Cystic fibrosis is an inherited disease that primarily affects the lungs and digestive system of a child. The child with cystic fibrosis can experience intense coughing episodes, difficulty breathing, and poor weight gain. Children with cystic fibrosis require intense treatment, which includes the involvement of a variety of medical disciplines. The importance of the behavioral and psychosocial aspects of cystic fibrosis in helping children cope with this disease has become increasingly recognized and better understood. Some of the potential psychological aspects that maybe present for the child with cystic fibrosis are:
- Understanding and coping with the diagnosis.
- Difficulty adhering to prescribed medical treatments (e.g., diet).
- Anxiety related to medical visits and potential for repeated hospitalizations.
- Social issues related the stigma or label that may accompany the disease (e.g., constant coughing, need for medication, treatment and missed social events because of medical care).
- Questions regarding the long-term prognosis of the disease.
- Absence from school and the subsequent, stress related to keeping up with academic demands and absences due to illness.
Pediatric psychologists work closely with the child and family to understand their specific concerns related to the illness and develop interventions that assist them in coping with the disease and minimizing its negative impact on their development. This approach also includes sensitivity to the developmental issues/stages that each child is at regarding the disease. In addition to this individual level of intervention, it is equally important to take a team approach with all those involved in the child’s care. This may include: parent meetings, family therapy as well as collaboration with the other professionals involved. Psychologists often work with hospital staff to help reduce the anxiety and discomfort around hospital admissions and developed strategies with teachers to help around educational needs and missed assignments.
Dr. Jeremy Devlin is our psychologist with expertise in treating children with cystic fibrosis.