Article Text
Abstract
Background: Psychological stress of parents of preterm infants is aggravated by prolonged hospitalisation. Early discharge programmes (EDPs) have been implemented to alleviate this situation.
Objective: To evaluate parental psychological stress in an EDP for the first 3 months after neonatal intensive care unit (NICU) discharge.
Design/methods: Prospective randomised trial comparing parents of preterm infants assigned to EDP (n = 72) or standard discharge programme (SDP) (standard discharge) (n = 68). At discharge, parents were evaluated using the Hospital Anxiety and Depression Scale (HAD), and the Likert Scale for well-being every 10 days for 3 months. Parental narrative of Worrying and Helping issues was assessed using a semi-structured interview.
Results: Length of stay was greater in the SDP group (p<0.01). HAD showed no differences in anxiety, but SDP mothers scored higher in depression (p<0.05). Altogether, parents reported a worrisome emotional condition (EDP 87.2%; SDP 80%), which decreased at the end of the study (EDP 45.2%; SDP 34.5%). Their baby’s physical well-being was the most relevant issue in the narrative for Worrying and Helping issues at discharge (EDP 69.2%; SDP 67.5%); however, it decreased at the end of the study (EDP 22.6%; SDP 24.1%). At discharge, the paediatrician’s support was more for the SDP group. No differences on the Well-Being Scale were found, but the EDP group always scored better.
Conclusions: Vulnerability of parents enrolled in an EDP did not increase after hospital discharge. Physical well-being of the baby was the most important issue for both groups. EDP parents requested less paediatric support and scored higher in the Well-being verbatim.
Trial registration number: Registered at the Clinical Trial Government Protocol Registration System no NCT00569608.
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Over the past two decades the rate of survival of extremely premature infants has substantially increased in industrialised countries.1
Socioeconomic improvement, generalised obstetrical care, and advances in neonatal care, including regionalisation of neonatal intensive care, have drastically contributed to reducing neonatal mortality.1–4 Concomitantly, the rate of prematurity has increased due to socio-medical factors, such as women working outside the home, a delay in the first pregnancy, a more widespread use of assisted reproductive techniques, and an increased number of uncontrolled pregnancies, especially among the immigrant population. However, survival of extremely premature infants is inevitably associated with prolonging hospitalisation. As a consequence, neonates are separated from their families for long periods of time and immersed in an environment prone to causing medical and psychosocial problems.5 6 Hence, babies admitted to the neonatal intensive care unit (NICU) will commonly experience difficulties in establishing an adequate bonding with their parents.7 Parents have to acquaint themselves with the “technological atmosphere” of the NICU, and adapt to the emotional and physical separation from their child.8 9 Early discharge programmes (EDPs) aimed at reducing hospitalisation substantially are meant to diminish parental emotional stress,10–14 in addition to reducing costs.15
Parental stress associated with admission to the NICU of a preterm infant has been extensively studied.16 However, very little information regarding the psychological impact of EDP upon parental stress is available.12 13 17 18
The primary objective of our study was to determine the degree of psychological stress associated with EDP from the NICU as compared with the standard discharge programme (SDP). We hypothesised that parental stress associated with an EDP would be significantly higher when compared with an SDP. To test our hypothesis, we performed a prospective clinical trial assigning parents of premature infants born in our Maternity Unit randomly to either an EDP or an SDP, and compared the degree of anxiety, depression, general well-being, and buffer mechanisms used as protectors to overcome stress.
MATERIAL AND METHODS
Methods
Design
This was a prospective, randomised, clinical trial performed at a tertiary level NICU (Hospital La Fe, Valencia, Spain) including premature infants with birth weight <2000 g or <36 weeks’ gestation, admitted to the NICU between October 2005 and October 2006. The primary care paediatrician (PCP) responsible for the patients enrolled after discharge from the hospital agreed to participate in the study.
A flow diagram of the study is shown in fig 1. Randomisation was performed using computer-generated random numbers. Allocation was performed by using sealed opaque envelopes opened at the time of recruitment. This was performed when eligible infants fulfilled the inclusion criteria which were: (i) reaching a postnatal weight of ⩾1600 g; (ii) being clinically stable defined as having normal arterial oxygen saturation (SpO2), heart rate, blood pressure, stools and urine output in the week previous to discharge; absence of apnoeic episodes, full enteral feeding, no procedures or medication needing hospitalisation; and (iii) discharge planned at approximately 2 weeks. At this stage, parents were informed about the study by the study coordinator and consent was requested. Twins were always assigned to the same study group because of the characteristics of the intervention.
Exclusion criteria included: (i) severe congenital malformations; (ii) severity of clinical condition (eg, intraventricular haemorrhage grade III or IV, moderate or severe bronchopulmonary dysplasia according to the NIH consensus definition,19 severe congenital infection); (iii) parents diagnosed with a psychological condition; (iv) non-Spanish-speaking parents; (v) refusal to participate by the assigned PCP.
