ADVICE TO READERS THIS REPORT IS LONGER THAN YOU WILL WANT TO READ IN ONE SESSION. PLEASE NAVIGATE FROM SECTION TO SECTION
Royal Society of Medicine Forum. Preterm birth: a medical miracle with an emotional cost? SECTION 2
This is Section 2 of a full report of a meeting of the Forum on Maternity and the Newborn of the Royal Society of Medicine held on 28th April 2005.
The report is to be published in part in the Midwives Journal of the Royal College of Midwives. It is reproduced here with their consent and our thanks.
Presidential address: Health Psychology and frontiers of neonatology.
Dr Elvidina N Adamson-Macedo (ENA-M), President of the Forum on Maternity and the Newborn. Reader in mental health and research coordinator, School of Health, University of Wolverhampton.
I acknowledge here gratefully the babies and parents and the many others with whom I have worked since I first came to this country in 1978. For the past 25 years my life has been dedicated to the health and well-being of preterm babies and their parents, and for 10 years I have been involved with developing the contribution to neonatology of psychology. Its bases are in social and cognitive psychology, focusing on maternal internal mental states such as beliefs and desires and the observation of behaviours of preterm babies. We have studied how such information is represented, and how it interacts with the environment.
Environmental and developmental neonatology is a discipline concerned with the study of newborn special care facilities and their impact on the medical and developmental status of preterm or sick infants; this and related disciplines including psychoneuroimmunology (the study of relationships between the behavioural, neuroendocrine and immune functions) have led me to formalise a new sub-discipline which I named Neonatal Health Psychology (NNHP) and defined as the scientific study of psychobiosocial and behavioural processes in health, illness and health care of the newborn during the first 28 days of life, and the relationship of such processes with later outcome.
Mind emerges when the fetus is first able to respond to external stimuli, which might be auditory, or in the case of my particular interest, tactile. Between 1980 and 2004 my colleagues and I developed a method of touching and stroking (tenderly caressing - which I call TAC-TIC) preterm babies from head to toe following five principles: gentleness, lightness, equilibrium, rhythm and continuity . Observed benefits have been reduced initial weight loss, followed by improved weight gain and sucking; an increase in the levels of secretory immunoglobulin A, which has a vital protective function for the respiratory tract; stabilisation of heart rate; and better organised behaviour, indicating comfort.
The birth of a preterm baby can be stressful to all involved but particularly to the mother who may start doubting her mothering abilities. Self-efficacy refers to the belief in one's ability to organise and execute a course of action. Maternal self-efficacy is specific to a woman's perception of her performance in the maternal role, and to the belief she has in her ability to respond appropriately to her infant's signals. This sense of competence has been attributed to prior experience, to the time spent on an activity, to the influence of others, and to a person's sense of her own body. It is likely to be low if her baby has a difficult temperament, is irritable and cries a lot or has colic, if CP has been diagnosed, or if the mother is subject to anxiety, depression, or stress. It is raised by rewarding prior experiences, good social support, and multiparity. With Chris R. Barnes, Psychology Research Associate, we have developed the Perceived Maternal Parenting Self-efficacy Scale, with 20 items divided into four groups: caretaking procedures; evoking changes in the baby's behaviour, for example effective soothing; reading the baby's behaviour, as when a mother is aware that her baby is tired; and situational issues, such as a mother's belief that she has control over her baby. When the scale is applied to breastfeeding it is found that mothers who feed their babies artificially have the higher score, perhaps explained by a breastfeeding mother's sense of her own body being impaired when she experiences difficulties with the baby's fixing on the breast or poor milk supply.
We are continuing to investigate early maternal parenting using self-efficacy, self-esteem and attachment; we aim to evaluate the mediation of environmental developmental support programmes in facilitating the early parenting of preterm neonates in hospital and their psychoneurological development. We expect to develop a theory of play in preterm babies, involving touch: being touched, touching themselves, and touching the environment. I am confident that NNHP can develop programmes of sensory nurturing for these tiny babies which will improve their prospects for health and development.
Afternoon session: Caring for the emotions of the mothers of preterm neonates.
Chair: Dr Maggie Redshaw, Social scientist, National Perinatal Epidemiology Unit, Oxford University.
My daughter was born early: looking back and beyond.
Charlotte Leung (CL), mother of a preterm baby.
After having given birth to two healthy baby boys at term, my third baby was born by caesarean section 19 years ago, at 28 weeks and four days, weighing 2 pounds and 15 ounces. Given the choice of CS under general anaesthesia or epidural, I asked for a birthing chair, which had been so successful on the previous occasions. I soon learned that the first two were the only choices.
