Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study
BackgroundWeb-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their abilit...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2023-07-01
|
| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2023/1/e46935 |
| _version_ | 1827857159147225088 |
|---|---|
| author | Fanny Monnet Charlèss Dupont Tinne Smets Aline De Vleminck Chantal Van Audenhove Lieve Van den Block Lara Pivodic |
| author_facet | Fanny Monnet Charlèss Dupont Tinne Smets Aline De Vleminck Chantal Van Audenhove Lieve Van den Block Lara Pivodic |
| author_sort | Fanny Monnet |
| collection | DOAJ |
| description |
BackgroundWeb-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families.
ObjectiveThis paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families.
MethodsThe development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire.
ResultsThis study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023.
ConclusionsThe methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study.
International Registered Report Identifier (IRRID)DERR1-10.2196/46935 |
| first_indexed | 2024-03-12T12:37:27Z |
| format | Article |
| id | doaj.art-8ce3b2e8d4944a9c8ec1c032ddec2bc3 |
| institution | Directory Open Access Journal |
| issn | 1929-0748 |
| language | English |
| last_indexed | 2024-03-12T12:37:27Z |
| publishDate | 2023-07-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj.art-8ce3b2e8d4944a9c8ec1c032ddec2bc32023-08-29T00:07:12ZengJMIR PublicationsJMIR Research Protocols1929-07482023-07-0112e4693510.2196/46935Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability StudyFanny Monnethttps://orcid.org/0000-0002-4983-9486Charlèss Duponthttps://orcid.org/0000-0002-8333-9573Tinne Smetshttps://orcid.org/0000-0003-1439-316XAline De Vleminckhttps://orcid.org/0000-0002-3321-9311Chantal Van Audenhovehttps://orcid.org/0000-0002-5504-5439Lieve Van den Blockhttps://orcid.org/0000-0002-7770-348XLara Pivodichttps://orcid.org/0000-0002-8825-3699 BackgroundWeb-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families. ObjectiveThis paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families. MethodsThe development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire. ResultsThis study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023. ConclusionsThe methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study. International Registered Report Identifier (IRRID)DERR1-10.2196/46935https://www.researchprotocols.org/2023/1/e46935 |
| spellingShingle | Fanny Monnet Charlèss Dupont Tinne Smets Aline De Vleminck Chantal Van Audenhove Lieve Van den Block Lara Pivodic Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study JMIR Research Protocols |
| title | Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study |
| title_full | Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study |
| title_fullStr | Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study |
| title_full_unstemmed | Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study |
| title_short | Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study |
| title_sort | advance care planning website for people with dementia and their family caregivers protocol for a development and usability study |
| url | https://www.researchprotocols.org/2023/1/e46935 |
| work_keys_str_mv | AT fannymonnet advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT charlessdupont advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT tinnesmets advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT alinedevleminck advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT chantalvanaudenhove advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT lievevandenblock advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy AT larapivodic advancecareplanningwebsiteforpeoplewithdementiaandtheirfamilycaregiversprotocolforadevelopmentandusabilitystudy |