REFERENCES
SDP and EDP characteristics
The SDP at our NICU includes the following at discharge: clinical stability as defined above; weight >2000 g; corrected gestational age ⩾36 weeks; training of parents to fulfil their infant’s requirements adequately.
The EDP differed at discharge in weight (1600–2000 g); corrected age (⩽36 weeks); requirement of a stable social background assessed by a sociological score ⩾12 (see table 1) and programmed clinical visits with the PCP.
To evaluate psychological well-being in both groups, blinded psychologist-performed phone interviews were held every 10 days for 3 months post-discharge.
Perinatal variables and clinical follow-up
Major perinatal variables were obtained from the medical records. Socio-economic variables were obtained using a scoring system specifically designed for this study (see table 1). Clinical variables including weight, length, head circumference, and type of feeding were recorded by the PCP during the follow-up visits. When two or more of the programmed visits to the PCP were missed, the case was considered lost to follow-up and consequently excluded from the study.
Psychological assessment
Evaluation at discharge
Level of psychological adjustment and emotional well-being was evaluated using the Hospital Anxiety and Depression Scale (HAD), a self-evaluating scale used as an instrument to determine anxiety and depression in a hospital context.20 It comprises 14 items with a range from 0 to 3. Subscales of depression and anxiety are also valid measures of the severity of emotional changes. Items composing the subscale of depression are widely based on the core symptoms of the psychopathology of depression. Items composing the subscale of anxiety are based on clinical manifestations of situational anxiety. Each scale has a scoring range of 0 to 21. Scores above 10 are considered clinically significant.
Evaluation during follow-up
Follow-up was performed by a blinded psychologist using a Likert-type Well-Being Scale20 and a semi-structured interview focusing on Worrying and Helping issues. Phone calls were made every 10 days (nine calls per family) for 3 months post-discharge.
A) Worrying and Helping issues
A semi-structured interview was used to assess difficulties and resources. Both aspects were evaluated using two questions: (a) what has worried or disturbed you the most in the last week? And (b) what has helped you the most or made you feel better in the last week? For each question, parents had three options to rank responses. Answers were scored according to the order of response (first, second or third place).
B) Well-Being Scale
In order to achieve a comprehensive scoring of parental emotional well-being we made a continuous register using a Likert-type scale. The scoring range for the answers was from 0 to 10 (0 was the minimum, 10 the maximum). Scoring was performed using the following question: taking into consideration what has worried and helped you in the last days, how would you score your feeling of well-being in the last days on a scale from 0 to 10?
Statistical analysis
This study is part of a more comprehensive EDP including 3 months’ follow-up post-discharge by PCP. The study size was originally calculated considering approximately 25% lost to follow-up of initially enrolled patients. The power analysis indicated that 70 preterm infants were needed in the intervention and control groups, respectively, to achieve a reduction of 10% in the psychological variables studied with a level of significance α of 0.05.
Subjects were analysed in the study group to which they were originally assigned (intention-to-treat analysis) Descriptive statistics were calculated for all the variables determining the characteristics of the sample. We checked for normal distribution and ensured an adequate variability. In addition, univariate analyses were performed using student’s t test for variables with normal distribution and non-parametric tests (Mann–Whitney U test) for variables with a non-normal distribution. An analysis of variance was performed for variables having more than two possible values. Calculations were made using SPSS 13.0 software.
RESULTS
Population
The EDP differed at discharge in weight (1600–2000 g); corrected age (⩽36 weeks); requirement of a stable social background assessed by a sociological score ⩾12 (see table 1) and programmed clinical visits to the PCP.
Figure 2 depicts the number of eligible, disregarded and included infants who completed the study. Thus, from a total of 199 eligible infants, 171 patients were randomised. However, 59 were excluded, so 140 completed the study. Twenty-eight infants were excluded because they were not randomised or incorrectly randomised. After randomisation was completed, two infants (EDP group) were lost because they were transferred to another hospital, and 13 infants (EDP group: 8; SDP group: 5) were disregarded because their parents refused to continue participating in the trial. In addition, 16 infants did not complete the follow-up and were, therefore, excluded. From the 140 babies who completed the study, 72 were assigned to the EDP group and 68 to the SDP group.
No significant differences regarding major clinical characteristics were found between neonates in the control (SDP) and experimental group (EDP) as shown in table 2, nor in their parents’ characteristics (table 3). However, table 2 shows there were significant differences at discharge regarding length of hospital stay, weight, and length and head circumference.
