550 Modified hypoxic challenge testing in children on nocturnal ventilation

Samuels, Martin; Riley, Mollie; Kelly, Paula; Brotherston, Stephanie; Pike, Katharine C.

doi:10.1136/archdischild-2022-rcpch.380

Cited by 1 publication

(2 citation statements)

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“…In our study, we have outlined the challenges faced and, importantly, demonstrated how a research question primarily aimed to address an issue of clinical risk offered opportunities for a collaborative insight for families and health care professionals. For clinicians, wide dissemination in health care professional and patient forums has led to recognition of the clinical potential of the modified HCT, leading to changes in the standard operating procedures (Samuels et al, 2022) at the study site. We advocate for tailored recommendations for individual children so that clinical needs and risks are assessed in tandem with social and family aspirations (Trang et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…European Country) … For many years, they came over to see her here but she always wanted to go and see where grandparent(s) live. She's a child she's curious so we were able to do that which was really nice for them … we usually spend 2/3 weeks in the summer over there so it was nice for them to see and experience where grandma in the standard operating procedures (Samuels et al, 2022) at the study site. We advocate for tailored recommendations for individual children so that clinical needs and risks are assessed in tandem with social and family aspirations (Trang et al, 2020).…”

Section: My Parents Live Abroad Her Grandparent(s) Live In (Namesmentioning

confidence: 99%

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‘It gives me more freedom’: Family perspectives on travelling with children on nocturnal ventilation

Riley,

Brotherston,

Samuels

et al. 2023

Child

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BackgroundChildren with neuromuscular weakness or central hypoventilation often require nocturnal ventilation. Children with these conditions are living longer and the numbers of children affected are increasing. The challenges associated with managing ventilation at home have been documented; however, there has been limited investigation into accessing wider experiences such as travel. Air travel, in particular, may be considered challenging for children with these conditions because oxygen levels are lower in airplane cabins than at sea levels.ObjectiveWe sought to understand experiences of and attitudes towards travel amongst families of children using nocturnal ventilation for neuromuscular weakness or central hypoventilation.MethodsTwo semi‐structured interviews were conducted amongst participants enrolled in a trial of a new pre‐flight assessment of their tolerance of reduced oxygen levels during flight (known as a hypoxic challenge test). Children participating in the trial were aged 19 months to 18 years. Parents were interviewed and provided proxy views for younger children, and older children were encouraged to present their own views during these interviews. One interview was conducted immediately after the assessment, and a second 3 months later. Data were analysed utilising the framework approach to thematic analysis.ResultsSeventeen families participated in the first interview with 14 of these families completing the follow‐up interview. Three further families participated in the follow‐up interview only. Here, we report three themes relating to participant experience of travel and how this is impacted by their condition. The three themes and their sub‐themes were (1) insight into children's lives: hospital attendances, gaining knowledge and confidence, and child as a person; (2) travelling with your child: planes, trains and automobiles, rules of air travel, and uncertainty; and (3) the meaning of travel: normalisation, connection to extended family, expanded experiences, and freedom and equality.ConclusionsThis population of children and their families aspire to travel but face challenges from clinical and social barriers. It is essential that we further our understanding of the physiological, social and cultural aspects of their experience to facilitate their access to broadened life experiences.

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Section: Discussionmentioning

confidence: 99%

Section: My Parents Live Abroad Her Grandparent(s) Live In (Namesmentioning

confidence: 99%