Health, Social and Financial Inequities in Caring for Children With Lifelong Care Needs

Caregiver experiences of caring for a child with lifelong care needs reveal health, social, and financial inequities for the child and their family. Barriers that exist in health care, disability, and community-based supports often lead to inequities in health care, social participation and inclusion, social roles, and economic security. There is a need to understand inequities of caring for children with lifelong care needs to inform health and social care policy and nursing practice. Insufficient system support keeps caregivers struggling with unrealistic care responsibilities and health, social and financial inequities. This study aimed to explore these inequities by posing the following research question: What are the care-related responsibilities, challenges, and support needs for caregivers of children and young adults with lifelong care needs? This article reports on the qualitative component of a larger study based on multiple method design. Twenty-one caregivers took part in interviews to describe their experiences, challenges and needs. Thematic analysis was used to describe caregiver experiences in the following areas: a) termination of supports across all areas of life; b) indefinite extreme care work; and c) growing isolation with an uncertain future. In summary, the lack of understanding of families caring for children with lifelong care needs prohibits advancement of further research, strategies and policies. This knowledge can inform future development and access to effective supports from nursing and other health care providers, as well as policy solutions for families across health, social, and economic domains.