Journal Article Ahead of print
PubMed: 41421269 DOI: 10.1016/j.pedn.2025.12.012
Pediatric nurses' perspectives on parents' quality of life in tertiary care for children with disabilities: A qualitative descriptive study.
J Pediatr Nurs 86:633-645
Authors: Osama Mohamed Elsayed Ramadan, Elham Aldousari, Nadia Bassuoni Elsharkawy, Maha Suwailem S Alshammari, Enas Mahrous Abdelaziz, Nermen Abdelftah Mohamed
Affiliations
- Department of Maternal and Child Health Nursing, College of Nursing, Jouf University, Sakaka 72388, Saudi Arabia.
- College of Allied Health Sciences, Kuwait University, Kuwait City 90805, Kuwait.
- Department of Maternal and Child Health Nursing, College of Nursing, Jouf University, Sakaka 72388, Saudi Arabia.
- Department of Medical-Surgical Nursing, College of Nursing, Jouf University, Sakaka 72388, Saudi Arabia.
- Department of Psychiatric Mental Health Nursing, College of Nursing, Jouf University, Sakaka 72388, Saudi Arabia.
- Adult Nursing Department, Faculty of Nursing, Kafrelsheikh University, Kafr El-Shaikh, Egypt; Department of Medical Surgical Nursing, College of Nursing, Prince Sattam Bin Abdulaziz University, Al-Kharj 16277, Saudi Arabia.
Abstract
BACKGROUND
Parents of children with disabilities receiving tertiary care face cumulative demands that threaten their well-being, and pediatric nurses, positioned at the family-hospital interface, witness how organizational routines shape parents' quality of life (QoL).
PURPOSE
To explore pediatric nurses' perspectives on parental QoL and identify modifiable institutional factors.
METHODS
A qualitative descriptive study using reflexive thematic analysis, informed by Family Systems Theory as a sensitizing lens, was conducted with semi-structured interviews of 24 pediatric nurses from four tertiary hospitals in Kafr Elsheikh, Egypt. Rigor was supported through multi-site sampling, an audit trail, and reflexive and collaborative checks.
RESULTS
Four themes characterized nurses' observations of parental QoL: (1) compounding care demands; (2) contracting social worlds; (3) adaptive resilience patterns; and (4) the healthcare system as contextual influence. Parents were portrayed as living with overlapping physical, emotional, financial, and social strain, yet developing advocacy, recalibrated expectations, and meaning-making within hospital ecologies that either buffered or intensified burden. Nurses highlighted modifiable levers, including plain-language family updates, nurse-led coordination with shared care plans, family-supportive spaces, and structured referral to psychosocial and financial supports.
CONCLUSIONS
Parental QoL in tertiary pediatric disability care reflects the interplay of cumulative demands, social contraction, and adaptive strengths within organizational contexts. The nursing-witness lens reveals system-level targets to reduce avoidable burden and sustain family resilience.
IMPLICATIONS TO PRACTICE
Pediatric nurses and nurse leaders can provide regular plain-language updates, lead coordinated care with shared plans, and routinely assess psychosocial and financial stressors and refer families to appropriate support within family-supportive environments.
MeSH
Nurses, Quality Of Life, Language, Nurses, Pediatric, Pediatric Nursing, Tertiary Healthcare, Disabled Children, Child