| Address health literacy |
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Provide information on disease at the time of new diagnosis to build patient’s knowledge base on disease progression and treatment, in advance (e.g., information on dialysis or transplantation provided before commencing treatment).
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Assist children with CKD and their families to understand and process information when they receive a new diagnosis (e.g., diagnosed newly with CKD or kidney failure).
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Provide information in culturally sensitive and plain language through trusted sources of information to caregivers and age-appropriate information to children when they receive a new diagnosis or treatment (e.g., from nephrologists or nurses prior to commencing dialysis).
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Communicate at the level of the child (e.g., discuss challenges of attending school with PD catheter with the child).
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Connect families with support networks (e.g., peer support groups).
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| Improve access to care through E-health |
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Enable caregiver access to digital platforms that enable appointment scheduling, and access to electronic medical records (e.g., to access to appointment schedules and medicine prescribed).
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Facilitate sharing of medical history and emergency plans across all care providers, to ensure alignment, consistency, and clarity (e.g., share medical history between rural metropolitan settings, or clinicians of child with multiple morbidities such as kidney failure and neurological disorders).
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Foster preventative care through forward thinking and planning, rather than reactive care or curative care through timely surveillance including remote surveillance and monitoring with remote systems (e.g., back to base blood pressure monitoring for patients on dialysis).
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Establish a hybrid consultation system (in-person, telehealth, and eHealth).
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| Ensure financial support and reimbursements are sufficient, easy to access and provided in a timely manner |
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Structure easy to access income support systems.
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Modify income support and disability support systems and criteria to include rare CKD (raise awareness around rare diseases and needs to ensure eligibility).
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Ensure that payments/reimbursements of costs of care and out of pocket costs are sufficient and provided in a timely manner (e.g., covers costs of catheters, meal vouchers, and travel concessions).
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| Improve care coordination |
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Institute care coordinators or patient navigators as part of the care system to ensure:
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linkage to various services (e.g., link gastroenterology and nephrology teams)
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They act as a single point of contact (coordinating between dialysis nurses, nephrologist, dietician and dialysis product providers).
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Coordinate appointments as convenient to caregivers for example, to reduce travel and accommodation burdens and impacts on work.
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Ensure caregiver psychosocial support and respite.
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Provide assistance to siblings and other family members.
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| Foster effective communication between children with CKD/parents and clinicians |
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Foster trust and honesty between clinicians and caregivers through open communication.
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Train clinicians on effective communication with caregivers and shared decision making (e.g., choice around dialysis modality).
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Provide individualized care for each child specific to the needs of the patient and family (e.g., organize dialysis schedule to enable the child to attend school, and recommend a diet plan that considers the ethnicity of the child).
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Enable access to patient navigators to assist with communication and advocacy.
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Empower and enable patients to voice their opinions (e.g., choice of kidney replacement therapy – dialysis vs. transplant).
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| Enable social connectedness and caregiver support |
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Provide information on peer support programs and social networks.
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Establish and promote community events, clubs, or groups that cater to various interests and demographics.
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Organize community centers to act as hubs for social interaction that offer a variety of activities.
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