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mySupport - Family Carer Decision Support Study

Research Project Title

Scaling up the Family Carer Decision Support Intervention: A transnational effectiveness-implementation evaluation

KeyWords

Decision aid, Advanced Dementia, Education, End of life, Family caregivers, Nursing homes, Palliative care

Challenge

Making decisions about care

When a person with dementia living in a nursing home* loses the capacity to make decisions independently, nursing home staff must provide care that reflects the person’s best interest. There is evidence that families often experience uncertainty about the illness progression, especially when they are not given an opportunity to discuss their relative’s prognosis and fundamental aspects of their care.

An educational intervention called the Family Carer Decision Support intervention has been developed to assist nursing home staff in supporting family carers when they need to make difficult decisions about end-of-life care for their relative with advanced dementia. The Family Carer Decision Support intervention was the focus of mySupport study, a transnational multidisciplinary implementation study.

*In this study, ‘nursing home’ is used to refer to a collective institutional setting in which care is provided to older adults, on-site 24 hours a day, including on-site or off-site nurses and medical staff.

Family Carer Decision Support

In previous research, the Family Carer Decision Support intervention was found to reduce family carer decision-making uncertainty on establishing goals of care at the end of life and improve family carer satisfaction on fundamental choices for comfort and quality of care.

There are three core elements to the Family Carer Decision Support intervention:
1. Provision of a Comfort Care Booklet to family carers.
2. Training of nursing home staff.
3. Delivery of a Family Care Conference.

Research Project aims and methods

The main aim of mySupport study was to adapt, implement and evaluate the Family Carer Decision Support intervention in six countries: United Kingdom (Northern Ireland and England); Republic of Ireland (Cork County); Netherlands (Leiden); Canada (Hamilton, Montreal); Czech Republic (Prague) and Italy (Turin). Specifically, this study aimed to:
Adapt: the Comfort Care Booklet and a Question Prompt List for each country participating in the study.
Implement: the Comfort Care Booklet with Question Prompt List in nursing homes for people with advanced dementia using Family Care Conferences or meetings.
Evaluate: the impact of the intervention on family carers and nursing home staff.

Methods
The intervention was be adapted, implemented and evaluated in nursing homes in six countries (Canada, United Kingdom, Republic of Ireland, Netherlands, Czech Republic, and Italy) using a multiple case study design approach. A case study approach allowed in-depth insight into the implementation process used to support the uptake of the educational intervention. Factors acting as barriers and facilitators to the implementation process were identified within each care home.

We used a step-by-step development approach, where we first generated informed ideas (hypotheses) about what factors might help the intervention succeed, and then tested and improved these ideas by introducing the intervention in care homes in stages. The experiences and lessons learned from the first stage guided how we implemented the intervention in the next stage. To fully understand how well the intervention worked and how it was put into practice, we collected and analysed both quantitative and qualitative data step by step. This approach helped us capture the full complexity of implementing the Family Carer Decision Support intervention.

A mySupport Study Logic Model which explains the programme components and a Template for Intervention Description and Replication (my Support Study TIDier checklist)  were created to outline the intervention in more detail.

Public, patient and personal involvement (PPI)

Each research partner established a Patient Public Involvement (PPI) voluntary advisory group made up of members of the public that have experience caring for a family member with dementia. The overall aim of PPI within mySupport study was to support a shared understanding of how best to support decision making at end of life for people with dementia and their carers.

mySupport study PPI members worked alongside the research team to guide and inform decisions about aspects of mySupport study. Members had opportunities to influence this research and its outputs, including reviewing study materials, advising on ways to reach people who may want to participate in this study, or benefit from the outputs and findings.

mySupport study Strategic Guidance Council

An international PPI panel known as the Strategic Guidance Council was also established with membership across all six countries. This group informed mySupport study going forward. To learn more about how the Strategic Guidance Council was formed and how it was managed read this short blog article:  Link . You can find Strategic Guidance Council Members here

Key Findings and next steps

This research brought together a variety of stakeholders to explore the challenges involved in putting the Family Carer Decision Support into practice. The international scope showed that similar factors helped or hindered implementation across all partner countries. The mySupport project confirmed these shared experiences. Detailed findings are available by country.

These insights are valuable for decision-makers managing new practices, practitioners responsible for implementing the Family Carer Decision Support, as well as researchers and educators in this field. Building on this work, we further developed the Family Carer Decision Support and secured Horizon Europe funding in 2024. This next phase combines the Family Carer Decision Support with person-centred care intervention for people living with advanced dementia in nursing homes, under the project name In Touch. https://palliativeprojects.eu/in-touch/

Timeline

 April 2019 – Early 2023

Research Team

mySupport study Early Career Researchers’ Committee

The mySupport study Early Career Researchers’ Committee was formed to create an international network of early career researchers who were working as part of the mySupport study team. Members included PhD students, Post-Doctoral Researchers, Research Assistants and Research Co-Ordinators. The core roles and responsibilities of the committee alternated every six months to encourage capacity building and the development of leadership skills. The committee hosted monthly virtual meetings, member presentations and specialist workshops which facilitated knowledge exchange and information sharing between members. These events encouraged collaboration and promoted communication across study sites and partner countries. The committee was also actively involved in group publications and blog writing and worked closely with senior members of mySupport team on professional development and career progression via a mentoring system.

