Parental emotional, social and transitional health in the first 6 months after childhood critical illness: A longitudinal qualitative study

Abstract

AimTo explore the experiences and support needs of parents in the first 6 months after paediatric critical care.DesignLongitudinal qualitative design.MethodsSequential semi‐structured qualitative interviews were conducted with a sample of 28 parents in succession at 1 month and at 6 months (n = 22) after their child's discharge from paediatric critical care using purposive sampling. Data were analysed using the adapted five‐stage framework analysis.ResultsData were developed into eight synthesized themes, three domains and an overarching theme: Regaining Normalcy. Families of children requiring medical treatment at 6 months showed signs of adaption to daily care routines. The two domains were Parental Emotional Health and Parental Social Health. Parental Transitional Health, a third domain, was added to the Post Intensive Care Syndrome‐paediatric framework. Parents were forward‐looking and discussed emotional health, relating to current caregiving issues. Emotional attention was related to present challenges and concerns about current health and possible readmission to the hospital. In terms of Parental Social Health, families isolated themselves for infection control while remaining connected with families using chat applications. Parents were selective to whom they allowed access to their lives. The impact of parental transitional health was evident and emphasized the daily challenges associated with integration back to home life. Flexible work arrangements allowed working parents to support caregiving needs in the first 6 months after discharge.ConclusionIn the first 6 months after paediatric critical illness, most families reported having moved past the experiences while having provoking memories of the admission period. Parents viewed the point of normalcy as child returned to school or when all medications were discontinued. Extension of transitional support can facilitate discharge experiences between paediatric critical care and normalcy. The findings highlight the importance of understanding the medium‐ and longer‐term impact of paediatric critical care.Impact What problem did the study address? Limited understanding of long‐term parental experiences and support needs after PICU discharge. What were the main findings? Most families regained normalcy when child returns to school or when medications were discontinued. Some families continued to show signs of adaptations at 6 months after PICU discharge. Where and on whom did the research have an impact? The research has an impact on improving the understanding of long‐term parental experiences and support needs after PICU discharge, informing clinical practice, guiding policy development and shaping parental support programs. Reporting MethodWe reported this study using the COREQ guidelines.Patient or Public ContributionPrior to confirming the interview guide, three parents of critically ill children actively participated by reviewing and providing feedback on its content. They provided suggestions to refine the wording and ensure clarity to enhance the participants' understanding. By including the perspectives of these parents, we aimed to improve the overall quality and relevance of the interview guide.