Narrative diaries in the paediatric intensive care unit: A thematic analysis

Abstract

Background The paediatric intensive care unit (PICU) diary is a shared tool, kept at the patient bedside, written by relatives and health care providers. There is little evidence about its feasibility and how it supports the families of children admitted to the PICU. Currently, there is no evidence about how the PICU diary is used and what we can learn from it. Aim To explore the contents of narrative PICU diaries in an Italian PICU. Study design Qualitative study of PICU diaries conducted with a narrative research approach. Methods Children sedated and mechanically ventilated for >48 hours were enrolled in a six‐bed Italian PICU of a tertiary care paediatric hospital. During the child's PICU admission, caregivers, relatives, friends, and health care providers were invited to report events, thoughts, and messages, and attach drawings/pictures for the child in the PICU diary. A thematic analysis of the PICU diary contents was performed. Results Thirteen PICU diaries were completed between August and December 2020, mainly by parents (n = 95; 45%) and health care providers (n = 52; 25%). Three main themes emerged: “Social and spiritual support,” “Caregiver's emotions, feelings and distress,” and “PICU life.” Diaries offer insight into caregivers' emotions, social support, clinical activities, and interactions with health care providers, and on progression towards recovery. Conclusion PICU diaries are valuable in facilitating family‐centred care by providing a space for the written account of the child's admission by parents, other visitors, and health care providers. Relevance to clinical practice PICU diaries support the relationship and the communication between the family and the team; they provide an informal account of the emotions and needs of parents that has the potential to improve mutual understanding and family‐centred care. Social support and spiritual support are key elements reported by parents for coping with their child's PICU admission.

The Use and Impact of Diaries in PICUs and Neonatal ICUs: A Scoping Review

“…All 16 studies were published between 2001 and 2022. All of these studies were conducted in North America or Europe (Eight from the United States [19][20][21][22][23][24][25][26], three from Italy [27][28][29], two from the United Kingdom [30,31], two from Denmark [32,33], and one from Austria (34)). There were seven qualitative studies (20,21,23,29,(32)(33)(34), three observational studies (22,24,27), two randomized control trials (19,26), one scoping review (28), one systematic review (31), one survey (30), and one quality improvement project (25).…”

“…All of these studies were conducted in North America or Europe (Eight from the United States [19–26], three from Italy [27–29], two from the United Kingdom [30, 31], two from Denmark [32, 33], and one from Austria (34)). There were seven qualitative studies (20, 21, 23, 29, 32–34), three observational studies (22, 24, 27), two randomized control trials (19, 26), one scoping review (28), one systematic review (31), one survey (30), and one quality improvement project (25). Among the 16 studies, five studies discussed the impact and use of journals or diaries for parents with infants warded in the NICU (19–21, 26, 34), whereas another nine focused on the use of diaries in the PICU (22–25, 27, 29, 30, 32, 33).…”

“…There were seven qualitative studies (20, 21, 23, 29, 32–34), three observational studies (22, 24, 27), two randomized control trials (19, 26), one scoping review (28), one systematic review (31), one survey (30), and one quality improvement project (25). Among the 16 studies, five studies discussed the impact and use of journals or diaries for parents with infants warded in the NICU (19–21, 26, 34), whereas another nine focused on the use of diaries in the PICU (22–25, 27, 29, 30, 32, 33). The included systematic review examined the experience of relatives using diaries in adult, pediatric, and neonatal ICUs (31).…”

“…For the eight studies, which used the terms “PICU or ICU diaries,” all of them provided different definitions, but in general, they defined a PICU diary as a diary consisted of daily records written by the healthcare staff or parents on the patient’s conditions and events of the day (22–25, 27, 29, 32, 33) and were supplemented with pictures of the child, family, and equipment along with texts explaining certain procedures (29, 32). One study (30) used the term “Patient diaries,” defined as a tool that facilitates communication, fills in memory gaps, and offers insights on the patients’ PICU stay.…”

“…The study by Perry et al (24) was a study protocol, which aimed to test a nurse-implemented chronotherapeutic bundle, which include the use of parent diaries, on the circadian rhythms of children admitted to the PICU. Sansone et al (29) explored the contents of PICU diaries and reported that PICU diaries were beneficial to facilitating family-centered care.…”