The parental experience of parent-child communication in the management of a parent's chronic relapsing illness

This study examines how parents living with Crohn's Disease conceptualize and approach the task of communicating with children about illness. By investigating the parental experience of communication in the context of a chronic relapsing illness such as Crohn's Disease, this study addresses a neglected issue in the literature on family systems and illness: the intentions, struggles and needs of the parent living with an illness. Topics include: direct verbal communication, parents' experience of non-verbal and affective communication, children's questions, and talking about hospitalizations and crises.; Ten parents diagnosed with Crohn's Disease and coping with symptoms in the past three years were interviewed using a semi-structured qualitative research design. All of the participants have children between the ages of five and eighteen.; Participants advocated talking with children about their illness and revealing some information and experience while sheltering children from information and experience that might be frightening. Participants emphasized the importance of structure, stability and attending to the instrumental needs of the family. Participants reported that they struggle, at various times, with what to share their children. Often this occurs when the demands of the illness, the needs of the parent, or the needs the children require a realignment of the usual interactions within the family. When they reveal areas of vulnerability to their children that they are not necessarily comfortable revealing, parents also struggle with communication.; The challenges of overtly attending to the multiple ways parents and children share affective and instrumental information require that parents manage complex interactions in the family. When they are struggling with how to effectively engage and talk with children about the experience of living with Crohn's Disease, parents often face questions that challenge how they think about parenting, self-care and communication with children. Clinical implications and topics for future research are addressed.