physical restraint interventions55
Community living	Transition to community49 56 57Public transport58Community participation59Deinstitutionalisation60Place of residence61
Employment	Employment and occupational outcomes62Employment issues63
Decision making	Parental decision making64The right of choice65Making choices66–68Measuring choice69

Theme 2: future planning

The second theme ‘future planning’ focused on the planning of care and direction of services (n=33) across the areas of ageing, dementia care, service delivery (table 2).

Table 2

Future planning

Subthemes	Article topic area
Ageing	Challenge of ageing70A review on ageing71Needs of ageing people72Support the person who is frail73
Dementia care	Advance care planning for end of life74Multidisciplinary specialist teams and dementia clinics75Education76Research investment to enable identification and quality care provision77Developing a model of key indicators for future care78Advanced dementia care79
Service delivery	Care /service delivery in relation to specific healthcare concernsOral health80Cancer information needs81Long-term care82Mental health care83Challenging behaviours84Delivery of healthcareBest practice85Health, healthcare utilisation and access86–88Person-centred planning, health action planning89–91Workforce planning92Health inequality93Health information94–96Family support97Development of nursing quality care process metrics and indicators5 98 99Staff support100Early intervention access101

Theme 3: aspects of health

The third theme ‘aspects of health’ (n=36) encompassed mental health, dementia, emotional health, physical health and dental health (table 3).

Table 3

Aspects of health

Subthemes	Article topic area
Mental health	Mental health in people with an intellectual disability102Older adults the association of life events103Biopsychosocial factors associated with depression and anxiety104
Dementia	Down syndrome105–112Patterns of multimorbidity in older persons113
Emotional health	Self-determination and emotional well-being in older adults114Loneliness in older people115Problem behaviours among older adults116Determinants of aggression117Prevalence of aggressive behaviour118 119
Physical health	Bone health120–122Epilepsy123Nutrition124Physical activity125Urinary continence126Constipation127Mortality rate128Breast cancer and screening129–131Communication132
Dental health	Tooth loss and denture use133–135Cleaning and dental attendance136 137

Theme 4: interventions

The fourth theme ‘interventions’ (n=56) concerned direct involvement or contact with an individual with intellectual disability to manage a specific symptom/s or issue/s, pharmacological/non-pharmacological interventions and communication (table 4).

Table 4

Interventions

Subthemes	Articles
Interventions concerning direct involvement or contact with an individual with intellectual disability to manage a specific symptom/s or issue/s.	Assessment138–142Intervention of services143–147Symptom management148–165
Pharmacological interventions/medication	General medication issues166–168Drug burden169–172Polypharmacy173
Non-pharmacological interventions	Alternative therapies174 175
Communication	Communication interventions176–185Interpersonal relationships186–193

Theme 5: professional development, education and research

The fifth theme ‘professional development, education and research’ (n=57) concerned professional elements of the nursing role. The theme comprised professional development, education and research informing practice (table 5).

Table 5

Professional development, education and research

Subthemes	Articles
Professional development	The historical development of intellectual disability nursing6 194–199The role of the nurse/nurse specialist13 47 200–207Clinical skills of the nurse208Networking with the profession209
Education	Nurse registration policy210Teaching strategies211–213Undergraduate education papersClinical placement214Preceptorship and competency assessment215–217Perceptions of nurse education218–221Transition from student to registered nurse222 223Undergraduate mature students224Transferable skills and knowledge225 226Student teacher reflection227Postregistration education papersTraining needs analysis228Postgraduate education229Review of the impact of postgraduate education230Co-operative learning231
Research	Research addressing methodological issues50 232–243Research informing clinical practice244–246

Theme 6: personal and professional accounts of caring

The sixth theme ‘personal and professional accounts of caring’ (n=44) described experiences and perspectives of caring according to family, service user and nurses (table 6).

