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Expecting the arrival of a grandchild is a great source of joy and excitement. Many grandparents see the birth of their grandchildren as an opportunity to pamper them, to follow their first steps, to experience moments of complicity, or to share their love, their values and their knowledge.

But the joy and excitement are sometimes turned upside down when their grandchild is born with a disability or if a disability is revealed during infancy. How do grandparents receive such news and how do they experience the difference of their grandchild?

What research tells us

A recent systematic review examined 31 studies on the experiences of grandparents of children with physical, intellectual or neurodevelopmental disabilities.(1) The participants, aged 30 to 80, were very different from each other in terms of health, education, employment and socio-economic status. That being said, more than 80% of the participants in these studies were grandmothers. The analysis reveals four major themes in these studies: adapting to the disability, redefining the roles of grandparents, perceptions, and the lived experiences of grandparents.

1. Adapting to the disability

Denial, sadness, frustration, worry and anger are emotions that grandparents may experience when they learn of their grandchild's disability, as their expectations of grandparenthood are turned upside down. After the diagnosis is made, the majority of them worry about the development and well-being of their grandchild, but they also fear for the psychological, physical and financial health of their own child.

After the initial shock, most grandparents show positivity and resilience, while providing support to their family. This is particularly the case for those who live close to the parents' home, when they are young and in good health, when they have a good understanding of the grandchild's disability, when the relationship is good with the parents, and that the latter wish to include them in the circle of care. Although most come to terms with their grandchild's disability, some grandparents cannot cope with the feelings of grief and loss.

2. Redefining roles

In addition to their traditional role of listening, providing unconditional love and sharing their know-how, grandparents of a disabled child offer different types of support:

- Emotional support: they see their primary role as being supportive and being there for their adult child, but also enjoying emotional closeness with their grandchild.

- Financial support: they are willing to make personal financial sacrifices or even borrow money to cover costs related to the health and social needs of their grandchild.

- Instrumental support: they babysit, help with transportation, household chores and meal preparation, administer medication or perform therapeutic techniques.

3. A matter of perception

Many studies confirm that grandparents are often the first family members to accept the grandchild's condition and develop a positive view of their disabled grandchild. Many feel affection and unconditional love for their grandchild and consider grandparenthood to be rewarding despite the challenges.

4. The lived experiences of grandparents

The nature of the child's disability, which can lead to communication difficulties or behavioural problems, can sometimes be an obstacle to the development of relationships with grandparents. The disability of a grandchild can also take up all the space within the family and thus affect other intergenerational family relationships. Grandparents can also feel torn between their desire to help their family and the realization of their personal projects.

Studies have shown that grandparents have a great need for information. For example, they want to know the state of the child, develop knowledge and skills related to the disability, or find community services that could support them.

Grandparents offer great support, but what about their own needs? Many hide their emotional distress in order to be seen as strong and helpful to their families.

Are you a grandparent of a disabled child?

If you experience distress, sadness, incomprehension or a feeling of helplessness, remember that there are resources to support you. Talk to your health and social care professionals, and read our resources listed below about caregiving.