Christine Murphy MD and Sally Robinson MD
The prevalence of childhood disabilities increased by about 15% from 2001-2011, with a significant increase in neurodevelopmental disabilities (1). Despite advances in medicine to improve morbidity and mortality, including for preterm infants, the overall prevalence of spastic cerebral palsy has remained unchanged (2, 3). Many children with chronic healthcare needs (including but not limited to those with congenital malformations) look different, act differently, speak with impediments, walk with an awkward gait, drool, or are incontinent. It is imperative for the healthcare team who work with such children to recognize their own discomfort.
Physicians often are most comfortable with patients who have well-defined, short-term illnesses. Such patients have a good prognosis for being restored to a previous state of health after specific intervention by the healthcare team. Medical schools teach how to practice illness-focused healthcare quite well, and physicians learn much less about chronic conditions, other than diagnoses and probable causes. Part of the frustration of caring for individuals with chronic illness is the physician's inability to cure or fix them. Therefore, physicians often are reluctant to manage patients with chronic conditions. Some of the reasons for this are explored in this chapter.
Unfortunately, lack of understanding is one reason physicians are uncomfortable caring for these patients. Although there is a broad body of knowledge about management of chronic conditions, there has only recently been a push to publish about this patient population in the medical literature. Often, this topic is published in humanities, nursing, psychology, social science, and public health literature that physicians might not often read. Furthermore, because of differing theoretical frameworks and methods, much of the research in this area is difficult to compare and replicate. Despite these barriers, you are encouraged to explore the literature related to chronic conditions. Truly, physicians will be caring for more children with chronic conditions than ever before.
This chapter is neither a comprehensive review of chronic conditions in childhood nor a treatise on death and dying. It should help you gain insight into these difficult areas and stimulate further reading, thought, and discussion.
After completing this chapter, you should be able to:
- Describe the unique features of chronic conditions and the implications for management for the patient
- Recognize common emotional responses of patients, families, and healthcare providers to chronic illness, death, and dying.
- Identify interventions helpful for assisting the patient and family with initial and long-term adjustment to a chronic condition.
- Describe the supportive role that can be taken by all healthcare providers, the community, and the family.
Photo from Photospin by Denys Kuvaiev