Eliciting the experiences of the adolescent-parent dyad following critical care admission: a pilot study

Dora Wood,Peter J Davis,John V Pappachan,Sarah Goodwin,Jo Wray,Sophie Geoghegan,Padmanabhan Ramnarayan

doi:10.1007/s00431-018-3117-y

Abstract

Critically ill adolescents are usually treated on intensive care units optimised for much older adults or younger children. The way they access and experience health services may be very different to most adolescent service users, and existing quality criteria may not apply to them. The objectives of this pilot study were, firstly, to determine whether adolescents and their families were able to articulate their experiences of their critical care admission and secondly, to identify the factors that are important to them during their intensive care unit (ICU) or high dependency unit (HDU) stay. Participants were 14–17 year olds who had previously had an emergency admission to an adult or paediatric ICU/HDU in one of four UK hospitals (two adult, two paediatric) and their parents. Semi-structured interviews were conducted with eight mother-adolescent dyads and one mother. Interviews were transcribed and analysed using framework analysis.Conclusion: The main reported determinant of high-quality care was the quality of interaction with staff. The significance of these interactions and their environment depended on adolescents’ awareness of their surroundings, which was often limited in ICU and changed significantly over the course of their illness. Qualitative interview methodology would be difficult to scale up for this group.What is known• Critically ill adolescents are usually treated on intensive care units optimised for older adults or younger children.• The way they access and experience health services may be different to most adolescent patients; existing quality criteria may not apply.What is new• Reported determinants of high-quality care were age-appropriateness of the environment, respectfulness and friendliness of staff, communication and inclusion in healthcare decisions.• The significance of these depended on adolescents’ awareness of their surroundings, which was often limited and changed over the course of their illness.

Highlights

After decades of being managed in healthcare settings either as large children or as small adults, there is increasing recognition that adolescents are a distinct patient group with unique physical, psychological and behavioural needs [11]
The way critically ill adolescents access and experience health services may be very different to the majority of adolescent service users: many of the choices about location of care or service provider are not available to them, and the effects of drugs and critical illness may render them less able to participate in decisions about their care
Eligible participants for this study were (1) adolescents aged 14–17 years who had been admitted as an emergency to an adult or paediatric intensive care unit (ICU) or high dependency unit (HDU) in one of four United Kingdom (UK) hospitals for at least 24 hours in the previous 12 months, were at least 2 months post-ICU admission and were awake for some of their stay in ICU and (2) their parents/carers

Summary

Introduction

After decades of being managed in healthcare settings either as large children or as small adults, there is increasing recognition that adolescents are a distinct patient group with unique physical, psychological and behavioural needs [11]. In the United Kingdom (UK), around 4500 critically ill adolescents (12–19 years old) are admitted to either adult or paediatric intensive care units (ICUs) each year [19]. Efforts have been made to tailor the delivery of intensive care for critically ill adolescents and their families [17], but their opinions have rarely been sought, despite the growing emphasis on the importance of patient experience and the patient voice in health policies. There are likely to be specific challenges in elucidating such information

Methods

Results

Conclusion