Implementing advance care planning in routine nursing home care : the development of the theory-based ACP+ program

Background While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. Objectives We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. Design To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. Setting and participants Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. Methods The work was carried out by means of 1) operationalization of key intervention components identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. Results The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. Conclusions The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice

Implementing the theory-based advance care planning ACP+ programme for nursing homes : study protocol for a cluster randomised controlled trial and process evaluation

Background Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. Methods We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. Discussion There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family

Palliative care service use by older people : time trends from a mortality follow-back study between 2005 and 2014

Background: The need for increased use and timely initiation of palliative care for all people, not just those who die with cancer, has been advocated worldwide over the past decade. Aim: To investigate whether there has been a time trend in the use of palliative care services and the timing of their initiation for older people. Design: Mortality follow-back survey among general practitioners in a nationally representative Sentinel Network in 2005-2010, 2013 and 2014 in Belgium. Setting/participants: Of all their patients who died non-suddenly aged 65+years, general practitioners reported sociodemographic and clinical data, use of any of the palliative care services available in Belgium and when the first of these services was initiated. Results: General practitioners identified 5344 deaths. Overall, palliative care service use increased from 39% in 2005 to 63% in 2014 (p<0.001). The use of a reference person for palliative care in a care home increased from 12% to 26% (p<0.001) and of a palliative homecare team from 14% to 17.5% (p<0.01), but hospital-based palliative care services did not increase. Controlling for sociodemographic characteristics, no differences were obtained over time in the proportion of cancer/non-cancer patients for whom they provided care. The timing of initiation of palliative care services remained unchanged at a median of 15days before death. Conclusion: Palliative care service use has increased mostly in care homes, possibly as a result of policy changes, while hospital-based palliative care services lag behind. Contrary to recommendations, access for non-cancer patients may remain difficult and palliative care is often initiated late in the disease trajectory

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

IntroductionPeople with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD).MethodseIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis.ResultsWe identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis.ConclusionsFindings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias