Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in ‘Getting it right’ for people with learning disabilities receiving general hospitals care

MacArthur, Juliet; Brown, Michael; McKechanie, Andrew; Mack, Siobhan; Hayes, Matthew; Fletcher, Joan

doi:10.1111/jan.12629

Cited by 55 publications

(66 citation statements)

References 39 publications

(48 reference statements)

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“…Whilst there have been examples of nurses with specialist qualifications in ID being appointed in the USA to transition co‐ordinator posts (Betz & Redcay, ) such roles often project based and not sustained. Many UK health services are implementing the role of intellectual disability liaison nurses as a way of operationalizing person‐centred health care in general hospital settings (Castles, Bailey, Gates, & Sooben, ; MacArthur et al., ). This role is recognized as contributing to family support, more effective communication between services and individual clinicians, proactive care and enabling inclusive decision‐making and appropriate levels of autonomy (Brown et al., ).…”

Section: Discussionmentioning

confidence: 99%

“…In addition to highlighting essential components for undergraduate nursing education, this review identifies important professional and ethical issues for inclusion in continuing professional development programmes for all nurses. These include communication and legal issues related to capacity and consent (Sowney & Barr, ), the need for reasonable adjustments to support shared decision‐making and meet specific health needs (MacArthur et al., ; Tuffrey‐Wijne et al., ) and the concept of family centred care (Coyne, ).…”

Section: Discussionmentioning

confidence: 99%

“…There is also a need to understand and evaluate the contribution of nursing roles that sit outside mainstream paediatric and adult nursing. School nurses have specialist graduate level education in community health and the health needs of school-aged children and young people (Royal College of Nursing, 2017) and exist in many countries in North America, Europe, Asia, and Australasia (Maughan, 2016 (Castles, Bailey, Gates, & Sooben, 2014;MacArthur et al, 2015).…”

Section: Nursing Practicementioning

confidence: 99%

See 2 more Smart Citations

Transitions from child to adult health care for young people with intellectual disabilities: A systematic review

Brown

MacArthur

Higgins

et al. 2019

Journal of Advanced Nursing

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Aims To examine the experiences of health transitions for young people with intellectual disabilities and their carers and identify the implications for nursing practice. Design A systematic review and critical appraisal of qualitative, quantitative, and mixed methods studies. Data sources A search of the relevant literature published 2007–2017 was carried out in AMED, ASSIA, CINAHL, MEDLINE, PsycINFO, PubMed, and Science Direct Sociological Abstracts databases. Review methods A total of 12 of 637 papers identified in the search met the inclusion criteria for this review. A narrative review of the papers was undertaken by synthesizing the key findings and grouping them into concepts and emergent themes. Results Four main themes were identified: (a) becoming an adult; (b) fragmented transition process and care; (c) parents as advocates in emotional turmoil; and (d) making transitions happen. Conclusion The range of issues that have an impact on the transition from child to adult health services for young people with intellectual disabilities and their carers raise important implications for policy development, nursing practice, and education.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Nursing Practicementioning

confidence: 99%

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Transitions from child to adult health care for young people with intellectual disabilities: A systematic review

Brown

MacArthur

Higgins

et al. 2019

Journal of Advanced Nursing

Self Cite

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“…However, although there is evidence to suggest that learning disability liaison nursing is valued by stakeholders, 197 and that promoting access and equity is an important part of the role, 198 there appears to have been little formal evaluation of the role 199 and its impact is unclear. Others suggested that the role of a dementia navigator could be non-clinical.…”

Section: Dementia Co-ordinators/support Workersmentioning

confidence: 99%

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Bunn

Burn

Goodman

et al. 2016

Health Serv Deliv Res

116

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BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Such posts vary in the way the role is operationalised but generally involve the employment of a nurse with specific intellectual disability knowledge, experience and training within acute hospital settings. Their role is to provide specialist knowledge and expertise and to support the staff working within those settings to provide appropriate care (see, e.g., MacArthur et al., ).…”

Section: Introductionmentioning

confidence: 99%

Hospital passports, patient safety and person‐centred care: A review of documents currently used for people with intellectual disabilities in theUK

Northway

MSc

BSc

et al. 2017

Journal of Clinical Nursing

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Internationally nurses provide care for people with intellectual disabilities and others with communication difficulties. Hospital passports are one way of enhancing safety and person-centred care, need to be accessed and used as a basis for care planning. However, variation in format may limit this effectiveness and nurses should work with others to develop a more standardised approach, which better meets the needs of all stakeholders.

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Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in ‘Getting it right’ for people with learning disabilities receiving general hospitals care

Cited by 55 publications

References 39 publications

Transitions from child to adult health care for young people with intellectual disabilities: A systematic review

Transitions from child to adult health care for young people with intellectual disabilities: A systematic review

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

Hospital passports, patient safety and person‐centred care: A review of documents currently used for people with intellectual disabilities in theUK

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