Experiences of Caregivers as Clients of a Patient Navigation Program for Children and Youth with Complex Care Needs: A Qualitative Descriptive Study

The number of Canadian children and youth with complex care needs has continued to rise, and their need for resources across all sectors can be extensive. Navigating the maze of resources and services can create confusion and impact how care is delivered and integrated. Patient navigators can help support and guide patients and caregivers through the healthcare system by matching their needs to appropriate resources with the aim to improve access and promote the integration of care. This qualitative study explored caregivers’ experiences caring for a child or youth with complex care needs, and their experiences and satisfaction as clients of a patient navigation centre. Participants included 22 clients from NaviCare/SoinsNavi, a patient navigation centre in Canada for children and youth with complex care needs and their families. Three main themes emerged: 1) caring for a child or youth with complex care needs, 2) navigating the system, and 3) the value of patient navigation. Findings suggest caregivers caring for a child or youth with complex care needs often feel overwhelmed, fearful, and alone; yet, patient navigation can be an innovative approach to support their needs through facilitating more convenient and integrated care, and improving access to education, supports, and resources.