multicenter homevent: home values and experiences navigation track

Conditions: Pediatric ALL; Respiratory Insufficiency; Communication

Summary: this is a multicenter study to test a decision-making support process for families and clinicians facing decisions about chronic home ventilation for a child. the investigators hypothesize that the intervention will increase family preparedness for decision-making and will improve clinician-family shared-decision making. half of families will be assigned to "usual care" arm and half to the "intervention" arm. intervention families will view the study website with study staff and will answer questions related to website content. all families will be interviewed and surveyed at 1, 6 and 12 months after enrollment. each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed and surveyed at 1 month.

across 4 centers, the investigators will recruit 150 english and/ or spanish-speaking families (up to 2 parents per family) who are currently facing a decision about tracheostomy and home ventilation for the child. the investigators will also recruit up to 2 clinicians who are central to the decision for each child. the first 50% of families will be assigned to "usual care" arm and the second 50% of families will be assigned to the "intervention" arm. intervention families will view the study website with study staff and will answer questions related to website content in an interview that could last up to 2 hours. all families will be interviewed at 1, 6 and 12 months after enrollment (each interview lasts 15-30 minutes). each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed at 1 month interviews last \~15 minutes). this is a controlled trial of a communication intervention and requires careful attention to words used. the investigators support the intention of being inclusive, and have invested considerable effort in creating a spanish intervention and diversifying the team to include more native spanish-speakers. however, as a communication randomized control trial (rct), the investigators are concerned that one-off efforts to translate the website as well as using a translator, may confound the investigators interpretation of the data. most significantly, the investigators risk not finding differences between the two arms if the investigators include those who do not speak english or spanish. primary endpoints: the investigators hypothesize that, compared to families who receive usual care related to decision-making about pediatric chronic home ventilation, families who receive the homevent intervention will have increased preparedness for decision-making 1 month later. the investigators hypothesize that, compared to families who receive usual care related to decision-making about pediatric chronic home ventilation, families who receive the homevent intervention will perceive increased shared decision-making 1 month later. the investigators hypothesize that, compared to physicians of families who receive usual care related to decision-making about pediatric chronic home ventilation, physicians of families who receive the homevent intervention will perceive increased shared decision-making 1 month later.

Eligibility criteria:
inclusion criteria: 1. english- or spanish-speaking 2. males and females; age 18 and over. 3. parent of a child facing a decision about home ventilation within 30 days. a "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc). or physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision. 4. provision of signed and dated informed consent form (parent) or completion of oral consent (physician) 5. stated willingness to comply with all study procedures and availability for the duration of the study 6. access to necessary resources if choose to participate via internet or telephone exclusion criteria: 1. excluding children as they cannot be legal decision-makers 2. non-english or non-spanish speaking parents, as the intervention website/ videos are only available in those two languages.

Keywords: chronic ventilation decision-making