Aim

To explore inequitable access to PCC and SIC for CYP in NENC and inform service improvement.

Design

We conducted a qualitative study using semi-structured interviews, analysed using a combined inductive-deductive approach informed by The UK Paediatric Critical Care Society Quality Standards for the Care of Critically Ill or Injured Children [1]. A qualitative study design was selected to enable us to explore different perspectives on accessing PCC and SIC, and specifically how access might be socially shaped, context-dependent, influenced by systems, relationships, and lived experience. Reporting of our study was written in accordance with the ‘Consolidated criteria for reporting qualitative research’ (‘COREQ’) checklist [20] (S1 Table 1).

Setting

Our study was based in the NENC region where PCC and SIC are delivered by eight NHS Foundation Trusts. Three levels of PCC are provided in the region; six Trusts provide inpatient paediatric care, one Trust has a L2 unit, and one Trust provides L2 and L3 critical care. Several factors shape the rate at which CYP are admitted to a L3 Paediatric Intensive Care Unit (PICU). These include: local levels of socio-economic deprivation, ethnicity, rate of significant comorbidities, and the quality of primary, secondary and tertiary care available. Further influences include system and process factors such as differences between L3 providers on the level of threshold for PCC admission [21].

In terms of demographics, at the time of the study, the ethnic make-up of the NE and NC was predominantly white British (90.6% and 95.2% respectively) compared to England and Wales as a whole (74.4%) [22]. While we advertised participation opportunities widely to diverse populations through VCSE and primary care networks, given our budgetary and capacity constraints, we were unable to produce bespoke recruitment methods, including multilingual materials, as well as multilingual staff, to engage with underrepresented communities. It is unclear therefore whether our findings will have relevance to regions with greater ethnic diversity.

Ethics approval

This study was ethically reviewed and approved by the North East – Tyne & Wear South NHS Research Ethics Committee (study reference 313965), part of the Health Research Authority in England. Electronic or written informed consent was obtained from all participants prior to data collection. For participants under 18 years of age, parental consent was obtained, together with assent from the young person. Participants consented to the use of anonymised interview excerpts in academic dissemination, including peer-reviewed publications.

Participants

Demographics, specifically age, ethnicity and first three characters of postcode, were collected for descriptive purposes and to monitor sampling strategies. Participants were:

1. CYP aged 12–16 years admitted to NENC PCC and SIC services for all conditions within the past six months from date of study entry;
2. Primary caregivers of CYP aged 0–18, whose child had been admitted to NENC PCC and/or SIC services for all conditions within the past six months from date of study entry;
3. HCPs working in NENC PCC or SIC, and VCSE staff working alongside NENC PCC or SIC services.

See S2 Table for participant inclusion and exclusion criteria. We restricted the ages of CYP participants to 12–16 years as PICUs typically care for children from birth up to their 16^th birthday [23]. Some PICUs make exceptions for young people up to 18 years old, with those aged over 16 years having an option to choose whether to be seen in the paediatric or adult area. The lower limit was 12 years, an age at which children are often considered capable of providing assent to participate in research, in addition to legal guardian consent.

Patient and public involvement

Participant information sheets and interview topic guides for CYP were reviewed for accessibility and face validity by a young advisor from the NIHR Applied Research Collaboration NENC Young People’s Advisory Network to ensure the questions were clear and relevant to CYP's experiences. For content validity, senior clinicians in PCC and SIC advised on the staff topic guides, which were then piloted and refined by the research team. After analysis, preliminary themes were discussed with HCPs, caregivers, and VCSE staff for relevance.

Recruitment

Community-based recruitment strategies were employed (S3 Table). CYP, caregivers, HCPs, and VCSE staff were invited to participate using convenience and snowball sampling. Direct recruitment from PCC and SIC was avoided for ethical reasons, as we did not want to disturb CYP and caregivers during hospital visits for serious health conditions. Instead, hospital partners displayed study adverts in paediatric critical care and surgery units to raise awareness among staff and potential participants. VCSE collaborators also shared electronic adverts with their networks, inviting interested individuals to contact the research team. Awareness was further spread through NHS trusts and regional health networks via newsletters and social media.

Potential participants self-referred on an opt-in basis using the contact details provided. Upon expressing interest, they were emailed an information sheet to review carefully, followed by a request for electronic or written informed consent from all participants, including legal guardians for those under 16. Participants were given verbal support during interviews if needed, and verbal consent was sought to continue. None of the participants withdrew from the study. All participants received a debrief leaflet with mental health support resources and a £20 shopping voucher as thanks for their contribution.

