Counseling Children With Cystic Fibrosis: Recommendations for Practice and Counselor Self-Care

Abstract

Cystic fibrosis is a progressive, chronic disease that affects approximately 30,000 adults and children in the United States. Counseling children with the special needs specific to cystic fibrosis can be overwhelming for mental health professionals due to the progressive and deteriorating nature of the illness, long-term contact with clients, and discouraging prognosis. Being exposed to long-term therapeutic relationships with chronically ill children and witnessing treatment failure can contribute to burnout, compassion fatigue and vicarious trauma in counselors, highlighting the need for targeted literature addressing holistic self-care strategies. The purpose of this manuscript is to provide a review of the current literature illuminating the challenges facing children with cystic fibrosis and to provide targeted self-care suggestions for professional counselors working with this population.Keywords: children, chronic disease, compassion fatigue, cystic fibrosis, self-careCystic fibrosis (CF) is a chronic, terminal disease targeting most organ systems (Withers, 2012) and affects approximately 30,000 children and adults nationwide (Cystic Fibrosis Foundation [CFF], 2014a). CF primarily affects the gastrointestinal and respiratory systems (Withers, 2012), and although the life expectancy has greatly improved, CF is fatal and there is no known cure (CFF, 2014a). Counseling children with chronic illnesses, such as CF, presents special challenges for mental health professionals (Sidell, 1997), including professional counselors. As the nature and severity of clients' problems impact levels of counselor burnout or compassion fatigue (Figley, 2002), it is essential that professional counselors working with children with CF maintain healthy self-care practices.There is an abundance of information examining the physiological aspects of CF that clients experience throughout the disease progression (CFF, 2014a; Pearson, Pumariega, & Seilheimer, 1991; Sawicki, Sellers, & Robinson, 2009; Sawicki & Tiddens, 2012). However, there is limited literature on the special considerations that need to be taken when counseling children with CF. Furthermore, there is a paucity of counseling literature targeting how professional counselors can foster personal self-care while working with young clients with special needs and chronic conditions. The purpose of this manuscript is to provide a review of literature that illuminates the challenges facing children with CF and provides a primer for self-care suggestions for professional counselors who work with these children.Special Needs of Children with Cystic FibrosisPhysiological Challenges Facing Children with Cystic FibrosisProfessional counselors need to be knowledgeable of chronic diseases affecting their clients in order to be sensitive to the traumas experienced by children and families coping with illness (Thompson & Henderson, 2007). CF is most commonly diagnosed during newborn screening and severely affects the exocrine system (CFF, 2014b). Within the exocrine system, there is a lack of appropriate enzymes available during digestion, so children with CF are unable to properly digest their food and absorb essential nutrients for healthy growth and development. They experience recurrent gastrointestinal distress such as issues of diarrhea and constipation with foul-smelling stools due to poor absorption (CF Living, 2014). As such, children with CF often suffer from malnutrition and an inability to maintain a healthy weight. However, the most notable signs and symptoms affecting children with CF result from chronic lung and respiratory infections that lead to frequent coughing spells to clear the lungs of thick mucus. This inability to clear the lungs requires multiple episodes of daily chest physiotherapy (Berge & Patterson, 2004). Over time, the respiratory infections produce lung damage that appears cyst-like, giving name to the disease cystic fibrosis (CFF, 2014a). …