The first I saw of my new baby was a poor photograph; soon she was in the NICU, which was hot, busy, noisy and frightening for me, despite my former experiences as a nurse. My husband, once a nurse also, reported back to me that our daughter was fine, until there was "blood everywhere", and he was never going back there again - until I sent him back.
Catherine was in the NICU for 11 weeks, but happily only ventilated for the first 48 hours, which enabled us to start touching her. We had decided that her brothers would be her only other visitors, as our families were elsewhere and we were, no doubt unnecessarily, concerned about infection. I was allowed to stay in the hospital for 10 days, and after that a first-time mother in the unit reported for me what had happened to Catherine during my absences. A teddy bear located her for me if her incubator had been moved, and we took in pictures of the boys, prayer cards, and music; these chimed well with the atmosphere in the unit: there were plenty of pictures, weekly meetings for the parents, and a lot of support, love, and care from the nursing staff. I was content not to meet a consultant, taking this as a good sign. All the parents were asked to leave the unit during doctors' rounds, for reasons of confidentiality which seemed perfectly acceptable to me.
We took her home, on continuous oxygen because she had an abnormal demand for it, but when very soon she stopped needing the extra oxygen we had to take her back to the hospital where her oxygen levels could be monitored. The hardest time was when we finally could take her home, where the lack of support was felt.
Do premature babies feel pain? I learned that they do from Catherine's reaction to abdominal needling for a urine sample. Does she have any memory of that time? She was given Wysoy, and hates milk to this day. It was at this time that we first met Elvidina, or Didi as we know her, and she taught us how to touch and stroke her, which we all did, the boys too. We give TacTic much of the credit for her subsequent healthy development - she is now at Oxford University studying German.
The mental life of neonatal intensive care units.
Annette Mendelsohn (AM), Consultant Child Psychotherapist, Co-ordinator of Liaison Service to the Neonatal Intensive Care Unit and the Department of Child and Adolescent Psychiatry, Royal Free Hospital, London.
Something amazing happened 30 years ago with the human bonding studies of Klaus and Kennell in 1976, which had an enormous impact in NICUs, and let mothers in to take care of their babies for the first time. Similarly Bowlby and others were carrying out attachment research while Brazelton, enormously influential, was then and still is working on mother-infant reciprocity. Using a psychoanalytical frame of reference Stern in the 1980s became interested in the interpersonal world of the infant and the first relationships. We cannot ignore the influence of Freud, Melanie Klein and Winnicott on such studies, and cross-fertilisation of ideas between all of these has had a great influence on care in NICUs. One of the many outcomes demonstrated the importance of skin to skin contact leading to the introduction of kangaroo care as a way of bringing mothers and babies closer in NICU. There have since then been a number of other therapeutic models of care introduced in NICU, drawing attention to the importance of the early experiences of vulnerable mothers and babies in this environment.
Our hospital trust funds one three-and-a-half-hour session for two psychotherapists in the NICU. We take part in weekly psychosocial meetings to hear about referrals and offer cot-side parent-infant psychotherapy sessions to parents and their babies; recognising the family trauma represented by preterm birth a child psychotherapy trainee sees young siblings for therapeutic play and to help parents talk to their child about what has happened. Mindful of the psychological issues which may be present in much of the child's life, the psychotherapists also liaise with, consult and support nursing and medical teams within the hospital, and health visitors and other agencies in the community.
Our therapeutic work involves observation of the baby in participation with mothers. We take note of our own subjective responses to the observations of the developing relationship between mother and baby, and put into words the emotional responses of the parents in an attempt to offer understanding and support. We hope to provide a psychological nest for mothers and babies to repair and recover their relationship. Inherent in our work is also paying attention to unconscious processes, the anxieties and fears prevalent in babies and parents, as well as in the unit's staff.
I cannot overemphasise enough the importance of a multidisciplinary approach to care in a NICU. As well as our service, the role of social services, paediatric speech and language therapy which address feeding problems associated with prematurity, and physiotherapy and occupational therapy with its role in developmental care, have their vital contributions to make as part of an integrated team.
Alice was born at 29 weeks. She was referred by the nursing staff at 36 weeks because of concerns that her parents were not visiting enough. I offered parent-infant psychotherapy sessions which alternated with the developmental therapist. During my first two observations, Alice was asleep, and hardly discernible under her bedclothes; her mother was unable to keep the appointment with me, but I spoke to the nurse about her. She told me Alice was being tube fed, and still needed oxygen. She said: "She isn't doing very much". I wondered whether mother's reluctance to visit was connected to a deeper emotional response to Alice being a "not doing much" baby.
