Listen to thisMost children find being in hospital frightening and upsetting, in addition to the physical discomfort and pain of their condition. The sights and smells of an unfamiliar setting, the voices and faces of strangers, the terror of medical procedures, and separation from trusted and loved caregivers are deeply distressing for young children.
For children infected with HIV/AIDS, such an experience is inevitable, and often repeated. As their condition deteriorates, hospital admissions become a frequent event in their lives. HIV/AIDS dominates hospital wards. In contrast to ten years ago, when infected children represented 10-15% of admissions, they now represent 80% of admissions, and HIV/AIDS accounts for 70-80% of child deaths in hospital.
The changed focus of medical and nursing care affects all children in hospital, not only those with HIV/AIDS, and those caring for them. Nurses, doctors, parents and children's caregivers involved in terminal and palliative care of children all experience chronic distress. The psychological distress of all concerned affects the morale of staff, the coping of caregivers, and is also likely to affect the capacity of children to recuperate. As a result, there is an urgent need to improve the hospital care of children, within both the biomedical and psychosocial spheres. The lessons to be learned from those immersed in such difficulties are priceless in attempting any improvement.
An illustration of such lessons learned can be drawn from a project aimed at developing video teaching materials for those providing predominantly palliative care. In an attempt to provide assistance, as requested by the consultant paediatrician; to a large tertiary paediatric in-patient service in KwaZulu-Natal, members of staff of the Child Youth and Family Development (CYFD) programme met with the hospital staff to do a situation analysis. Subsequent discussions with ward staff led to the identification of five clear issues posing difficulties for the care of hospitalised children. These were:
How to deal with infants and children crying, especially as a result of the distress of being separated from their caregivers, on admission or after a visit.
How to give support in the ward to a mother, working with the counsellor, after she has been informed of her child's positive HIV status.
How to involve caregivers in painful medical procedures and ward routines in order to reduce the distress of children.
How to promote active feeding by children, with the assistance of caregivers and/or ward staff. (Poor nutrition, resulting both from loss of appetite and discomfort due to thrush, is a major barrier to children's recovery from episodes of acute illness).
How to prepare caregivers and children for discharge and follow-up activities.
The idea of using video to demonstrate ways to deal with each of the five issues was greeted with enthusiasm by ward staff. They and the CYFD team worked together to make five short, unobtrusive videotaped observations of occurrences within the ward, in order to gain a better understanding of how the issues arose. These observations were made several times a week at varying times of day.
The ward houses 30 cots for children ranging from babies to 12 years of age; the cots are distributed among four small rooms and two large open areas. An average of five to six nurses are on duty during the busy morning hours; however, the staff number drops to an average of two to three throughout the remainder of the day and evening. The majority of the children admitted to the ward are treated for persistent diarrhoea, kwashiorkor, pneumonia, and symptoms associated with HIV. Daily medical procedures are carried out four to eight times a day depending on the child's condition; such routines include measurements of blood sugar level, urine sampling, blood pressure and heart rate measurements.
There are five visiting hours for caregivers – at 5am, 8am, 11am, 2pm and 5pm. During these hours, caregivers feed the children, tidy up the cots, and converse with other caregivers. Aside from the medical procedures and the visiting hours, children are mostly left alone. Children sleep, cry or are immobile and withdrawn. Some children who receive no visits from caregivers may be left completely isolated without any attention or stimulation for hours at a time.
The psychosocial distress and discomfort of children admitted to the ward for treatment in the context of the HIV/AIDS epidemic was a key focal point of the project, as children's readmission rate is very high. Particular attention was given to periods of active care by the professional staff, interaction between children and caregivers, and times when children were left alone in their cots. This was done with the intention of understanding and monitoring how children cope in a stressful situation. Consent from the hospital authorities, the ward staff, and the mother was obtained for a video camera to be placed unobtrusively to record a particular child in their cot for an extended period. Debriefing sessions were held with mothers and caregivers. Footage captured during the observation periods was found to be of great value for the development of brief interventions.
Two of the observations have already been used to improve the care of the children and these are described in detail below as they demonstrate how distressed children can be helped to cope with pain and separation in simple and effective ways.
The first account is of the separation of a young child from his caregiver at the end of a visiting period. During visiting time, one and half-year-old Njabulo was happy and active, and communicating with his mother. Though the intravenous drip tube attached to his arm limited his movement, it was evident that he was content and comfortable sitting on his mother’s lap, playing with her whiLe she smiled down at him, cleaning his feet and toes gently with a green face cloth. The healthy, mutually satisfying interaction between the mother and child was short-lived because Njabulo’s mother had to leave when visiting hours came to an end. From the moment of her departure, Njabulo screamed and wept. His continuous shrieks and cries blended with those of the other children whose mothers had also just left. This uproar of human distress is almost unbearably taxing to an outsider, but to the nurses it is but one of the many periods of pandemonium that they have to tolerate.
After 20 minutes, several children lay asleep in their cots with tear-stained faces, exhausted from their cries. Njabulo, however, stayed awake, and though his cries were sporadic and not as loud as before, he was still actively distressed and longing for his mother. Looking around, Njabulo’s eyes were drawn to the green cloth his mother had left hanging on the side of his cot. His recognition of the cloth precipitated a new bout of crying, as his longing for his mother was re-activated. Carefully, Njabulo stepped over to the cloth, removed it from the railing and clutched it tightly. He brought the cloth up to his face, feeling the softness of it against his skin. A nurse passing by offered him a balloon, in the hope of soothing him, but Njabulo pushed the balloon away with one hand while clutching onto his green cloth with the other. Several times, he dropped the cloth in the cot but every time, he bent down to retrieve it. Then a nurse, intent on tidying up the cot, took the little green cloth from the boy, folded it neatly and placed it on the railing of the cot. She was unaware of the psychological significance of the cloth for the child, bridging as it did, the gap between him and his caregiver. Relentless, Njabulo reached up and pulled the cloth back, holding it close to him as though it was the only thing he had left in the world. Though he still let out a cry every so often, it was not as full of anger and misery as before. Throughout the next 30 minutes of the observation, Njabulo and his cloth were inseparable; he carried it as he moved about and when it was taken from him again and placed on the railing of the cot in another round of tidying, he took it back.
