Miles apart, but more similar than we think

Christa Haanstra, Executive Lead, Strategic Communications

In May 2018, I attended the International Conference on Integrated Care in Utrecht, the Netherlands. While I was there, I met with Dutch organizations and professionals who work with family caregivers.

I quickly learned that the approach and infrastructure to support family caregivers in the Netherlands has many parallels to the system in the UK. Like the UK, there is legislation outlining caregivers’ rights. In addition, the caregiver support movement, in both countries, started as a grassroots movement and is supported by many health-related charities. When legislation was introduced, in both jurisdictions, it gave the efforts a notable boost in working towards having supports and services widely-available throughout their country.

The parallels extend even further – the Netherlands also has a national caregiver organization called Mezzo, and the responsibility for creating caregiver programs and supports resides with local townships and municipalities.

When The Change Foundation started our journey with family caregivers, we drew clear parameters for our work: to improve the identification, recognition and integration of family caregivers within healthcare settings. However, The Foundation knows all too well that caregiver needs extend far beyond the healthcare system.

Our focus is complementary to the work of other organizations such as the Canadian Association of Retired People (CARP) and The Vanier Institute. We monitor and collaborate with these organizations as they advocate for changes to support caregivers in other aspects of their lives, including the financial implications, and the ability to balance their career and work obligations alongside caregiving responsibilities. Slowly but surely, we are seeing positive changes such as the recent legislative changes to employee leave eligibility and tax credits for caregivers.

Although I didn’t find an equivalent of The Change Foundation in the Netherlands, I found the next best thing – The Expertise Centre on Informal Caregiving. The Centre is led by two organizations: Movisie and Vilans.

I met with a representative from each organization, who were also the co-authors of a 2015 Caregiver Action report commissioned by the Netherlands government. The report title – In voor Mantelzorg: samen sterker in zorg en ondersteuning – translates to ‘strengthening the collaboration between care organizations and informal caregivers, resulting in a joint contribution to quality care and client support.’

Co-design and common sense underpinned the approach to this report and its recommendations. It was developed through a collaboration of 80 health and social care agencies, who collectively engaged with more than 6,000 caregivers.

The Netherlands faces similar challenges to Ontario in getting healthcare organizations on board to collaborate with and support caregivers. Challenges in points of transition, use of system language instead of plain language, and systems and reward structures that don’t place value on family caregiver interactions by providers. With so many similarities, there’s a lot that we can learn from their progress.

Through their engagement process, they came to a common agreement on the issues and identified eight areas for change and improvement across the full spectrum of health, social and municipal services. The eight priority areas are:

  • Better collaboration
  • Common understanding of collaboration
  • Improving involvement for informal caregivers
  • Better information for clients and informal caregivers
  • Identifying caregiver burnout earlier
  • Removing prohibitive rules and regulations
  • Equipping informal caregivers
  • Use of digital communication and technology

From the beginning, they were clear that they would not use a ‘one size fits all’ methodology. Using decentralized decision-making meant that each organization could choose what area(s) their efforts would focus on and customize supports to meet the specific needs of caregivers within their setting. With a collective understanding of the needs and priorities, each organization took a different approach to programs and implementation and yet they still achieved broad-scale positive change.

For me, this refreshing thinking was inspiring. And the collective impact was clear.

In my opinion, the most impressive initiative were the partnerships with post-secondary institutions. The goal of these partnerships is to inform the curriculum and equip future healthcare providers to integrate family caregivers into their practices, right from the outset of their career. For those of us working to influence large-scale system change, it is clear that professional education and curriculum play a critical role in changing practice and culture within multiple healthcare disciplines. The ability to collaborate and inform changes to the curriculum is much more elusive. I will be watching with interest as the impact of this foundational component of the Netherlands action plan to improve caregiver experiences becomes evident.

The In voor Mantelzorg report is available online (use Chrome translate browser to read an English version), including some of the factsheets and tools:

  • 3-minute burnout assessment tool
  • Tools and factsheets for each sector of health and social care
  • Approach to post-secondary curriculum influence
  • Workbook for Provider Training
  • Path to Vitality

The Netherlands’ commitment to co-design and approach to identifying, recognizing and supporting family caregivers is inspiring. It offers hope for a better future for caregivers, and reinforces the importance of The Change Foundation’s multi-partner, co-design and iterative approach. It provides important insights and approaches that health and social care providers, administrators, policy makers, caregivers, patients and researchers can build on as we work towards improving supports and experiences for family caregivers in Ontario.

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