Stem cell clinical trials for spinal cord injury: readiness, reluctance, redefinition.

A wealth of scientific and clinical research has focused on the use of stem cells as a potential therapy for spinal cord injury (SCI), culminating most recently in the initiation of clinical trials. However, with the urgency that scientists and clinicians have undertaken to move forward with novel therapies for this devastating injury, the perspectives of stakeholders who live with a SCI have been left behind. Translational research in this rapidly growing field therefore overlooks a critically important viewpoint. We address this concern with a qualitative study of the perspectives on experimental stem cell treatments from individuals who have actually suffered a spinal cord injury. Using focus groups and interviews, we engaged individuals with thoracic and cervical SCIs at sub-acute and chronic stages post-injury. We found four major themes that inform the progression of stem cell research to clinical trials: 'readiness', 'the here and now', 'wait and see', and 'informed hope'. Taken together, the data suggest a profound difference related to target timing of stem cell clinical trials and the perspectives about timing from those who are the end-beneficiaries of therapy. To bridge this gap, we conclude with a number of considerations for the timing disparity of trials and recommendations for improving informed consent.

Family functioning and its implications for palliative care.

Palliative care programs are based on the principle that care should be directed to the family as a unit. However, existing guidelines for care of the family tend to be described in general terms. Analysis of data from a series of three research studies describing the experience of twenty-three families caring for a terminally ill member revealed that family functioning influenced their experience. The dimensions of family functioning are described and guidelines for working with families are proposed.

Palliative care. The nurse's role in helping families through the transition of "fading away".

Oncology nurses are finding themselves increasingly involved in providing palliative care. A foundational tenet of palliative care is that the entire family, not just the patient, is the unit of care. Although nursing literature on care of the family is growing, nursing approaches tend to be described in general terms. A recent study of families caring for a member with advanced cancer generated a theoretic scheme which indicated that the families' experience could be conceptualized as a transition: the transition of fading away. This theoretic scheme served as the foundation for identifying nursing approaches which could be helpful to families engaged in the transition. This paper expands on the nursing approaches so that nurses may be better prepared to help families through the transition of fading away.

Families in supportive care--Part I: The transition of fading away: the nature of the transition.

The entire family unit is affected when one of its members is in need of supportive care; however, relatively few studies pertaining to palliative care have focused on the family as a unit. The purpose of this study was to examine the experience of families having a member with advanced cancer who was receiving palliative care either at home or in the hospital. Eight families (24 family members) participated in semistructured interviews which were audiotaped, transcribed, and subjected to qualitative methods of analysis. Results indicated that the families' experience can be conceptualized as a transition of fading away. The transition began with an ending, characterized by the processes of redefining and dealing with burden. A period of chaos, confusion, fear, and uncertainty characterized the neutral zone. The end point of the transition was a new beginning where families focused on living day-to-day and preparing for death.