A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention

Abstract

IntroductionIn the UK approximately 700 000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability.Methods and analysisAn ‘Interdisciplinary Care Leader (ICL)’ will work within two care homes, alongside staff and associated professionals to facilitate service integration, encourage structured needs assessment, develop the use of personal and advance care plans and support staff training. We will use qualitative and quantitative methods to collect data for a range of outcome and process measures to detect effects on individual residents, family carers, care home staff, the intervention team, the interdisciplinary team and wider systems. Analysis will include descriptive statistics summarising process and care home level data, individual demographic and clinical characteristics and data on symptom burden, clinical events and quality of care. Qualitative data will be explored using thematic analysis. Findings will inform a future phase II trial.Ethics and disseminationEthical approval was granted (REC reference 14/LO/0370). We shall publish findings at conferences, in peer-reviewed journals, on the Marie Curie Cancer Care website and prepare reports for dissemination by organisations involved with end-of-life care and dementia.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians

“…Societal developments such as a wish for more shared decision making and person-centred care underpin the need to promote ACP for those willing to engage in it, and physicians are in a key position to initiate it. Dementia-specific formats are being developed to facilitate dialogue by adopting a structured approach, whether stand-alone or ACP integrated in the care e.g., in the UK (21), and the US (22). An important question, with fundamentally different stances about the value of planning, is should we also respect the views of physicians unwilling to engage in it?…”

Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

“…In the intervention manual, we provide detailed descriptions of processes to achieve these aims, to enable new working practices and to initiate and maintain an education training and support programme. 34 Components 1 and 2 are both dependent upon, and will influence to varying degrees, the local political and economic context, including commissioning priorities of local service providers.…”

“…We shall learn more about how COMPASSION operates as we complete our exploratory implementation study. 34 This will provide information on how the integrated model of care works in practice, and preliminary data on costs. 36 Describing sustainability is challenging and a number of theoretical models are available.…”

“…We developed a protocol for an exploratory naturalistic implementation study. 34 We began implementation with a local focus group including clinical leads for care of the elderly, palliative care, old age psychiatry, social care and care home managerial staff. We discussed the content of the manual and adjustments were made as needed.…”

Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study

“…Implementation occurred over 6 months at each site (see published protocol, 27 supplementary file 1 and supplementary file 2 ). In month 1, the ICL met with NH managers and key external healthcare professionals, introduced herself to staff and displayed study posters.…”