Article Figures & Data
Figures
- FIGURE 1
The technology decision support process.
- FIGURE 2
Degree of neurologic and respiratory morbidities as indications for technology decision support process.
Tables
Potential Team Membera Expertise Tools and Tasks Child’s prognosis and treatment options Facilitator Long-term medical and neurodevelopmental prognosis Likelihood of decannulation Alternatives to LTV Procedural considerations Identify key clinician and/or provider stakeholders in the child’s care Convene structured team meeting to reach a consensus about prognosis and treatment options before meeting with the family ICU clinician Surgical specialist (eg, ENT) Subspecialists Hospitalist Respiratory therapist Developmental pediatrician Speech therapy Lived experience of LTV Facilitator Usual hospital course for child with LTV Practical skills and daily home care Outpatient care coordination and medical home Likely rehospitalizations Other parents’ experiences of choosing or declining LTV Home health team demonstrates equipment and care tasks parents would have to learn Pulmonologists describe potential sites of care Parents watch videos of other parents describing their decisions Pulmonologist Respiratory therapist Home health provider Primary care clinician Hospitalist Subspecialists Other parents Mapping child’s needs to family social context Facilitator Family supports (eg, extended family and respite) Health literacy and capabilities (eg, ability to learn LTV care) Conflicting obligations (eg, siblings and jobs) Community resources (eg, home nursing and medical day care) Financial considerations (eg, insurance, transportation, and housing) Psychosocial evaluation tool (eg, modified SIPAT6) Home visit Assess availability of and eligibility for home nursing Explore transportation options Social work Case management Home health provider Palliative care support Prepare family for role in serious decisions Facilitator Considering the child’s interests and quality of life Impact on the whole family Balancing benefits and burden Incorporating religious and/or spiritual values Emotional, grief support Family decision-making tool Map family values to treatment options Palliative care support Ethics consultant Chaplain SIPAT, Stanford Integrated Psychosocial Assessment for Transplantation.
↵a Individual team members will differ on the basis of local resources, and any 1 member may offer multiple areas of expertise.
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Bringing Social Context Into the Conversation About Pediatric Long-term Ventilation
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