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Implementation of paediatric intensive care unit diaries: Feasibility and opinions of parents and healthcare providers

Published:March 16, 2022DOI:https://doi.org/10.1016/j.aucc.2022.01.011

      Abstract

      Background

      The implementation of paediatric intensive care unit (PICU) diaries has been reported as feasible in routine care. To date no feasibility study has compared PICU healthcare providers’ (HCPs) and parents’ opinions on this tool.

      Objectives

      The aim of this study is to describe the feasibility and perception of PICU diaries in an Italian PICU from the point of view of parents and HCPs.

      Methods

      This is a single-centre, prospective, observational study conducted in a tertiary care paediatric hospital from August 2020 to May 2021. Children admitted to the emergency department PICU, intubated, and sedated for ≥48 h were enrolled. To explore their perceptions and attitudes with the PICU diary, parents were interviewed at 30 days from their child's discharge from the PICU, whereas PICU HCPs were surveyed at the end of the study. Data were analysed as proportions for categorical variables and means and medians for continuous variables according to the distribution, whereas qualitative data were summarised in categories by two independent researchers.

      Results

      Twenty families were enrolled in this study. A total of 275 daily PICU diary entries were collected. Children's median age was 9 years (interquartile range = 2–13.25), and the length of stay ranged from 6 to 39 days. PICU diary applicability was rated high by parents and HCPs (>8 on a 1–10 Likert scale). Parents and HCPs perceived PICU diaries as beneficial for communication between staff and families, for parents by expressing their emotions and for staff by becoming aware of how parents experienced their child's admission. Reported barriers were the lack of a private environment, the risk of exposure to public reading, and PICU workload.

      Conclusions

      PICU diaries were feasible and perceived as beneficial both by parents and HCPs. Future research is warranted to understand the effect of PICU diaries on post-PICU outcomes.

