Friday, 14 January 2005 - 10:00 AM

This presentation is part of: Trauma and Bereavement

Can We Ease the Burden?: A Qualitative Investigation of Pediatric End of Life Decision Making

Purpose: When decision making involves the critical health of a child, research reflects that both parents and professionals find these interactions emotionally charged and riddled with communication difficulties (Antle & Carlin, 1997; Solomon et al., 1993). Family-centred approaches have been promoted in pediatric health care as a way of improving the working relationships and communication between parents and professionals (Allen & Petr, 1998). Recent attention has been drawn to the paucity of research about end-of-life care by such major initiatives as Death in America and the American Medical Association’s Education for Physicians on End-of-Life-Care (Field & Cassel, 1997; Singer, Martin, & Kelner, 1999). Field and Cassel (1997) further emphasize the great need for more studies about patient and families perceptions, values and experiences at end-of-life, a viewpoint reinforced by Singer and colleagues (1999) at the Joint Centre for Bioethics at the University of Toronto. There is a striking gap in these important initiatives studying end-of-life, however, in that the needs and perspectives of parents and children are rarely the focus of attention. The purpose of this study is to increase our understanding of parents’ experiences to inform the development of best practices in end of life care.

Methods: Qualitative research focuses on individual perceptions and interpretations of life events and interactions, and the meaning a person forms about these events . (Charmaz & Olesen, 1997; Garwick, 1998; McCracken, 1988). Patterson and Garwick (1998) point out that families’ perception of life events and interactions is influential in both their own sense of well-being and their perceptions of their child’s health. This study employed a modified Long Interview Method (McCracken, 1988). Indepth, in-person interviews were conducted with 10 parents and followed by three sets of focus groups involving 15 health care professionals with expertise in pediatric end of life care. Recognized criteria for trustworthiness in qualitative research were employed including purposive sampling, sampling to saturation, prolonged engagement, triangulation, member-checking, thick description and clear audit trail.

Results: Findings clustered under three large themes: 1) Importance of compassionate, family-centred care, which includes characteristics of positive parent-professional interactions, importance of listening to parents and valuing their expertise and the need for greater co-ordination of care; 2) Need for a focus on hope, which includes supporting a child being home even in palliative stages; acknowledging parent’s perceptions of when ‘it is time’ and fostering hope, even at the end; 3) Explore potential gender differences, which includes acknowledging mothers and fathers having different roles and priorities, and exploring mothers and fathers different coping styles.

Implications for Practice or Policy: Findings will be discussed with particular emphasis on important role for social workers in fostering family-centred care, facilitating parent-team communication and care practices that demonstrate compassion; and enhancing the development of home-based services for dying children that facilitate an emphasis on living with a life-threatenting health condition (rather than the current perceived emphasis on a ‘good death’).

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