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Evaluating Practices That Foster Care Partnerships and Wellbeing Among Informal Carers and Long-term Care Workers (WELLCARE)

13. července 2026 aktualizováno: Ludo Glimmerveen, VU University of Amsterdam

WELL CARE - Implementation and Evaluation Phase

WELL CARE aims to strengthen the supports available to informal carers and long-term care (LTC) workers for improving their resilience and mental wellbeing through care partnerships. The project consortium, lead by prof. Elizabeth Hanson (Linnaeus University) and consisting of six research organizations and nine national and European advocacy organizations, identifies good practices able to prevent or mitigate both occupational and non-occupational risks for informal carers' and LTC workers' resilience and mental wellbeing. On this basis, and under its Grant Agreement with the European Commission, the project team develops innovative solution prototypes, which will be transferable across different countries and contexts and guide stakeholders into the actual implementation in 5 European Union (EU) countries (Germany, Italy, Netherlands, Slovenia, Sweden), where the LTC sector presents dissimilar characteristics. Finally, the investigators will exploit the data and evidence collected and generated by WELL CARE to analyze related EU and national policies, and to formulate action-oriented recommendations for policy makers and stakeholders.

The current study protocol concerns the research activities within Work Package 3 of the project, particularly the activities during the Implementation and Evaluation Phase that runs from September 2026 until the end of 2027. During this phase the project team studies the results of local implementation partners' efforts who - building on the solution prototypes developed earlier in the WELL CARE project - develop and implement new supportive work and care practices. The investigators study the effects that implementing these practices brings about among participating caregivers in terms of mental wellbeing, resilience and care partnership dynamics, while also studying the implementation process itself to capture the processes, conditions and (organizational) contexts favorable to fostering care partnerships.

Přehled studie

Typ studie

Intervenční

Zápis (Odhadovaný)

450

Fáze

  • Nelze použít

Kontakty a umístění

Tato část poskytuje kontaktní údaje pro ty, kteří studii provádějí, a informace o tom, kde se tato studie provádí.

Studijní kontakt

Studijní místa

Kritéria účasti

Výzkumníci hledají lidi, kteří odpovídají určitému popisu, kterému se říká kritéria způsobilosti. Některé příklady těchto kritérií jsou celkový zdravotní stav osoby nebo předchozí léčba.

Kritéria způsobilosti

Věk způsobilý ke studiu

  • Dospělý
  • Starší dospělý

Přijímá zdravé dobrovolníky

Ano

Popis

Inclusion criteria for recruiting participants will be...

For informal caregivers:

o currently providing - or having provided within the last 6 months - unpaid care or support to a family member, partner, or friend receiving long-term care services;

For long-term care workers:

  • employed in a long-term care setting at one of the participating research sites;
  • directly involved in care provision or implementation of the new practices under study;

For care recipients:

  • currently receiving care from long-term care workers and/or informal caregivers;
  • requiring support with everyday personal care and/or more complex daily tasks due to ageing, chronic illness, disability or frailty;
  • living in the community or in a long-term care setting included in the study;

    - for other stakeholders:

  • involved directly or indirectly in the planning, management, or implementation of the newly adopted practices at the research site;

For all participants:

  • aged 18 years or older;
  • able to provide informed consent;
  • sufficient proficiency in the local language to complete the questionnaire and/or participate in an interview;

The exclusion criteria for recruiting participants will be...

  • having a (permanent or temporary) psychiatric disorder or mental illness which makes the person unable to understand instructions and participate in the study activities;
  • experiencing circumstances that would make participation unduly burdensome (e.g., acute stress or illness);
  • providing care for fewer than the minimum number of hours required for inclusion; the threshold will be defined per country in a context-sensitive way, reflecting national differences and the characteristics of the implemented practices and their target populations;
  • only being involved in the provision or receiving of short-term or acute care (i.e., not long-term care);

Studijní plán

Tato část poskytuje podrobnosti o studijním plánu, včetně toho, jak je studie navržena a co studie měří.

