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Decisions for long-term ventilation for children: perspectives of family members.

RATIONALE
The decision of whether to initiate or forgo long-term ventilation for children can be difficult and impactful. However, little has been published on the information and decisional needs of families facing this decision.


OBJECTIVES
To assess what families with children with chronic respiratory failure and life-limiting conditions need and want for informed decision-making.


METHODS
English- and Spanish-speaking parents who were facing (contemporaneous decision-makers) or previously faced (former decision-makers) a decision regarding invasive or noninvasive long-term ventilation for their child were recruited using convenience sampling. Patients who were older and cognitively-capable also were invited to participate. We performed semi-structured interviews using an open-ended interview guide developed de novo to assess parents' decisional needs and experiences. Qualitative data analysis used a thematic approach based on framework analysis, and thematic saturation was a goal.


RESULTS
A sample of 44 parents and 2 patients from 43 families was interviewed. All contemporaneous decision-makers (n=28) favored or felt that they would choose long-term ventilation. Fifteen of 16 former decision-makers chose long-term ventilation. Thematic saturation was achieved from the perspective of parents who favored or chose long-term ventilation. Four domains were identified: parents' emotional and psychological experience with decision-making, parents' informational needs, parents' communication and decision-support needs, and parents' views on the option not to initiate long-term ventilation. For most parents, making a decision regarding long-term ventilation was stressful, even though they articulated goals and values that could/did guide their decision-making. In general, parents wanted comprehensive information, including what life would be like at home for the child and the family. They wanted their medical providers to be honest, tactful, patient, and supportive. Parents reported that they felt being presented with the option to not initiate was acceptable.


CONCLUSIONS
In this study, we identified specific informational and decision-making needs regarding long-term ventilation that parents facing decisions feel important. These data suggest that providers should present families with comprehensive, balanced information on the impact of long-term ventilation and, when the child has a profoundly serious and life-limiting condition, explore the option not to initiate long-term ventilation.