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A Constructivist Grounded Theory Study on the Use of Patient Diaries in pAediatric inTensive carE from parents' and
Fiona Lynch1, Jos M Latour2,3,4, Ruth Endacott5
1Great Ormond Street Hospital, London, UK.
Insights
Paediatric intensive care unit (PICU) patient diaries enhance communication and empower families and healthcare professionals. These diaries help parents and nurses make sense of a child's critical illness journey, improving compassionate care.
Area of Science:
- Pediatric Intensive Care Medicine
- Qualitative Research Methods
- Patient and Family Centered Care
Background:
- Pediatric intensive care units (PICUs) are stressful environments for children, families, and staff.
- Patient diaries are underutilized in PICUs compared to adult settings.
- Gaps exist in understanding the impact of patient diaries in pediatric critical care.
Purpose of the Study:
- To examine the utilization of patient diaries by children, families, and healthcare professionals (HCPs) in a PICU setting.
- To explore the experiences and perceptions of using patient diaries among key stakeholders.
- To understand the role of PICU patient diaries in communication and decision-making.
Main Methods:
- Qualitative approach using Constructivist Grounded Theory.
- Intensive interviews with 11 families during PICU admission and 6 post-discharge.
- Focus group interviews with 95 nurses and healthcare assistants.
Main Results:
- PICU diaries function as a communication tool, fostering connections between parents, children, and staff.
- Diaries empower parents by supporting involvement in decision-making and enhancing autonomy.
- Patient diaries provide a clear, accessible record, aiding understanding and memory recall of the critical illness experience.
Conclusions:
- PICU patient diaries are valuable tools for parents and nurses, bridging knowledge gaps.
- Diaries empower families and HCPs, aiding navigation of complex PICU admissions.
- The use of PICU diaries enhances clinical practice and compassionate care by facilitating understanding of the critical illness journey.
Background:
The paediatric intensive care unit (PICU) is a highly stressful environment affecting children, families and staff. Patient diaries, common in adult intensive care and valued for supporting psychological recovery, are less established in PICUs. Further research is needed to address gaps in understanding diary impact within paediatric settings.
Aim:
The aim of the study was to examine how PICU patient diaries are used by children, families and HCPs.
Study Design:
The qualitative approach, Constructivist Grounded Theory, was adopted to ground the meanings and actions constructed by the participants. Eleven families were intensively interviewed initially during their child's PICU admission to a combined general and cardiac unit in the UK. Six families were interviewed post-discharge from the hospital, at follow-up. Ninety-five nurses and health care assistants were interviewed in five focus group interviews.
Findings:
PICU diaries provided a communication tool which strengthened relationships between the parent and their child, nurses and other family members by Creating Connections. The relationships fostered were viewed as Impacting Emotionally on parents and nurses. In an environment with an imbalance of power, the diary supported parental autonomy by Empowering Involvement to make decisions. Providing clear explanations of their child's PICU admission, the patient diary filled any gaps in memory and offered an easily understandable permanent record. Therefore, the diary was a valuable resource supporting Making Sense of the child's complex critical illness journey.
Conclusions:
The UPDATE study provides an understanding of the role of PICU diaries as a tool for both parents and nurses. These diaries serve as clear and accessible records, bridging gaps in knowledge. By empowering families and healthcare professionals, PICU diaries support the navigation of the complexities inherent in PICU admissions and contribute to Making Sense to enhance clinical practice and compassionate care.
Relevance To Clinical Practice:
The theory generated offers understanding of the impact and use of PICU diaries and the multidimensional use of the diary for the child's parents and nurses to explain and understand the critical illness experience.
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