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Communication
Original research
Reasonable adjustments for people with intellectual disability in acute care: a scoping review of the evidence
  1. Mairead Moloney1,
  2. Therese Hennessy1,
  3. Owen Doody2
  1. 1Department of Nursing and Midwifery, Faculty of Education and Health Sciences, University of Limerick, Limerick, Ireland
  2. 2Department of Nursing and Midwifery, Faculty of Education and Health Sciences, Health Research Institute, Health Implementation Science and Technology, University of Limerick, Limerick, Ireland
  1. Correspondence to Dr Owen Doody; owen.doody{at}ul.ie

Abstract

Objectives People with intellectual disability are vulnerable in terms of health service provision due to increased comorbidity, higher dependency and cognitive impairment. This review explored the literature to ascertain what reasonable adjustments are evident in acute care to support people with intellectual disability, ensuring they have fair access and utilisation of health services.

Design Scoping review.

Setting Acute care settings.

Methods Five databases were systematically searched to identify studies that reported on the implementation of reasonable adjustments. Authors worked in pairs to screen studies for inclusion, data were extracted and charted and findings were synthesised according to content and themes.

Results Of the 7770 records identified, six studies were included in the review. The volume of evidence was influenced by specific inclusion criteria, and only papers that reported on the actual implementation of a reasonable adjustment within an acute care setting were included. Many papers reported on the concept of reasonable adjustment; however, few identified its applications in practice.

Conclusions The scoping review highlights a lack of research on the practice and implementation of reasonable adjustments within acute care settings. There is a need for increased support, education and the provision of intellectual disability specialists across acute care settings.

  • health services administration & management
  • medical ethics
  • organisation of health services
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi-org.ezproxy.u-pec.fr/10.1136/bmjopen-2020-039647

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    Strengths and limitations of this study

    • The review design allowed for a broad review of published literature.

    • The review focus was solely on reasonable adjustments in acute healthcare settings.

    • Only English language research were included in the review.

    • A formal quality appraisal process was not included in the study.

    • The review highlights evidence of reasonable adjustments made in acute care settings.

    Background

    The WHO identifies intellectual disability as a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence), resulting in a reduced ability to cope independently (impaired social functioning), and which occurs before adulthood with a lasting effect on development.1 Disability is not conceptualised based on a person’s level of ability but rather the extent to which environmental factors support the person’s participation and inclusion in society1 or the socially constructed barriers that limit a person’s everyday activities.2 Such barriers are clearly evident within healthcare structures, and some healthcare professionals lack the specific knowledge, skill and education to provide a person centred service to people with intellectual disability.3 Such a deficit creates a gap between the health needs of people with intellectual disability and service provision.4 To address such deficits, it is advocated that reasonable adjustments are made to clinical policies and practices to ensure that people with intellectual disabilities and other disadvantaged groups are treated equitably with regard to healthcare access and provision.5–8 Reasonable adjustments are positive measures that can be implemented at an organisational, system or individual level to address the healthcare inequalities experienced by people.6

    At an individual level, people with intellectual disability experience poorer health,9 10 have complex needs,11 12 greater comorbidities,13 14 present more often for treatment,15 16 experience increased polypharmacy17 18 and die younger19 20 compared with the general population. At an organisational and system level, people with intellectual disability experience greater health disparities21 22 which results in unmet health needs,23 24 as health service providers are often ill-prepared and ill-equipped to support people with intellectual disability. In addition, healthcare professionals’ inadequate knowledge and stereotypical-based attitudes contribute to the experience of health discrimination.25 26

    Despite international recommendations,27–29 people with intellectual disability remain largely invisible to routine data collection and analysis in research studies.30 Seeking to address such inequalities is essential of any modern healthcare system, and the United Nation’s (UN) Convention on the Rights of Persons with Disabilities31 requires countries and parties of the state to recognise that people with intellectual disability have the same rights to enjoy to the highest attainable standard of health without discrimination. The UN convention along with National Equality or Disability Acts places a responsibility on all public services, including acute hospitals, to make reasonable adjustments to ensure that people with intellectual disability are not disadvantaged.32

    Despite legislation, policy and practice guidelines, people with intellectual disability continue to experience many barriers to accessing services,33 including required healthcare.5 34 Such barriers include: structural barriers (eg, physical access to buildings and transport issues), financial barriers (eg, affordable medicines), and attitudinal barriers (eg, failure to understand and listen to the person with intellectual disability).5 In addition, despite many initiatives undertaken to address Mencap’s groundbreaking report in the UK,25 people with intellectual disability continue to have poor experiences during admissions to acute hospitals.35 Insufficient evidence is available regarding initiatives that have been implemented and their effectiveness.36 One such initiative is the use of ‘passports’, Atkinson37 and Northway et al38 have identified that passports can improve quality of care within intellectual disability services. However, similar research regarding the use of passports is lacking within acute care.

