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Continuity of psychological care from neonatal unit to home.
From Christina del Priore (CP), Consultant clinical psychologist, Yorkhill NHS Trust, Glasgow.
Central to successful support lies skill in communication and interpersonal dialogue. Reciprocity of intent between recipient and supplier of service, sharing of responsiveness and awareness of mutual aims are keys to effectiveness. Support for mothers around pregnancy, birth and infant care is particularly sensitive, and especially so for mothers who have undergone the challenge of abnormality; it should have a well defined aim, should audit outcome and provide training opportunity. The traumatic experience of disorder during pregnancy, of extremely premature birth and of neonatal illness challenge the integrity of the first interactive dialogue between mother and infant; without sensitive awareness of the content of interactive dialogue and how it works its key issues may be missed and negative effects produced.
In the 1980s neonatologists began referring parents to me, some with traumatic reproductive histories or whose newborn babies were very ill or had died, hoping for the relief of very distressed parents and staff. I soon became aware of mothers with PTSD who were naturally distracted from their own problems by the parlous state of their babies, whom I saw as hostages. The hostage takers were death and disability, the intensive care unit staff were the SAS team, and the parents were the helpless relatives. Bereaved mothers, the infertile, and women who had experienced serial bereavement by miscarriage, stillbirth, and neonatal death came my way also when their newborns, their last chances, had arrived prematurely.
NHS funding was found for a clinical psychology service for these distressed people, many from a deprived Glasgow background. Its aims are to tackle the likely risks as well as the apparent needs of mothers and so of their children, with the object of preventing entrenched problems.
Trauma due to unusual circumstances at the time of conception, pregnancy or birth can disturb communication and belief in the real assignment of a baby to its origin, and so adversely affect mother-baby attachment and parenting; infant research provides valuable pointers to a motherís problems. A mother so damaged, as may also happen during a time-sensitive window after birth, may be unable to soothe her baby, and thereby herself remains unsoothed. This also happens when an infant is removed from its mother by prematurity or illness and so may be inaccessible to her touch. What are the altered states in a mother in this situation? How long do they last? Can anything be done for her?
Consider the harm done to a motherís integrity, identity and selfhood when her initial confidence during the transition to parenting is challenged by a premature birth. The process is particular to each birth, however many a woman may have. Meanings, coming from the human need to communicate interests, purpose, and feelings, are shared; infant communication may be regarded as the model for all emotion, language, and society. Without communication there is no attachment, and communication may be healthy or disordered. I believe that a mother is in particular need of shared meanings when rendered helpless, passive, and anxious and in communication shut-down with her infant.
The interactions of others with a mother, verbal and non-verbal, give her information about herself, and this places upon us the responsibility to be aware of how and what a service communicates; this must be sensitive dialogue, conveying to the mother that she has been heard, that meanings are being shared and feelings reflected. This helps her to understand that these skills are possible for her, and to understand the fragility of the communication available to a newborn, especially a premature baby. We must maintain and boost her capacities as she waits for her infant to mature and become available for her. Our skills, which will be our gift to her, need to include tone of voice, touch, visual expression, turn taking, movement, eye contact, silence, empathy and timing.
A service which continues into the home does so over lengthy sensitive times during the many months when these babies are in hospital. We must avoid damaging the mother-child relationship, consolidating her sense of positive status in her own domain. The challenge of the mother with personality or social disorder or aggressive behaviour must be met with even better communication.
The assessment of attachment is important, not only by a motherís self report but by observing whether she has the necessary skills listed above, so that we can direct our interventions to remedy any important deficiencies. Research suggests that prolonged and frequent closeness between mother and infant is important; touching and holding, not waiting for the baby to demand it but not being intrusive. She should be helped to have calm, positive response, engaging in enjoyable play and the good interaction elicited by her communicative skills; the service needs to provide calm nurturing models and to help her to claim the infant as hers, commonly a difficulty for these women.
A mother feels soothed when her baby is peaceful, and her need for this state remains unresolved when she is separated from him by circumstances. Negative feelings about oneself are harmful to parenting; such feelings are common where women have had damaging childhoods, and they are particularly vulnerable in the stressful circumstances we are discussing. Mothers benefit in their mothering skills from having been adequately mothered themselves in childhood. A mother's historical and current experience has a significant influence on her behaviour and feeling state and hence on her infant. She is not encouraged to express distress, and she is under pressure to be practical, even to the point of calming others. To know the difference between oneís own identity and that of the baby, having to live with an extension of oneself, is very complex for a mother, so that when her baby survives prematurity or neonatal illness she has difficulty believing that he will continue to survive. She blames her fate and herself. How can she feel whole and proud? It is for us to soothe her, knowing that this helps her to soothe; we must observe, think, report back and discuss; provide healing environments, model coping, and so restore a sense of worth and of competence, and produce a sense of joy and fulfilment in empowered parents. Thus the service will not, as sometimes in neonatal units, come between them and the baby, but will be seen by them as healing and welcoming.
Fathers, however good in their role when all goes well, may have great difficulty in coping with prematurity and illness in their babies, fighting with suppressed rage which may be expressed against staff. Their physical, macho characteristic may underly this. Siblings are frequently harmed by these situations.
It is important for staff to reinforce for the parents their ownership of their babies. Once home the rest of the family are liable to assume that these infants are out of the wood, and are unaware that they remain fragile and vulnerable; parents may find themselves in conflict over this with their relatives. CP: Staff need training so that they give sensitive encouragement to parents claiming ownership of their babies. Family members deserve to be given information about the true condition of the new member as he comes home, perhaps by workshops at the hospital.
The sensitive use of language by unit staff is vital. Such phrases as "Your baby has been naughty" are very damaging for the confidence of parents. The tendency of some young doctors to attempt, while giving full information, to translate medical terminology into daily speech, can leave parents seriously alarmed. Your baby has a hole in the brain (periventricular leukomalacia) must lead to the thought What are they going to hit me with next?.
The Department of Health (DoH) has published The Neonatal Intensive Care Review Strategy for Improvement; it is thorough on clinical care, but completely neglects the necessary long term psychological care of the family. We also desperately need such help for those working in neonatal care. [Author: In fact the final recommendation in that DoH paper is that there should be psychological/psychiatric advice and community support after discharge from hospital (usually neonatal nurses with health visitor or midwifery training), and multi-ethnic health advocates and translators.]
CP: When there is a disagreement between parents and intensive care staff over appropriate treatment for a baby the unitís consultant should be brought in at once, to deploy the vital skills of negotiation and an understanding of the shared meanings involved.
The chair ended the meeting by quoting Sir Karl Popper: "Every genuine test of a theory is an attempt to falsify it, or to refute it. Confirming evidence should not count except when it can be presented as a serious but unsuccessful attempt to falsify the theory."