Table 6

Personal and professional accounts of caring

Subthemes	Articles
Family experience	Adaptation and resilience28 247Respite248 249Living with a family member with intellectual disability29 250Caring251 252
Service user experience	Sex and sexuality253Parents with intellectual disability254 255Pregnancy256Growing older257Service delivery inclusion258
Nurse experience and perspectives of caring	Experience of caring259–269Managerial support270Grieving271 272Family support273Transcultural care274 275Health promotion276Cocreated nursing process,277Supporting safe eating and drinking278Person-centred planning279–281Childbirth282Care burden283Palliative care/end of life284–288

Discussion

The aim of this paper was to identify the nature and extent of Irish published literature concerning intellectual disability nursing. It is evident from the findings of this review that intellectual disability nursing in Ireland is actively engaged in research and professional development. Thus, positively contributing to the individual, family, community and international body of evidence supporting individualised care provision for persons with intellectual disability and their families. The depth and breadth of research in this area identified ranges across inclusion, planning, aspects of health, interventions, personal and professional development, education and research.

The concept of inclusion seems to be an increasing focus of research and the importance for the service user to have their voice heard in the development of inclusion and service provision in this area is unchallenged. The intellectual disability nurse is well positioned to advocate and address at local and national level the challenges that prevent this from being a reality and he/she can be the voice of the service user in service provision, service direction, research and policy.17 18 From this review, it is evident that there is a breadth of literature concerning service planning. However, many of the papers identified provided a retrospective view and further research and publications are warranted as to what type of service and support people with intellectual disability and their families require into the future and what may be needed to enable the person to self-actualise.

Historically, young people have been cared for in residential congregated care settings, however, this is no longer the case as the current focus is care within the family.30 In tandem with this intellectual disability nursing is evolving into the community and the family home, necessitating a need to focus on the future in line with service provision where the focus is no longer solely within congregated settings.7 This review highlights that the literature on the family experience of caring for and living with an individual with intellectual disability is scarce, only seven papers in this review focus on the experience of caring in the family home from the perspective of family members. This is of concern given the changing landscape of care for individuals with an intellectual disability from congregated settings to family-based/community-based care and the need for support.20 31 However, a prime opportunity exists for intellectual disability nursing to showcase and make visible their support and interventions with families who are constantly advocating for additional support and services in the community.18 32 This can be evidenced in practice-based publications and can be built on through research relating to nursing interventions.33 Such endeavour would ensure an alignment with national policies including the development of graduate to advanced nursing and midwifery practice34 and health service plans.35 36 In addition, such an approach facilitates the effective use of nursing resources, improving outcomes for services and service users and supports service redesign to be responsive and accessible to the population health needs of individuals with intellectual disability. Commencement of this was evident from this review highlighting that intellectual disability nursing research activity has begun to look to the future.

While physical health is of major importance and its interventions can be clearly articulated, mental health issues, though of equal import, are less easily identifiable but also less evident in the literature within this review. This might be due to the early development of health services and intellectual disability services in Ireland being predominantly religious based and operating on the fringes of the wider health service. However, within this transitioning background of service provision intellectual disability has become more integrated within the national health services and as a result it can be anticipated that greater collaboration, interventions, research and publications across all areas of healthcare will become increasingly evident. This is significant given the strong association between mental health and intellectual disability, it is widely accepted that dual diagnosis for mental health issues for example, anxiety and depression are common diagnoses within the sphere of intellectual disability and these individuals experience numerous barriers in accessing metal health care.37 38 In early 2021, Ireland launched a new service model39 to address service development for people with intellectual disability experiencing mental health issues. This presents a clear opportunity for both intellectual disability and mental health nursing and other health services to engage in collaborative working across services to provide consistency, continuity and a seamless service in the overall improvement of service provision for people with intellectual disability and their family carers.38

This review points to the direct involvement of intellectual disability nurses in interventions that support the health, well-being and enablement of people with intellectual disability. However, there is also evidence that opportunities exist to further investigate the role of the nurse in person-centred care, delivery of interventions, assessments, models of care and other areas of care including the effects of pharmacological and non-pharmacological interventions. This review also highlights the specific skill set of the intellectual disability nurse in communicating and supporting the person with intellectual disability and the multidisciplinary team (MDT) through design and delivery of communication interventions. The significant support and/or consultations afforded by intellectual disability nurses to other care professionals interacting and providing care to persons with intellectual disability was also in evidence in this review. Within the wider literature it is apparent that other healthcare professionals experience difficulties in working with individuals with intellectual disability as they often lack knowledge, communication skills, experience and confidence.40 41 However, the expertise of the intellectual disability nurse is poorly championed and this needs to be addressed given the complex needs of people with intellectual disability.42

