Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

Abstract

Purposes To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child’s life-threatening illness (LTI). Design and Methods Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. Results We identified three themes and one meta-theme or overall theme: (1) “Help us survive this,” (2) “Let’s fight together: please fight with me, not against me, to care for my family,” and (3) “Guide me through the darkness: I am suffering.” Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. Conclusions In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. Practice Implications: Parents are distressed and grapple with conflicted feelings about managing competing needs of various family members. Relationships with health care providers can influence parents’ management of the situation and be a source of support as their parenting role changes over the illness trajectory, time, and in response to adversity.

Long-term nurse–parent relationships in paediatric palliative care: a narrative literature review

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Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014

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The Evolutionary Nature of Parent–Provider Relationships at Child’s End of Life With Cancer

“…In this study, we identified our partial knowledge about family, children during the dying process, and palliative care developed in previous research (Santos et al, 2019a; Mooney-Doyle et al, 2017; Wiegand et al, 2015; Misko et al, 2015). These pre-judgments have not only motivated us to focus on the relationship between families and care providers but are inevitably preconceptions which are modified as new questions arose during the research process in the research team.…”