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)

Andrew J E Harding, Julie Doherty, Laura Bavelaar, Catherine Walshe, Nancy Preston, Sharon Kaasalainen, Tamara Sussman, Jenny T van der Steen, Nicola Cornally, Irene Hartigan, Martin Loucka, Karolina Vlckova, Paola Di Giulio, Silvia Gonella, Kevin Brazil*, mySupport study group

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

8 Citations (Scopus)
66 Downloads (Pure)

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.

Original languageEnglish
Article number822
Number of pages10
JournalBMC Geriatrics
Volume22
DOIs
Publication statusPublished - 26 Oct 2022

Keywords

  • Advance care planning
  • Dementia
  • Implementation
  • Nursing homes
  • Palliative care
  • Training

ASJC Scopus subject areas

  • Geriatrics and Gerontology

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