The findings from this review highlight the paucity of studies that address and report on the actual role of intellectual disability nurses in their interactions with service users and their families in the community. This provides a clear scope for the leaders and practitioners in intellectual disability nursing to create opportunities to highlight their role and report their interventions.43 44 Given that this has not occurred to date, there may be a need to value such endeavours within practice and practice leadership and to collaborate with their intellectual disability counterparts in third level institutions. However, the current absence raises the question as to whether intellectual disability nurses have been undervalued or indeed have undervalued themselves and their role. A consequence of this may be the missed opportunities to be at the table where decisions are made45 and effectively contribute to the direction and destiny of intellectual disability nursing and healthcare provision in Ireland.

As a nursing discipline, intellectual disability nursing is a small sub-group within healthcare provision. Thus, there is an onus on intellectual disability nurses to assume a leadership role7 and make their contribution visible.46 47 This has never been so important given the dramatic changes in service provision within the wider context of healthcare delivery.48 Mindful of the size of the specialty of intellectual disability nursing (6.75%) within the overall branch of nursing and the fact that intellectual disability nurses are only in existence in Ireland since 1962, the transition of services from the fringes to mainstream healthcare49 is ongoing. The nature, extent and base of intellectual disability nursing research in Ireland has developed especially in recent years illustrating that the profession has a central role in the education, promotion and management of the health and well-being of the intellectual disability community. However, the topics noted in this review, while diverse and worthwhile are generally descriptive or retrospective in nature. Thus, further research and publications are warranted regarding the interventions and evaluation of interventions delivered by intellectual disability nurses in the community.

To address this into the future, there is a need for the profession of intellectual disability nursing to engage in research be it, evaluations providing useful lessons for service development, qualitative inquiry to create insight and stimulate changes in practice, quantitative research such as pre–post measures or randomised controlled trials to indicate effectiveness of interventions. While the authors of this paper advocate for greater research it is important to acknowledge the challenges associated with research in this area including a lack of funding, absence of an intellectual disability arm in population studies and issues in researching vulnerable populations. However, these limitations need to be considered in terms of the debate concerning inclusion versus exclusion in research.50

Overall, this review identifies a need for greater innovation and for intellectual disability nurses to carve out their role within the evolving healthcare environment of the intellectual disability community, highlighting their coordination, case manager and champion roles in supporting people with intellectual disability and their families. In addition, their therapeutic role and interventions within health and social care services in the primary, community, home, specialist or acute care setting needs to be emphasised, demonstrated and published to inform best practice as internationally there is a lack of a skilled educated workforce.51 It is evident from this review that the registered nurse in intellectual disability (RNID) has a wealth of knowledge and expertise that should not be lost or hidden. To underestimate and undervalue their role would be to the detriment of the health and well-being of the individuals with an intellectual disability, the communities in which they live and work and for the intellectual disability nursing profession.

The authors acknowledge that limitations to this review exist in the sense that it only aims to scope the extent and nature of the research in Ireland and that database searching only identified a limited number of results. This may be due to the search parameters or indexing issues. However, to counteract this limitation the websites of third level institutes providing intellectual disability nurse education were also searched. Within this search it was noted that on some of these website’s the credentials of staff and/or publication lists were not always visible. In addition, while a librarian was consulted regarding the search strategy their services were not included in this review.

Conclusions

This review provides information as to the nature and extent of intellectual disability research in Ireland. In so doing, the review highlights a prime opportunity for intellectual disability nurses to define their role and contribution now and into the future in supporting people with an intellectual disability, their families and other healthcare professionals across the full extent of healthcare provision. This is key in a time of major change in service provision for people with intellectual disability in Ireland. The shift in healthcare service delivery places the intellectual disability nurse role within primary and community care teams. To define this changing role, the profession of intellectual disability nursing needs to focus on making their support and interventions around health education, health promotion and health management more visible. This increased visibility together with the intellectual disability nurses’ empirical knowledge will ensure the profession’s survival long into the future.