Palliative care for children and young people with life-limiting conditions is the active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on the enhancement of quality of life for the child, support for the family, and includes the management of distressing symptoms and provision of respite and care through death and bereavement. The care of children with life-limiting illnesses is holistic and multidisciplinary, requiring a range of services and skills.
The assessment of needs of the child and his/her family is the basic step for providing the proper medical service. The core assessment is developed around 3 main areas: the developmental needs; parenting capacity; and family and environmental factors. The holistic care embraces multiple needs including physical, emotional, cultural, spiritual, and social needs of the child and the family, and other significant needs as well.
One of the main needs for children in palliation is pain management. Unfortunately, there are several myths and misconceptions surrounding childhood pain, which form obstacles in pain management in children. These include the following: children are able to tolerate pain more readily than adults, babies are unable to feel pain due to incomplete myelination of nerve pathways, children cannot tell the truth about pain, children who play cannot be in pain, and those who are given opiate-based medication will become addicted.
It should be noticed that children of all abilities exhibit changed behavior in relation to discomfort and well being. The influence of culture, ethnicity, faith, sex, cognitive ability, developmental stage, and earlier experience of pain will all impact on how well a child copes. Children may choose to communicate their awareness of the severity of their illness verbally; through play, writing, and drawing ; and within arts. Although the Children Cancer Hospital, Egypt is relevantly new (started working in July 7, 2007), a training center was created for all employees newly hired in the hospital. Nurses receive lectures on the concept, physiology, assessment, and management of pain. After completing theoretical information and the simulating training, a one-to-one supervision is carried out while dealing with cancer patients suffering from pain.
The impact of life-limiting illness on the family varies from one family to another, and each family develops its strategies for adjusting and coping, which will differ from the diagnostic phase to the end-of-life phase. Family members are interdependent. Therefore, anything that affects one member will affect the family as a whole. The siblings of the patient are highly frightened and affected. Interrelated factors such as children's individuality, the family situation, and the home environment are likely to impact on how siblings grieve. Culture, family values, and lifestyle also need to be taken into account. Grief is particularly acute in siblings when their sick sibling is suffering from a genetic disorder. For that, a complete psychosocial family assessment is made since the first beginning of the illness of the child in our hospital. The strengths and weaknesses of the family are identified, and family members are informed in detail . The manner in which family members are using to cope is observed by the psychosocial team. Negative coping is managed by direct instructions to the family members, and different psychological techniques (cognitive, behavioral, etc) may be used.
Many families with a life-limited child have limited opportunities to earn and, despite benefits, they may struggle to claim their full financial entitlements. Some parents care for their child for many years and the accumulative effect of exhaustion can seriously damage parents' health. The disruption to parents' lives and periods of absence from work are likely to have a severe effect on parents' self esteem, professional reputation, and promotion prospects. Connecting these families with financially supporting organizations is one of the main jobs of the social workers in our hospital, and contacting work places of the caregivers to explain how they are exhausted with a terminally ill child and how they should be supported are also taken care by them.
It is estimated that more than 100,000 children lose 10 million hours of education annually because they have interrupted schooling through ill health. Parents with a child diagnosed with a life-limiting illness need early identification of their child's special educational needs, opportunities to choose educational resources to support their child, and coordinated provision from all the educational services supporting their child. A child's statement of special educational needs may include specialist teaching, specific programs to meet therapeutic needs, or specific teaching and learning strategies to use with a child. Developing an internal school started by the end of the first year of our hospital. Children (inpatients and even outpatients) attend these classes to get what they are missing by absence from school.
The staff caring for children requires skills in 6 key areas that are as follows: communication and engagement, child development, safeguarding and promoting welfare, supporting transitions, multiagency working, and sharing information. The conditions in which the staff works may directly affect stress levels. Not all stress is negative. Creative stress may enhance staff performance and personal well being, but the long effects of stress are cumulative. When professionals are valued and supported by their peers, this can have a tremendously positive impact on stress management. This is one of the main tasks the psychosocial team at the Children Cancer Hospital Egypt performs, despite the workload on all the working staff in the hospital.