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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-to-day 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.

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: changin...

Aims To determine differences in ratings of quality of life (QOL) depending on respondent (mother or child) and implications for the validity of measures of QOL, and interpretation of scores. Method Forty-five survivors of acute lymphoblastic leukaemia (ALL) and 23 survivors of central nervous system (CNS) tumours and their mothers completed a generic measure of QOL: the Pediatric Quality of Life Inventory TM Version 4.0 (PedsQLTM4.0; Varni et al., 2001). Results Although correlations between mother and survivor ratings were largely moderate to good, further analyses showed that mothers reported QOL to be worse than survivors. Both mothers and survivors rated physical health worse than psychological health, and survivors of a CNS tumour had poorer QOL than survivors of ALL. Although survivors of ALL reported reasonably good physical health, their psychosocial health was more adversely affected. Conclusions Implications for further use of the PedsQLTM 4.0 in the clinical or research context are discussed. Incidental findings highlight some limitations of the PedsQLTM4.0 for work with this population.

The relationship between child- and parent-reported quality of life (QOL) and the effects of parental mental health, illness stressors, and child vulnerability was explored using two measures of QOL: the Pediatric Cancer Quality Life-32 (Varni et al., 1998a) and the Disquol (Eiser, Cotter, Oades, Seamark, & Smith, 1999). Thirty-two children with acute lymphoblastic leukaemia (mean age = 8.92 years) and 36 parents completed measures of QOL when attending routine clinic. In addition, parents also completed the General Health Questionnaire (GHQ-28), perception of the child's vulnerability, and illness-related stressors. Significant correlations were found between the overall scores on the two child-completed QOL measures, with a range of poor, moderate to good correlations found between the individual subscales. Poor to moderate concordance was found between child and parent reports. Children who self-reported poorer QOL had mothers who were more depressed. Parents who reported poorer QOL for their child reported more illness stressors and perceived their child as being more vulnerable. Assumptions that concordance between child and parent ratings of QOL is a necessary requirement for new measures of QOL are challenged.

Summary Objective To report the development and psychometric properties of a generic computer-delivered measure of quality of life (QoL) suitable for children aged 6–12 years: the Exqol. The theoretical model adopted is based on an assumption that poorer QoL is the result of discrepancies between an individual's actual (‘like me’) and ideal self (‘how I would like to be’). Method The Exqol consists of 12 pictures, each of which is rated twice; first in terms of ‘like me’ and second as ‘I would like to be’. The Exqol is delivered using a Macintosh Powerbook and takes approximately 20 min to complete. Data are reported for 58 children with asthma (Mage = 8.95 years) and 69 healthy children (Mage = 7.49 years). In order to determine validity of the Exqol, children with asthma also completed the Childhood Asthma Questionnaire (CAQ) and their mothers completed a measure of child vulnerability and caregiver QoL. Results Higher discrepancies were found for children with asthma compared with healthy children (P < 0.05). For children with asthma, significant correlations were found between discrepancy scores and two of the four subscales of the CAQ. Children who rated their asthma to be more severe also had higher discrepancy scores (P < 0.05). Conclusions The Exqol has acceptable internal reliability and validity and distinguishes between children with asthma and healthy children. These data provide preliminary support for the theoretical assumption that QoL reflects perceived discrepancies between an individual's actual and ideal self. Methodological refinements to the Exqol are suggested.

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.

Objective To report the results of a systematic review to determine the effects of parents' behavior on children's coping with cancer. Methods Searches were conducted using Medline, EMBASE, PsycLit, and articles were subsequently selected on the basis of predefined criteria. Results Twenty-four papers were identified. There were associations between parenting behaviors and child distress both before and during medical procedures. Parents who criticized the child, or apologized for what was happening had children who were more distressed. Parents who were very permissive had more problems with adherence to treatment regimens. Conclusions Parents' behavior is critical in determining children's responses during procedures and adherence to home care. There has been less work concerning how parents manage more everyday problems, such as encouraging the child to go to school. Longitudinal studies are recommended to determine how parenting behaviors affect longer term child adjustment. These findings may be helpful for clinic staff to understand parents' reactions, and may also inform the content of intervention programs. © 2003 Wiley-Liss, Inc.

Objective To report the results of a systematic review to determine the psychological consequences of surviving childhood cancer. Methods Searches were conducted using Psyclit, Medline, Cinahl, and Bids and articles selected on the basis of predefined criteria. Key information was extracted to data sheets and these were rated by two coders. Results Twenty studies were identified, seventeen from the United States. Survivors did not show deficits in measures of anxiety, depression, or self-esteem when compared with population norms or matched controls. Survivors of some cancers (bone tumors) have poorer outcomes. Conclusions The results of this review support findings of previous descriptive reviews. Methodological problems include poorly reported medical information (for example, time since diagnosis), heterogeneous samples, self-selection of participants, poorly chosen/lack of suitable measures, and a lack of longitudinal work. Findings are discussed in terms of the need for cross-cultural work on adjustment to childhood cancer, the need for studies to take on a more developmental approach, and for greater national and international collaboration.