Escalating Concerns in Paediatric Hospital Care: A Qualitative Study of Involvement, Support and Empowerment of Families From Culturally and Linguistically Diverse Backgrounds

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Abstract
Background: Families frequently recognise early signs of deterioration in their children. In English‐centric environments, families from culturally and linguistically diverse (CALD) backgrounds face challenges in escalating concerns in hospital because of language barriers, limited health literacy, uncertainty about escalation pathways, and variable staff responsiveness. Although digital approaches may support communication, it remains unclear whether they address the wider organisational conditions required for equitable escalation of care. Objective: This study explored hospital experiences of CALD families and investigated their views on a potential digital tool to escalate acute clinical concerns during their child's hospitalisation. Material and Methods: This qualitative study was guided by a multicultural consumer advisory group. Families from CALD backgrounds participated in semi‐structured focus groups and one‐to‐one interviews, conducted in English or with interpreters. Audio‐recordings were transcribed, de‐identified and analysed using reflexive thematic analysis. Results: Thirty‐four parents/carers representing 34 distinct families and 15 CALD backgrounds participated in 11 focus groups and two individual interviews. Three themes were identified: (i) communicating is not easy; (ii) shaping health system satisfaction; (iii) communicating using digital tools. Families described both supportive and challenging interactions with health staff and the system. Positive experiences were associated with plain language, clear explanations, and inclusive communication. Negative experiences included not feeling heard when raising concerns, inconsistent access to interpreters, unclear information about how to escalate concerns, and distress associated with waiting and uncertainty in emergency care. Although some families saw the value in digital tools, particularly for translation, rapid communication, and access to information, they consistently prioritised broader service changes. These included routine offers of interpreter support, clearer explanations of hospital processes, more detailed information about their child's condition and treatment, and a more welcoming environment for asking questions and raising concerns. Conclusions: Families viewed digital tools as potentially useful, but not sufficient on their own. Inequities in escalation of care were shaped not only by language discordance, but also by wider organisational conditions, including inconsistent interpreter access, unclear escalation pathways, variable staff responsiveness, and limited opportunities for families to feel heard. System change is therefore essential if digital approaches are to support equitable escalation of care in hospital settings for these families. Lived Experience or Public Contribution: A consumer and community involvement was integral to the study. A Multi‐Cultural Consumer Advisory Group (MCAG), comprising six members from CALD backgrounds (China, Egypt, India, Russia, Sierra Leone, and Vietnam), contributed to study design, recruitment planning, interpretation of findings, and refinement of the developing intervention. MCAG members also supported recruitment by sharing study information with their communities.

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