      Keywords

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      References

        • Pollack M.M.
        • Holubkov R.
        • Funai T.
        • Clark A.
        • Berger J.T.
        • Meert K.
        • et al.
        Pediatric intensive care outcomes: development of new morbidities during pediatric critical care∗.
        Pediatr Crit Care Med. 2014; 15: 821-827https://doi.org/10.1097/PCC.0000000000000250
        • Needham D.M.
        • Davidson J.
        • Cohen H.
        • Hopkins R.O.
        • Weinert C.
        • Wunsch H.
        • et al.
        Improving long-term outcomes after discharge from intensive care unit: report from a Stakeholdersʼ conference∗.
        Crit Care Med. 2012; 40: 502-509https://doi.org/10.1097/CCM.0b013e318232da75
        • Spragg R.G.
        • Bernard G.R.
        • Checkley W.
        • Curtis J.R.
        • Gajic O.
        • Guyatt G.
        • et al.
        Beyond mortality: future clinical research in acute lung injury.
        Am J Respir Crit Care Med. 2010; 181: 1121-1127https://doi.org/10.1164/rccm.201001-0024WS
        • Turnbull A.E.
        • Rabiee A.
        • Davis W.E.
        • Nasser M.F.
        • Venna V.R.
        • Lolitha R.
        • et al.
        Outcome measurement in ICU survivorship research from 1970 to 2013: a scoping review of 425 publications∗.
        Crit Care Med. 2016; 44: 1267-1277https://doi.org/10.1097/CCM.0000000000001651
        • Manning J.C.
        • Redsell S.A.
        • Latour J.M.
        Should out of sight mean out of mind? Challenging the role of paediatric intensive care in understanding and supporting children and families following childhood critical illness: Guest Editorial.
        Nurs Crit Care. 2016; 21: 262-264https://doi.org/10.1111/nicc.12253
        • Inoue S.
        • Hatakeyama J.
        • Kondo Y.
        • Hifumi T.
        • Sakuramoto H.
        • Kawasaki T.
        • et al.
        Post-intensive care syndrome: its pathophysiology, prevention, and future directions.
        Acute Med Surg. 2019; 6: 233-246https://doi.org/10.1002/ams2.415
        • Ong C.
        • Lee J.H.
        • Leow M.K.S.
        • Puthucheary Z.A.
        Functional outcomes and physical impairments in pediatric critical care survivors: a scoping review∗.
        Pediatr Crit Care Med. 2016; 17: e247-e259https://doi.org/10.1097/PCC.0000000000000706
        • Ekim A.
        The post-intensive care syndrome in children.
        Compr Child Adolesc Nurs. 2020; 43: 15-21https://doi.org/10.1080/24694193.2018.1520323
        • Board R.
        • Ryan-Wenger N.
        Stressors and stress symptoms of mothers with children in the PICU.
        J Pediatr Nurs. 2003; 18: 195-202https://doi.org/10.1053/jpdn.2003.38
        • Colville G.
        • Darkins J.
        • Hesketh J.
        • Bennett V.
        • Alcock J.
        • Noyes J.
        The impact on parents of a child's admission to intensive care: integration of qualitative findings from a cross-sectional study.
        Intensive Crit Care Nurs. 2009; 25: 72-79https://doi.org/10.1016/j.iccn.2008.10.002
        • Jee R.A.
        • Shepherd J.R.
        • Boyles C.E.
        • Marsh M.J.
        • Thomas P.W.
        • Ross O.C.
        Evaluation and comparison of parental needs, stressors, and coping strategies in a pediatric intensive care unit.
        Pediatr Crit Care Med. 2012; 13: e166-e175https://doi.org/10.1097/PCC.0b013e31823893ad
        • Stremler R.
        • Haddad S.
        • Pullenayegum E.
        • Parshuram C.
        Psychological outcomes in parents of critically ill hospitalized children.
        J Pediatr Nurs. 2017; 34: 36-43https://doi.org/10.1016/j.pedn.2017.01.012
        • McIlroy P.A.
        • King R.S.
        • Garrouste-Orgeas M.
        • Tabah A.
        • Ramanan M.
        The effect of ICU diaries on psychological outcomes and quality of life of survivors of critical illness and their relatives: a systematic review and meta-analysis.
        Crit Care Med. 2019; 47: 273-279https://doi.org/10.1097/CCM.0000000000003547
        • Ewens B.
        • Chapman R.
        • Tulloch A.
        • Hendricks J.M.
        ICU survivors' utilisation of diaries post discharge: a qualitative descriptive study.
        Aust Crit Care. 2014; 27: 28-35https://doi.org/10.1016/j.aucc.2013.07.001
        • Barreto B.B.
        • Luz M.
        • Rios M.N. de O.
        • Lopes A.A.
        • Gusmao-Flores D.
        The impact of intensive care unit diaries on patients' and relatives' outcomes: a systematic review and meta-analysis.
