Providing care to chronically ill children challenges everyone, from the physicians to the nurses, and especially the family. Beyond the medical management of the child's disease, doctors and nurses need to assess and support the psychosocial needs of the child as well as their family members:
"We must guide patients and families through a maze of difficult medical decisions so they emerge understanding and accepting the choices they’ve made. We must, at the most basic level, manage the pain and other symptoms that accompany the child’s illness and corral resources to alleviate families’ economic hardship. We must work with primary care pediatricians who have ongoing relationships with the family and community of the seriously ill child. In cases where the end of life approaches, we must help families and children through one of life’s most excruciating moments and support them in their bereavement."
Seems daunting to provide this level of support, doesn't it? Take comfort knowing that when doctors and nurses choose to provide trauma-informed care, not every child and family will need the same level of support. The majority will benefit from psychoeducation, comfort, and basic assistance. A smaller number with acute distress will need interventions that focus on reducing symptoms of traumatic stress or promoting adjustment or adherence to medical treatment. Only a few families with severe distress will need mental health treatment.
Fortunately, learning to assess and support the emotional needs of children and families with chronic illness can be much easier than you think. The DEF Protocol provides a simple guide on how to assess your patients and families emotional needs, as well as distress and family needs, all within your scope of regular care. Or use the extensively research Psychosocial Assessment Tool. Maybe enroll in the "E is for Emotional Support: Who and What Does Your Patient Need Now?" course to learn how to provide effective emotional support to a family. If you work with pediatric oncology patients, consider implementing the Surviving Cancer Competently Program for Newly Diagnosed (SCCIP-ND), a brief, manualized intervention for parents and caregivers of children newly diagnosed with cancer. Integrating cognitive-behavioral and family-systems interventions, SCCIP-ND targets early traumatic stress responses and helps parents support their child's and family's coping with cancer and its treatment. SCCIP-ND can be implemented by trained medical and mental health professionals and can be part of the patient centered care plan.
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