It is very clear that neonatal nurses are in a prime position to provide support to parents when they are in the NICU (Turril1999; Crathern 2009). They have a prime role in alleviating the fears of the environment and to adjust to the need of the family (Boxwell 2010). It has been observed that babies with BPD can be very irritable and demanding as they grow and they require a lot of patience from their carers. Increasing parents’ awareness about why their baby’s breathing is such hard work with BPD can benefit them when dealing with the stress involved in taking care of them (Reid 2000;Fenwick et al2001, D Crawford and Sampson 2002,Melnick et al2006). Crawford and Sampson (2002) recommended that this is essential, as a safe environment and high standard of care is important for optimum growth and development which should be the nursing priorities. They also suggest that it is not always easy to provide this optimal environment and recommended the importance of avoiding stress and hypoxia, whilst providing a satisfactory nutritional intake. This should ensure a safe discharge home, and is the ultimate answer to this dilemma (D Crawford and Sampson (2002).
Crawford and Hickson (2002) describe the extremely anxious feeling that parents experience when they first hear that their baby needs to go home with oxygen. They recommend that this is the point where it may be useful to have a well-organised support for parents. In practice when it is clear that a baby will need to go home with oxygen, the neonatologist on the NICU refers the baby to a paediatric respiratory/thoracic consultant who will follow the baby up when discharged. The consultant also works with a specialist respiratory nurse, who visits the family at home and sets up overnight saturation monitoring (Zinman et al 1992). The results from this monitoring can be downloaded to give a view of the current oxygen requirements and indicates if the amount of oxygen could be reduced. Lindsay et al (1993) studied the effects on parents of having a parent to parent support group. In the study, the authors assessed two groups of parents one who received the support from other parents and a comparison group who did not. In the treatment group, parents were introduced to a volunteer who had also had a baby in the neonatal unit. Throughout the first year of baby’s life the volunteers provided support through phone contact, hospital visits and eventual home visits. In contrast, the comparison group did not have the additional support of someone who had gone through a similar experience. The researchers found that the maternal infant relationships were improved within the treatment group compared to the comparison group.
Ahman and Lipsi (1991) state that babies born at low birth weights that go onto develop BPD contribute to the growing number of technology dependant infants. Boxwell (2000) suggests that parents need to understand the fact that their baby needs extra support when they go home. Once they have accepted this, discharge planning in full can commence. In reality, turning off the monitors is a significant stage of discharge planning. Parents may find it difficult to make their own decisions about their baby with direct professional advice as they become very dependent on equipment and staff (Redman (1993). The baby will have been monitored for some time since birth and the parents become reliant on this equipment to assess their baby’s condition. Manns (2000) suggest that, after discharge, some mothers felt isolated and unequipped for the challenges of caring for babies at home recommending that it is ideal to keep a balance between support and professional intrusion in family life following discharge. Beresford (1998) proposes that only intermittent monitoring need to take place well in advance of the baby going home. Parents can learn to be aware by looking at their baby to assess for respiratory distress or hypoxia rather than relying on the monitors (Crawford and Hickson 2002).
A study was carried out by Oehler et al (1993) which studied mothers with a baby in the neonatal unit, to determine how well the mothers respond to their baby’s needs. They found that when a mother is separated from her baby, interactional difficulties may arise in certain areas. A total of 71 mothers of very low birth weight babies originally comprised the sample. There were two methods of data collection: an interview with semi-structured questions and a symptom check list, where personal feelings are ranked due to the degree which they have been experienced. The results showed that in the second interview, mothers reported increased interaction and knowledge of their baby’s cues. They also found that some mothers were not aware of when to initiate care and needed help to respond appropriately to their baby’s cues. It also showed that mothers felt an increasing sense of anger as their baby got older which may be due to possible persistent problems which were experienced regarding their baby’s condition.
Crawford and Hickson (2002) recommend that it is important to identify the teams who will provide follow up care, support and supervision before the baby is sent home on oxygen. It has been observed that, the discharge process takes time, because all the relevant agencies need to be involved including the GP and social worker. According to the Royal College of Physicians (1992) oxygen dependent babies should be followed up in the community by properly trained professionals. In practice, the neonatal family care team follows up all babies who have been on the neonatal unit for >21 days. They are senior neonatal nurses who work in the community and the neonatal follow-up clinic.
Langley et al (1997) explored the relationship of having a community neonatal service (CNS), on the length of stay in hospital for people who are classed by the author as being ‘high risk’. It was a controlled study involving 36 neonatal units of which 18 had a CNS and 18 were without this service. The result demonstrated that in units with CNS babies were sent home at lower weights, than those units that did not had a community follow–up. Also there was no increase in the incidence of the lower weight babies being re-admitted to the hospital. In an article Manns (2000) discusses the long term effects on mothers at home with a child with broncho pulmonary dysplasia, on home oxygen. The writer is a mother of a preterm child who was discharged with home oxygen. This article was very important because the person writing it obviously had personal experience of BPD and effects on the family which highlighted a need for more research to assesses the emotions and long term effects of caring for a child with home oxygen. The article by Manns (2000) used the experiences of only 16 mothers and from the author’s own admission the group was not representative and had experienced care in different units which had different policies and procedures about discharge planning and support.
Although it is a non empirical study, work such as this is still vital to try and make improvements in the workplace. It is unclear if questions were structured or not, or what community support, if any, was offered. The results of the interviews showed that the long term effects of having a child with BPD are more profound than many people imagine. Some experienced constant feelings of guilt regarding their preterm delivery and blamed themselves for being unable to carry a baby to term. Feelings of isolation were also stated, and they felt unprepared emotionally to take their baby home from hospital. The study also highlighted that there are many areas in which can be improved in the transition from hospital to home. Ideally parents should be able to room in as long as they can, to help them to gain confidence in order to take their baby home for short periods of time, before going home for good.
In conclusion as medical treatments improve, the nursing care of these families also needs to improve. Research by Oehler et al (1993) shows more can be done to prepare parents for taking their baby home from hospital. The study by Langley et al (1997) also suggests an association between providing community services and a reduced hospital stay. The community team can provide continued support and are a point of contact if there is a non-emergency query. It has also been identified that access to a support group would be beneficial. Linsay et al (1993) supports this adding that parents who have been through similar experiences are an excellent to support the families of babies with BPD. According to Manns (2000) encouraging parents to take their baby home for the day before going home for good should also be promoted as the parents often feel unprepared to go home.
All babies admitted to the neonatal intensive care unit (NICU), who may develop broncho pulmonary dysplasia (BPD), are in need of the assessments identified, to guarantee the best possible care. Therefore the use of organised support, switching off monitors prior to discharge and having the parents stay at hospital are all useful as well as changing some aspects of the nursing routine, such as ensuring a thorough follow up, with the community neonatal care teams and providing further support - especially from those who have been through such experiences -which would greatly reinforce a safe and effective discharge. This will give efficient continuation of discharge preparation and successful changeover from hospital to home for babies with BPD and increased oxygen requirements.
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