Explore children’s experiences of intensive care
Research type
Research Study
Full title
Explore through participatory methods children’s experiences of intensive care
IRAS ID
316532
Contact name
Donna Thomas
Contact email
Sponsor organisation
University Central Lancashire
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Paediatric survivors of critical illness are at risk regarding long-term impairments (Pinto, Rhinesmith et al. 2017) (Ekim 2020). This has collectively been termed Post-Intensive Care Syndrome (PICS) which is understood as the cognitive and/or physical disabilities that arise following treatment in intensive care units (Manning, Pinto et al. 2018).
Little is known about PICS and it is often overlooked, which may lead to reduced quality of life and cause much suffering of these patients and their families. Admissions to PICU places children at increased risk of persistent psychological morbidity (Lopes-Júnior, Rosa et al. 2018). Definitions of PICS have emerged from adult experiences that may, in some cases, diverge from children’s experiences. Furthermore, children’s experiences of PICs in general may differ to those of adults – this is problematic when PICS-p is defined through adult experiences. (Thomas 2021); (Wahbeh, Fry et al. 2022)
PICS in paediatrics (PICS-p) highlights some of these differences for children, in terms of dependence to the family and health recovery level which might affect the life of the child for decades (Ekim 2020) (Woodruff and Choong 2021). Experiences considered anomalous and delusional, feature largely in the experiences of children with PICS-p and are often attributed to opiate based medications whilst on intensive care (Colville, Kerry et al. 2008)(Aspesberro et al, 2017). It is still unclear what the nature of these reported delusions are, in terms of experiences for children (Traube, Silver et al. 2017)Using Participatory Research Methods in Children with PICS-p
Involving children in research has gained increasing importance across many disciplines and contexts. Since the early 1990’s, participatory research with children has grown in popularity, with a significant body of literature positioning children as active agents and experts within the production and meaning of knowledge about their own living experiences (Freire, Pope et al. 2022)
Participatory research approaches involve the use of research methods viewed as ‘non-traditional’ and include but not limited to drawing/ painting, small world play, select & reflect on photos, storytelling, and taking photos/videos. These methods can be an effective way to involve children in research who have been unwell or have impaired cognitions, in a meaningful way (Boydell, Gladstone et al. 2012)
Participatory research generates knowledge from the living experiences of children, rather than starting from professional understandings about the phenomenon under investigation. Participatory research enables and enhances the types of information produced around other circumstantial factors that may impact on PICS-p. Importantly, children and families carry an authority over their own experiences and life stories. Knowledge generated from participatory studies is shown to enhance professional learning and practice. (Tierney, Rodriguez et al. 2022)2 RATIONALE
The literature concerned with involving children in post-intensive care research is sparse, revealing an absence of children’s experiences and views in studies that define PICS-p. A recent literature review by Menzies et al (2017), highlighted both the lack of research involving children in intensive care and the need to develop participatory research approaches to explore the experiences of children in these settings. Menzies et al (2014) reviewed the titles and abstracts of 4717 papers but found only 4 papers that had consulted with parents and only one paper that had directly involved a child.(Menzies, Morris et al. 2016)
Little is known about how children experience intensive care, especially in relation to anomalous experiences. (Sansone, Cancani et al. 2022). Traditional research approaches in a clinical context have the potential to exclude vulnerable patient groups from research – including children. It is important that professionals acquire more understanding about PICS-p from the perspective of children. Participatory research has the potential to explore anomalous experiences in children (Thomas 2021)
Past and current participatory research studies with children suggest that participatory research approaches may be effective for exploring Pics-p with children in an hospital context. For example, Wu et al (2020) applied participatory research to explore pain management with children (Wu, Tam et al. 2022), while Bray et al (2019) reported how effective participatory approaches are when exploring children’s beliefs and experiences of clinical procedures (Bray, Horowicz et al. 2019).
An added complication for children post-intensive care, is to facilitate their experience ‘without-voice’, due to medical procedures, such as endotracheal intubation, which can lead to vocal cord palsy. Children are reported to have ‘lower verbal and visual IQ levels compared with those in healthy children’ (Als, Nadel et al. 2013). Participatory methods that use creative methods such as art, music, play, diaries/vlogs and mythical storytelling could offer affordances for children in post-intensive care to share their cognitive, emotional and physical experiences. Informing medical and clinical research studies and practices.(Freire, Pope et al. 2022)The aim of the study is to explore through participatory methods, observation and talk, children’s experiences of intensive care
Our research question is as follows: What is a child’s experience of intensive care?
Study Design
A qualitative participatory methodology using art-based methods (draw and small world play) (Angell, Alexander et al. 2014) (Gripton and Vincent 2021) A research script (appendix – supporting information) will also be used to ensure the aim is addressed: to understand children’s perceptions and experience of intensive care.
Primary analysis: Interpretive phenomenological analysis (IPA) was felt to be a method of analysis in line with the aims of the research. IPA focuses on understanding how a participant makes sense of his or her own unique experiences (Tindall 2009).
REC name
South Central - Berkshire Research Ethics Committee
REC reference
22/SC/0185
Date of REC Opinion
19 Jul 2022
REC opinion
Further Information Favourable Opinion