Watch this short video which detailed how the international committee supported its members: LINK. You can find Early Career Researchers’ Committee members here.

Early Career Researcher Mentorship Programme

The aim of this programme was to recognise, develop and nurture career progression for early career researchers in mySupport Study.

Each early career researcher was given the opportunity to be mentored by an experienced researcher in another university who provided support and direction. Mentees engaged in an active partnership with their mentors to identify achievable career goals and address any challenges to achieving action plans. A record was kept of the engagement of mentor and mentee over the 6-month programme.

Members were encouraged to reflect on:
• past and present initiatives
• gain insight into new organisations
• build a broader skill base
• explore innovative thinking patterns

Early career researchers who completed the Mentorship programme could obtain a digital badge through the Centre for Digital Education, University College Cork.

Digital Badge for completion of Early Career Researchers Mentorship Programme

Collaborators

External Collaborator

All Ireland Institute of Hospice and Palliative Care (AIIHPC). You can find Co-Investigators link here.

Funding & Support

This project is funded by the EU Joint Programme – Neurodegenerative Disease Research (JPND), the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases – www.jpnd.eu

Research project outputs and impact

Conference presentations:

  • Bavelaar L, van der Steen J, Nicula M, Morris S, Kaasalainen S, Achterberg A, & Brazil K. (2020, Nov 4-7). Developing country-specific question prompt lists about dementia palliative care for family caregivers [Conference presentation]. GSA 2020 Annual Scientific Meeting, Online.  Innovation in Aging 2020; 4(Suppl 1): 786, https://doi.org/10.1093/geroni/igaa057.2846
  • Hartigan, I., McKeon M, Brazil K., Timmons S., Fitzgerald S., Fox S., Foley T., Sweeney C, Buckle C., O Caoimh R., Cornally N. (2022) Remote knowledge translation and exchange (KTE) strategies – engaging staff and families in the mySupport study during COVID-19. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Cornally, N. & mySupport Group. (2002) Introduction of the overview abstract- Implementation of advance care planning in dementia with nursing home staff and family caregivers during Covid-19: The six-country mySupport study. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Bavelaar, L., van der Steen, J., Visser, M (2022) Using an educational booklet to empower nurses in advance care planning conversations with family of nursing home residents with dementia, 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Harding, A., Brazil, K., Cousins, E., De Vries, K., Doherty, J., Harrison Dening, K., McCann, A., Preston, N., Varey, S., & mySupport Group; Necessary Discussions Group. Facilitators, barriers and lessons from undertaking two Advance Care Planning implementation studies remotely & online during a global pandemic. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Gonella, S and Di Giuilio, P. (2022) Strategies to tailor the mySupport intervention to local characteristics and needs. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Preston, N., Brazil, K., Carter, G., Cousins, E., Doherty, J., Finucane, A., Hanratty, B., Harding, A., Harrison Dening, K., McCann, A., Mitchell, G., Russell, S., Stocker, R., Varey, S. (2022) Experiences of advance care planning during the COVID-19 pandemic in long term care facilities. 26th Nordic Congress of Gerontology, Denmark, https://www.26nkg.dk/abstract.html.
  • Gonella, S. (2022) End-of-Life Communication in Nursing Home. EAPC Post-Doctoral Award. 12th World Research Congress of the European Association for Palliative Care. Palliative Medicine 33(1) Suppl. https://doi.org/10.1177/02692163221093145
  • Vlckova, K., Loucka., (2022) Barriers and facilitators to implement Family Carer Decision Support intervention using family care conferences in nursing homes in the Czech Republic: national data from mySupport study. 12th World Research Congress of the European Association for Palliative Care. Palliative Medicine 33(1) Suppl. https://doi.org/10.1177/02692163221093145
