This study is the result of observations and questions that stem from my professional role as a senior key worker with families where a child has a life-threatening or life shortening illness. This project explores the cultures of families where a child has been diagnosed with a potentially fatal medical condition. By examining parents' accounts,
other family members' accounts and professionals' accounts of the ways treatment regimes are experienced, the study indicates typical differences in the ways life threatening and life-shortening illnesses affect family relationships. The study also examines variations in what these illnesses 'mean' for families and the ways that treatment regimes help to shape these meanings. A combination of qualitative research methods was used via in depth, semi-structured and informal interviews with families and professionals, and included participant observation. Data was collected from five informant groups: a) mothers where a child had been diagnosed with cancer or was living with a life-shortening condition; b) families of the ill children, suffering from both cancer and from a number of severe chronic medical conditions; c) well siblings living alongside an ill sibling; d) ill children themselves; e) professionals from health and psychosocial backgrounds who worked with the families. A detailed summary of the sample may be found in Appendix 1 page 291 Although limited, the findings have helped to provide a hypothesis outlining typical differences in the ways life-threatening illnesses and lifeshortening illnesses affect family relationships. They also offer health professionals and others working with ill children insight into the crises and challenges which might typically face families during the course of their children's treatment. Medical technology is successfully prolonging the lives of children diagnosed with lifethreatening and life-shortening illnesses who would not have survived the same illness
some years ago. In the light of these improvements, findings from this study indicate that when the illness is life-threatening as in childhood cancer, the treatment regimes and the sudden and frequent hospitalisation of the mother and ill child impact on the daily life of the family, changing the family dynamic and creating a sense of an emotional rollercoaster ride - with horror, hope, fear, relapse and remission all part of their journey. Conversely, findings suggest that in cases of rare, often difficult to diagnose, lifeshortening conditions, the family is drawn into a life-long up-hill struggle where the medical management of the child takes priority over, and increasingly dictates, other family members' relationships, roles and activities. Unlike the intermittent but extreme crises of life-threatening illnesses such as cancer, life-shortening conditions continue for the lifetime of the child, creating enduring long-term pressures on the family. However, in both categories of illness the families' lives are entwined with various professionals who appear largely unaware of how the medical management of these illnesses drain the practical, financial and emotional resources of the family. The findings of this research raise implications for practice and future policy. I conclude by suggesting that there is a need for an increased understanding, acknowledgement and respect from professionals that the primary carers in both categories of illness are to a greater or lesser extent, experts in their own children's illnesses. NHS Trusts, Children's Hospices and Children's Agencies produce a variety of care pathways for sick children, and although training in communication with patients is already in place, there is considerable room for improving the day-to day skills and approaches of the various
professionals, particularly health professionals involved in paediatrics and their communication with the parents and the ill child. There is also a need for increased understanding by professionals of the particular daily challenges faced by families with children undergoing treatment for these conditions.