The unique birth experience, intensive care and medical sequelae for VLBW infants create a particular circumstantial chain whereby vulnerability of the child to neglect may be increased. Although we do not at all suggest neglect as a probable outcome of VLBW, it is a possibility. Practitioners need to be aware that the child’s environment, both pre and post-discharge from hospital, affords another potential arena for neglect in the VLBW infant.
The hospital environment
It is a general expectation that patients will be well cared for within an institu-tion, such as a hospital, and will not come to any harm because of being in such a place (Bross 2001). This expectation is of course questionable. Institutional abuse and neglect is defined as:
…any system, program policy, procedure, or individual interaction with a child in placement that abuses, neglects, or is detrimental to the child’s health, safety, or emotional and physical well-being or in any way exploits or violates the child’s basic rights. (Gil 1982, p.9)
Neglect could be envisaged when policies and protocols within a hospital and in particular the neonatal and obstetric areas, do not meet the needs of the VLBW infant and the parents. This includes obtaining the resources, staff, equipment and environment to provide an adequate standard of care. For example, the neonatal intensive care area may be closed due to a lack of equip-ment or trained staff and consequently preterm, VLBW infants need to be transferred to another centre. The cost to the infant in terms of medical risk is great, further complicated by increasing separation from the parents in physical (geographical) terms, but also psychologically. Another factor, not unrelated, is the ratio of staff to infants within the neonatal unit. Iatrogenic complications become more common when staff workloads are higher, leading to a reduction of surveillance and an increased variability in nursing skills. VLBW infants exposed to this environment are at greater risk of mortality and morbidity (Callaghan et al. 2003).
Programme neglect refers to a fall in what have become acceptable stan-dards of care. In accordance with present-day stanstan-dards neonatal nurses are aware of the need to promote attachment and to incorporate parents in the decision-making process (Lawhorn 2002). Indeed recent debate in the litera-ture has begun to question who in fact owns the child in hospital (Shields et al.
2003), emphasizing the importance of communication between staff and parents.
The home environment
Once VLBW infants have reached a point where their expected birth weight is attained and they are physiologically stable, they are discharged home to parental full-time care. Yet these are still very small and very vulnerable infants.
The parents suddenly become sole providers for an infant that has experienced profound insult and interruption to normal development. The early disruptions of the biological and social aspects associated with preterm birth reduce the time parents have in their preparation for parenthood, or in making the pragmatic home preparations necessary when having a baby. The degree of perceived stress attributed to the pregnancy and the events of labour and the delivery have been found to influence emotional processing of parents. Those parents found to be preoccupied with past perceived stressful events experience greater difficulties adjusting to parenthood which affects their availability for their infant (Dulude et al. 2002). Increasing anxiety and low confidence levels in parenting ability is, quite predictably, the experience of parents when caring for their VLBW infant in the home environment.
Previous studies have demonstrated that mothers of preterm, VLBW infants experienced episodes of anxiety and depression and are predominantly socioeconomically disadvantaged, having poor quality social support networks, and are often single mothers (Dulude et al. 2002; Kramer et al. 2000;
Mackey, Williams and Tiller 2000; Steer and Flint 1999). Mental health problems experienced by the mother in the antenatal and postnatal period are recognized as having harmful effects on the attachment relationship. This makes commitment to the attachment process far more challenging and increases the risk of parents not being available for their infant (Shandor Miles et al. 1999). Indeed preterm, VLBW infants are more vulnerable to relationship disharmony, especially if the parents are experiencing some degree of psycho-logical dysfunction in the form of depression or severe anxiety – which given the circumstances would not be unusual.
The complications of VLBW not only prolong hospitalization following birth, but are instrumental in the development of chronic health problems throughout childhood. The development of chronic lung disease (CLD) and other related conditions can predispose the VLBW infant to ongoing problems.
Discharge home with supplementary oxygen therapy is sometimes an outcome.
