Giving 'voice' to families' experiences of living with a pediatric life-limiting condition : an Australian story

Within pediatric health there are probably no more vulnerable children than those diagnosed with lifelimiting condition and their families who care for and support them throughout their illness journey. Qualitative interview-based research provides an ideal means by which to tap into and learn from such families’ illness journey related experience. This paper is a review of a large qualitative project that is offering a unique insight into the lives of 29 Australian families with ill children/adolescents (91 persons:mothers, fathers, ill children, well siblings, and extended family members). Their “voices” provide a glimpse into family life, illuminating how life limiting illness affects it and ripples out through the family system. Drawing from the diverse project findings, the current paper focuses on families’ experiences of and the strategies they employ for managing family life. The authors will consider a range of issues that seep through and affect families’ quality of life, for example balancing often competing needs of familymembers. Factors that facilitate or, alternately, undermine their coping are also considered. Families’individual and collective narratives provide a crucial glimpse into the nature and quality of family life as families care for and support seriously ill children and adolescents. The study attests to the power ofqualitative research to bring to “life” sensitive and emotive human experience, providing health care professionals an opportunity to examine and reflect upon how the quality and delivery of care can add to and or detract from the quality of families’ lives.