Abstract

This caring inquiry grounded in hermeneutic-phenomenologic philosophical perspectives was conducted to uncover the family experience of living with childhood chronic illness. The purpose of this study was to describe and interpret the family's experience and to sensitize health care professionals about this experience. ;The presence of a child with chronic illness in a family is a unique, yet not uncommon experience. Chronic illness is both a personal misfortune and a sign of progress. No longer illnesses to die of, but still not thoroughly curable, these illnesses become illnesses to live with. ;Data were generated from audiotaped interviews, photographs taken by the families, the art work of the children, and the researcher's journaling. Eight family and thirty two individual interviews were the source of text for analysis. ;Data analysis was guided by a caring inquiry combining the hermeneutic-phenomenologic approaches of van Manen and Ray and select philosophers. The analysis included several levels of reflection. The first level of reflection revealed the descriptions and themes of the families. The families' metaphor of Traveling a Different Road also emerged. In the second level of reflection literature and poetry were used to illuminate the experiences of these families and the themes were linguistically transformed into the seven metathemes of the experience: Embodiment of Illness: Being In Tune, Temporal Changes: Living With Uncertainty, Relationships: Creating a Caring Community, Interacting With Our Environment: Being Aware, Endowing the Illness With Meaning: Understanding the Illness, Confronting Death, Affirming Life: Living With Dying, and A Spiritual Transcendence: Faith, Hope, and Love. Through deeper reflection, the unity of meaning, A Way of Life: A New Beginning Each Day, was revealed as metaphor. A theory of coming to understand the meaning of chronic illness as, A Way of Life: A New Beginning Each Day, integrates the themes, metathemes, and family metaphor. ;This research makes a strong plea for transforming health care delivery for children with chronic illnesses from a medically based, categorical, illness structure to an experiential, holistic, family-centered process. Implications for health care professionals in practice, education, health care policy development, and research are described