The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life.
J Pediatr Nurs
; 72: e166-e173, 2023.
Article
en En
| MEDLINE
| ID: mdl-37355461
ABSTRACT
PURPOSE:
Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief. We aimed to compare parent-perceived child suffering between diagnostic groups and identify related factors. DESIGN ANDMETHODS:
We combined databases from 3 surveys of parents whose children who died following cancer, a complex chronic condition (CCC), or advanced heart disease. We built multivariable logistic regression models to identify relationships between parent-perceived child suffering and parent/child, illness experience, and care-related factors.RESULTS:
Among 277 parents, 41% rated their child's suffering as moderate or high. Fifty-seven percent of parents whose child died from cancer reported that their child suffered "a lot" or "a great deal" at EOL, compared to 33% whose child died from a CCC, and 17% whose child died from heart disease (P < 0.001). Preparation for EOL symptoms was associated with decreased parent-perceived child suffering in multivariable modeling, with parents who were prepared for EOL 68% less likely to rate their child's suffering as high compared to those who felt unprepared (AOR 0.32, CI [0.13-0.77], P = 0.013).CONCLUSIONS:
Preparing families for their child's EOL may help mitigate lingering perceptions of suffering. Operationalizing preparation is crucial to optimizing family support during EOL care. IMPLICATIONS TO PRACTICE Preparation for symptoms, and access to resources, including medical/psychosocial interventions and staff, may help ease parental perception of EOL suffering. Clinicians should prioritize preparing families for what to expect during a child's dying process.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Contexto en salud:
2_ODS3
/
6_ODS3_enfermedades_notrasmisibles
/
7_ODS3_muertes_prevenibles_nacidos_ninos
Problema de salud:
2_muertes_prevenibles
/
6_cardiovascular_diseases
/
7_non_communicable_diseases
Asunto principal:
Cardiopatías
/
Neoplasias
Tipo de estudio:
Prognostic_studies
Límite:
Child
/
Humans
Idioma:
En
Revista:
J Pediatr Nurs
Asunto de la revista:
ENFERMAGEM
/
PEDIATRIA
Año:
2023
Tipo del documento:
Article