Table 7 Content of final survey ready for distribution
Infant survey | Adolescent survey | ||
|---|---|---|---|
Factor | Levels of factors | Factor | Level of factor |
Age (months) | ▪12 ▪24 | Age (years) | ▪13 ▪16 |
Diagnosis | ▪Spinal Muscular Atrophy type 1 ▪Bronchopulmonary dysplasia | Diagnosis | ▪Rett Syndrome ▪Duchenne Muscular Dystrophy |
Prior BiPAP support (hours) | ▪12 ▪18 | Prior BiPAP support (hours) | ▪12 ▪18 |
Parent coping | ▪Struggling to cope with care demands and had requested more home nursing hours ▪Coping well with care demands | Parent coping | ▪Struggling to cope with care demands and had requested more home nursing hours ▪Coping well with care demands |
Adolescent’s own opinion | ▪The adolescent has previously communicated that they want to have continuous invasive LTV via tracheostomy ▪The adolescent has previously communicated that they do not want to have continuous invasive LTV via tracheostomy. | ||
Parent view (on decision to initiate) | ▪Agree ▪Disagree | Parent view (on decision to initiate) | ▪Agree ▪Disagree |
Family network | ▪No ▪A poor ▪A good | Family network | ▪No ▪A poor ▪A good |
Distance (from nearest tertiary care centre) | ▪Less than one hour ▪More than three hours | Distance (from nearest tertiary care centre) | ▪Less than one hour ▪More than three hours |
Infant vignette text | Adolescent vignette text | ||
A [Age] month-old with a history of [Diagnosis] is currently ventilated in the PICU and is difficult to wean from the ventilator. This is the second time they have been ventilated in PICU since birth. This child has been on BiPAP [Prior BiPAP support] hours a day at home; there is an overall deterioration in their chronic respiratory condition. The degree of daily caregiving support for this child’s respiratory health increased in the month prior to admission, including increased nebulisation and suctioning. The family are receiving home care nursing hours, and, prior to the child’s current deterioration, the parents stated that they had been [Parent coping]. Consideration is now being given to continuous invasive long-term ventilation (LTV) via tracheostomy. The parents [Parent view] with the medical team on the need for initiating this treatment. The parents have [Family network] family network of support around them. This child and their parents live [Distance] from their nearest specialist care centre. | A [Age] year-old with a history of [Diagnosis] is currently ventilated in the PICU and is difficult to wean from a ventilator. This is the second time they have been ventilated in the PICU in the last year. This adolescent has been on BiPAP [Prior BiPAP support] hours a day at home; there is an overall deterioration in their chronic respiratory condition. The degree of daily caregiving support for this adolescent’s respiratory health increased in the month prior to admission, including increased nebulisation and suctioning. The family are receiving home care nursing hours, and, prior to the adolescent’s current deterioration, the parents stated that they had been [Parent coping] Consideration is now being given to continuous invasive long-term ventilation (LTV) via tracheostomy. The parents [Parent view] with the medical team on the need for initiating this treatment. [Adolescent’s own opinion]. There is [Family network] family network of support around them. This adolescent and their parents live [Distance] from their nearest specialist care centre. | ||
Response question (DV) | |||
Thinking about the above scenario, on a scale of 1–4, with 1 being extremely unlikely and 4 being extremely likely, how likely are you to support the initiation of continuous invasive long-term ventilation via tracheostomy for this child? 1. Extremely unlikely 2. Unlikely 3. Likely 4. Extremely Likely | |||
Please feel free to add comments regarding your choice of response | |||
Demographic section | |||
Your age | (Years) | ||
Gender | Male; Female; Non-binary; Prefer to specify | ||
Do you consider yourself as belonging to any particular religion or denomination? | Yes, No, Not sure, Prefer to specify | ||
What is your profession? | Medical Doctor, Registered nurse, Nurse Practitioner, Physician Associate, Physical therapist, Physiotherapist, Respiratory therapist, Dietician, Pharmacist, Other (open box) | ||
What is your job title? | Response text box | ||
No of years in current job position | Drop down list of number options | ||
No of years working with children with complex medical needs | Drop down list of number options | ||
Country currently employed | Response text box | ||
Through which professional organisation did you hear about this survey? | Response text box | ||
Any additional comments you would like to share | Response text box | ||