Exploring Parent Experiences With Early Palliative Care Practices in the NICU.
Adv Neonatal Care
; 24(2): 98-109, 2024 Apr 01.
Article
em En
| MEDLINE
| ID: mdl-38324727
ABSTRACT
BACKGROUND:
The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents and contribute to poor mental health outcomes. Early implementation of family-centered palliative care (PC) may provide support for NICU parents. Key concepts of early PC in the NICU include shared decision-making, care planning, and support for coping with distress.PURPOSE:
The purpose of this study was to explore parent experiences during their child's NICU admission with the early PC practices of shared decision-making, care planning, and coping with distress.METHODS:
Qualitative descriptive methodology was used. Strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Parents (N = 16) were interviewed, and data were analyzed by conventional content analysis. Targeted recruitment of fathers occurred to ensure they comprised 25% of sample.RESULTS:
Parents' descriptions of decision-making were contextualized in gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning, parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. Key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. IMPLICATIONS FOR PRACTICE AND RESEARCH These findings highlight key areas for practice improvement providing more support and collaboration in decision-making, true engagement of parents in care planning, and encouraging peer support and interaction in the NICU and in online communities.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Cuidados Paliativos
/
Unidades de Terapia Intensiva Neonatal
Tipo de estudo:
Prognostic_studies
/
Qualitative_research
Limite:
Child
/
Humans
/
Infant
/
Newborn
Idioma:
En
Revista:
Adv Neonatal Care
Ano de publicação:
2024
Tipo de documento:
Article