Voices of parents : the lived experience of caring for a child with a life-threatening and life-limiting diagnosis within existing social policies

Abstract

The purpose of this naturalistic inquiry was to describe, interpret, and link through voices of parents the lived experience of caring for a child with a life–limiting and life–threatening diagnosis within the context of existing social polices. Critical ethnology and Habermas’ critical theory framework together provided a broad framework from which to delve beneath the surface of everyday appearances and to produce theoretically informed accounts of social phenomena grounded in parents’ perceptions of caring for children who have palliative care needs. This framework provided the means to deconstruct power structures and relationships to reveal and redress oppression by unlocking silent discourses, emancipating voices, and empowering families. The stories of six parents were captured and presented a critical discourse concerning outcomes of the operationalized welfare state within a liberal paradigm that celebrates the autonomous individual as the appropriate unit of political analysis. Four themes emerged that illuminated and provided a fuller understanding of the lived experiences of parenting a child with a life–limiting and life–threatening diagnosis. The initial theme, “Mother as Caregiver”, described the profound effect that assuming the caregiving role had on the lives of these mothers. The theme, “Respite and Coping”, explored and identified the overwhelming need for parents to obtain relief through respite, so they could parent better. The third theme, “Surviving Past Expectancy”, explained how their child, outliving their initial diagnosis, placed yet another new stress and burden on the family. The final theme, “Getting Everyone on the Same Page”, described frustrations parents experienced on a regular basis trying to find services and then act as coordinator for their child and family.This study provided a unique and valuable optic to an untapped data source, which until now has remained silent. Results demonstrate the significance and meaning of the identified themes and their interrelatedness, and the study concludes with a discussion of the findings and policy implications. The main findings were the untapped resilience and strength of each participant, the uniqueness of each of their stories, and the reality that the harms associated with having a child with a life–limiting and life–threatening diagnosis can certainly be lessened through social polices that direct the provision and access to pediatric palliative care services to all who require them. A researched–based understanding of the lived experience and the contextual nature of parents’ perceptions provides policy–makers, politicians, and health care professionals an opportunity to offer specialized services and programs to children with life–limiting and life–threatening diagnosis and their families.