A week later I met the mother for the first time and when offered the choice, she said she preferred to talk to me alone and without Alice. She told me how awful the past few weeks had been; the premature birth and its associated problems were not at all what she had expected; she felt frustrated that her baby slept all the time and was so unresponsive. Mother felt that Alice didn't know what to do at the breast and complained that she needed to be tube fed. She worried about the future, "How can I know what to expect?" She seemed to be disappointed in her baby and experienced a rejection by her. When I suggested this to her she broke down and wept. We continued to talk about her difficult feelings in relation to Alice's behaviour.
Three days later I found the mother in the NICU with Alice in her arms. She invited me to sit with her; Alice was lying at her left breast, her left arm between the breasts, and she was making some sucking movements with her mouth. Her mother agreed that Alice had been behaving as though she was as yet unready to be born. She was feeling a little better, and was pleased by the baby's first breast feed. I said how good it was that she was there to help Alice with this, helping her to learn about feeding, and "About you", I added. When Alice came off the breast and looked uncomfortable, her mother spoke to her, asking what was wrong and touching her. When Alice relaxed I suggested that the two of them had made a good emotional contact, and the mother smiled and kissed Alice's hand.
Because Alice's mother had been so shocked by the discordance between the baby she had expected and the one she perceived as unready for the world, a meaningful engagement was at first impossible for them. Alice had been born at a stage in pregnancy when the fantasy of the baby-to-be is idealized. A premature delivery can then be a terrible blow. Although at first she was upset by my comments, she was able to realise how both she and Alice had found difficulty in looking and finding each other; furthermore she came to realise how much Alice needed her so that a vital intimacy could unfold and development progress. Initially mother's integrating function for the baby was lacking, but by the third session she engaged well with Alice, helping her to organise her bodily sensations and giving her a sense of bodily integrity. The difference in them was enormous, the mother achieving an empathic contact and becoming sensitive to move at a pace which Alice herself set. Further disappointments were averted and the recovery of a relationship could resume.
The importance of a therapeutic space on NICU for the expression of loss, grief, fear and anxiety associated with preterm birth was discussed. There was a lot of interest in the psychotherapeutic service described.
Klaus, M.H. & Kennell, J.H. (1976). 'Maternal-Infant Bonding. St.Louis: Mosby
Bowlby, J. (1958) The nature of the child's tie to his mother. International Journal of Psycho-Analysis, XXXIX, 1-23.
Brazelton, T.B. and Nugent, J.K. (1995) Neonatal Behavioural Assessment Scale 3rd Edition. MacKeith Press
Stern, D. (1990) Diary of a Baby: What Your Child Feels, Sees and Experiences. New York: Basic Books
The behaviour repertoire of preterm babies and its role in enriching the parent-infant early relationship.
Dr Janet Constantinou (JC), Development Specialist, Stanford University, California.
The Neurobehavioral Assessment of the Preterm Infant (NAPI) can be used to elucidate the behavioural repertoire of the preterm infant prior to hospital discharge. Incorporating parents in the assessment process alerts them to their infants' competences and preferences, and enables them to identify the strengths and needs of their child.
Early understanding of preterm infant behaviour and appropriate early intervention is widely believed to be in the best interest of the developing baby. The parents, as primary caregivers, are usually responsible for intervention and developmental care as soon as the infant leaves the hospital, so involvement in the assessment process prior to discharge enhances family understanding of the behavioural needs of the infant. The NAPI is an examination that has been carefully designed to elicit the optimum behavioural state for the infant and to demonstrate a range of behaviours that are frequently not seen by parents. The psychometric properties of the NAPI, its developmental validity, test-retest and inter-rater reliability and normative data from 32-37 weeks postmenstrual age are among its strengths. It can be used both as an effective teaching tool, and as a measure for clinical assessment. Validation of parents' observations confirms a competence that is frequently undermined by short gestation and the fragile nature of the preterm infant, and serves to enrich the early parent-infant relationship.
Parents are fully informed about the NAPI examination of their baby prior to the examination. Manoeuvers, and the observation of behavioural states between items which may be quiet sleep, active sleep, drowsiness, quiet alert, active alert or crying are explained. Parents are involved in the examination as scribes and they are asked to comment on their baby's performance. The opportunity to show parents that you respect them, and that you validate their observations, is valuable. Parents' assessment of their baby's behaviour is discussed, and this tells the professionals what the parents need to learn, and enables them to support parents in their opinions.