Methods

Data collection occurred between 22^nd July 2022 and 31^st August 2023. Data were collected through a choice of one-to-one or paired semi-structured interviews for CYP, and interview or focus group for caregivers. PCC and SIC staff, as well as VCSE staff, were invited to participate via semi-structured interviews. Interviews occurred once and were not repeated due to limited funding and capacity. All participants were given the option to be interviewed either face-to face, via video (using Microsoft Teams), or telephone. Interviews lasted on average 45 mins, and were conducted by one of two female researchers (CE, EC), with no one else present. Participants were not known to the researchers conducting the interview. At the time of the study, the lead interviewer (CE) was a postdoctoral fellow with over a decade of experience in qualitative applied health research, and the second interviewer (EC) was a medically qualified registrar completing advanced training in public health.

The UK Paediatric Critical Care Society Quality Standards for the Care of Critically Ill or Injured Children [1] were used as a theoretical framework to guide and provide consistency across interviews. We specifically drew on the quality standards for Level 3 Paediatric Critical Care Units on information and support for children and their families, which was incorporated into our topic guides (S4 Table). The standards outline what PCC services should be providing and the relevant standards for doing so. Where a service does not meet or deliver these standards, it is recommended that a risk analysis is completed. As such, the standards can be used by any service as a framework for local improvements. We judged these standards to be the most suitable guiding framework to drive quality improvement in PCC and SIC services, including Specialist Paediatric Transport Services.

Analysis

Interviews were audio-recorded and transcribed verbatim, with qualitative data subsequently managed using NVivo Version 13 software [24]. Transcripts were not returned to participants for participant validation (member checking), nor were participants invited to provide feedback on the findings. We intentionally refrained from defining the concept of ‘access’ a priori, allowing meanings to emerge during analysis based on participants’ first-hand insights and experiences with health services. Our epistemological stance was informed by Dixon-Woods and colleagues’ concept of ‘candidacy’ [18], which highlights how individuals’ eligibility for medical attention and intervention is negotiated between themselves and health services. This perspective enabled us to view access to PCC and SIC services as a dynamic, situated, and layered process. Consequently, we recognise that not all individuals experience barriers in the same way. Formal comparative analysis between groups was not undertaken at this early stage. Instead, our combined deductive-inductive framework analysis (see below) prioritised identifying cross-cutting themes relevant across participant groups.

Data collection and analysis were conducted iteratively using a combined deductive-inductive approach which drew on best-fit framework analysis [25–27] allowing us to explore both anticipated and emergent themes. Best-fit framework analysis is a qualitative approach that combines deductive and inductive logic. It extends traditional framework analysis [28–29] by enabling the use of an a priori conceptual framework to guide data interpretation while retaining flexibility to incorporate emergent findings. Originally developed for qualitative evidence synthesis, this approach is increasingly applied in primary qualitative research, particularly in studies of patient and caregiver experiences of barriers to care [30–31].

We used the UK Paediatric Critical Care Society Quality Standards for the Care of Critically Ill or Injured Children PCCS [1] as a framework to structure initial coding across different participant groups, while also supporting the generation of policy-relevant insights grounded in an established structure. Analysis proceeded in two stages (S5 Figure): first, deductive coding was undertaken using domains derived from our framework; second, inductive coding was conducted to identify novel or unanticipated barriers emerging from the data, with iterative refinement of the analytic framework. CE coded all transcripts line-by-line while making detailed and reflexive annotations to track inductive thematic development. To facilitate alignment between the data, researcher coding and the quality standards framework, EC and HM each coded three transcripts which were discussed with CE for comparison, consensus and refinement of initial codes.

Analysis was conducted concurrently with recruitment. We continued with recruitment until sufficient depth and diversity of perspectives were achieved to address the research question (i.e., thematic sufficiency). A coding framework (S6 Table) was created by CE to record major and minor themes for each participant group, which were then discussed in analytical meetings. Based on these discussions, codes were then indexed, charted, mapped, interpreted and developed into main themes by CE, then named and defined together with illustrative extracts. CE and EB then reviewed illustrative extracts in conjunction with CE’s coding annotations to assess whether the proposed themes deductively ‘fit’ existing domains of the quality standards. For codes that did not fit the framework, or those we considered to have emerged ‘inductively’, ongoing discussions were held to conceptually expand the framework where required. Illustrative extracts were then considered and selected for each theme (S7 Table).

