Parent's experiences of their child's withdrawal syndrome: a driver for reciprocal nurse-parent partnership in withdrawal assessment

Abstract

Withdrawal assessment in critically ill children is complicated by the reliance on non-specific behaviours and compounded when the child's typical behaviours are unknown. The existing approach to withdrawal assessment assumes that nurses elicit the parents' view of the child's behaviours.

Objective and research methodology: This qualitative study explored parents' perspectives of their child's withdrawal and preferences for involvement and participation in withdrawal assessment. Parents of eleven children were interviewed after their child had completed sedation weaning during recovery from critical illness. Data were analysed using thematic analysis.

Setting: A large children's hospital in the Northwest of England.

Findings: Parents experienced varying degrees of partnership in the context of withdrawal assessment and identified information deficits which contributed to their distress of parenting a child with withdrawal syndrome. Most parents were eager to participate in withdrawal assessment and reported instances where their knowledge enabled a personalised interpretation of their child's behaviours. Reflecting on the reciprocal nature of the information deficits resulted in the development of a model for nurse-parent collaboration in withdrawal assessment.

Conclusion: Facilitating nurse-parent collaboration in withdrawal assessment may have reciprocal benefits by moderating parental stress and aiding the assessment and management of withdrawal syndrome.

Keywords: Critical care; Decision-making; Family-centred care; Iatrogenic withdrawal syndrome; PICU.