While self-management support has been a component of adult chronic care for decades, it is just emerging as a critical need for children, especially those with complex conditions. Self-management is a shared undertaking between the child, their parents and care providers, that takes into account the child’s developmental status and the family’s capacities. Clinicians need routine, standardized approaches and tools to address the unique needs of children and their families including assessing self-management capacity, skills, collaboratively setting goals, and promoting competence and autonomy in youth.
Discussing the article, Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions, the lead author and experts in the field reviewed the article’s key content and discussed how health systems could better support self-management by pediatric patients and their families. Access a recording and slides.
This was the fifth in a series of conversations that we will have throughout 2018, with authors of the PEDIATRICS Supplement: Building Systems that Work for Children with Complex Health Care Needs.
- Amy Houtrow, MD, PhD, MPH, Chief, Division of Pediatric Rehabilitation Medicine and Vice Chair of Physical Medicine and Rehabilitation, Children’s Hospital of Pittsburgh and University of Pittsburgh Medical Center
- Avani Modi, PhD, Professor of Pediatrics and Director, Center for Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center
Can you give more information on the Shared Plan of Care?
Amy: I would use this publication by the Lucile Packard Foundation for Children’s Heath, “Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs”.
Can Dr. Modi share what "barrier checklist/tool" she uses?
Avani: I can provide some examples of barriers checklists that we have used at Cincinnati Children’s Hospital. These can be adapted based on disease/treatment. There are also some tools that we have used to address barriers, that families helped us create. These are based on the evidence-based literature for adherence.
- Barriers to Immunosuppressants
- Barriers to Rheumatology Treatments (Caregiver Version)
- Barriers to Rheumatology Treatments (Patient Version)
- Barriers to Sickle Cell Management
- Remembering to Take Medication
- Learning to Swallow Pills
- Making Medication Taste Better
- Taking Medication in Public
There are also several transition checklists online by disease that nicely spell out the skills that can be learned over time. Here is one example.