    Within acute care settings, healthcare professionals acknowledge that they experience difficulties in truly hearing and listening to people with intellectual disability resulting in an inability to adequately meet their healthcare needs.39 It is essential that all healthcare professionals, including nurses, are able to anticipate and support the holistic needs of people with intellectual disability in the acute care setting.40 Holistic healthcare is central to the practice of caring where the person should be the focus, giving attention to the context in which the person lives, including their family, community and culture.41 The humanistic approach to nursing care is evidenced in person-centred practice, where each person should be assessed and treated on an individual basis and their care centred on their needs rather than the needs of the service.42 Person-centred care and the rights of people with intellectual disability can be supported within acute care settings through the adoption of reasonable adjustments, as far as possible, ensuring people with intellectual disability receive equitable and appropriate healthcare provision.

    As reasonable adjustments are intended to overcome the disadvantage experienced in accessing and receiving services/care, adjustments must be made to ensure a person with intellectual disability receives the same level of care provided to others. Reasonable adjustments can occur at system and individual levels. System-level reasonable adjustments include strategic approaches for addressing barriers that could potentially impede people with intellectual disability from accessing a service,43 such as wheelchair accessibility, accessible information, colour-coded signage, access to interpreters or use of health passports. There are many factors that can influence the adoption of reasonable adjustments in practice such as: the ability of the organisation to align the intervention with the person’s needs; the practicability of making the change; the size of the organisation; the cost and resources needed; and whether any changes have already been implemented.6 Individual-level reasonable adjustments are specifically tailored to a person with intellectual disability, which can be identified through assessment and/or discussion with the person, their family or General Practitioner (GP).6 Acknowledging the importance of supporting the holistic needs of people with intellectual disability using a person-centred approach to care and the fact that no review of reasonable adjustments for people with intellectual disability were found by the authors, the focus of this scoping review of the literature is to identify evidence of individual level reasonable adjustments in acute care settings.

    Method

    A scoping review methodology was chosen due to the broad, multifaceted nature of intellectual disability. Scoping reviews provide an overview of the topic and describe the efforts of available research and thus identify gaps in the literature.44 The review was defined by the following question ‘what reasonable adjustments are evident in acute care for people with intellectual disability?’. The authors were guided by the Joanna Briggs Institute Methodology45 process for scoping reviews. Inclusion criteria were set (table 1), and a search strategy was developed (table 2). Searches were conducted across five databases; MEDLINE, CINAHL, Academic Search Complete, PsycArticles and PsycINFO (OD) to identify papers on the topic. Search strings were developed (table 2), and search words were used in title and abstract screening for S1 and S2 using the Boolean operator OR (OD). Search 3 combined S1 and S2 using the Boolean operator AND (OD). Papers included for full-text review were checked for citations using the forward and backward chaining process to identify any additional papers for inclusion. Within the search process all records were exported to Endnote X9 (Clarivate Analytics, Pennsylvania, USA) and duplicates removed (OD). Titles and abstracts were then screened by two reviewers independently (OD and TH) against the inclusion criteria. The remaining papers were then retrieved for full-text review by paired reviewers working independently (OD, TH and MM) and reasons for exclusion were recorded and reported (figure 1).

    View this table:
    Table 1

    Inclusion/exclusion criteria

    View this table:
    Table 2

    Search process

    Figure 1
    Figure 1

    PRISMA 2009 flow diagram.91 PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

    Any differences between reviewers at each stage of the process were resolved through discussion or with the third reviewer. Data were extracted from papers included in the scoping review using a data extraction tool developed by the reviewers (table 3) and used to present data in tabular form. Finally, a narrative synthesis is presented in the findings in order to present/chart the results as related to the review question to portray the current evidence of reasonable adjustments for people with intellectual disability in acute care settings. This review is reported in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist.46

    View this table:
    Table 3

    Data extraction

    Patient and public involvement statement

    Patients or the public were not involved in the design, conduct, reporting or dissemination of this review.

    Results

    Included studies

    Figure 1 contains a PRISMA flow chart of the screening process, database searches identified 7767 records across five databases, with a further three identified from other sources totalling 7770. After duplicates were removed 3803 records remained for title and abstract review. Following title and abstract screening, 19 records were retained for full-text screening of which six studies met the inclusion criteria for this scoping review.

    Study characteristics

    Table 3 provides a summary of the included studies. Of the six included papers one was from Australia (16.7%) and the remaining five were from the UK (83.3%). The papers were published between 2010 and 2019, with three papers (50%) published in the last 5 years. Two (33.3%) papers used mixed methods, one used qualitative (16.7%) and the remaining 3 (50%) were discussion papers that presented a case/s where reasonable adjustments were made.

