Systematic review: Care provided by grandparents of children with a chronic disease or a disability

Abstract

If a child is chronically ill or has a disability, the entire family system is affected, and grandparents are often an important part of the family dynamic. They are frequently the main resource for families. However, little is known on the type and role of care and support provided by grandparents when a grandchild is suffering from a chronic disease or a disability. We aimed to gain insight into the i) type and role of care and ii) type of support grandparents with a grandchild with a chronic disease or disability provide. We systematically searched the databases Pubmed, PsycInfo, SCOPUS, and CINAHL for peer-reviewed original research articles. We included publications on grandchildren up to 21 years suffering from a chronic disease or a disability and presenting results on type and role of grandparents’ self-reported care or support.We included 14 articles on 12 studies. All studies were of qualitative methods. We found that grandparents provide support for the ill grandchild, the parents, and the whole family. Their role was on the sideline, but a reliable support for the entire family, both, instrumental and emotional. However, grandparents reported a lack of knowledge regarding the grandchild’s condition.Providing appropriate information about the grandchild`s disease to grandparents could help improve understanding and facilitate appropriate support and care for the family by grandparents.

Keywords

• Grandparents
• Care
• Children
• Disease
• Disability
• Support