Professor Malcolm Payne, writer, consultant and educator on social work and end-of-life care.
I met Jake when he was 15 years old, living at home with his mother and two early-teen sisters. He knew his mother had lived with cancer for more than five years, during which time his father had gone back to the Caribbean with a new girlfriend. The family were loaded with debt and his mother was doing two jobs to keep their heads above water. Then she came back one day from a hospital appointment with the news that within months she was going to die. Soon, she needed help with washing, dressing, going to the toilet. Who else was there to help but Jake, a boy in his mid-teens? How were they going to eat? And when his mother died, was he going to be the parent to his sisters?
Very often when we think about young people in the families of people at the end of their life, we think about how they will cope with loss and bereavement. But when parents approach the end of life, young people like Jake, especially in already fractured families, often face taking on practical caring and other family responsibilities. The 2001 UK census found that 114,000 children aged five to 15 acted as informal carers for an adult with a chronic illness. Five thousand of them provided more than 50 hours of care each week. Surveys of young carers suggest that many miss school, are responsible, like Jake, for providing intimate care and do not receive the formal assessment required by law of their own needs as a carer. They report tiredness, stress, anxiety, low self-esteem and social isolation.
Most of this research focuses on young people caring for people with long-term conditions. The concern is that the whole of their childhood is blighted and they lose opportunities for personal development and education. But is it different for the young carers of people who are dying? The period of caring responsibilities they face may be only short, but they face the knowledge that the person they are caring for is soon going to die. Emotional responses to their situation may be as important as practical difficulties.
A series of young carers’ groups at St Christopher’s Hospice in London, evaluated in a report in the European Journal of Palliative Care this month, shows that they experience many of the same feelings as young carers of people with long-term conditions, although they often don’t identify themselves as carers. They value the support that they get from meeting other young people in the same position. Helping them is an important challenge for palliative care services.
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The article to which this post relates, ‘Young carers in palliative care: a groupwork project’, by Jenny Baulkwill, Andrea Dechamps, Julia Manning, Ninon van der Kroft and Malcolm Payne was published in the November/December 2012 issue of the European Journal of Palliative Care 19(6): 296-8. If you already have a web-based subscription to the EJPC you will be able to download and print this issue, plus all articles in the EJPC archive.
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