TY - JOUR

T1 - A family carer decision support intervention for people with advanced dementia residing in a nursing home

T2 - a study protocol for an international advance care planning intervention (mySupport study)

AU - mySupport Study Group

AU - Harding, Andrew J E

AU - Doherty, Julie

AU - Bavelaar, Laura

AU - Walshe, Catherine

AU - Preston, Nancy

AU - Kaasalainen, Sharon

AU - Sussman, Tamara

AU - van der Steen, Jenny T

AU - Cornally, Nicola

AU - Hartigan, Irene

AU - Loucka, Martin

AU - Vlckova, Karolina

AU - Di Giulio, Paola

AU - Gonella, Silvia

AU - Brazil, Kevin

N1 - © 2022. The Author(s).

PY - 2022/10/26

Y1 - 2022/10/26

N2 - 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.

AB - 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.

KW - Humans

KW - Caregivers

KW - Dementia/therapy

KW - Nursing Homes

KW - Advance Care Planning

KW - Terminal Care/methods

U2 - 10.1186/s12877-022-03533-2

DO - 10.1186/s12877-022-03533-2

M3 - Journal article

C2 - 36289458

VL - 22

JO - BMC Geriatrics

JF - BMC Geriatrics

SN - 1471-2318

M1 - 822

ER -