Use of Patient Diaries in pAediatric inTensive carE: UPDATE Study. A Constructivist Grounded Theory Study exploring the child, parents, and healthcare professionals’ perspectives.

Abstract

Use of Patient Diaries in pAediatric inTensive carE: UPDATE Study. A Constructivist Grounded Theory Study exploring the child, parents, and healthcare professionals’ perspectives.

Fiona Lynch

Paediatric Intensive Care Units (PICU) are essential to paediatric healthcare, providing high medical and nursing care to children who have become critically ill. PICUs offer prompt and appropriate interventions for children who have developed physiological instability, whether following surgery, from infection, trauma, or deterioration of a chronic condition. A stay in a PICU is not without potential psychological consequences for the child and family. Interventions to support recovery from the psychological impact of critical illness for the child and their family are evolving. Studies undertaken in adult and children’s intensive care have explored interventions that may reduce the psychological impact of critical illness for the patient and their relatives, such as patient diaries. The impact of patient diaries is still emerging in PICUs, and a clear picture of how this intervention is used is the logical next step. Therefore, this study aimed to ascertain how PICU patient diaries are used by critically ill children, their families, and healthcare professionals during and after admission into the PICU. Constructivist grounded theory (Charmaz, 2006) was identified as the most appropriate methodology to study how the child, their family and the teams caring for them used patient diaries. The methods of intensive interviews and focus group interviews were adopted to generate rich data from the participants. Two intensive consecutive interviews were conducted with children and their family. The first interviews were conducted during the admission to the PICU and then repeated approximately five to six months post-discharge from the hospital. In total, 11 interviews were conducted during the admission to the PICU and six interviews post-discharge from the PICU. Only one child was interviewed as a participant in this study. Five separate focus group interviews were conducted with healthcare professionals to ascertain their views on the use and usefulness of the diaries. In total, 95 HCPs were recruited for the five focus group interviews, with four conducted in the PICU and one in the children’s cardiology ward. Two categories evolved from the family participants and three categories from the HCPs, leading to the development of the core category of Making Sense. Findings showed that patient diaries provided a communication tool which strengthened relationships between the parent and their child, the healthcare professionals and other family members by Creating Connections. The relationships fostered through the diaries were viewed as Impacting Emotionally on parents and HCPs. From this emotional involvement, the diary was considered to support the parents’ emotional wellbeing. From the entries made by the family members, the diaries provided insights into how families coped emotionally, allowing HCPs to provide individualised support where needed. In an environment with an imbalance of power and unfamiliar organisational processes and cultures, the diary supported parental autonomy by Empowering Involvement to make decisions. The patient diary is a tool to bridge the knowledge gap between parents and HCPs in the child’s critical illness experience. Through this use, the diary offered a compendium of information about the child’s PICU journey. Providing clear insights and 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. The UPDATE study has explored the uses of PICU patient diaries from the perspective of the families and HCPs. The patient diaries were valued and offered a tool to support the family, the HCP and child in making sense of the critical illness journey. Through CGT this study has provided insights not previously understood and contributes to the evolving evidence and theory about using patient diaries for the survivors of the PICU.