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Published on: September 20, 2019
Quality of life in parents of preterm infants in a randomized nutritional intervention trial
Trond Nordheim1,2, Tone Rustøen3,4, Per O Iversen5,6
1Department of Pediatric and Adolescent Medicine, Akershus University Hospital, Nordbyhagen, Norway.
Insights
Participation in a randomized controlled trial (RCT) for very-low birth weight (VLBW) infants may improve parental quality of life (QoL). Parents in the RCT reported better QoL, less sleep disturbance, and more energy long-term.
Area of Science:
- Neonatal care and developmental pediatrics
- Parental well-being and quality of life studies
- Clinical trial research methodologies
Background:
- Caring for very-low birth weight (VLBW) infants presents significant challenges due to potential complications, often exacerbated by nutritional issues.
- The impact of VLBW infant participation in randomized intervention trials (RCTs) on parental burden and well-being remains largely unexplored.
Purpose of the Study:
- To investigate the effects of VLBW infant participation in a nutrition RCT on parental quality of life (QoL) and overall well-being.
- To compare the QoL and well-being of parents whose VLBW infants were in a nutrition RCT versus those whose infants were not.
Main Methods:
- A comparative study design involving parents of VLBW infants in a nutrition RCT (n=31) and a reference group of non-participating VLBW infants (n=31).
- Assessments conducted during neonatal intensive care unit (NICU) hospitalization (T1) and at 3.5 years post-discharge (T2).
- Utilized validated questionnaires: Quality of Life Scale, Hospital Anxiety and Depression Scale, Lee Fatigue Scale (LFS), and General Sleeping Disturbance Scale (GSDS).
Main Results:
- At T1 (NICU stay), parents in the RCT group reported significantly better QoL (p=0.02).
- At T2 (3.5 years), RCT parents experienced fewer sleep disturbances (GSDS, p=0.03) and reported increased energy levels (LFS, p=0.03).
Conclusions:
- Participation in nutrition RCTs for VLBW infants may positively influence parental QoL and long-term well-being, including reduced sleep problems and increased energy.
- High prevalence of anxiety and depression symptoms among parents of VLBW infants necessitates integrated psychosocial support within NICU care.
- The findings underscore the importance of considering parental well-being in the context of neonatal clinical trials and NICU care.
Background:
Being a parent of a very-low birth weight (VLBW, birth weight <1,500 g) infant is challenging because of the numerous complications these infants may encounter, many of which are caused by inadequate nutrition. Whether the burden to the parents increases when their VLBW infant participates in a randomized intervention trial (RCT) and is thus exposed to additional risk is unknown.
Objective:
To examine parental qualify of life (QoL) and well-being after participation of their VLBW infants in a nutrition RCT.
Design:
QoL and symptoms associated with well-being of parents of VLBW infants participating in a nutrition RCT (n=31) and of a reference group (parents of nonparticipating VBLW infants, n=31) were examined. Assessments were performed when their infants were in the neonatal intensive care unit (NICU) (time point T1) and concurrently at 3.5 years of age (time point T2). The parents completed the following questionnaires: Quality of Life Scale, Hospital Anxiety and Depression Scale, Lee Fatigue Scale (LFS), and General Sleeping Disturbance Scale (GSDS).
Results:
At T1, the QoL was better among RCT parents (p=0.02). At T2, the RCT parents reported less sleep disturbance symptoms (GSDS) (p=0.03) and more energy (LFS) (p=0.03).
Conclusion:
The RCT participation of VLBW infants may have improved parental QoL. While in the neonatal unit, symptoms of anxiety and depression were common among all parents. The high incidence of anxiety and depression in parents must be considered in the care of parents in the NICU. Long-term effects of participation seem to be less sleep problems and more energy.
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