Jak je studie koncipována?

Detaily designu

  • Primární účel: Výzkum zdravotnických služeb
  • Přidělení: Nerandomizované
  • Intervenční model: Paralelní přiřazení
  • Maskování: Žádné (otevřený štítek)

Zbraně a zásahy

Skupina účastníků / Arm
Intervence / Léčba
Jiný: Informal carers
adults (≥18 years), providing- usually- unpaid care to someone (relatives or friends) with a chronic illness, disability and/or other long lasting health and/or care need, outside a professional or formal framework
Project partners are developing a digital educational program for informal carers, covering different phases of caregiving. In addition, a peer-to-peer support program will be developed following a train-the-trainer format. Activities also focus on securing structural funding and enabling broader rollout across the country.
Project partners are collaborating with a large long-term care provider to develop a process for the co-creation of care plans with informal carers. In addition, a mindfulness-based stress reduction intervention is being developed in which informal carers and long-term care workers can participate jointly. These activities aim to improve communication and foster trusting relationships between these groups.
Project partners will work with the management of formal care institutions to provide leadership training focused on supporting informal carers' well-being and strengthening collaboration with them. In addition, workshops will be organized to enhance carers' skills, knowledge and self-care practices, alongside joint events to promote mutual understanding and collaboration between formal and informal carers. Community-level activities will also be implemented to increase recognition of carers and the value of care.
Project partners are working across three sites with distinct areas of focus: (1) within respite care homes, fostering mutual support between informal carers and long-term care workers during the palliative phase and post-bereavement period; (2) within group homes for people living with disabilities, developing a person-centered model to strengthen mutual support and communication between informal carers and long-term care workers; and (3) strengthening support for informal carers during the waiting period for nursing home admission to reduce frustration, anxiety and stress.
Project partners will work across two sites with distinct areas of focus: (1) in collaboration with a disability care provider, improving relationships, communication and coordination between informal carers and long-term care workers in group home settings; and (2) in collaboration with a long-term care provider and an umbrella organization of local citizen-led initiatives, exploring ways to improve coordination and mutual support around initiatives that support ageing in place and strengthen the supportive capacity of local communities for care recipients and their informal carers.
Jiný: Long-term care workers
adults (≥18 years), working in home and/or residential care settings with people with LTC needs
Project partners are collaborating with a large long-term care provider to develop a process for the co-creation of care plans with informal carers. In addition, a mindfulness-based stress reduction intervention is being developed in which informal carers and long-term care workers can participate jointly. These activities aim to improve communication and foster trusting relationships between these groups.
Project partners will work with the management of formal care institutions to provide leadership training focused on supporting informal carers' well-being and strengthening collaboration with them. In addition, workshops will be organized to enhance carers' skills, knowledge and self-care practices, alongside joint events to promote mutual understanding and collaboration between formal and informal carers. Community-level activities will also be implemented to increase recognition of carers and the value of care.
Project partners are working across three sites with distinct areas of focus: (1) within respite care homes, fostering mutual support between informal carers and long-term care workers during the palliative phase and post-bereavement period; (2) within group homes for people living with disabilities, developing a person-centered model to strengthen mutual support and communication between informal carers and long-term care workers; and (3) strengthening support for informal carers during the waiting period for nursing home admission to reduce frustration, anxiety and stress.
Project partners will work across two sites with distinct areas of focus: (1) in collaboration with a disability care provider, improving relationships, communication and coordination between informal carers and long-term care workers in group home settings; and (2) in collaboration with a long-term care provider and an umbrella organization of local citizen-led initiatives, exploring ways to improve coordination and mutual support around initiatives that support ageing in place and strengthen the supportive capacity of local communities for care recipients and their informal carers.
Jiný: Care recipients