        Crit Care. 2019; 23: 411https://doi.org/10.1186/s13054-019-2678-0
        • Rogan J.
        • Zielke M.
        • Drumright K.
        • Boehm L.M.
        Institutional challenges and solutions to evidence-based, patient-centered practice: implementing ICU diaries.
        Crit Care Nurse. 2020; 40: 47-56https://doi.org/10.4037/ccn2020111
        • Lynch F.
        • Endacott R.
        • Latour J.M.
        Patient diaries: survey of paediatric intensive care units in the United Kingdom and Ireland.
        Nurs Crit Care. 2020; 25: 31-36https://doi.org/10.1111/nicc.12472
        • Herrup E.A.
        • Wieczorek B.
        • Kudchadkar S.R.
        Feasibility and perceptions of PICU diaries.
        Pediatr Crit Care Med. 2018; 8
        • Mikkelsen G.
        The meaning of personal diaries to children and families in the paediatric intensive care unit: a qualitative study.
        Intensive Crit Care Nurs. 2018; 45: 25-30https://doi.org/10.1016/j.iccn.2017.10.001
        • von Elm E.
        • Altman D.G.
        • Egger M.
        • Pocock S.J.
        • Gøtzsche P.C.
        • Vandenbroucke J.P.
        • STROBE Initiative.
        The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies.
        Ann Intern Med. 2007; 147: 573-577https://doi.org/10.7326/0003-4819-147-8-200710160-00010
        • Tong A.
        • Sainsbury P.
        • Craig J.
        Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.
        Int J Qual Health Care. 2007; 19: 349-357https://doi.org/10.1093/intqhc/mzm042
        • Sayde G.E.
        • Stefanescu A.
        • Conrad E.
        • Nielsen N.
        • Hammer R.
        Implementing an intensive care unit (ICU) diary program at a large academic medical center: results from a randomized control trial evaluating psychological morbidity associated with critical illness.
        Gen Hosp Psychiatry. 2020; 66: 96-102https://doi.org/10.1016/j.genhosppsych.2020.06.017
        • Sandelowski M.
        Whatever happened to qualitative description?.
        Res Nurs Health. 2000; 23: 334-340https://doi.org/10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G
        • Sandelowski M.
        What's in a name? Qualitative description revisited: qualitative description revisited.
        Res Nurs Health. 2010; 33: 77-84https://doi.org/10.1002/nur.20362
        • Graneheim U.H.
        • Lundman B.
        Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness.
        Nurse Educ Today. 2004; 24: 105-112https://doi.org/10.1016/j.nedt.2003.10.001
        • Graneheim U.H.
        • Lindgren B.-M.
        • Lundman B.
        Methodological challenges in qualitative content analysis: a discussion paper.
        Nurse Educ Today. 2017; 56: 29-34https://doi.org/10.1016/j.nedt.2017.06.002
        • Lindgren B.-M.
        • Lundman B.
        • Graneheim U.H.
        Abstraction and interpretation during the qualitative content analysis process.
        Int J Nurs Stud. 2020; 108: 103632https://doi.org/10.1016/j.ijnurstu.2020.103632
        • Elo S.
        • Kääriäinen M.
        • Kanste O.
        • Pölkki T.
        • Utriainen K.
        • Kyngäs H.
        Qualitative content analysis: a focus on trustworthiness.
        Sage Open. 2014; 4 (215824401452263)https://doi.org/10.1177/2158244014522633
        • Fiser D.H.
        Assessing the outcome of pediatric intensive care.
        J Pediatr. 1992; 121: 68-74https://doi.org/10.1016/S0022-3476(05)82544-2
        • Hawthorne D.M.
        • Youngblut J.M.
        • Brooten D.
        Use of spiritual coping strategies by gender, race/ethnicity, and religion at 1 and 3 Months after infant's/child's intensive care unit death.
        J Am Assoc Nurse Pract. 2017; 29: 591-599https://doi.org/10.1002/2327-6924.12498
        • Foster J.R.
        • AlOthmani F.I.
        • Seabrook J.A.
        • AlOfisan T.
        • AlGarni Y.M.
        • Sarpal A.
        Parental presence at the bedside of critically ill children in a unit with unrestricted visitation.
        Pediatr Crit Care Med. 2018; 19: e387-e393https://doi.org/10.1097/PCC.0000000000001597
        • Moore G.F.
        • Audrey S.
        • Barker M.
        • Bond L.
        • Bonell C.
        • Hardeman W.
        • et al.
        Process evaluation of complex interventions: medical research council guidance.
        BMJ. 2015; 350 (h1258–h1258)https://doi.org/10.1136/bmj.h1258
        • Atkins L.
        • Francis J.
        • Islam R.