Parents’ vulnerability at discharge
Comparison of anxiety and depression between both groups of parents at discharge using the HAD is shown in fig 3 (A and B). No differences regarding anxiety were found between mothers and fathers in either group. No differences in depression between fathers in either group were found. However, mothers in the SDP group were significantly more depressed than mothers in the EDP group (p<0.05).
Emotional well-being during follow-up
Figure 4 shows the results of the Likert-type scale performed every 10 days for 3 months post-discharge from hospital. Although there are no significant differences between parents of the EDP and SDP groups, the former group consistently obtained better scores throughout the study.
Worrying in parents
Figure 5A shows the results of the narrative of parental worrying for premature infants throughout the 3-month follow-up. As depicted in fig 5A, immediately after hospital discharge the majority of parents expressed concern. Thus, 87.2% in the EDP group and 80% in the SDP group reported a worrisome emotional condition. However, in the following weeks, the percentage of parents expressing a perception of being worried decreased significantly in both groups. Moreover, at the end of the 3-month follow-up, 45.2% of parents in the EDP group and 34.5% in the SDP group expressed their emotional situation as worrisome. Figure 5A shows that there were no differences between the two groups at any point during the study.
When answers for parental concern were specifically analysed, physical well-being of their children was the most frequent response immediately after discharge (EDP group: 69.2%; SDP group: 67.5%). However, this item rendered less significant and towards the end of the study it was substantially reduced (EDP group: 22.6%; SDP group: 24.1%). Another relevant worrying issue immediately after discharge was achieving coordination of the tasks between the couple (EDP group: 15.3%; SDP group: 22.5%). However, at the end of the study only 3% of parents in both groups expressed worry in relation to this item. This result reflects achievement of good coordination of tasks between the couple, which helped to cope with the new situation. Other answers, such as difficulties in maintaining their social life, fear of re-hospitalisation, jealousy of other siblings, children’s character etc., never represented a significant percentage of responses in the interviews throughout the study and tended to disappear.
Helping issues in parents
Undoubtedly, physical well-being of their children was perceived as the most important item, helping parents overcome the stressful situation after hospital discharge. This item scored 90% in both groups, but it lost relevance during follow-up and by the end of the study, it represented 48.4% in the EDP and 60% in the SDP.
Support of the PCP was an important helping issue for 53.8% of parents in the EDP and for 42.5% in the SDP at discharge from the NICU. At the end of the follow-up, 33.3% in the EDP group and 35.5% in the SDP group still considered it a relevant helping issue. In addition, perception of an adequate psychomotor development of the baby, although not perceived as relevant immediately post-discharge, acquired more importance during the follow-up, and at 3 months after discharge, 64.5% in the EDP group and 63.3% in the SDP group scored this item as highly relevant (see fig 5B).
Other factors like coordination of tasks between the couple, leisure activities, relationship among siblings, etc, never scored highly enough to be considered relevant.
DISCUSSION
Psychological stress in parents of extremely premature infants due to prolonged hospitalisation has been studied using different perspectives.9 10 16 21 22 Separation of a newly born infant from its mother is considered the most stressful and negative experience for both mother and child. Moreover, the quality of mother–infant relationship during the first days of life has been reported as one of the most relevant factors capable of exacerbating or softening the adverse impact of preterm birth, particularly in relation to subsequent competencies and development.23 However, early discharge may be associated with medical risks (eg, nutrition, haematology, infections), familial psychological stress (eg, anxiety, overprotection, fear) and/or overuse of medical facilities (eg, visits to the paediatrician, visits to emergency wards, re-hospitalisation). In order to avoid these negative consequences, hospital discharge of premature infants needs to be planned in advance following ad hoc established checklists and guidelines.24–26
On the other hand, although many studies have analysed the medical and economical impact of early discharge programmes1 14 15 27–29 few have acknowledged the influence of EDP on normalising preterm infants’ environment and thus contributing to provide the social support that may effectively buffer family distress.12 13 17 30
What is already known on this topic
Prolonged hospitalisation of premature babies causes significant parental stress in the form of anxiety and depression.
In addition, preterm babies experience difficulties in establishing an adequate bonding with their parents.
What this study adds
The early discharge programme, which included interaction with parents and backup with the primary care paediatrician, substantially shortened the length of hospitalisation and did not increase utilisation of public health resources.
In addition, it improved early parental-preterm interaction, thus helping to normalise effective parenthood earlier.
