The perceptions and preferences of parents of children with tracheostomies in a study of humidification therapy

Abstract

This article reports a grounded theory study which was the qualitative phase of a randomized-controlled trial in children with tracheostomies comparing two techniques for providing humidified inspired gases. Semi-structured interviews were conducted with eight mothers of children with tracheostomies recruited from the trial, one mother who was not involved in the trial and four experienced nurses. Data were analysed using open, selective and theoretical coding. A core category was identified of parents managing the child's care in response to a set of problematic and constraining states. Parents were seen to utilize strategies of constant checking, becoming the expert, the family pulling together and electing to use preferred technology. The findings of this study mirror those of previous studies and reinforce the primacy of caregivers as managers of their child's health care. Mothers elected to use or not use a given technology within this context, utilizing a process of balancing.

Parental decision-making for medically complex infants and children: An integrated literature review

“…Across the illness course, poor quality of life was defined as suffering, limitation of both physical and emotional well-being (McNamara et al, 2009), and not having a ‘normal’ life (Michelson et al, 2009). Suffering was described as physical and emotional pain (e.g., fear).…”

“…The physical and emotional pain the child may endure also affected decisions about treatment (Moro et al, 2011). Physical pain could come from the treatments the child endured (Carnevale et al, 2011; McNamara et al, 2009; Meyer et al, 2002; Michelson et al, 2009). The neurological status of the child was used by parents as an indicator of whether the child would be aware of his/her surrounding and if he/she was able to communicate and interact with the world (Ellinger and Rempel, 2010).…”

Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study – a mixed methods study

“…64,66 Complex interventions frequently required behavioural changes on the part of recipients and/or those delivering the intervention which were sensitive to individual preferences, beliefs and circumstances. 65 Less complex interventions, such as biomedical or drug interventions, were also acknowledged to have strong behavioural components that required attention. The drug trial reported by Plummer et al 68 attempted to measure adherence to drug therapy among the trial participants, but recognised the limitations of these data for explaining the observed patterns of adherence.…”

Heated Humidification Improves Clinical Outcomes, Compared to a Heat and Moisture Exchanger in Children With Tracheostomies

“…27 We found that in managing their child's care, parents of children with tracheostomies balanced the difficulties of using a treatment against its benefits to the child's health, decreased parental worry, and decreased need for the parent to wake in the night. Most of the interviewed parents elected to continue using the HH, but a few elected to use HME when the difficulties of HH outweighed the benefits.…”