    Evidence of reasonable adjustments

    Within the review, individual-level reasonable adjustments were evident prior to and during attendance at the acute hospital. Prior to admission, there was evidence of the person with intellectual disability been accommodated through a preadmission visit,7 47 being provided with a tour of the hospital/unit47 and an introduction to healthcare professionals who would be involved in their care.47 At an individual level, there was evidence of a preparatory visit to the individual’s home by an anaesthetist and a surgeon to prepare an admission plan6 and conduct a preoperative assessment and other relevant risk assessments.6 This visit led to further individual level reasonable adjustments where the person was sedated at home prior to being transferred to hospital for their surgery.6 Other preparatory individual level reasonable adjustments identified in the review include: modification of appointment times and theatre lists,7 8 extended time allocation for procedures to accommodate communication needs47 and/or the facilitation of early morning appointments to avoid crowds and reduce waiting time.34

    During the hospital visit or stay, many individual-level reasonable adjustments were evident for people with intellectual disability. These adjustments occurred to support the person during the waiting process, communication process and procedure process. Waiting processes were supported through the provision of side rooms,7 a quiet area8 and a bleep to allow the person the opportunity to move about freely while waiting to be called for their appointment/procedure.34 In supporting the communication process, hospital/healthcare passports/communication books were used.7 48 Within the process of care, individual-level reasonable adjustments were evident where the location of induction of anaesthesia was considered,8 location of recovery was considered8 and the provision for parents to stay7 and parent/carer to be present at the recovery room.8 Other interventions noted were the provision of a low bed7 and availing of the opportunity for routine investigations to be carried out while the person was sedated, for example, routine blood tests and dental check6 or multiple interventions were coordinated while under one anaesthetic.7 Early discharge policies were also evident.47 It is noteworthy here that a fundamental commonality to all papers that reported evidence of reasonable adjustments in practice was the presence of a person or a healthcare professional who had special expertise in intellectual disability. Within this review, these people were identified as an intellectual disability ward champion,48 a practice development nurse for people with intellectual disability and a learning/intellectual disability liaison nurse who provided training to hospital staff.34

    Discussion

    This is the first review to specifically explore the evidence regarding the implementation of reasonable adjustments for people with intellectual disability within the acute care setting. Within this review, six papers were synthesised, and the evidence generated suggests that while there are publications regarding the need for reasonable adjustments and the associated enablers/barriers to implementation, there is a paucity of evidence about the actual implementation process or evaluation of reasonable adjustments for people with intellectual disability. The lack of international evidence explicitly reporting on the implementation of reasonable adjustments supporting people with intellectual disability within acute healthcare settings is discerning. Despite international policies advocating to reduce barriers and discrimination, the findings from this review indicate that there is a need for health services and professionals to highlight and make visible their contribution to healthcare for people with intellectual disability. A clear message from the literature is that where reasonable adjustments were made for an individual, positive outcomes were evident for all concerned (table 4 summary of evidence). However, while perceived positive outcomes can be identified, there is little information on the actual implementation and evaluation process, and given the requirement to meet the explicit needs of people with intellectual disability within the care process, there is an opportunity for healthcare professionals to contribute to the body of knowledge and identify any reasonable adjustments they make in practice. The strengths of this scoping review are the systematic nature of the search, the data extraction process, the broad review question and inclusion criteria that allowed for a wide range of papers to be included. The primary limitation of this review was the inclusion of English language papers only and a time restriction of publications from the year 2006 onwards, which was chosen to reflect the publication of the UN Convention.31 In addition, the broad terms used in the search strategy may have limited the results, for example, the inclusion of attention deficit hyperactivity disorder and autism in the search may have yielded additional papers. However, the broad terms used such as ‘learning disability’ and ‘developmental disability’ may have incorporated these results. Key to discussing the findings of this review is considering the wider literature and implications for policymakers, practitioners and researchers. While reasonable adjustments are positive measures that can address health inequalities, they need to be supported at an organisational, system and individual level spanning the planning, delivery and evaluation stages.6

    View this table:
    Table 4

    Summary of evidence

    It is evident in the literature that one of the major barriers to the provision of reasonable adjusted care is the lack of systematic identification and flagging of people in the system,49 which focuses on the adjustment needed rather than the disability or condition.50 51 Identifying and flagging the ‘need for reasonable adjusted care’ rather than flagging the ‘individual with a disability or condition’ may be a more appropriate action for healthcare professionals in the provision of individualised effective safe care for vulnerable people.51 Such an approach has the potential to positively influence healthcare outcomes for other vulnerable populations, for example, people with adaptive functioning resulting from head injuries, dementia or severe mental health illness.52

