Winning hearts and minds! The time is now for recognizing the central role of carers in delivering Integrated Care

Winning hearts and minds! The time is now for recognizing the central role of carers in delivering Integrated Care

Family carers[1] care for loved ones including children and adults with additional needs, physical or intellectual disabilities, frail older people, those with palliative care needs or those living with chronic illnesses, mental health challenges or addiction. They provide continuity of care – physical, emotional, and medical support – within the home, while managing their own needs and the needs of the wider family.

Family carers are the backbone of care provision right across the globe and are often overlooked and undervalued. The current integrated care model, although mentions ‘families’ and informal care does not in practice include or support a family carer. Family carers play a crucial role in all 9 Pillars of the Integrated Care but in particular, Partners in Care and Shared Value and Vision.

Health problems trigger the need for caregiving, emphasizing the importance of partnerships and supports from health providers and integrated health and social care systems. These systems are critical elements in supporting caregivers, ensuring they have the resources to manage their caregiving responsibilities effectively.  However, the role of the family carer is rarely recognised by health and care professionals, nor are they supported or encouraged to participate in care planning for the person they care for.

Carers continue to lack recognition for their role in the provision of care for their loved ones, particularly at critical points in discharge and transitions to continued support in the home. Discharge failure is often due to a breakdown in communication that involves a lack of involvement with the family carer or the individuals informal support team (family members, neighbours and friends), and connections between professionals and carers, as well as between hospitals and communities needs to be strengthened.

As health and care systems evolve towards more integrated and coordinated care, making family carers key partners will benefit the person they care for, policymakers, stakeholders, and healthcare professionals.

There is no better time than now to ensure the family carer is a key partner and supported in the integrated model.

The platform of the 24th International Conference on Integrated Care was identified as an important space to raise the profile of carers and ensure their voice is heard and their input is central to all decision made around the design and delivery of integrated care systems and services.

[1] Also referred to as ‘informal carers’ or ‘unpaid carers’ in some contexts.

To consider how best design a session for this conference, a group of people with an interest in the objective came together to discuss and design the session content. The group consisted of:

  • Fiona Lyne, International Foundation for Integrated Care (IFIC)
  • Sharon Anderson, University of Alberta
  • Richard Meade, Carers UK
  • Giulia Lanfredi, Eurocarers
  • Claire Champeix, Eurocarers
  • Miriam Galvin, International Foundation for Integrated Care (IFIC)
  • Maggie Lally, Family Carers Ireland
  • Lynne Dennehy, Family Carers Ireland
  • Pat Grogan, Family Carers Ireland

The session heard from the experiences of Ireland, the UK and Canada, and how these regions have made strides to improve the visibility and involvement of carers in care planning, and discussed what leverages, enablers and practical steps can be put in place to make carers an equal partner in the care team. We also heard from Eurocarers and the experiences from across Europe and the Commission to strengthen policy and legislation, provide guidance, and tools and skills for training to support carers. They looked at how we can we translate policy into practice, where policy made at the meso level is really practiced at the micro level. How can we work with professionals to improve the dialogue between clinicians, care staff and carers and give professionals the tools to be more proactive in including carers in important decisions, so there are more opportunities for long-term person-centred care planning, early diagnosis, preventing emergency admissions, and building a sustainable caring routine closer to home.

What emerged from the session is that “winning the hearts and minds” of healthcare professionals, stakeholders and policy makers is paramount in moving forward with better integration for family carers and the person they care for. In particular the session set out the following key points:


  • We must ensure that carers are valued and recognised by health and care professionals, stakeholders, and policy makers.
  • Carers must be involved in all decisions made by the care team in relation to the cared for person, especially around discharge into their care at home and in the community.
  • To ensure better continuity of care for the care for the person the family carer must be valued, recognised, and supported by health and care professionals.
  • Professionals must share the information and refer family carers when appropriate to organisations that are focused on supporting family carers to reduce carer burden and overall wellbeing.
  • It is important to win the hearts and minds of health and care professionals, stakeholders and policy makers if we are to be successful in our objectives of including family carers in integrated care model.
  • The professional (in the position of power) has the opportunity to achieve collaboration.
  • Education and Training for professionals will play a key role in carer inclusion in Integrated Care.
  • Eurocarers can add weight to the campaign to actively include the carer in the Integrated Care Model, through highlighting the objectives in a European Care Strategy
  • It is important to have measures in place to support and empower carers (i.e. income support, respite care, psychological support, education and training, carer’s leave, work-life balance measures), so that they can realise their full potential and are better equipped to take care of themselves, in addition to caring for others. This is essential for carers to be able to advocate for themselves and be equal partners in care.
  • The Scottish example shows how having some legislation and policies in place that recognises carers as equal partners in care is not sufficient in and of itself: a lot more needs to be done to be able to translate public policy into practice.

To keep this conversation moving forward we must …

  • Ensure that the benefits of integrating family carers is a key topic at future integrated care workshops, trainings and conferences.
  • We must continue to explore policy development for better integration for family carers through EuroCarers at European level.
  • We should formally recognise and involve family carers as valued members of the care team. Signpost or provide them with the necessary resources and support and integrate them seamlessly into the care delivery process.
  • Consider how we will ensure family carers awareness and integration is included in Healthcare Professional training.
  • Involve the family carer in the call for Integration.
  • Build a small library of case studies where carer integration worked, and the positive outcomes for all stakeholders.
  • Encourage family carers to follow the blog.

The 24th International Conference on Integrated Care (ICIC24) gave the platform for this topic to be highlighted. It is important to capture the hearts and minds of healthcare professionals, stakeholders, and policy makers now, so that the integration of family carers in care provision is a normalised.

Fiona Lyne
International Foundation for Integrated Care (IFIC)

Sharon Anderson
University of Alberta

Richard Meade
Carers UK

Giulia Lanfredi

Pat Grogan
Family Carers Ireland

Claire Champeix

Miriam Galvin
International Foundation for Integrated Care (IFIC)

Maggie Lally
Family Carers Ireland

Lynne Dennehy
Family Carers Ireland