We hypothesised that an EDP, which transferred responsibility from professional caregivers to parents when their baby was still relatively immature, could increase parental psychological distress. Thus, it would be after hospital discharge when parental psychological vulnerability would emerge. However, our results show that levels of anxiety in parents of EDPs are not significantly different from SDPs.13 In Open Neonatal Units, where parents have free access to their babies 24 h a day, and where training in basic skills and in fulfilment of special needs required by hospitalised neonates is promoted, post-discharge adaptation should seemingly be easier.29 In our study, although parents in the standard discharge group were allowed to enter the NICU freely, they tended to rely more on the caregivers, while parents in the early discharge group were more willing to take over the responsibility of parenthood. Allen et al found that maternal anxiety, together with an increased parental perception of child vulnerability, were the most significant variables influencing an infant’s subsequent competencies and development.30 However, our results show that early discharge did not increase the level of anxiety in mothers or fathers.12 13 Thus, although early discharge was seemingly an additional stressor for parents, we found no significant differences in the level of anxiety with the standard discharge group, which reveals a successful adaptation. Hence, EDP facilitated prompter normalisation of family life. In studies that have compared early versus standard discharge it has been found that maternal anxiety is increased in mothers randomised to the standard group.17 In our study, we found greater depression in mothers of the SDP than in the EDP. It is possible that having been pronounced as efficient caregivers increased self-assurance and satisfaction in mothers of the EDP group.17 This finding is relevant because previous studies on very low birth weight infants have described a significant relationship between the severity of maternal depression and children’s mental outcome,22 and altered methods of family coping.31 32 Preterm-birth-derived depression may be the result of a lack of interaction between parents and their baby since they are excluded from its care while in the NICU.33 Therefore, our EDP, promoting an early transfer of responsibility to parents, may have minimised hospitalisation-derived depression. Future studies comparing different strategies related to the different roles of parents in the NICU (family coping) will help us to identify the main factors influencing the parental adaptation process.
After hospital discharge, parents in both groups expressed their concern about their infant’s care. However, serial interviews in the following weeks revealed that the percentage of parents expressing a perception of worry decreased significantly and no differences between the two groups were found. Taking into consideration that babies in the early discharge group were smaller and younger at discharge, their perception of normal family life was achieved at an earlier post-conceptional age. Consequently, although the Well-Being Scale showed no significant differences between the two groups, parents in the EDP always scored better34; this could translate to a greater confidence in their efficacy as caregivers. However, a possible limitation in the follow-up was reliance on parental perception of the impact of the experience instead of having used objective tools for the evaluation of parental stress. Notwithstanding, previous studies have shown that subjective reports on well-being are a valuable tool for measuring life satisfaction.21
In our study, after hospital discharge, family life and worries were focused on the baby’s physical well-being in both groups as expressed in the verbatim narrative for parental worrying issues.34 Our findings are in accordance with the EPIPAGE study, which aimed at assessing parents’ psychological health 2 months after discharge of very preterm infants.34 These researchers used a semi-structured interview to unravel role factors in each of the parents. They too found feelings of anxiety and depression in mothers. However, fathers seemed more able to cope and overcome the traumatic event of prematurity.34 Another key helping issue that contributed to overcoming parental distress was their perception of an improvement in their babies’ neurodevelopment. Therefore, physical well-being and adequate neurodevelopment seem to be the most important factors that contribute to overcoming parental stress after hospital discharge.
Support given by the primary care paediatrician was also a relevant helping issue. Our National Health System provides universal free healthcare. Therefore, all babies included in the study had the possibility of free access to paediatric care. During follow-up, 10.3% of babies from the SDP as compared with 4.2% in the EDP were readmitted to hospital as an emergency. Seemingly, the closer follow-up programme established by the primary care paediatricians for patients in the EDP contributed to reducing the need for re-hospitalisation.
In order to reduce parental stress, a future approach should include psychological intervention. It has been shown that maternal emotional responses deeply influence parenting of premature infants.23 Early individualised family-based intervention during hospitalisation and after discharge has proved to reduce maternal stress and depression and increase maternal self-esteem. Moreover, such intervention has improved early parental-preterm interactions and reduced the length of hospitalisation.23 30
CONCLUSIONS
Our EDP significantly reduced the length of hospitalisation of preterm babies without increasing family stress. After discharge, the most important concern of families in both the EDP and the SDP was the baby’s physical well-being and neurodevelopment. Therefore, early discharge did not modify parental worrying issues or requests for help. However, it helped to normalise parenthood earlier.
Close follow-up of premature infants performed by the PCP after an early discharge can prevent and/or detect medical problems early on in the babies as well as psychological stress in parents, which could interfere with effective parenting.
Acknowledgments
This research work was financed by a grant (AP015/06) from the Consellería de Sanitat & Bienestar Social (Generalitat Valenciana) to MV and PS. Thanks are extended to the participating families and primary care paediatricians. We would like to express our special gratitude to Professor Avroy A Fanaroff (Division of Neonatology; Rainbow Babies & Children’s Hospital; Cleveland; USA) for reviewing and editing the manuscript.
REFERENCES
Footnotes
Competing interests: None.
Ethics approval: The trial protocol was approved by both the Ethics and Research Committees of our hospital.