    While a robust identification system would go some way to addressing the lack of implementation of reasonable adjusted care, at a practical level, it must also be acknowledged that people with intellectual disability require very specific supports, for example, extended consultation times or prehospital visits.43 53 It is evident within the literature that healthcare professionals often lack specific knowledge and understanding of intellectual disability and have limited experience of working with this population.54 55 This lack of knowledge and inexperience can give rise to negative attitudes56 57 and misconceptions58 59 that often lead to fear of caring for people with intellectual disability.60 61

    The lack of experience39 62 and contact with people with intellectual disability61 63 is further compounded by communication issues when the healthcare professional encounters a person with intellectual disability.39 64 Lack of knowledge and understanding of intellectual disability39 63 is reinforced by limited education on intellectual disability during undergraduate and postgraduate education.65 66 This raises the issue for healthcare educators to develop and deliver educational programmes that address intellectual disability and reasonable adjustments within healthcare delivery. One approach to addressing this educational deficit would be the meaningful inclusion of people with intellectual disability and their advocates in healthcare professional education design, delivery and evaluation.67–69 Such an approach holds the possibility of benefiting both the person with the disability and the learner70 in terms of increased knowledge and understanding and in challenging stereotypes.71 72

    These issues are pertinent given the changing landscape of intellectual disability services in recent years with a shift from institutional care to a community care model.73 74 Thereby, people with intellectual disability now access care through mainstream health services, and this has impacted on issues such as health disparities,38 health inequalities75 and health outcomes.76 Within this changing landscape of service provision,77 78 it is essential that healthcare professionals can anticipate and support the holistic needs of people with intellectual disability.6 This calls for a care approach that is truly person centred and tailor made as opposed to the one-size-fits-all approach that has served this population poorly to date.77 79

    It is abundantly clear that reasonably adjusted care is a necessary component of a modern healthcare service for people with intellectual disability. This review highlights that the key to successful care provision for people with intellectual disability in acute healthcare services lies clearly with the presence of skilled, knowledgeable and experienced professionals with a background in intellectual disability. There is a growing body of evidence that this expertise can be provided through the provision of a liaison intellectual disability nursing role within the acute care setting.34 76 The intellectual disability nurse has a unique transferrable skill set that could positively impact on care in the acute setting for people with intellectual disability and support the reshaping of healthcare provision.80–84 It is clear within this review that when liaison did occur it was positively received, evaluated and successfully contributed to care.85 86 Such a means of collaborative working could assist in addressing some of the knowledge deficits and education needs described.76 87 Collaborative working has the potential to reduce fragmentation of services and improve continuity and consistency of care, thus increasing patient safety, reducing risk and improving patient outcomes.88 89

    Thereby, based on the evidence, we advocate for the implementation of reasonable adjustments to promote equitable and optimum healthcare and to avoid compounding health inequalities for people with intellectual disability. Systematic identification, monitoring and recording of reasonably adjusted care is crucial. Healthcare managers working collaboratively with liaison intellectual disability nurses and other stakeholders can take the lead to promote and support the identification and implementation of reasonable adjustments throughout the entire acute hospital care experience, ensuring healthcare equity and improved healthcare outcomes for people with intellectual disability.6 7 36 38 90

    Conclusion

    It is important that the healthcare needs of people with intellectual disability are met across the continuum of healthcare provision, including acute care settings.6 However, people with intellectual disability are experiencing hardship accessing and receiving acute care, and international evidence regarding health inequalities experienced by this population is abundant.38 To address such inequalities, reasonable adjustments need to be addressed and implemented. They should be anticipatory and person centred, meaning that measures are taken in advance to ensure that each person’s individual needs are met, thus enhancing care for vulnerable people such as people with intellectual disability.34 As evidenced in this review, the data are scarce, and it appears that research in this area remains largely at the point of identifying what needs to be adjusted rather than reporting evidence of actual implementation. However, the research does highlight the value of the liaison intellectual disability nursing role and service user input in influencing the provision of individualised, equitable and accessible healthcare. In support of a gold standard of healthcare that aligns with international policy, it is imperative that service providers, healthcare professionals and service users actively engage to identify, develop and implement reasonable adjustments within acute healthcare settings.

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    Footnotes

    • Contributors OD initiated the discussion with the other authors, and all authors developed the search process and criteria. OD conducted the search and exporting of results to Endnote. Results were screened by paired reviewers independently (OD/TH and OD/MM) and data extracted by each reviewer and verified by a second reviewer (OD, MM and TH). All authors contributed to the data analysis and synthesis and provided critical feedback and helped shape the review, analysis and manuscript. OD took the overall lead in writing the manuscript, and all authors agreed on the final submission.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement All data relevant to the study are included in the article.