Helping patients & families cope with chronic disease
In treating young patients who have chronic physical conditions, health care professionals focus — as they must — on alleviating the physical suffering caused by the disease.
However, as a graduate of the REACH course Patient-Centered Mental Health in Pediatric Primary Care, you know the importance of supporting the mental and emotional health of young patients and their caregivers.
A new article in Pediatrics highlights the importance of mental health care for families dealing with chronic illness. “A Roadmap to Emotional Health for Children and Families With Chronic Pediatric Conditions” is unique in that it leads with the experiences of caregivers. In their own words, Diane M. Pickles and Stacey L. Linh, leaders of a support organization for parents of children with hypoplastic left heart syndrome, highlight the deep needs of families. Ms. Pickles writes:
In 23 years of complex care at a top-notch hospital, I do not ever remember a doctor asking [my son] Jake or myself how we were coping emotionally. . . . And although Jake has half a heart, the mental health struggles have been the more painful part of our journey in many ways.
The pediatric researchers on the author team, Dr. Thomas Boat and Dr. Carole Lannon of Cincinnati Children’s Hospital, support the firsthand experience of these parents with summaries of evidence about how chronic disease affects mental health — and vice versa. The stress of coping with a chronic condition often affects adherence and can make the condition worse. Furthermore, long-term mental health challenges, stretching into adulthood, have been associated with childhood chronic illness.
The bottom line, as Dr. Boat writes, is that “Pediatric chronic care medicine must more effectively deliver interventions that promote family wellness and resilience.”
The Pediatrics article highlights research conducted for the Roadmap Project of the American Board of Pediatrics. (See Resources below.) The research included conversations with families, clinicians, and quality improvement specialists; a literature review; and a landscape analysis of learning network initiatives. One key recommendation is the need to normalize mental health assessment:
Begin conversations about emotional health and resilience early, at the time of diagnosis and/or shortly thereafter, and address it at many or most visits. Highlight the importance of self-care for parents.
The Roadmap Project is designed to help pediatric clinicians address the mental health challenges that come with chronic disease. Check out the resources below to see how they might fit into your toolkit for integrating mental health care in your practice.
The American Board of Pediatrics Roadmap Project offers resources for clinicians including:
- An introductory video that encourages healthcare professionals to ask families, “How Are You Doing?”
- A “change package” with a complete set of tools to help learning networks and quality improvement teams plan processes to integrate mental health into routine care.
- Example conversations with patients and caregivers for specific clinical situations, such as first diagnosis of a chronic condition and introduction of routine mental health screening.
- Assessment & screening
- Child mental health
- Cognitive behavioral therapy
- College transition
- Culturally responsive
- Eating disorders
- Foster care
- High-risk children & youth
- Patient communication
- Pediatric primary care
- School refusal
- Sleep disorders
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