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

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.

Effective healthcare communication with children and young people: a systematic review of barriers and facilitators

“…Eight of the included studies collected data through semistructured interviews,31–38 three used participatory-based approaches39–41 and one was a mixed-methods study 42. One systematic review which included qualitative, quantitative and mixed-methods studies was included 43…”

Pain and Communication in Children with Cerebral Palsy: Influence on Parents’ Perception of Family Impact and Healthcare Satisfaction

“…Inclusion in healthcare decisions, encompassing all phases of assessment, intervention and evaluation, is a critical determinant of high-quality care for parents and chronically ill children [ 43 , 44 ]. Families understand inclusion as the ability to communicate, understand the care plan and participate with the health team in decision-making [ 45 ].…”

Where Should Critically Ill Adolescents Receive Care? A Qualitative Interview-Based Study of Perspectives of Staff Working in Adult and Pediatric Intensive Care Units

“…This report of how intensive care staff view caring for critically ill adolescents was part of a larger study which also looked at the views of adolescents and their parents. 7 The main determinant of where staff thought adolescents should be looked after was the setting’s ability to deliver appropriate, safe medical care, depending on individual medical and psychosocial needs, and not only on age. Staff from both AICU and PICU identified advantages that their own settings provided for critically ill adolescents, although both described ways in which they had to adapt their usual practice to cater for these patients.…”

“…In addition, the views of staff, adolescents, and their parents can give us insight into what high-quality care looks like. 7 –12 A particular challenge to involving critically ill adolescents in decisions related to their care is that they may be too ill to take in information and be a party to decision-making. 13…”