Development and validation of a novel informational booklet for pediatric long‐term ventilation decision support

Edwards, Jeffrey D.; Panitch, Howard B.; George, Maureen; Cirrilla, Anne-Marie; Grunstein, Eli; Wolfe, Joanne; Nelson, Judith E.; Miller, Rachel L.

doi:10.1002/ppul.25221

Cited by 9 publications

(4 citation statements)

References 33 publications

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“…Care should be taken to ensure that content supports parents leaning towards, or against, home ventilation equally. Web‐based decisional tools, 32 online resources, 33 and informational booklets 34 developed with the intention of providing balanced perspectives could help achieve this end. Of course, any standardized approach must be modifiable to the individual family context.…”

Section: Discussionmentioning

confidence: 99%

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Jabre

Raisanen

Shipman

et al. 2021

Pediatric Pulmonology

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Rationale Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision‐making needs of parents who made different choices for their children could inform clinician counseling that better supports parents’ diverse values and goals. Objectives To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention. Methods We conducted semi‐structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent–clinician communication during decision‐making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results. Results Thirty‐eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high‐quality decision‐making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision. Conclusions High‐quality decision‐making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.

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Section: Discussionmentioning

confidence: 99%

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Jabre

Raisanen

Shipman

et al. 2021

Pediatric Pulmonology

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“…Few decisional tools are available to support family‐caregivers through decision‐making (e.g., booklets, infographics, data visualization, or video testimonies). Only one study measured changes in caregiver decisional conflict scores when an information tool was used, although this did not reach significance 68 . No studies were found analyzing effective strategies to mitigate family‐caregivers' mental stress.…”

Section: Resultsmentioning

confidence: 99%

“…Only one study measured changes in caregiver decisional conflict scores when an information tool was used, although this did not reach significance. 68 No studies were found analyzing effective strategies to mitigate family-caregivers' mental stress.…”

Section: Therapy Goalsmentioning

confidence: 99%

Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

Mack,

Mailo,

Ofosu

et al. 2024

Pediatric Pulmonology

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An increasing number of children are surviving critical illnesses requiring tracheostomy/long‐term ventilation (LTV). This scoping review seeks to collate the available evidence on decision‐making for tracheostomy/LTV in children. Systematic searches of electronic databases and websites were conducted for articles and reports. Inclusion criteria included: (1) children 0–18 years old; (2) described use of tracheostomy or tracheostomy/LTV; and (3) information on recommendations for tracheostomy decision‐making or decision‐making experiences of family‐caregivers or health care providers. Articles not written in English were excluded. Of the 4463 records identified through database search and other methods, a total of 84 articles, 2 dissertations, 1 book chapter, 3 consensus statement/society guidelines, and 8 pieces of grey literature were included. Main thematic domains identified were: (1) legal and moral standards for decision‐making; (2) decision‐making models, roles of decision‐makers, and decisional aids towards a shared decision‐making model; (3) experiences and perspectives of decision‐makers; (4) health system and society considerations; and (5) conflict resolution and legal considerations. A high degree of uncertainty and complexity is involved in tracheostomy/LTV decision‐making. There is a need for a standardized decision‐support process that is consistent with a child's best interests and shared decision‐making. Strategies for optimizing communication and mechanism for managing disputes are needed.

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“…Whilst individual neuromuscular and central hypoventilation diagnoses might be rare, the total population of children affected by these conditions is increasing (Rose et al, 2019; Woodcock et al, 2016). Moreover, these children are living longer lives (Barker et al, 2023; Castro‐Codesal et al, 2018; Flotats‐Bastardas & Hahn, 2020; National Confidential Enquiry into Patient Outcome and Death [NCEPOD], 2020; Turner, 2023; Wallis et al, 2011), with associated and changing expectations about the scope of their anticipated life experiences and opportunities (Bayes et al, 2012; Edwards et al, 2021). Understanding the value of expanding opportunities for children requiring nocturnal ventilation to include air travel requires consideration of the clinical implications for the individual child, knowledge of the practical issues and appreciation of the meaning of these ambitions for the child and family.…”

Section: Introductionmentioning

confidence: 99%

‘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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Development and validation of a novel informational booklet for pediatric long‐term ventilation decision support

Cited by 9 publications

References 33 publications

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Tracheostomy and long‐term invasive ventilation decision‐making in children: A scoping review

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

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