The perspectives of stakeholders of intellectual disability liaison nurses: a model of compassionate, person-centred care.

AIMS AND OBJECTIVES: To investigate the experiences of patients with intellectual disabilities, family and paid carers regarding the role of liaison nurses and the delivery of compassionate, person-centred care. From this to propose a model of person-centred care embedded in these experiences. BACKGROUND: People with intellectual disabilities have a high number of comorbidities, requiring multidisciplinary care, and are at high risk of morbidity and preventable mortality. Provision of compassionate, person-centred care is essential to prevent complications and avoid death. DESIGN: A qualitative design was adopted with Interpretative Phenomenological Analysis for data analysis. METHODS: Semistructured interviews and focus groups were conducted. Data were analysed with a focus on compassionate, person-centred care elements and components. Themes were modelled to develop a clinically meaningful model for practice. RESULTS: Themes identified vulnerability, presence and the human interface; information balance; critical points and broken trust; roles and responsibilities; managing multiple transitions; 'flagging up' and communication. CONCLUSIONS: The findings provide the first 'anatomy' of compassionate, person-centred care and provide a model for operationalising this approach in practice. The applicability of the model will have to be evaluated further with this and other vulnerable groups. RELEVANCE TO CLINICAL PRACTICE: This is the first study to provide a definition of compassionate, person-centred care and proposes a model to support its application into clinical practice for this and other vulnerable groups.

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.

AIMS: To examine the role of learning disability liaison nurses in facilitating reasonable and achievable adjustments to support access to general hospital services for people with learning disabilities. DESIGN: Mixed methods study involving four health boards in Scotland with established Learning Disability Liaison Nurses (LDLN) Services. Quantitative data of all liaison nursing referrals over 18 months and qualitative data collected from stakeholders with experience of using the liaison services within the previous 3-6 months. METHODS: Six liaison nurses collected quantitative data of 323 referrals and activity between September 2008-March 2010. Interviews and focus groups were held with 85 participants included adults with learning disabilities (n = 5), carers (n = 16), primary care (n = 39), general hospital (n = 19) and liaison nurses (n = 6). RESULTS/FINDINGS: Facilitating reasonable and achievable adjustments was an important element of the LDLNs' role and focussed on access to information; adjustments to care; appropriate environment of care; ensuring equitable care; identifying patient need; meeting patient needs; and specialist tools/resources. CONCLUSION: Ensuring that reasonable adjustments are made in the general hospital setting promotes person-centred care and equal health outcomes for people with a learning disability. This view accords with 'Getting it right' charter produced by the UK Charity Mencap which argues that healthcare professionals need support, encouragement and guidance to make reasonable adjustments for this group. LDLNs have an important and increasing role to play in advising on and establishing adjustments that are both reasonable and achievable.