The one-hour video clip of Njabulo and his green cloth left a powerful image of the loneliness and distress a child faces when in hospital. Njabulo portrayed clearly that during such difficult times of isolation, children need assistance to cope and that such needs can be met in very simple ways.
For Njabulo, the small green face cloth was enough to appease him in the absence of his mother. In the interaction with the cloth, Njabulo shows us that a transitional object, bearing the scent and memory of his mother, acts as a great source of comfort during a time of stress or anxiety.
Many of us recall from our own childhood that special teddy bear or blanket that brought us comfort during times of loneliness; the warmth of the fabric against our skin, the familiarity of its scent. When separated from their parents, children need such things to provide comfort and a sense of security. Such a need is amplified among children who endure special stresses, such as hospital admission, and particularly multiple visits to the hospital. By providing the child with a familiar object in an unfamiliar and perhaps hostile environment, as seen through the eyes of a child, detrimental psychosocial distress may be averted and great consolation achieved. The concept of transitional objects was introduced into psychological thinking by Donald Winnicott, a British paediatrician, who described how an object or a phenomenon (such as a song, or a short ritual) could come to represent the security and happiness of a child's attachment to their primary caregiver. In this sense,, it “stands in for” the caregiver’s constant presence and attention. Transitional objects can be “created” in an environment such as a hospital, by asking a caregiver to leave behind with the child a small object, piece of clothing or a cloth, which the child recognises and associates with them.
The second observation involved Nontokozo, a two-and-a-half-year-old girl with deteriorating health and persistent diarrhoea. Not only was she just skin and bones, but she had developed a very painful rash on her buttocks, making nappy changing very difficult and stressful. Attempts to lift her bottom or even touch it appeared to be torturous for the little girl. Nontokozo’s mother used a cream provided by the hospital to rub gently on the child's bottom. With warm and loving hands, she first rubbed the cream over the child's arms while smiling and talking to her. Then she slowly rubbed it on Nontokozo’s buttocks. Though at first, the child seemed to experience some pain, she was clearly comforted by the warm touch of her mother’s hand against her skin, and the calming interaction continued. At one point, Nontokozo raised her skinny arm and pointed to the tube of cream. The mother handed her the tube and the child put some cream on her fingers, and rubbed it gently, as her mother did, on her bottom, Nontokozo smiled as she slowly rubbed the sores. When her mother lifted Nontokozo to change her nappy, the inevitable physical pain made her let out a cry, and sob quietly, but she was comforted once again by the warm touch of her mother, who picked her up and rocked her gently in her arms. In this episode, Nontokozo’s mother demonstrated the power of three things “the calming effects of rhythmical touch, the importance of quiet and reassuring communication, and the assistance children receive to cope better when they can gain some control over their treatment.
Through her tender rubbing, her mother alleviated some of the anxiety and distress during the painful routine of nappy changing. The affectionate touch also stimulated the tactile and pressure receptors of the child causing her to be more alert. Nontokozo’s request to have the cream to rub on herself showed that she had gained some control over her own discomfort and was actively involved in alleviating her own pain.
Both video clips were shown to the ward staff during a debriefing meeting. In response to Njabulo’s experience, it was agreed by the CYFD team and the nurses that caregivers would be encouraged to leave behind a soft, inexpensive comfort object for their child. The 20-minute clip of Nontokozo and her mother inspired the CYFD team to encourage infant massage by the caregivers in the ward. Numerous studies have shown the positive effects of infant massage – it helps to reduce stress during infancy, facilitates growth among preterm babies, increases alertness, diminishes depression, and enhances immune function (Field, 1996a). Infant massage has traditionally played a role in child care in South Africa. The older nurses and caregivers know how to do massage but the nurses say it is not often practised now, especially among teenage mothers. The staff agreed to inform mothers on the importance of this intervention, encourage them to use infant massage during hospital stays and offer instruction on how to perform gentle massage.
The stories of Njabulo and Nontokozo served as two very influential lessons. They not only evoke personal memories of our own childhood or of our own children, but they activate empathy for those children directly affected by the HIV/AIDS pandemic. In addition, they demonstrate forcibly the importance of nursing practice to the health and well-being of children in hospitals. This is an important message at a time when health professionals feel that there is little they can do for infected children. Through such episodes, videotaped during natural interactions, we have learned that nurses, mothers and children can teach us, through their behaviour, about simple and cost effective interventions that can alleviate the psychosocial distress of and promote the care of sick children. The videotape episodes also help us to appreciate and develop a deeper sense of respect for those involved.
Interventions such as those described are being incorporated into training material for the staff and their use will be evaluated. In addition to the training films being developed, CYFD staff have monthly discussion with nurses to explore ways to improve the care of children. These include bringing the caregiver in when a child has to undergo a painful procedure, such as inserting a drip, so that the caregiver can touch and make eye contact with the child. The project will also look at how to assist children who are in isolation or who do not receive visits.
References
Winnicott, D. (1935). Transitional objects and transitional phenomena. International Journal of Psychoanalysis, 34:89-97
Field, T. (1996). Massage Therapy Effects. American Psychologist, 53:12, p1270-1281
This feature: Hsiao, C., & Richter, L. (2005) Video clips capture lessons in caring: Making hospital less distressing. Children First Vol.9 No.62, pp.10-13
