In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made.
Conclusions
The 2 principal groups of families in our cohort—those with children whose respiratory insufficiency might improve, and those with children facing chronic decline—warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced.
More than 1 million children in the US rely on home medical equipment, with a growing number of children using home ventilation; this population will increase related to greater availability of home medical technology and more inclusive views of disability. Children who are candidates for home medical technology have often faced life-threatening conditions with sequelae that preclude independent eating or breathing. Home ventilation is a particularly intensive technology for a child and family, requiring around-the-clock monitoring and robust home health services. Data suggest that home ventilation can have wide-ranging impact on the entire family, including siblings, in the form of parent job loss, financial struggles, depression, and burnout. Variable access to and quality of pediatric home healthcare often compounds these burdens. Decisions to initiate pediatric home ventilation often occur during a prolonged hospitalization. Lengthy hospitalizations are mentally, physically, and emotionally exhausting and can undermine family understanding about achievable goals of care. In addition, because home ventilation is uncommon, few families have relevant previous life experiences. These potential gaps in family understanding elevate the need for high-quality clinician counseling. Clinicians who guide these decisions should have an understanding of what other families have needed in similar scenarios. Yet few studies have explored how families make decisions about pediatric home ventilation. Extant reports are largely single center and focused primarily, if not exclusively, on families who opted for tracheostomy/home ventilation for their child. These data begin our understanding of how choices about pediatric home ventilation are approached, particularly for parents who do choose tracheostomy/home ventilation. Important questions remain about what drives decisions among families whose children have chronic respiratory insufficiency, including families who choose not to pursue tracheostomy/home mechanical ventilation and families from diverse institutional and geographic contexts. The goal of this multicenter study of families who chose for, or against, tracheostomy and home mechanical ventilation was to broaden the understanding of how families experience choices about home ventilation. This information is key to determining how clinician counseling can improve decision-making for families.
Methods
This qualitative interview study recruited English-speaking families whose children had received care from academic medical centers in Maryland, Washington, and Mississippi, states chosen for their geographic diversity. Eligible parents had faced decisions about home ventilation within the previous 5 years; adoptive, foster, and grandparents were eligible if they were primary caretakers and decision-makers for the child. Purposive sampling was used to balance inclusion of families from across the regions who had made different decisions about home ventilation; for the purposes of this study, home ventilation was defined as invasive mechanical ventilation delivered via tracheostomy. Identification of eligible families was determined via discussions between the site principal investigator and local intensive care, palliative care, and pulmonary clinicians. Sites required slightly different methods for contacting eligible families: 2 sites required phone/in-person contact by treating clinicians; 1 site approved contact via letter from the research team. Recruitment stopped once thematic saturation was reached.21 We did not explicitly recruit >1 parent per child, but if both parents wished to be interviewed together, their data were analyzed as a “family.” We followed the guidelines of Meert et al in recruiting bereaved families.22A semi-structured interview guide was devised to include domains suggested by previous work of the authors and others, including context and course of child’s respiratory insufficiency, treatment options, communication with clinicians, parent concerns, goals and values, and child/family experience after the decision about home ventilation The rationale for these domains was to capture parent’s longitudinal experience of learning about, making decisions about, and coming to terms with choices about home ventilation. To account for content limitations or question bias that might derive from our research team’s perspectives, the interview guide was critically reviewed by our study advisory council (parents of children who had faced decisions about home ventilation; clinicians in pulmonology, palliative care, complex care, intensive care; case managers; home healthcare providers; decision-aid researchers). Audio-recorded telephone interviews with families lasted 30-120 minutes; at each site, interviews were conducted by 1 or 2 of the authors, who were all trained/experienced in qualitative interviewing. Transcriptions were returned to participants for member-checking. Institutional review board approval was obtained at all sites and consent obtained. Participants received a $50 gift card.Content analysis was initially performed on transcripts using Dedoose software (developed by academics from UCLA, Los Angeles, California) for data management and coding. Content related to the family experience of their child’s respiratory insufficiency, the treatment options considered, the family’s recall of decision-making, and their current feelings about the decision were extracted. Two authors individually assigned codes to a subset of the targeted transcripts, then jointly reviewed codes with the larger group to create a final codebook. One author with experience in complex medical decision-making coded remaining transcripts; questions or uncertainties about specific pieces of content were resolved iteratively with the larger group at weekly meetings. Related codes were grouped into thematic categories, which were then sorted and organized through repeated discussion with the larger group and via consultation with our study advisory council. These were then consolidated into overarching themes that summarize and represent the data.
