This article describes the long-term impact of childhood brain tumours on eight families, using an interpretative phenomenological analysis (IPA) approach. Two major themes emerged from the data: the impact of the illness and treatment on the child's current functioning, and how parents live day-today with the threat of future relapse or further long-term physical and psychological complications. A number of subcategories emerged from these themes, including the difficulties obtaining special educational needs, the manner in which children overcame their physical limitations and the problems caused by peer exclusion and bullying. In discussing the way in which parents and children cope with the problems caused by the tumour, and the possible clinical implications that have emerged from the data, we have drawn upon a number of theoretical concepts, derived from discrepancy theory and coping theory.

Implications for further use of the PedsQL 4.0 in the clinical or research context are discussed. Incidental findings highlight some limitations of the PedsQL 4.0 for work with this population.

Background: We report the health-related quality of life (QOL) of survivors of childhood cancer (acute lymphoblastic leukaemia, ALL, or central nervous system, CNS, tumour), and whether or not they had growth hormone deficiency (GHD) requiring growth hormone treatment (GHT). Method: We assessed 77 survivors of childhood ALL (n = 51) or CNS tumours (n = 26), aged between 8–18 years, and free from disease for ≧4 years. Survivors and their mothers independently rated survivors’ QOL, and mothers completed semi-structured interviews to determine their views of the benefits and disadvantages of GHT. Results: Survivors, especially those treated for a CNS tumour, reported poorer QOL compared with UK population norms. Although survivors of ALL reported better QOL than survivors of CNS tumours, there were no differences depending on whether or not they were prescribed GHT. However, mothers reported that those prescribed GHT had worse QOL than those not. All but 2 survivors were responsible for their own injections. A minority of mothers were disappointed with the child’s rate of growth, and reported that children experienced pain with injections. Conclusion: We conclude that QOL in survivors of childhood cancer is compromised compared with the normal population, especially following CNS tumours. Longitudinal studies are vital to determine whether GHT can contribute to improved QOL for cancer survivors, especially those who experience more intensive initial therapy regimes.

Survivors of childhood cancer are at risk of compromised physical and psychological functioning as a result of disease and treatment. However, survivors experiencing similar physical problems vary considerably in their self-reported Quality of Life (QOL) raising questions about the processes underlying adjustment and maintenance of QOL. Seventy seven survivors of either Acute Lymphoblastic Leukaemia (ALL) or tumours of the Central Nervous System (CNS) completed a standardised measure of QOL and semi-structured interview. Based on theoretical assumptions that QOL reflects a difference between what survivors can, and would like to be able to do, interviews were coded for reports of discrepancies and any coping strategy employed. Survivors of tumours of the CNS reported worse QOL and more discrepancies than survivors of ALL. A significant relationship was found between QOL measured by questionnaire and number of reported discrepancies. Five kinds of strategies to reduce discrepancies were identified: changing activity, devising a ''plan of action'', emotional denial, making social comparisons, and seeking social support. Survivors who reported neither discrepancies nor strategies had better QOL than those who reported both discrepancies and strategies or discrepancies but no strategies. Data are discussed in terms of rehabilitation of survivors of childhood cancer.