Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant

Abstract

Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Quality predictors of parental satisfaction after birth of infants with life‐limiting conditions

“…Parents in this study reported value in the receipt of compassionate care from their healthcare team. Consistent with other research addressing parental desires for care of their children at the EOL, we found that responses attest to the need for compassion, empathy and understanding . The data from the current study provide quantitative evidence regarding importance of compassion as a quality indicator.…”

“…However, like palliative care for any population, it is subject to inquiry by practitioners, administrators, policymakers and funders to determine whether it is meeting needs adequately . While efforts have been made to study quality care in the paediatric intensive care unit and for children at home, only one published report addresses perinatal palliative care quality from the parents' perspective, specifically surrounding perinatal counselling around extreme prematurity . The present study reports the first such endeavour to investigate parental ascertainment of quality indicators during a time in a family's life where perinatal palliative care can, and should, be given.…”

Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach

“…Despite the American Academy of Pediatrics’ recommendations, along with patient desires for SDM [14, 16–18], the current model of periviable decision-making is not shared, well-informed, or patient-centered [19–23]. In previous work, we found that physicians are not skilled at eliciting values and preferences, or in helping parents to clarify their priorities in the course of periviable counseling.…”

Ethical, Legal, and Religious Aspects at the Border of Viability

“…Parental counseling needs to understand and respect the parental perspective, uses a simple and comprehensible language and needs to honor the parental perspectives on medical care. It is important to take into account parental expectations to counseling, which should take place as soon as possible, as well as to address all aspects relevant for their child including visual and written unbiased information and contact data of patient support organizations (42–45). In the decision process, the estimate of the nursing team is at least as relevant as that of the physician.…”