  • Fitzgerald, Serena & Just, Danielle & McCann, Adrienne & Di Sante, Emily & Bavelaar, Laura & Nicula, Maria & Gonella, Silvia & Harding, Andrew & O Connell, Selena & Vlckova-Horakova, Karolina & Fox, Siobhan. (2021). Development of an Early Career Research Committee and Online Mentorship Programme as part of the mySupport Study.  17th World Congress European Association of Palliative Care. Palliative Medicine35 (1) suppl, September page 100 https://journals.sagepub.com/toc/pmja/35/1_suppl
  • di giulio, Paola & Angaramo, Marianna & Gonella, Silvia. (2021). Implementing advance care planning with family caregivers of nursing home residents in Italy. European Association for Palliative Care 17th World Congress Online “Exploring new dimensions” At: Interactive Online Sessions. Palliative Medicine 35 (1) suppl, September page 15 https://journals.sagepub.com/toc/pmja/35/1_suppl
  • Harding, A., Cousins, E., Doherty, J., McCann, A., Varey, S., Preston, N., Harrison Dening, K., De Vries, K., Brazil, K., mySupport Group, Necessary Discussions Group (2021) Lessons learnt from undertaking dementia nursing home research remotely & online during a global pandemic: Tales from two advance care planning implementation studies. Alzheimer’s Europe Conference QOP1. Resilience and COVID-19. https://www.alzheimer-europe.org/sites/default/files/2022-01/2021%20AE%20Conference%20-%20Abstract%20Book.pdf
  • Just, D., Tétrault, B., Sussman, T, Kaasalainen, S, (2022) Motivations and Impact of the Strategic Guiding Council: An International Patient and Public Involvement Panel for Long-term Care Research During the COVID-19 Pandemic. Oral presentation at The Marie Curie Research Conference: Improving End of Life for All. 30th January to 4th February 2022, Online  BMJ Supportive & Palliative Care12 (1) http://dx.doi.org/10.1136/spcare-2021-MCRC.52
  • Vlckova, K., Gonella, S., Bavelaar, L., Mitchel G., Sussman T.: (2022) Methodological issues and challenges in designing and conducting research at the end of life: findings of qualitative and textual evidence from researchers´ perspective – oral presentation.12th European Association for Palliative Care World Research Congress, 2022.
  • Vlckova, K., Loucka, M. (2022): Implementation of psychosocial intervention FCDS including family conferences in nursing homes: Czech data from mySupport study – poster. Czech Palliative Care Society Congress.
  • Hartigan I, Racine E, Meehan E, McKeon M, Cornally N, Brazil K, Lisiecka D, Timmons S, Fitzgerald S, Fox S, Foley T, Sweeney C, Buckle C, O Caoimh R, McGrath H. (2020). Fit for context: Co-designing a Comfort Care booklet for people with dementia [Oral presentation]. Transforming Care and Communities – Virtual 12th International Dementia Conference. https://engagingdementia.ie/wp-content/uploads/2020/11/1.-Full-Conference-Programme-2020-PROGRAMME_6.pdf
  • Meehan E, McKeon M, Hartigan I, Brazil K, Rabbitte M, Lisiecka D, Timmons S, Fox S, Foley T, Sweeney C, Buckley C, O Caoimh R, Fitzgerald S, Cornally N. (2020). Communication is key: ensuring effective dissemination of key messages and new knowledge from mySupport study [Oral presentation]. Transforming Care and Communities – Virtual 12th International Dementia Conference. https://engagingdementia.ie/wp-content/uploads/2020/11/1.-Full-Conference-Programme-2020-PROGRAMME_6.pdf
  • Brazil, K., Kassalainen, S., Sussman, T., van der Steen, J., Cornally, N., Hartigan, I., Louka, M., Di Giulio, P., McCann, A., & Morris, S. (2019). Implementing the Family Carer Decision Support (FCDS) Intervention to improve end of life care in care homes: Planning a transnational effectiveness-implementation study. Poster session presented at PhD and Postdoctoral Research Showcase event Poster, Doctoral and Post-Doctoral Nursing & Midwifery: Making an impact on Education and Practice, Belfast , United Kingdom.
  • Hartigan, I., Brazil, I., Kaasalainen, S., Sussman, T., van der Steen, J., Loucka, M., Giulio, P., Cornally, N. (2019). A Transnational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care. Age and Ageing. 48. iii17-iii65. 10.1093/ageing/afz103.216.

 

Peer Reviewed Journals Articles:

