A family carer decision support intervention for people with advanced dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study)

Abstract

Background Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n = 2 Republic of Ireland = 2, three regions in the UK n = 2 each, The Netherlands n = 2, Italy n = 2 and the Czech Republic n = 2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

A Situation-Specific Theory of End-of-Life Communication in Nursing Homes

“…This instrumental case study was conducted in conjunction with a transnational quality improvement project that implemented structured family care conferences (FCCs) for the FCs of people with advanced dementia in a NH (primary study) between March and June 2021 [27].…”

“…A transnational multidisciplinary implementation study, known as mySupport study, that involved a consortium of six countries (Canada, United Kingdom, Ireland, Italy, the Netherlands, and the Czech Republic), explored the benefits of structured FCCs associated with written information to support the FCs of NH residents with advanced dementia who have to make decisions about their relatives' end-of-life care [27].…”

“…Table 1 shows the main interview questions for the FCs, the NH staff, the NH manager, and the research staff. The interview guides were based on the experience of the experts in qualitative methodology and end-of-life care who were responsible for the transnational study [27]. The interviews had a mean duration of 20 min (range 7-45 min).…”

“…Then, the initial theorizing process was validated through interviews with the FCs of NH residents [9,39] and nurses [40] who work in NHs and led to a first theory of end-of-life communication in NHs [21]. The theorizing process moved forward by integrating the experience from a transnational quality improvement project [27] and updated research findings emerged from the implementation of such project in Italy [41]. Finally, knowledge from clinical discussions and discussions with international colleagues was incorporated and a final situation-specific theory was developed (Figures 1 and 2).…”

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

“…However, the impact of the intervention when scaled up outside of the original context may differ. Therefore, six countries collaborated in the mySupport study consortium ( https://mysupportstudy.eu/ ) aimed at adapting the intervention to their local contexts and implement the intervention in their own setting [ 7 ]. Two additional general adaptions were made.…”