will be included in the study if their participation is not unduly burdensome. Care recipients in this study are individuals who require support with everyday personal care and/or more complex daily tasks due to ageing, chronic illness, disability or frailty. These needs are increasingly complex, frequently involving multimorbidity and requiring coordinated input from both formal long-term care services and informal carers. The characteristics and needs of care recipients are closely linked to caregiver burden, wellbeing and care intensity, and are therefore an important contextual factor in this study. Moreover, care partnerships dynamics may improve the quality of care that care recipients experience.
Project partners are collaborating with a large long-term care provider to develop a process for the co-creation of care plans with informal carers. In addition, a mindfulness-based stress reduction intervention is being developed in which informal carers and long-term care workers can participate jointly. These activities aim to improve communication and foster trusting relationships between these groups.
Project partners will work with the management of formal care institutions to provide leadership training focused on supporting informal carers' well-being and strengthening collaboration with them. In addition, workshops will be organized to enhance carers' skills, knowledge and self-care practices, alongside joint events to promote mutual understanding and collaboration between formal and informal carers. Community-level activities will also be implemented to increase recognition of carers and the value of care.
Project partners are working across three sites with distinct areas of focus: (1) within respite care homes, fostering mutual support between informal carers and long-term care workers during the palliative phase and post-bereavement period; (2) within group homes for people living with disabilities, developing a person-centered model to strengthen mutual support and communication between informal carers and long-term care workers; and (3) strengthening support for informal carers during the waiting period for nursing home admission to reduce frustration, anxiety and stress.
Project partners will work across two sites with distinct areas of focus: (1) in collaboration with a disability care provider, improving relationships, communication and coordination between informal carers and long-term care workers in group home settings; and (2) in collaboration with a long-term care provider and an umbrella organization of local citizen-led initiatives, exploring ways to improve coordination and mutual support around initiatives that support ageing in place and strengthen the supportive capacity of local communities for care recipients and their informal carers.
Jiný: Other stakeholders
The characteristics of other stakeholders included in the study may differ per research site, depending on the characteristics of the implemented practices and the context in which implementation is done. This group of respondents will include managers, planners, policy makers, organizational officials or care professionals who are not engaged in the caregiving process itself, but whose work is directly affected by the implemented practices at the research site, and/or whose work may either promote or hamper successful and sustainable implementation.
Project partners are developing a digital educational program for informal carers, covering different phases of caregiving. In addition, a peer-to-peer support program will be developed following a train-the-trainer format. Activities also focus on securing structural funding and enabling broader rollout across the country.
Project partners are collaborating with a large long-term care provider to develop a process for the co-creation of care plans with informal carers. In addition, a mindfulness-based stress reduction intervention is being developed in which informal carers and long-term care workers can participate jointly. These activities aim to improve communication and foster trusting relationships between these groups.
Project partners will work with the management of formal care institutions to provide leadership training focused on supporting informal carers' well-being and strengthening collaboration with them. In addition, workshops will be organized to enhance carers' skills, knowledge and self-care practices, alongside joint events to promote mutual understanding and collaboration between formal and informal carers. Community-level activities will also be implemented to increase recognition of carers and the value of care.
Project partners are working across three sites with distinct areas of focus: (1) within respite care homes, fostering mutual support between informal carers and long-term care workers during the palliative phase and post-bereavement period; (2) within group homes for people living with disabilities, developing a person-centered model to strengthen mutual support and communication between informal carers and long-term care workers; and (3) strengthening support for informal carers during the waiting period for nursing home admission to reduce frustration, anxiety and stress.
Project partners will work across two sites with distinct areas of focus: (1) in collaboration with a disability care provider, improving relationships, communication and coordination between informal carers and long-term care workers in group home settings; and (2) in collaboration with a long-term care provider and an umbrella organization of local citizen-led initiatives, exploring ways to improve coordination and mutual support around initiatives that support ageing in place and strengthen the supportive capacity of local communities for care recipients and their informal carers.

Co je měření studie?