The examination of motor development includes ventral suspension, prone head raising, the spontaneous crawling reflex, power of active movement, and vigour. A hidden rattle is used for inanimate auditory stimulation, and animate auditory stimulation is made with the voice, to elicit focusing and tracking. Some of these behaviors are unfamiliar to parents, but they are rewarded to see their baby turn her head towards a voice, and to see, at such an unexpectedly early stage, crawling movements, particularly in the environment where so much is abnormal. The sequence and method of these items in the examination never vary, starting with undressing the baby, who is usually asleep, and gradually arousing her to an alert state for orientation items; this enables accurate week by week assessment of progress, which can also be important for research.
Using the NAPI as a research tool we have measured the relative maturity of a cohort of very low birth weight infants, and found that at 36 weeks post-conceptional age extremely low birth weight infants are less able to sustain alertness and to orientate compared with the normative data. The temperament of babies is known to be stable over time. It is particularly useful for parents to see, if their baby is irritable, that this is no fault of theirs; we can confirm this irritability not only during the NAPI but also by reference to the nursing staff, and we can provide the parents with tools which they can use to meet the problem. State regulation, the ability of a baby to soothe itself from being irritable, the tendency to sleep a lot which parents may feel as rejection, an inability to sustain alertness so that parents have difficulty making eye contact, and persistent crying, are all valuable observations to discuss with parents while reassuring them. Week by week they are rewarded by the reduction, for example, of a worrying sign like tremulousness, and by their baby's increasing responsiveness to stimulation.
The NAPI provides parents with such gratifying surprises; often they admit that they rarely see their babies fully undressed, and often they are reassured to see that the baby of whose survival they were uncertain is making progress. They achieve a new understanding of her normal behaviour, and are pleased to see a responsivity in her during the examination which they can look for when they are at home. They are empowered by all this knowledge, and this enriches parent-infant communication and relationships.
Suggested reading: An extensive list of references showing psychometric properties of the NAPI, its developmental validity, test-retest reliability, and research projects using the tool can be found at the NAPI website
(AM) The scarf sign and the popliteal angle are both physical tests used as rough measures of prematurity. In the scarf sign the baby's arm is drawn as far as possible across the chest; the farther across that the arm will go, the greater the prematurity.
(CL) Advice to parents whose baby has just been born early. Try to stay in control, no easy matter when you are on an emotional rollercoaster; be prepared to take professional support and advice including the psychological , both within the NICU and from outside agencies.
The emotional reaction of a mother to a preterm birth, particularly if the baby becomes and remains ill, or has a series of episodes of illness, can result in a disorder which amounts to post-traumatic stress disorder (PTSD). The incidence and treatment of this situation requires research.
Although the establishment of a psychotherapist post on a NICU is vital, it is the sort of position which a hospital trust in any financial difficulty will think of cutting first, and a consultant in the speciality is making a resigning issue of this. A psychotherapy service is essential to the necessary holistic care. (CL) I trusted the nurses to give me sufficient information, and on the rare occasions when we spoke to a consultant it was about a major change in them management of our baby's care; if she had suffered episodes of critical illness I would have welcomed frequent input from the doctors.
(JC) We only work with the babies using the NAPI in the brief period when they have become medically stable and before they are discharged home; we believe that what the parents observe then enables them to handle their babies with increased confidence. At Stanford we have volunteers who stand in for absent parents, and help staff with feeding, holding, and with kangaroo care. They undergo extensive screening and training, and many of them have done this work for years, some having had preterm babies themselves.
(ENA-M) Neonatal Health Psychology will continue to emphasise psychobiosocial aspects in the care of newborn babies and their mothers. We are in an age of evidence-based medicine, so if these forms of developmental care are going to be incorporated we must patiently devise and carry out the necessary RCTs. Clearly kangaroo care will never be possible for the smallest preterm babies in the first weeks of their lives, particularly those being ventilated; mothers and carers need to understand that for sensory nurturing programmes to be successful they need to respect the developmental sequence of the sensory systems.
(ENA-M) We work with mothers and babies from the early stages of their care, measuring self-esteem and self-efficacy; we hope that when our research is complete it will show the benefits of TAC-TIC, and advantage in terms of parent-baby attachment.
(ENA-M) Observation of aborted fetuses from 7.5 weeks gestation has shown at least a reflex response to touch, and from 12 weeks, when hearing starts, some form of cognition. I am convinced of this, although I understand that many cannot accept it. The process continues throughout life.
Building the confidence of parents as primary carers.
