"Living in the dragon's shadow" fathers' experiences of a child's life-limiting illness.

Grounded theory methods were used to study the experiences of 8 bereaved fathers whose children received care in a home-based hospice program. In-depth, unstructured interviews were audiotaped, transcribed, and coded for themes and categories. Every aspect of fathers' lives was affected by their experiences, which were described in metaphoric terms as living in a dragon's shadow. Fathers dealt with life in the dragon's shadow by battling the dragon (the illness)--the core social process. Battling was a conscious, active, continuous process that required strength, willpower, and work. Battling occurred within the context of fathers' experiences with fathering and fatherhood and was characterized by 3 aspects: battling with uncertainty, battling with responsibility, and battling with everyday disruption. Fathers were assisted by supportive work environments and by supportive relationships with health care providers. Unsatisfactory relationships with medical personnel compounded fathers' battling with life in the dragon's shadow.

Addressing spirituality in pediatric hospice and palliative care.

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.