Limitations

Several methodological challenges were encountered in this study, all of which limit the extent to which any inferences can be drawn. Firstly, difficulties in recruiting all participant groups resulted in a high likelihood that important views on barriers to access are missing. Only two YP were recruited, meaning that barriers from the perspectives of CYP remain poorly understood, a factor to consider when interpreting the findings. Given the small and uneven sample sizes within our subgroups, we considered that subgroup comparisons would not be methodologically robust and may risk over-interpretation of context-specific perspectives. This means transferability of findings to wider populations is limited and differences between groups may be overstated or understated. Additionally, the external validity and generalisability of our results to other populations and regions are limited due to our use of convenience and snowball sampling. While the insights generated may be relevant to other socio-economically underserved regions of the UK, our focus on a small subset of experiences limits the applicability of identified barriers to other contexts. Pragmatic constraints, including limited time and funding, impacted our ability to implement more robust and engaging recruitment strategies.

Secondly, although multiple recruitment strategies were employed resulting in a rich dataset with conceptual depth, the low sample size prevented us from reaching ‘data saturation’, particularly for CYP. Again, this limitation suggests that important issues or insights may have been missed. Third, it is possible that the time lag between their hospital experiences and study participation may have impacted participants’ ability to recall certain details, although this seems unlikely given the richness and depth of participants’ descriptions. Fourth, given the exploratory nature of the study, CYP and caregivers facing specific medical conditions and/or financial hardships were not specifically targeted, despite financial constraints often being raised by participants. Fifth, although the identification of socio-economic factors was a key finding, our analysis remained superficial (e.g., focusing on transport and parking costs). Finally, interviews were conducted with English-speaking participants, leaving the experiences of CYP from families where English is not spoken unexplored. Views on barriers to access from ethnically diverse people and communities are underrepresented in this study, further limiting the generalisability of our findings to the broader population.

Key learning for future research

Our study identified several key considerations for future research:

1. Co-design with stakeholders: CYP, their caregivers, and VCSE staff should be invited to co-design the study as equal partners. Their active involvement from the pre-application phase through all stages of the research process will enhance feasibility, acceptability, efficiency, and relevance.
2. Diverse participation: Effective community engagement and recruitment strategies are essential. Future research with larger and more balanced samples could usefully explore differences between participant groups to further refine understanding of how barriers may differentially affect populations. There is an urgent need to engage CYP and their caregivers with experiences of PCC and SIC, particularly those with complex health needs, from low-income backgrounds, geographically remote areas, and ethnic minority groups. Future studies should explore how socio-economic status intersects with geographical isolation, disability, and race, leading to compounded inequalities. Researchers should collaborate with local representatives from underrepresented communities to better understand their needs and barriers to health research participation. Study designs should include multilingual materials and staff, widely advertise participation opportunities, and allocate budget and time for community engagement throughout the research process.
3. Enhancing study awareness: To improve recruitment, public awareness of study participation should be increased among CYP by creating accessible videos for social media and distributing study adverts in patient discharge letters and local media outlets. VCSE participants suggested presenting the study and distributing adverts at school and community events, particularly those for special educational needs and disabilities.
4. Inclusion of experienced hospital staff: Given the complexity and ethical sensitivity of PCC and SIC research, study teams should include paediatric research nurses with relevant expertise.
5. Innovative research methods: In light of communication challenges, it is vital to co-create developmentally appropriate, interactive tools, such as puppets, books, drawings, apps, and videos, to enhance CYP’s understanding of the research and enable them to express their views. VCSE participants also recommended involving an experienced play therapist to assist with data collection.

Policy and practice recommendations

Twenty-two evidence-informed recommendations have been established to improve barriers in PCC systems [20]. Our findings support these recommendations, particularly aligning paediatric care pathways more closely; increasing the number of L2 beds to reduce strain on L3 beds; ensuring capacity matches demand; and ensuring adequate clinical staff are available to meet demand, possessing relevant critical care expertise. In addition, we recommend the following:

1. Provision of age-appropriate information: Local health systems should provide PCC and SIC services with age-appropriate, engaging, and accessible information for CYP and their caregivers prior to hospital visits. This information should address expectations, roles, and the risks and benefits of care, and be co-designed with input from CYP, caregivers, and VCSE staff.
2. Awareness of early warning signs: Local health systems should enhance caregivers’ knowledge of early warning signs of clinical deterioration at home by raising awareness of existing tools, such as the NHS Healthier Together website and app [45], which provide guidance and reassurance.
3. Financial support signposting: HCPs or hospital social workers should proactively signpost caregivers to financial support for costs associated with PCC and SIC, including transport, parking, sustenance, accommodation, and necessary equipment. Establishing data-sharing agreements between hospitals and social services could help identify broader determinants affecting CYP's access to healthcare.
4. Development of support policies: Local health systems must address the urgent lack of policies to support caregivers when their child attends PICU and/or SIC, as this is crucial for safeguarding caregivers’ health.