Development of a Parent Version of the Manchester-Minneapolis Quality of Life Survey for use by Parents and Crers of UK Children: MMQL-UK (PF).

Background Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report.

Return to Hanging Rock: Lost Children in a Gothic Landscape

Using the philosophical position of phenomenology this article examines the ways in which ideas of wildness combine with Australian Gothic tropes such as the white colonial lost child and the bush as a haunted locale to compose key features of an Australian Ecogothic. Joan Lindsay’s enigmatic novel Picnic at Hanging Rock (1967) has prompted scholars such as Lesley Kathryn Hawkes to describe how in Australian literature for both adults and children ‘the environment is far more than a setting or backdrop against which the plot takes place’ (Hawkes, 2011,67). On St Valentine’s Day in 1900 three young Australian girls and their teacher disappear from a school picnic at the ancient site of Mount Macedon in Victoria. The analysis, which focuses on Lindsay’s posthumously published chapter eighteen (1987) examines how elements of the material, sensing world combine with the mythological or sacred to connect the human protagonists with the gothic landscape they inhabit. The resulting intersubjectivity problematizes colonial ideology and unsettles notions of national identity. Using the philosophical position of phenomenology this article examines the ways in which ideas of wildness combine with Australian Gothic tropes such as the white colonial lost child and the bush as a haunted locale to compose key features of an Australian Ecogothic. Joan Lindsay’s enigmatic novel Picnic at Hanging Rock (1967) has prompted scholars such as Lesley Kathryn Hawkes to describe how in Australian literature for both adults and children ‘the environment is far more than a setting or backdrop against which the plot takes place’ (Hawkes, 2011,67). On St Valentine’s Day in 1900 three young Australian girls and their teacher disappear from a school picnic at the ancient site of Mount Macedon in Victoria. The analysis, which focuses on Lindsay’s posthumously published chapter eighteen (1987) examines how elements of the material, sensing world combine with the mythological or sacred to connect the human protagonists with the gothic landscape they inhabit. The resulting intersubjectivity problematizes colonial ideology and unsettles notions of national identity.