About EACD/IAACD:
The world congress on childhood-onset disabilities – a joint meeting of the European Academy of Childhood-onset Disability (EACD) and the International Alliance of Academies of Childhood Disability IAACD) – was held on June 24-28, 2025 in Heidelberg, Germany. This conference offered a mixture of oral presentations, workshops and poster sessions, and offered hybrid attendance options.
EACD/IAACD 2025 Session Presentation:
A session at the conference was entitled, “How Do We Measure Families’ Experiences with Healthcare Services – and How Do We Use this Information? Co-developing and Implementing a New Measure of Family-Centred Service with Parents”
Presenters:
- Chair: Dr. Kraus de Camargo
- Presenters: Dr. Kinga Pozniak, Elizabeth Chambers, Rachel Teplicky
- Additional Authors: Dr. Peter Rosenbaum, Dr. Gillian King, Dayle McCauley, Rachel Martens, Eric Duku
- Affiliations: CanChild and McMaster University
Session Aims:
- To offer key elements of Family-Centred Service (FSC)
- To describe the co-development of a new measure of Family-Centred Service (FCS) with parents
- To encourage discussion about implementing FSC
Summary
The session addressed innovation in FCS including meaningfully engaging families in the development of a measure to examine FCS. Based on the work of CanChild at McMaster University in Hamilton, Ontario, the presenters emphasized that how healthcare and service professionals interact with, and provide services to, families, has a strong impact on families’ experience of those services. There is an urgent need for healthcare and service providers to ensure that services are responsive to individual and family needs, and families’ perspectives are reflected in services.
For families, this is reported to potentially decrease stress, and improve confidence and self-efficacy. Unfortunately, however, many families identify negative experiences with how services are currently delivered.
What is Family-Centred Service?
FCS is an approach to providing services to families. FCS looks at every child within the context of their family. It recognizes that every family is unique, and this approach values parents as experts on their child’s needs and strengths. In this approach, families and healthcare and service providers work together as a team to make decisions about care and support—not just for the child, but also for the family.
What Does It Mean to Be Family-Centred?
There are many aspects to being family-centred. These include:
a - How service providers work with families – for example:
- Making sure care is well-coordinated and easy to access
- Communicating openly and honestly, while being supportive and responsive to families’ needs
- Working together with families on care plans
- Treating families with respect
- Considering the needs of the whole family (the child, parents, siblings, and other important carers)
- Providing care that is truly helpful and supportive
b - How programs offer services. Families need services that are:
- Available
- Accessible
- Coordinated
Why Family-Centred Care Matters
When families experience care that is family-centred, caregivers feel less stressed and more confident and capable to support their child’s well-being. On the flipside, when family-centered care is not provided well, caregivers feel stressed, frustrated, upset, angry, exhausted and afraid.
To learn more about FCS, check out CanChild’s website: https://www.canchild.ca/en/research-in-practice/family-centred-service
An Example of Implementing FCS in Action
At CanCHILD, families have been integrally involved in the co-development of the Measure of Process of Care 2.0 (MPOC 2.0), a questionnaire that measures FCS in the context of children’s healthcare/rehabilitation centres and programs.
Families and other co-researchers have worked together to ensure that this measure addresses service components that matter to families. Specifically, the measure assesses whether services are:
- Supportive and Collaborative – Listen to families and treat them with respect, recognize families’ knowledge, and see the child as a whole person and don’t just focus on a diagnosis
- Holistic – Address the needs of all in the family
- Available – Easy to access
- Coordinated – Healthcare and service providers work together and share information to give families a more connected care experience.
As another example of FCS, CanChild has developed a series of sheets that include elements of FCS:
- What is family-centred service?
- Myths about family-centred service
- Are We Really Family-Centred? Checklists for Families, Service Providers and Organizations
These examples of inclusive capacity building initiatives illustrate important work toward building practice and service that is family-centred; that means resources in which families truly are integral in service delivery.
CanChild is currently working on updating its website with more information on FCS that can be helpful to families, healthcare and service providers and researchers. You can follow them here: https://canchild.ca/research-in-practice/family-centred-service/
Take Home Message
Integrating families in all aspects of service development and delivery pushes against the risk of only being tokenistic in our commitment to person and family inclusion. Ensuring the voices of families are included can help move toward change. The inclusion of youth and families in services and service planning has the potential to deeply affect how these services are delivered and experienced.
What Can I Do with This Information?
If you, or someone you know, is struggling with healthcare or rehabilitation services that are not as family-centred as you hoped, sharing the resources linked above with your child’s care provider can help get the conversation started on what sort of support your family could benefit from moving forward.
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