Primární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Resilience
Časové okno: Baseline (within 1 month before the intervention) and follow-up (within 1 month after completion of the intervention).
Measured using the 2-item Connor-Davidson Resilience Scale (CD-RISC-2). Items are scored on a 5-point Likert scale (0 = "not true at all" to 4 = "true nearly all of the time"). Scoring: sum of items (range 0-8); higher scores indicate greater resilience.
Baseline (within 1 month before the intervention) and follow-up (within 1 month after completion of the intervention).
Mental wellbeing
Časové okno: Baseline (within 1 month before the intervention) and follow-up (within 1 month after completion of the intervention).
Measured using the 7-item Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS). Items are scored on a 5-point Likert scale (1 = "none of the time" to 5 = "all of the time", looking at the past two weeks). Scoring: sum items (range 7-35); higher scores indicate better mental wellbeing.
Baseline (within 1 month before the intervention) and follow-up (within 1 month after completion of the intervention).

Spolupracovníci a vyšetřovatelé

Zde najdete lidi a organizace zapojené do této studie.

Vyšetřovatelé

  • Vrchní vyšetřovatel: Elizabeth J Hanson, PhD, Linnaeus University

Publikace a užitečné odkazy

Osoba odpovědná za zadávání informací o studiu tyto publikace poskytuje dobrovolně. Mohou se týkat čehokoli, co souvisí se studiem.

Užitečné odkazy

Termíny studijních záznamů

Tato data sledují průběh záznamů studie a předkládání souhrnných výsledků na ClinicalTrials.gov. Záznamy ze studií a hlášené výsledky jsou před zveřejněním na veřejné webové stránce přezkoumány Národní lékařskou knihovnou (NLM), aby se ujistily, že splňují specifické standardy kontroly kvality.

Hlavní termíny studia

Začátek studia (Odhadovaný)

1. ledna 2027

Primární dokončení (Odhadovaný)

1. září 2027

Dokončení studie (Odhadovaný)

30. září 2027

Termíny zápisu do studia

První předloženo

25. června 2026

První předloženo, které splnilo kritéria kontroly kvality

13. července 2026

První zveřejněno (Aktuální)

16. července 2026

Aktualizace studijních záznamů

Poslední zveřejněná aktualizace (Aktuální)

16. července 2026

Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality

13. července 2026

Naposledy ověřeno

1. července 2026

Více informací

Termíny související s touto studií

Další identifikační čísla studie

  • WELLCARE-WP3-Study

Plán pro data jednotlivých účastníků (IPD)

Plánujete sdílet data jednotlivých účastníků (IPD)?

ANO

Popis plánu IPD

De-identified individual participant data underlying the results reported in publications arising from this study (including questionnaire data collected at baseline and follow-up) will be made available under controlled access. Direct identifiers will not be shared. Qualitative interview and focus group data will generally not be shared because complete de-identification cannot be guaranteed and disclosure may compromise participant confidentiality.

Časový rámec sdílení IPD

De-identified individual participant data and supporting documentation will become available following publication of the primary study results. Data will remain available for at least 10 years, subject to the policies of the hosting repository and applicable legal and ethical requirements.

Kritéria přístupu pro sdílení IPD

De-identified individual participant data and supporting documentation will be available to qualified researchers for scientifically sound research purposes. Data will be deposited in Zenodo. Access to individual participant data will be provided under controlled access following review of a data access request and, where applicable, a data sharing agreement, in accordance with participants' informed consent, the EU General Data Protection Regulation (GDPR), and applicable national data protection legislation.

Typ podpůrných informací pro sdílení IPD

  • PROTOKOL STUDY
  • MÍZA

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Ne

Tyto informace byly beze změn načteny přímo z webu clinicaltrials.gov. Máte-li jakékoli požadavky na změnu, odstranění nebo aktualizaci podrobností studie, kontaktujte prosím register@clinicaltrials.gov. Jakmile bude změna implementována na clinicaltrials.gov, bude automaticky aktualizována i na našem webu .

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