Parental stress in the Pediatric Intensive Care Unit
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Purpose: The purpose of this dissertation is to address parental experiences and responses to their child hospitalization in the Pediatric Intensive Care Unit (PICU). There are three papers in this dissertation, all of which include a sample 15 parents of children admitted to a tertiary PICU in the USA. Paper 1 describes the parent’s experience in the modern PICU during acute hospitalization of their child and elaborates, in the parent's own words, the potential types and sources of parental stress. Paper 2 elaborates, in parents’ own words, their reported challenges beyond the PICU that concurrently occurred during their child's PICU hospitalization. Paper 3 examines the content validity of the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS: PICU) scale by comparing the items on the existing measure with data obtained in the elicitation interviews. Paper 3 also proposes initial refinements of the PSS: PICU scale based on interviews and questionnaire analysis Methods: Paper one and two in this dissertation were based on single occasion interviews were conducted with 15 parents (n = 13 mothers, and n = 2 fathers) of children with complex medical conditions admitted for 48 or more hours to a tertiary PICU. Interviews were inductively coded using methods adapted from Grounded Theory. For paper one and two, only data from the interviews were used. Paper three was is based mixed methods study using single occasion interviews and quantitative measure that included PSS: PICU and to identify items that needed refinement then make recommendations for refinement in the scale. There are four components of research method: (1) The interviews were inductively coded using content analysis method to identify areas of stress to the parents; (2) Using descriptive statistics to identify items associated with high stress to parents and decide where improvements need to be made; (3) Compare interview coded data with existing questionnaire items; and (4) Use decision rule across those methods to make recommendation for improvement. Results: Paper 1 Riding a Roller Coaster was the core construct that explained parents’ experiences. Four domains were identified: Being in a New Stressful World, My Brain Is Burning All the Time, Going through a Hurricane of Emotions, and Being in a Safe Place with Great People. Paper 2 Fraying at the Seams while Balancing between Two Worlds, Home and Hospital was the core construct that captured parents’ challenges. Parents' lives were brought to a halt and as a result their whole lives were thrown off. The day-to-day lives of parents were shattered by being pulled apart between the hospital, home, and work. Even though parents were physically and emotionally present with their ill child in the PICU, they felt frayed and did not know how to help their ill child even as they concurrently struggled with their physical detachment and distance from other children at home. This strain of living in two worlds caused feelings of inadequacy and incompetence to fulfill the parental role. Paper 3 Three limitations were found in the existing PSS: PICU scale, including construct underrepresentation, construct-irrelevant variance, and item redundancy. Conclusion: This dissertation adds new knowledge about parents’ experiences and challenges to their child’s hospitalization in the modern PICU. Findings also showed that despite outstanding medical services, parents were traumatized by seeing their child in a life-threatening situation and were buffeted by a tidal wave of emotions. Parents lived in a constant state of uncertainty, helplessness and fear, not knowing if their child would survive or have devastating outcomes or permanent disabilities. It could be helpful for parents to listen to their concerns and life challenges even if the nurses are not able to alter those extra life challenges. Listening to parents’ journeys and attending to their stories could mitigate the intensity of their stress. Findings from the elicitation interviews and parents’ responses on the scale items raised a question about the PSS: PICU scale’s relevance and utility in the current PICU. Examining the content validity of the PSS: PICU scale revealed that the scale can be missing content that is important to the current PICU. Researchers need to be aware of the relevance and limitation of the scale when applying it in the current PICU.
- Nursing - Seattle