Patient navigators in children with chronic kidney disease

A patient navigator program. The navigator will work with patients, caregivers, health professionals to achieve better care and health through involvement in the social, community and health organisational network. It is a complex intervention and will be individualised, tailored to the needs of the patients and families. The navigator will first identify the needs of the individuals and family, and then design the management plan. The navigator may work with the child and family on a daily basis (either face to face, or via telephone) or less frequently, depending upon the needs of the child and family. The navigator will be available to families during business hours on weekdays. Considering their overall caseload, the time navigators will allocate to each family will be approximately 1 hour per week. The family will have access to the navigator for 24 weeks. The navigator will follow a four-by-four matrix of tasks and network plan: 1. Identification of task categories for a specific patient and family: navigating tasks may consist of identifying and mitigating barriers with patients and healthcare professionals. They may include telling (explaining where and when a renal biopsy will be done), inquiring (asking about the potential barriers, such as language barriers to attend the next appointment after the biopsy), supporting (listening to the fears about the interventions) and coaching (discussing the potential questions the patients and families may wish to ask in the next appointment). 2. Facilitation for a specific patient and families: the navigator may coordinate communication, seek advice from non-medical and medical staff and help to bring patients in for the appointments. For example, the patient navigator may help the caregivers to keep track of appointments, particularly when the organisational and executive skills of the child are affected, provide social support, interpret health information provided by the clinicians and facilitate communication within the families when parents are separated. Navigators may help patients to forge a more participatory dialogue with their clinicians, and guiding the patients to ask the right questions, enhancing patient autonomy. Patient navigators can also provide support for caregivers; e.g. managing transport to and from the hospital or coping with the complex organisational network within the hospital, particularly for those of lower literacy, low SES and families from non-English speaking backgrounds. 3. Identification of networks: the navigators will identify all potential network interactions that are relevant to the patients and their families. These may include: the health service providers, the non-clinical staff (administrators and receptionist), and other social support services such as the social workers, community-based services, transportation, and the maintenance of activities and system tasks for patients. These potential networks will be given to patients and family, ensuring they have full understanding and access to all the services required. 4. Document and review: the navigator will record their own actions (for example: steps taken with or on behalf of the patients and record other activities that are relevant to the navigator role).