| Literature DB >> 33619184 |
Mairead Moloney1, Therese Hennessy1, Owen Doody2.
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.Entities:
Keywords: health services administration & management; medical ethics; organisation of health services
Year: 2021 PMID: 33619184 PMCID: PMC7903074 DOI: 10.1136/bmjopen-2020-039647
Source DB: PubMed Journal: BMJ Open ISSN: 2044-6055 Impact factor: 2.692
Inclusion/exclusion criteria
| Include | Exclude | |
| Participants | Persons with intellectual disability. | Non-intellectual disability population. |
| Timeline | January 2006 to 30 March 2020. | Prior to 1 January 2006 (UN Convention). |
| Concept | Papers that identify a reasonable adjustment made for a person/s with intellectual disability. | Papers that fail to identify a reasonable adjustment made for a person/s with intellectual disability. |
| Context | Acute inpatient care setting. | Outpatient clinics or screening procedures. |
| Language | Papers publishes in English. | Non-English papers. |
| Types of studies | Quantitative, qualitative, mixed methods study and papers that present a case study. | Literature reviews, discussion and opinion papers with no evidence of reasonable adjustment made. |
Search process
| Search | Terms | Field |
| S1 | intellectual disabilit* OR mental retardation OR learning disabilit* OR developmental disabilit* | Title OR Abstract |
| S2 | reasonable adjustment* OR reasonable accommodation* OR access* | Title OR Abstract |
| S3 | S1+S2 |
Figure 1PRISMA 2009 flow diagram.91 PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
Data extraction
| Author/s, year, title, country | Aim/focus of paper | Methodology/ design | Sample | Data collection | Analytical approach | Reasonable adjustment evident | Summary of findings | Implications |
| Brown | To investigate the impact and outcomes of Learning Disability Liaison Nursing (LDLN) services on the healthcare experience of people with intellectual disability attending for general hospital care across four Scottish NHS boards. | Mixed-methods study. | Participants (n=85) including people with intellectual disability (n=5), carers (n=16), primary care health professionals (n=39), general hospital professionals (n=19) and learning disability liaison nurses (n=6). | Documentary analysis of 323 LDLN service referrals over an 18-month period. | Quantitative data – SPSS V.17.0. | Individualised care approaches supporting staff to make reasonable adjustment to routine practice, for example, providing first appointment, quiet waiting areas. | The referral patterns closely matched the known health needs of adults with ID: neurological, respiratory and gastrointestinal issues. | Findings highlight the importance of supporting and promoting the LDLN role. |
| Qualitative data collected via individual semi-structured interviews and focus groups with key stakeholders. | Qualitative data –thematic analysis (Boyatzis, 1998). | Some reasonable adjustments were outside of standard practice but were managed well for example, location of induction of anaesthesia and recovery. | The LDLN role impacted on three areas – clinical patient care, education and practice development, strategic organisational development. | Finding were used to develop a conceptual model incorporating seven elements and three dimensions to the LDLN role. | ||||
| The LDLN service was valued by all stakeholders with the view that it had a constructive impact on the care of people with ID. | ||||||||
| Heslop | To describe examples of how three healthcare services have met the Equality Act 2010 duty to make reasonable adjustments for disabled people, so that they are not disadvantaged in accessing these services. | Not stated. | Not stated. | Not stated | Not stated. | An individual-level reasonable adjustment is described for a person with intellectual disability requiring surgery who would not travel to hospital, the following reasonable adjustments occurred. | The examples discussed in the article illustrate how the provision of reasonable adjustments at both system level and individual level can be achieved. | The provision of two reasonable adjustments in this paper were system level and involved outpatient services (abdominal aortic aneurysm and bowel screening). They were not included as not acute care. |
| Descriptive paper. | Research team and workshop participants’ coauthored paper providing a description of ‘system-level’ and individual-level’ reasonable adjustments, which were previously discussed by the authors at four workshops in Bristol and Leeds. | A home visit by the anaesthetist and surgeon. | The third example was the provision of an individual-level reasonable adjustment involving the need for surgery in acute services and therefore is included. | |||||
Admission plan | The provision of reasonable adjustments can be system-level and/or individual-level. | |||||||
Preoperative assessment and relevant risk assessments completed at home. | ||||||||
The person was sedated at home before being transferred to hospital for surgery. | ||||||||
It was arranged to have several routine investigations carried out while the person was sedated, for example, routine blood tests and dental check. | ||||||||
| Marsden and Giles (2017) | To examine the challenges in caring for people with intellectual disability and develop a framework for making reasonable adjustments for people with intellectual disability in hospital. | Discussion paper with a practice-based case study and framework for RAs presented. | One case of a people with intellectual disability. | N/A presentation of a case. | N/A presentation of a case. | Practice development nurse for people with intellectual disability alerted via an app for Apple devices. | The flagging of a person with intellectual disability on a patient administration system’s special register allows early engagement. | Early engagement and planning are important to success. |