        • O'Connor D.
        • Patey A.
        • Ivers N.
        • et al.
        A guide to using the theoretical domains framework of behaviour change to investigate implementation problems.
        Implement Sci. 2017; 12: 77https://doi.org/10.1186/s13012-017-0605-9
        • Hoogendoorn M.E.
        • Brinkman S.
        • Bosman R.J.
        • Haringman J.
        • de Keizer N.F.
        • Spijkstra J.J.
        The impact of COVID-19 on nursing workload and planning of nursing staff on the intensive care: a prospective descriptive multicenter study.
        Int J Nurs Stud. 2021; 121: 104005https://doi.org/10.1016/j.ijnurstu.2021.104005
        • Holme A.N.
        • Halvorsen K.
        • Eskerud R.S.
        • Lind R.
        • Storli S.L.
        • Gjengedal E.
        • et al.
        Nurses' experiences of ICU diaries following implementation of national recommendations for diaries in intensive care units: a quality improvement project.
        Intensive Crit Care Nurs. 2020; 59: 102828https://doi.org/10.1016/j.iccn.2020.102828
        • Sansone V.
        • Dall'Oglio I.
        • Gesualdo F.
        • Cancani F.
        • Cecchetti C.
        • Di Nardo M.
        • et al.
        Narrative diaries in pediatrics: a scoping review.
        J Pediatr Nurs. 2021; 59: e93-e105https://doi.org/10.1016/j.pedn.2021.02.006
        • Carnevale F.A.
        The experience of critically ill children: narratives of unmaking.
        Intensive Crit Care Nurs. 1997; 13: 49-52https://doi.org/10.1016/S0964-3397(97)80733-1
        • Richards C.A.
        • Starks H.
        • O'Connor M.R.
        • Doorenbos A.Z.
        Elements of family-centered care in the pediatric intensive care unit: an integrative review.
        J Hosp Palliat Nurs. 2017; 19: 238-246https://doi.org/10.1097/NJH.0000000000000335
        • Hill C.
        • Knafl K.A.
        • Docherty S.
        • Santacroce S.J.
        Parent perceptions of the impact of the paediatric intensive care environment on delivery of family-centred care.
        Intensive Crit Care Nurs. 2019; 50: 88-94https://doi.org/10.1016/j.iccn.2018.07.007
        • Sullivan J.
        • Monagle P.
        • Gillam L.
        What parents want from doctors in end-of-life decision-making for children.
        Arch Dis Child. 2014; 99: 216-220https://doi.org/10.1136/archdischild-2013-304249
        • Mikkelsen G.
        • Frederiksen K.
        Family-centred care of children in hospital - a concept analysis: family-centred care of children in hospital.
        J Adv Nurs. 2011; 67: 1152-1162https://doi.org/10.1111/j.1365-2648.2010.05574.x
        • Egerod I.
        • Storli S.L.
        • Åkerman E.
        Intensive care patient diaries in scandinavia: a comparative study of emergence and evolution: ICU patient diaries in scandinavia.
        Nurs Inq. 2011; 18: 235-246https://doi.org/10.1111/j.1440-1800.2011.00540.x
        • Mickelson R.S.
        • Piras S.E.
        • Brown L.
        • Carlile C.
        • Drumright K.S.
        • Boehm L.
        The use and usefulness of ICU diaries to support family members of critically ill patients.
        J Crit Care. 2021; 61: 168-176https://doi.org/10.1016/j.jcrc.2020.10.003
        • Roulin M.-J.
        • Hurst S.
        • Spirig R.
        Diaries written for ICU patients.
        Qual Health Res. 2007; 17: 893-901https://doi.org/10.1177/1049732307303304
        • Perier A.
        • Revah-Levy A.
        • Bruel C.
        • Cousin N.
        • Angeli S.
        • Brochon S.
        • et al.
        Phenomenologic analysis of healthcare worker perceptions of intensive care unit diaries.
        Crit Care. 2013; 17 (R13)https://doi.org/10.1186/cc11938
        • Scruth E.A.
        • Oveisi N.
        • Liu V.
        Innovation and technology: electronic intensive care unit diaries.
        AACN Adv Crit Care. 2017; 28: 191-199https://doi.org/10.4037/aacnacc2017471
        • Locke M.
        • Eccleston S.
        • Ryan C.N.
        • Byrnes T.J.
        • Mount C.
        • McCarthy M.S.
        Developing a diary program to minimize patient and family post-intensive care syndrome.
        AACN Adv Crit Care. 2016; 27: 212-220https://doi.org/10.4037/aacnacc2016467
        • Johansson M.
        • Wåhlin I.
        • Magnusson L.
        • Runeson I.
        • Hanson E.
        Family members' experiences with intensive care unit diaries when the patient does not survive.
        Scand J Caring Sci. 2018; 32: 233-240https://doi.org/10.1111/scs.12454