Table 4.
Barriers to informed decision-making around long-term ventilation as described by directors of pediatric home ventilation programs
| Source | Barrier | No. Who Mentioned (Out of 15) | Comment/Example |
|---|---|---|---|
| Family | Inability to really grasp the information provided or the “big picture” | 7 | |
| Unrealistic expectations | 5 | For example, in miracles; about what LTV can do; about amount of help they will receive in the home; in medical progress/ innovations | |
| Focusing on the here and now to the detriment of the long term | 3 | ||
| Stress/fear of making any decision | 3 | ||
| Denial or lack of readiness/willingness to hear information | 3 | ||
| Theological fatalism | 1 | The viewpoint that a higher power controls everything so there is no decision for them to make | |
| Unrelated family stressors | 1 | ||
| Fear that they are being discriminated against because of their socioeconomic status | 1 | ||
| Provider | Not fully informing families | 14 | Includes: |
| • Information about LTV and that not initiating LTV is an option | |||
| • Not involving the appropriate teams in decision-making (e.g., pulmonology/home ventilator team) | |||
| • Using euphemisms or nonlay language | |||
| Mixed or inconsistent messages | 4 | ||
| Inability to provide prognosis (and sometimes diagnosis) | 4 | Although genetic testing is getting better, it is not perfect | |
| Lack of nuanced outcome data for children on LTV | |||
| Negative biases regarding the quality of life and abilities of many children on LTV | 3 | Accurate impressions can be hindered because many providers only interact with such children when they are hospitalized. | |
| Rushing families to make decisions | 3 | ||
| Not willing to broach difficult topics | 2 | For example, that condition will be static or progressive; the impact of LTV on the family | |
| Focusing on the here and now to the detriment of the long term | 2 | ||
| Changing inpatient providers | 2 | Providers rotate on and off clinical service | |
| Not engendering a sense of trust in families | 1 | ||
| Inability to surmount cultural or language differences | 1 | ||
| Setting unrealistic expectations | 1 | ||
| Other | Influence from outside sources/people | 6 | For example, other family members or religious/cultural community |
| Misinformation from outside sources/people | 5 | For example, from the internet, television/media, support groups. Includes overly negative and positive impressions of people dependent on medical technology | |
| Insufficient home care, emergency care, or palliative care resources in the family’s area (e.g., rural area) | 2 | ||
| Disagreement/discord between family and providers | 1 |
Definition of abbreviation: LTV = long-term ventilation.