Shanit Marshall (SM), Head of Information and Support, BLISS.
BLISS is the premature baby charity which campaigns for improvements and development in neonatal care and which funds innovations in care, including nurse training and research. We also provide information and support services for parents whose babies are or have been in neonatal care; this includes a national freephone helpline, and we have a shared experiences register which enables us to put parents in touch with each other where their experiences were similar. BLISS produces free leaflets on understanding the signals and cues of a baby in neonatal care, breastfeeding your premature baby, kangaroo care, positioning, going home on oxygen, and many more. We are promoting user involvement on neonatal network boards, helping where funding decisions are being made, and pressing for the provision of appropriate staffing levels in NICUs, particularly where units have merged. We encourage parents to become involved in decision-making lest units overlook the importance of parents in the delivery of care.
NICUs are far from being the ideal setting for the beginning of life and mother-baby attachment; how is love to be conveyed between them, and how is the baby to feel that she is protected? Clinical requirements by necessity come before emotional needs, sidelining the parental role. We aim to build the confidence of parents as primary carers to promote early attachment, and to suggest ways in which healthcare professionals can contribute to these and to the optimisation of parents' involvement in their babies' care in NICUs. This helps to build their confidence as parents when they take their baby home.
The absence of physical affection has a negative impact on babies' immune systems (Brazelton & Cramer 1991); massage by depressed mothers improved their babies' soothability and decreased their stress hormones (Field et al.). Premature birth is a rupture for babies; attachment is all the more essential for their physiological regulation, and "babies need a caregiver who identifies with them so strongly that they remain physiologically and psychologically extensions of their mothers" (adapted from Gerhardt 2004). Attunement with a baby occurs through a mother's presence and through her non-verbal communications - eye contact, touch, smell, holding and voice. Attachment establishes a lifelong relationship; early separation and the lack of attachment can have long-lasting effects on brain receptors and result in permanently raised levels of anxiety (Van de Kolk 1987; Gabbard 1992).
NICU separates the baby from her parents in so many ways: the incubator, the medical equipment, the separation from home, and a baby's need for clinical care separates the parents from their caring role. They fall between the demands of home and hospital, sometimes made worse by financial stringency; we have once had to supply a travel pass. As we know, parents can help their babies through painful procedures by containment, holding and stroking them or positive touch; however, some parents find it hard to cope with being involved when their baby is being subjected to painful procedures, and should not be judged.
Every year BLISS is contacted by over 1500 parents; 65,000 Parent Information Guides are distributed at neonatal units throughout the UK, and nearly 4000 messages are posted on our website's message board. Most of this activity occurs after the babies have gone home. As well as providing information useful in the early days of a baby's life, the guide also encourages parents to ask questions. At home the lack of the unit's support and care is often felt; health visitors do not have specialist training in this area, and often need to be told what happened in the unit. In addition to the many issues faced by all parents when at home with a new baby, we are frequently approached by parents and health visitors with questions and concerns about feeding issues, development, disability, and medical matters including coping when a baby is on home oxygen.
My colleague Justine had a baby at 28 weeks. She says that parents care for their babies in different ways, and that while they value encouragement, they should be allowed to care for their baby in their own individual way. Taken together with the many differences in the needs and behaviours of babies, we can appreciate the complex issues facing neonatal staff and parents when addressing the care of preterms.
The chair: It is mystifying that TacTic, NAPI, and kangaroo care, three innovations which have been proved valuable, have not been taken up more widely in NICUs. (JC) At Stanford we have volunteer parents who stand in for staff and absent parents, feeding, holding, and helping with kangaroo care. They undergo screening and training, and many of them have done this work for years, some having had preterm babies themselves. (CRL) Large areas of Brazil have taken up kangaroo care with enthusiasm and apparent success, although there is a need for research. (SM) We hope to encourage the British Association of Perinatal Medicine to take up these aspects of developmental care so that they may become core elements of the work of NICUs. Issues of time and money should not inhibit their adoption.
A midwife teacher and researcher reflected on the frequency with which the psychosocial aspects of women's histories are sidelined, on the attitude which expects all women to respond emotionally in the same way, and on the regrettable tendency, not least among neonatal nurses, to use checklist examinations. (EA-M) Neonatal Health Psychology will continue to emphasise psychobiosocial aspects in the care of newborn babies and their mothers. We are in an age of evidence-based medicine, so if these forms of developmental care are going to be incorporated we must patiently devise and carry out the necessary RCTs. Clearly kangaroo care will never be possible for the smallest preterm babies in the first weeks of their lives, and their mothers need to understand and accept this.