The Lighthouse Never Sleeps

QC 2026-06-25

Abstract

Tracheostomy-dependent children are a growing population, emerging from increased survival and, consequently, the possibility of living with increasingly complex conditions. This development is assumed to result from parallel advancements, innovations, and research in healthcare and technology fields. Many complex conditions require continuous life-sustaining dependence on both care and technology to maintain health and survival. However, a stagnant perspective and focus have prioritized development, innovation, and research toward survival rather than living with these conditions and their requirements. In families of tracheostomy‑dependent children, parents often assume responsibility for and carry out their children’s daily care, especially when care and everyday life transition into the family home and are supported by Personal Care Assistants. It is important to explore and highlight these families’ experiences to build knowledge and understanding of the system these families rely on and exist within.

This thesis aims to analyze critical aspects and system-level interactions in families’ everyday lives and understand how interactions between humans, technology, and organizations shape and influence safety and sustainability in their everyday lives and the provision of care. The thesis is theoretically grounded in the HTO concept (Human–Technology–Organization), the salutogenic perspective on health through SOC (Sense of Coherence and Meaning), and a framework for domestication and its process between humans and technology. The thesis consists of four studies: three interview studies and one literature review. For Studies I and II, parents of tracheostomy-dependent children were recruited from Sweden’s only long-term intensive care unit for children to be interviewed. Study I used Grounded Theory to analyze how these parents adapted to parenthood. Study II used descriptive phenomenology to explore parents’ lived experiences in everyday life. The third study (Study III) was a scoping literature review that aimed to describe the safety risks, incidents, and adverse events for children living with tracheostomy that have been reported in previous research and how these have been described. For the fourth study (Study IV), parents, personal assistants, and healthcare professionals were recruited via social media and related organizations for interviews. Study IV used the domestication framework in an abductive analysis supported by Reflexive Thematic analysis, with the aim of describing how the tracheostomy is domesticated in these families’ everyday lives.

The thesis identifies the largely neglected but parentally formative pre-tracheostomy‑ ICU-period, with insufficient recognition or support. Following tracheostomy, everyday life is reorganized around the technology and the child’s dependence, requiring parents to be actively present and involved across all contexts and interactions with the surrounding society to ensure safety, facilitate participation, and broker system interactions. Previous research regarding safety has been fragmented and narrowly focused, obscuring the origin of risks and adverse events, indicating the need for a broader and diversified perspective to accurately identify risks and enable effective interventions. The thesis also shows how the tracheostomy domesticates the families, homes, and routines, while families held limited influence over the technology of tracheostomy. Although parents would develop expertise and mastery of the technology and their children’s care within the home, their expertise is rarely acknowledged or integrated systematically beyond individual Healthcare Professionals. The current system in which these families exist is inefficient and risk-laden‑ and calls for urgent, co-designed‑ interventions that center on the lived experiences and needs of the families. A shift relevant to transition from the needs and requirements posed by a parental-reliant system to system adaptations that meaningfully support families.

This thesis provides a systems perspective and account of primarily parents of tracheostomy-dependent‑ children, arguing that prior research has often overlooked the socio‑technical system that these families depend on, and that depend on these families. It contends that the system is implicitly dependent on parents and families of tracheostomy-dependent children, who must continually compensate for systemic gaps while simultaneously providing life-sustaining care and managing life-threatening‑ risks for their children. This unrecognized overreliance diverts parental efforts and focuses away from the child, towards primarily system maintenance, stability, and functionality instead. Overreliance on parents effectively locks parents into acting as system buffers‑ to ensure their tracheostomy-dependent children’s health and survival. A modified Human–Technology–Organization (HTO) model is introduced to illustrate previously unarticulated system complexity and interdependencies, offering a novel system perspective. A system that depends on parents to ensure their tracheostomy-dependent‑ children’s survival, safety, and health is unsustainable for all humans, all actors, and stakeholders, as well as the system itself. Tracheostomy-dependent children are in the most vulnerable position, exposed to life-threatening‑ risks and consequences if they do not receive the life-sustaining care and support they depend on.

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