A Qualitative Study of the Experiences of Norwegian Parents of Very Low Birthweight Infants Enrolled in a Randomized Nutritional Trial.

PURPOSE: The aim of this study was to examine how parents of very low birth weight (VLBW) infants experienced having their newborn infant enrolled in a randomized controlled intervention trial (RCT). DESIGN AND METHODS: A qualitative descriptive design was used. Data were collected through individual semi-structured interviews with 15 parents of 9 participating VLBW infants. The data were then made the object of an inductive qualitative content analysis. RESULTS: The parents expressed trust in the competence and motivation of the researchers and were confident that participating in the project would do no harm, but instead would potentially benefit their infant. The parents felt privileged for being given the chance to participate, to commit to the project; they were willing to invest their time and effort in the project. Participation could be stressful for the parents, ranging from minor irritation to situations in which they felt overwhelmed and not entirely in control. Many families lived stressful lives, and participation, particularly the follow-up after being discharged, may have added to this. CONCLUSIONS: Infant participation in an RCT can be a positive experience, making the parents feel that they are given a chance to both contribute and receive something special. Participation can also be stressful because of conditions both related and unrelated to the RCT. PRACTICE IMPLICATIONS: We identified several issues that researchers in future trials with VLBW infants need to address to minimize parental stress. Recruitment to intervention studies within the immediate period around birth should be avoided, if possible.

Hope in Parents of Very-Low Birth Weight Infants and its Association with Parenting Stress and Quality of Life.

PURPOSE: Being a parent of a very-low-birth-weight (VLBW) infant can be stressful. We aimed to describe parental hope 42months after the birth of a VLBW infant and determine whether there is an association between hope and parenting stress with quality of life (QoL), respectively. DESIGN AND METHODS: Fifty-nine parents of VLBW infants completed questionnaires about hope, parenting stress and QoL. Pearson correlation coefficients (r) and linear regression models were used to examine the relationship between the selected variables. To compare groups, t-test was used and Cohen's d for effect size was calculated. RESULTS: Parents of VLBW infants were more hopeful than the general population (p<0.001). Parenting stress and hope were both independently associated with QoL (p<0.001). The subgroup of parents of infants with birth weight <1000g had less hope (p=0.041) and higher parenting stress (p=0.041) than parents of infants with birth weight 1000-1500g. CONCLUSIONS: Hope and parenting stress were both independent determinants of QoL. Parents of the presumably sickest infants had less hope and higher parenting stress than parents of VLBW infants with a birth weight over 1000g. Hope should be further explored as a coping mechanism in parents of VLBW infants. PRACTICE IMPLICATIONS: The clinical implications of the strong association between hope, parenting stress and QoL remain to be determined, but reducing stress and strengthening hope seem to be important. This should be taken into account both at hospital discharge and at follow-up, especially for lower-birth-weight infants.

Quality of life in parents of preterm infants in a randomized nutritional intervention trial.

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.

Improved Visual Perception in Very Low Birth Weight Infants on Enhanced Nutrient Supply.

BACKGROUND: Optimal nutrient supply to very low birth weight (VLBW: BW <1,500 g) infants is important for growth and neurodevelopment. Growth restriction is common among these infants and may be associated with neurocognitive impairments. OBJECTIVES: To compare an enhanced nutrient supply to a routine supply given to VLBW infants and to evaluate the effects on visual perception of global form and motion measured by visual event-related potentials (VERP). METHODS: A total of 50 VLBW infants were randomized to an intervention group that received an increased supply of energy, protein, fat, essential fatty acids, and vitamin A or a control group that received standard nutritional care. At 5 months' corrected age the infants were examined using VERP to investigate the responses to global form and motion. VERP were analysed at the first (f1) and third (f3) harmonics of the stimulus frequency. RESULTS: Data from 31 subjects were eligible for analysis. The motion VERP responses for the f1 and f3 components were stronger in the area near the posterior midline region in the intervention group compared to the controls in the group analyses (p = 0.02 and p = 0.001, respectively). CONCLUSION: The results showed a more consistent response to global motion among infants receiving enhanced nutrition. The intervention may have improved visual perception of global motion.