  • Brazil, K., Walshe, C., Doherty, J., Harding, A. J., Preston, N., Bavelaar, L., … & Van Der Steen, J. T. (2024). Implementation of an advance care planning intervention in nursing homes: an international multiple case study. The Gerontologist, 64(6), gnae007. https://academic.oup.com/gerontologist/article/64/6/gnae007/7606982
  • Hartigan, I., Buckley, C., Cornally, N., Brazil, K., Doherty, J., Walshe, C., … & mySupport Study Group. (2025). EMTReK Model for Advance Care Planning in Long-Term Care: Qualitative Findings from mySupport Study. Geriatrics, 10(6), 171.https://www.mdpi.com/2308-3417/10/6/171
  • Harding, A.J.E., et al., A Family Carer Decision Support Intervention for people with advance dementia residing in a nursing home: A study protocol for an international advance care planning intervention (mySupport study). BMC Geriatrics, 2022. 22(1): p. 822https://pubmed.ncbi.nlm.nih.gov/36289458/
  • Bavelaar, L., et al., 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. Age and ageing, 2023. 52(3). https://pubmed.ncbi.nlm.nih.gov/36861181/
  • Vellani S, Yous ML, Rivas VM, Lucchese S, Kruizinga J, Sussman T, Abelson J, Akhtar-Danesh N, Bravo G, Brazil K, Ganann R, Kaasalainen S. Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life. Health Expect. 2024 Feb;27(1):e13942. doi: 10.1111/hex.13942. PMID: 39102702; PMCID: PMC10748824. https://pubmed.ncbi.nlm.nih.gov/39102702/
  • Lucchese, S., Yous, ML., Kruizinga, J. et al.Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study. Res Involv Engagem 10, 94 (2024). https://doi.org/10.1186/s40900-024-00623-w
  • Angaramo M, Simionato L, Di Giulio P, Campagna S, Clari M, Dimonte V, Gonella S. Migliorare la comunicazione nelle strutture per anziani: il progetto mySupport [Improving communication in nursing homes: the mySupport study]. Recenti Prog Med. 2025;116(4):219-224. doi: 10.1701/4480.44815. 
  • Gonella, S., Di Giulio, P., Angaramo, M., Dimonte, V., Campagna, S., Brazil, K., & mySupport Study Group. (2022). Implementing a nurse-led quality improvement project in nursing home during COVID 19 pandemic: A qualitative study. International Health Trends and Perspectives, 2(2), 175-192.
  • Bavelaar, L., McCann, A., Cornally, N., Hartigan, I., Kaasalainen, S., Vankova, H., Di Giulio, P., Volicer, L., Arcand, M., van der Steen, Brazil, K., & the mySupport study group. (2022). Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15-year timespan. BMC palliative care, 21(1), 1-8.
  • Bavelaar, L., Nicula, M., Morris, S., Kaasalainen, S., Achterberg, W. P., Loucka, M.,Vlckova, K., Thompson, G., Cornally, N., Hartigan, I., Harding, A., Preston, N., Walshe, C., Cousins, E., Harrison Dening, K., De Vries, K., Brazil, K.,& van der Steen, J. T. (2022). Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers. Patient Education and Counseling, 105(4), 965-973.
  • Gonella, S., Mitchell, G., Bavelaar, L., Conti, A., Vanalli, M., Basso, I., & Cornally, N. (2022). Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review. Palliative Medicine, 36(2), 268-291.
  • Bavelaar, L., van Tol, L. S., Caljouw, M. A., & van der Steen, J. T. (2021). Nederlandse vertaling en eerste stappen in validatie van de PPEET om burger-en patiëntenparticipatie te evalueren. TSG-Tijdschrift voor gezondheidswetenschappen, 99(4), 146-153. https://doi.org/10.1007/s12508-021-00316-9

Vlčková, K., Loučka, M. (2022) Zpráva o projektu mySupport Study. E-psychologie, 15 (4), 79-83. https://doi.org/10.29364/epsy.423

mySupport study blog articles


mySupport study videos

Please find mySupport study videos here.

The educational intervention designed to support family carers, mySupport study research partners, and how the study is being carried out. Click on the language of your choice: English | Italian | Czech | Dutch | French Canadian

Two-part video podcast by Dr Marcel Arcand
In this two-part video podcast Dr Marcel Arcand, author of the Comfort Care at End-of-Life booklet, describes how end-of-life care can be implemented for people with advanced dementia. He also explains the features of a “low-tech high-touch” approach to care. The video podcasts are available with subtitles. Click on the language of your choice: English: Part 1 | Part 2 | Dutch:  Part 1 | Part 2 | Italian: Part 1 | Part 2 | Czech: Part 1 | Part 2 | French Canadian: Part 1 | Part 2

Flyers

Click on the language of your choice below to download a tri-fold flyer providing an overview of mySupport study, its aim and vision: English | Italian | Czech

Click on the icon to view the digital flyer providing an overview of mySupport study, its aim and vision. [Available in English only]

The Comfort Care Booklet

Other links that might be useful:

https://unc-zh.nl/onderzoek/mysupport/

https://palliaweb.nl/projecten-nationaal-programma-palliatieve-zorg-ii/mysupport-proactieve-zorgplanning-bij-dementie-doo

Related prior work

Several publications and knowledge translation events have supported the advancement of the Family Carer Decision Support framework, including 13 peer-reviewed articles alongside blogs, vlogs, and newsletters to reach diverse audiences. Key outputs from related research by team members highlight the challenges and the need for effective implementation strategies, providing essential context that underpins the current project’s objectives and approach.

For Further Information Contact:

Email: i.hartigan@ucc.ie