Chronic Sorrow in Parents With Chronically Ill Children

Purpose: To explore the lived experiences of parents with chronic sorrow caring for their child with a chronic medical condition without regard to the child's diagnosis. Designs and Methods: An interpretive phenomenological design was used. Participants were parent caregivers with chronic sorrow and had a chronically ill child. In-depth recorded interviews of 12 parents were conducted. Transcriptions were analyzed using hermeneutical techniques. Results: Six themes emerged from the data: surreality of diagnosis, unrealistic expectations, the battle, keeping it together, and doing whatever it takes. Life goes on, regardless of what is happening with the child, reflected an overarching truth for parents. Conclusions: Parent caregivers experience multiple challenges and overwhelming burdens in their lives. However, they were able to move beyond the struggles of caring for their chronically ill children, adapt to the new norm, and even gain optimism about their future. Practice Implications: Health care providers should be more familiar with chronic sorrow and its impact on the daily lives of families. Health care professionals of all disciplines must include the expertise of the family and primary parent caregiver in the management of the child's care. Although health care professionals have technical knowledge and expertise, the parent is the expert on the unique character of the family unit, and understands the subtle nuances of their child better than anyone else understands.