| Hospital Communication Book. | Person was able to effectively communicate his preferences using the communication book. | The 4C framework assists in delivering person-centred, safe, and effective healthcare to people with intellectual disability. | ||||||
| My Healthcare Passport. | The use of communication support assisted healthcare professionals to assess the persons’ understanding and capacity. | Communication RA may assist in capacity assessment but the process of not deciding to have an uncomfortable procedure vs an informed decision may need consideration. | ||||||
| Intellectual disability ward champion. | ||||||||
| Phillips (2019). | The aim of the paper was to consider what reasonable adjustments can be made in hospital and features two real-life case studies. | Discussion paper with two practice-based case studies presented. | Two cases of people with intellectual disability. | N/A presentation of two cases. | N/A presentation of two cases. | Preadmission visits; hospital passport; communication book; being first on the theatre list; having a carer present in the anaesthetic and recovery room. | When staff are aware of an expected admission preplanning can occur, for example, phone call, identify prior experience, facilitate visit and meet staff, photographing of the area and procedures for the person’s communication book. On the day of the appointment, the person met with learning disability liaison nurse (LDLN), communication book was used, and staff introduced themselves and person was supported by their carer. | RAs need to be made across the person’s journey not just at one point. |
| Hospital passport; side room; allowing both parents to stay; providing a low bed; multiple interventions under one anaesthetic. | Hospital traffic light assessment prior to admission. Phone call from the LDLN prior to admission. Individual adjustments considered. Coordinated other services so as all current health needs and procedures to avoid additional further hospital admissions. | Collaborative approached needed. | ||||||
| RA valued and supports safe effective person-centred care. | ||||||||
| Early engagement and planning are important to success. | ||||||||
| Tuffrey-Wijne | To identify the factors that promote and compromise the implementation of reasonable adjusted healthcare services for patients with intellectual disability in acute National Health Service (NHS) hospitals. | Mixed-methods study involving qualitative and quantitative data. | Total participants n=1251 | Questionnaires Interviews | An analytic framework derived from the conceptual framework was used to analyse the qualitative and quantitative data. | 15 examples of reasonable adjusted health services were provided in the article, some examples below (not all 15). | Delivery of reasonable adjustments are haphazard. | >6 years old. |
| Staff questionnaires (n=990). | Data management system QSR NVivo 9. | LDLN providing training for hospital staff. | Major barriers: lack of effective systems for identifying and flagging patients with intellectual disability, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments and lack of allocation of additional funding and resources. | Further research needed that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications. | ||||
| Staff interviews (n=68). | IBM SPSS statistics V.19. | Patients with intellectual disability were given a bleep so they did not have to wait in the small waiting area. | Key enablers were the intellectual disability liaison nurse and the ward manager. | The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. | ||||
| Interviews with adults with intellectual disability (n=33). | A patient with intellectual disability was given an early morning appointment. | |||||||
| Questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disability. | ||||||||
| Expert panel discussions (n=42). | ||||||||
| Webber | To report on the hospitalisation experiences of older adults with intellectual disability living in group homes. | Qualitative paper. | n=55 | Face-to-face interviews. | In keeping with a theory generating approach, interviews were subject to axial and selective coding. | Time allotted for procedures was extended to accommodate people with intellectual disability. | Hospitalisation rate for the 17 resident participants in this study, over a 2-year period, was 76%. | Need for specific government initiatives to address failure of hospitals to accommodate the needs of this vulnerable population. |
| Grounded theory. | Family members (n=17). | Telephone interviews. | Preadmission visits (for a planned procedure) to the hospital with tour of hospital and introduction to people who would be involved in the person’s care. | Findings highlight the difficulty people with ID experience in hospital settings. | Need for research to examine the current supports/programmes in place and learn what works and what needs to be done differently. | |||
| House supervisors (n=16). | 130 interviews in total at multiple points. | Early discharge policy for people with intellectual disability. | Extensive strategies undertaken by family members and group home staff to improve hospital experiences. | |||||
| Accommodation programme managers (n=11). | There is an absence of systems to accommodate the special needs of people with intellectual disability in hospital settings. | |||||||
