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

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]. Attention has now turned to making health services fit for purpose for adolescents with the publication of quality criteria [1, 5, 16] and development of patient-centred quality indicators [2].

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]. 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. 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. However, there are likely to be specific challenges in elucidating such information.

The objectives of this pilot study were firstly to determine whether adolescents and their families were able, through semi-structured interviews, to articulate their experiences of an admission to an ICU or high dependency unit (HDU) and secondly to identify the factors that are important to them during their ICU/HDU stay.

The study was grounded in the principle that young people should have a voice and agency in their own healthcare [18]. Parents were also included as they are critical observers of their child’s care in ICU/HDU. Eligible participants for this study were (1) adolescents aged 14–17 years who had been admitted as an emergency to an adult or paediatric ICU or HDU in one of four UK hospitals (two adult, two paediatric) 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. Local specialist nurses at each participating hospital contacted all eligible patients and their families to seek their consent to be contacted by a researcher and invite them to take part in an interview. Participants were provided with opportunities to discuss the research further, after which written informed consent was obtained from all participants (and from parents of those aged under 18 years) prior to commencing interviews.

All interviews were conducted face-to-face by a single researcher (a female social scientist with experience of interviewing intensive care patients and their families) and took place in families’ own homes or in quiet rooms across the hospital. Interviews lasted 30–90 min and were audio-recorded and transcribed verbatim. Topic guides were used to provide general structure, although participants were encouraged to influence the direction of interviews. Participants were asked to recall what they could remember of their admission to ICU and the care and support provided by staff. The researcher made contemporaneous notes of the individual sessions and her reflections on the process which were reviewed with other team members.

Qualitative data were analysed using the Framework approach [15], a process involving five distinct though highly interconnected stages: familiarisation, identifying a thematic framework, indexing, charting, mapping and interpretation. It allows themes to develop from both the research questions and narratives of research participants [13]. During the analysis, a series of “frameworks” or grids were constructed, into which the summarised qualitative data were entered under descriptive headings. Two members of the research team (a psychologist and an intensive care consultant, both of whom have significant clinical and research experience of intensive care), together with the researcher, independently (to enhance credibility) generated and agreed these descriptive headings after careful reading of the transcripts. A flexible, iterative approach to this phase of the analysis process was adopted, with descriptive headings being refined as indicated through regular discussion with team members. Data from each transcript were individually entered into the framework, and key themes were extracted from the completed frameworks and the relationships between the themes explored. The data and findings were discussed with other team members and two experienced intensive care nurses who were not directly involved with the project to enhance confirmability and credibility of the findings.

Ethical approval was granted from the South West—Central Bristol ethics committee (Ref 14/SW/1131).

We set out to address two related questions: firstly whether adolescents and their families were able, through semi-structured interviews, to articulate their experiences of an admission to an ICU/HDU and secondly to identify what factors are important to them during that admission.

Despite the perceived importance of an appropriate physical environment and age-appropriate facilities, the main reported factor contributing to the quality of the healthcare experience in our study 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 [12]. Our methodology was effective in elucidating these themes but would not be feasible to scale up to a significantly larger sample size.

Adult and paediatric intensive care units are, understandably, designed around the needs of the majority of their patients. However, these efforts may not suit critically ill adolescents; we know that healthcare priorities differ between younger and older children [3] and also between younger and older adults [6]. Critically ill adolescents and their families cannot choose where to seek critical care when ill or which service provider they would prefer; most of the current quality measures used in ICUs are not applicable to adolescents.

However, the themes we have identified have significant overlap with previous research on experience of care indicators for adolescents who are not critically ill [2, 16]. Our participants highlighted the age-appropriateness of the environment, respectfulness and friendliness of staff, communication and inclusion in healthcare decisions as key determinants of perceived quality of healthcare in the ICU.

Unexpectedly, medical competency and health outcomes did not feature prominently in our study. It seems unlikely that a good medical outcome is not important to adolescents and families, but there are other possible explanations for this omission. Adolescents may define characteristics of quality healthcare according to whether the standards they encounter match their expectations [9]—if the standards of care largely met their expectations, they may not have been mentioned in the interviews. Additionally, adolescents may have been unconscious for the more intensively ‘medical’ parts of their admission. Accessibility was not mentioned at all. This is surprising; although in the UK cost is not a barrier to hospital treatment, paediatric intensive care is centralised and travel for patients and families can therefore be significant.

Half of admissions to PICU are for infants under 1 and the majority of the remaining patients are 5 years old or less [10]. In AICU, the majority of patients are 60 years old or older [7]. Adolescents are a minority in each setting. Despite sampling from four intensive care units (two general, two paediatric) over 12 months, only a small number of 14–17-year-old patients met inclusion criteria (emergency admission longer than 24 h) and even fewer were awake for part of their ICU stay. Furthermore, parents of adolescents are more likely than either the elderly or the parents of infants to be in paid work and adolescents often have time taken up by school examinations, thus making it practically difficult to participate in research of this nature. Although this was not explicitly stated by any family declining involvement, an emergency critical care admission is commonly a traumatic experience [14] and families may be reluctant to revisit events as part of a research study. Finally, as critical care services, particularly PICUs, are centralised, families come from a wide geographical area, with a resulting impact on travel time and logistical arrangements for researchers and families.

Despite these difficulties, we were able to begin to gain an understanding of factors of importance to critically ill adolescents and their families. However, in addition to a small sample size, our methodology and patient group introduced a number of limitations. Firstly, families approached to take part were those known to specialist nurses who assisted with recruitment. It is possible that families opting into the study were those who had a better relationship with the nurses at their hospital. Secondly, interviews were conducted with both the adolescent and their parent present; while this served to elicit a more thorough account than if the adolescent had been interviewed alone, it is also possible that participants censored their responses. Thirdly, patients often found it difficult to remember the details of their admission to critical care; in some cases it was evident that their perceptions and accounts had been influenced by their parents. Previously, adolescents and their parents have been shown to have broadly similar but not identical responses to questions on quality of healthcare [4, 8].

Intuitively, it would be expected that the best way to find out how to optimise care for critically ill adolescents and their families is to ask them directly about their experiences. Although this approach has given us some insight into what may be important to them, we have demonstrated that this methodology would not be feasible to scale up to gain the definitive information needed to guide practice change. To optimise care for this group, two further strands of work are required. Firstly, data are needed on influences on the physical outcomes of adolescents following intensive care. Secondly, our findings can be used to inform the development of a patient-reported experience measure to be administered to larger groups of patients and families, including elective admissions to ICU, to gauge the relative importance of the themes identified, and the extent to which they are delivered in different settings. We have reported our methodology previously for developing a patient-reported experience measure for paediatric inpatients and outpatients in a specialist children’s hospital, and a similar mixed-methods, staged approach could be adopted with ICU patients [20].

Despite the success of adolescent wards in other specialities, the smaller numbers of critically ill adolescents mean that most will inevitably continue to be treated in units designed primarily to meet the needs of older adults or younger children. However we can, and should, continue to learn from the experiences of adolescents to ensure their needs are met in any critical care setting.