However, infants with lung disease can endure difficulties with feeding, oesophageal reflux, poor weight gain, developmental delay and ongoing chronic lung problems (Avent, Coile and Mathai 2001; McLean et al. 2000;
Shaw 1999).
Professionals in the field often use weight gain as a marker of health and development. However, there are many intervening variables that influence the process of weight gain. Many VLBW infants are discharged home requiring a very frequent feeding regime throughout a 24-hour period. Bottle-feeding can be a slow process and for others tube-feeding is the only means of providing dietary requirements. Meeting the correct calorific and environmental needs to promote growth, especially when the infant requires supplementary oxygen, can be problematic. Other influences in the weight gain process are the charac-teristics and skills of the parents. Much depends on their availability, sensitivity, commitment and understanding of the technicalities involved in their infant’s care. Caring for a baby with the degree of special needs that are common with VLBW can be physically and emotionally draining. On top of the practical and physical problems are the difficulties relating to infant temperament. More often than not they are fussy infants, taking longer to settle, and they appear to be more emotionally demanding. While these infants do require the necessary stimulation for development they have more limited boundaries for interaction, becoming over-aroused more easily. This picture identifies a number of threads that create an environment leading to a greater vulnerability to neglect.
Attachment
The circumstances relating to conception and the early birth of an infant can also influence the attachment process. In the 1980s parental experiences of attachment with preterm infants were found to be problematic. However, these difficulties were time limited and the majority went on to develop secure
rela-tionships (Goldberg 1988; Goldberg et al. 1986). This knowledge is comfort-ing. However, the boundaries of viability have moved beyond those perceived appropriate in the early 1980s. Survival of infants born as early as 23 weeks gestation, weighing less than 1000 grams, is more common but they are cared for in a highly technical environment where their physiological condition is monitored continuously. This requires a clinically skilful approach to care with minimal interference. The physiological needs of the infant at this time are par-amount, with the psychological needs of the parents falling into second place.
Further, these are parents who are not only unable to fulfil any of the normal parenting roles, they are very often unable to hold or at times even touch their infant. Visual closeness too can be partially obscured by necessary equipment, while at the same time this closeness can be influenced by the infant’s appearance, behaviour and disease experiences (Brunssen and Miles 1996). Anxiety relating to the possible loss of their infant is gradually replaced by concerns about the long-term future. Some mothers have reported that feelings of anticipating the loss of their baby has influenced their ability to become psychologically close, therefore placing the attachment process on hold (Feldman et al. 1999; McHaffie 1990). This acute stressful experience becomes more chronic as the infant experiences more crisis situations through illness events. The burden for parents can be immense as they attempt to meet other family responsibilities while at the same time visit their hospitalized infant. In some circumstances, visiting patterns change and become more infre-quent reducing further physical contact and interaction. These circumstances have been recognized for many years as influencing negatively the attachment relationship between a mother and her infant (Sandford Zeskind and Iacino 1984) and in some cases this has contributed to later abuse and neglect (Fanaroff, Kennell and Klaus 1972).
Messages from research
· Very low birth weight infants born at the early extremes of viability are generally more at risk of death or disability.
· There is an association between neglect and children with disabilities. A substantial number of very low birth weight infants experience some residual disability.
· The extreme and very preterm infant is at increased risk of developing some degree of cognitive developmental delay.
· Very low birth weight infants and their parents more commonly experience greater periods of physical and psychological separation immediately following birth and for some time after.
· Parents take longer to get to know their infants, with a potential impact, therefore, on the attachment process.
· Parents of VLBW infants may find them difficult or unattractive.
· Institutional arrangements can in themselves be considered
neglectful, reducing infant and parental proximity and affecting the attachment process.
· Very low birth weight infants require more frequent feeding than term infants when discharged home. They may also have special needs in relation to the process of feeding or oxygen therapy.
· There is an association between cognitive developmental delay and neglect in extremely low birth weight infants whose parents are socioeconomically disadvantaged.
· The vulnerability factors associated with preterm labour are closely matched to the factors associated with children being referred for neglect.