| Staff in aged care facilities (n=11). |
Summary of evidence
| Author | Reasonable adjustment evident | Leadership of reasonable adjustment |
| Brown | Individualised care approaches supporting staff to make reasonable adjustment to routine practice, for example, providing first appointment and quiet waiting areas. | Intellectual disability liaison nurse – information sharing, assessment, providing advice, capacity and consent issues, discharge planning, risk management and client/carer support. |
Some reasonable adjustments were outside of standard practice and managed well, for example, location of induction of anaesthesia and recovery. | ||
| Heslop | A home visit by the anaesthetist and surgeon. | Intellectual disability nurses lead and coordinated the home visit by the consultant anaesthetist and surgeon and supported the development of an admission plan with the person with intellectual disability, their family and carers including a preoperative assessment and relevant risk assessments. |
Admission plan. | ||
Preoperative assessment and relevant risk assessments completed at home. | ||
Facilitated patient sedation outside standard practice (ie, at home), prior to transfer to hospital. | ||
It was arranged to have several routine investigations carried out while the person was sedated, for example, routine blood tests and dental check. | ||
| Marsden and Giles | Practice development nurse for people with intellectual disability alerted via a smartphone app for Apple devices. | Practice development nurse for people with intellectual disability within the hospital. Collaborated with ward nurses, doctor and care workers to support communication and capacity assessment. |
Hospital Communication Book. | ||
My Healthcare Passport. | ||
Intellectual disability ward champion. | ||
| Phillips | Preadmission visit. | Intellectual disability liaison nurse coordinated care with ward staff and communication support in conjunction with a speech and language therapist in case study one. In case study two, the learning disability liaison nurse coordinated care across several areas to provide a combined healthcare appointment of dental, audiology, cardiac and anaesthesiology. |
Hospital passport. | ||
Communication book. | ||
Being first on the theatre list. | ||
Having a carer present in the anaesthetic and recovery room. | ||
Side room made available. | ||
Allowing both parents to stay. | ||
Providing a low bed. | ||
Multiple interventions under one anaesthetic. | ||
| Tuffrey-Wijne | LDLN providing training for hospital staff. | Intellectual disability liaison nurses provided training for hospital staff. |
Providing patient-held information documents for people with intellectual disability to record key information for the benefit of hospital staff, including likes and dislikes. | ||
Patients with intellectual disability and their carers attended outpatient appointments were provided with a bleep so they did not have to wait in the small waiting area. | ||
Facilitated patient sedation outside standard practice (patient sedated in the car park prior to entry to hospital with his consent and his family’s support). | ||
A preadmission visits organised for people with intellectual disability to look around the ward area. | ||
A patient who has difficulties coping with tests and treatments had several other necessary tests and treatments carried out involving a range of different clinicians while under general anaesthetic for dental surgery. | ||
Carers were offered food, a bed and a parking permit. | ||
Continuity and consistently seeing the same doctor accommodated for a woman with intellectual disability who requested to see the same consultant seen previously. Here the consultant rearranged his schedule so he would always be the doctor to see this patient. | ||
The medical assessment unit ensures patients with intellectual disability are moved rapidly to the relevant ward. | ||
No unnecessary ward transfers/changes allowing patients with intellectual disability who only need a few days in hospital to stay on the ward rather than be moved to a different ward. | ||
Patients with intellectual disability with significant care needs are allocated additional care staff. | ||
Patients with intellectual disability are allocated a quiet waiting area. | ||
A patient with intellectual disability was given an early morning and/or a double appointment. | ||
A patient with intellectual disability who found it difficult to cope with a busy ward environment who required treatment on a day surgery ward where no separate room were available, was given a bed by the window with the curtains pulled round and staff informed the patient exactly what to expect and they coped well with the treatment and environment. | ||
The carers of patients with intellectual disability are invited to attend the consultant’s ward rounds. | ||
| Webber | Time allotted for appointment extended to accommodate people with intellectual disability. | No specialised intellectual disability nurses and carers perceived staff in the acute setting to be generally uncomfortable with or indifferent to the needs of people with intellectual disability. Where there were positive experiences, this occurred where there were clear policies, resources and systems in place to address the needs of people with intellectual disability. |
Preadmission visits (for a planned procedure) to the hospital with tour of hospital and introduction to people who would be involved in the person’s care. | ||
Early discharge policy for people with intellectual disability. |