Self-perceived quality of life for adolescents with physical disabilities - a preliminary study

The purpose of this study was to explore the effect of physical disabilities (PD) on the quality of life (QoL) of adolescents aged from 10 to 18 years. Sixty-three adolescents with PD (aged 14.9 ± 2.4 years) from primary (5th grade or above) to high schools in Kaohsiung City volunteered to participate in this research; 282 children without disability (aged 13.8 ± 2.3 years) attending schools in the same geographical region were recruited as controls. The Student Version of the Comprehensive Quality of Life Scale was used in this study. This is a multidimensional self-report, global measure of subjective and objective QoL. Multivariate analysis of variance revealed that the two groups were significantly different in objective QoL (F = 11.53, p < 0.001). Material wellbeing was substantially lower in the PD group when compared to the control group. In contrast, domains such as productivity, safety, and emotion were higher in the PD group. Among the subjective scales, the PD group showed higher productivity and better emotion when compared to the control group. No significant correlation was observed between objective and subjective overall QoL scores (r = 0.20, p = 0.12) in the PD group. These findings showed that subjects with PD in regular schools demonstrated different patterns in objective and subjective QoL when compared to those without PD. Both subjective and objective domains are important when measuring QoL of adolescents with PD.

Sibling peer support group for young people with a sibling using drugs: a pilot study

Siblings of young people abusing drugs are at particular risk for drug abuse and other health compromising behaviors. A Sibling Peer Support Group was developed by the Centre for Adolescent Health (Melbourne, Australia) for young people aged 13 to 18 years with a problematic drug user in their family. Groups aimed to provide support and information, promote harm minimization, and reduce the sense of isolation. The project emanated from the recognized need for specific support for adolescent siblings of problematic drug users. Evaluation of two pilot groups indicated positive benefits for group members, who reported feeling better informed, more supported, and having a reduced sense of isolation. Parents reported that their adolescent attending the group demonstrated improved communication with, and greater understanding and tolerance of, the family member using drugs. Promising indicators at a community level were manifested in enthusiastic collaboration among schools, police and local service agencies, and the organization of a local drug forum. There appeared to be little evidence that the groups inadvertently encouraged drug use. Recruitment of young people into groups was the major challenge for the project, but among drug and alcohol and family organizations there was support for the concept of a Sibling Peer Support Group. A new model to overcome the challenge of recruitment is proposed.

Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.

Close, but still too far: the experience of Australian people with cancer commuting from a regional to a capital city for radiotherapy treatment

This paper reports the findings of a study undertaken in November 2001 on the experiences of 17 rural people from the regional city of Toowoomba who had been diagnosed with cancer and were required to travel to the capital city of Queensland (Brisbane) for radiotherapy. The interviews were tape recorded; the recordings were transcribed verbatim and analysed for emergent themes and subthemes, following verification by the participants that the transcription was a true record of their experience. The major themes that arose from the study were (1) the burden of travel; (2) the difficulties of living in accommodation that is not one's own home; (3) the financial burden caused by the need to relocate or travel to and from Brisbane; (4) the lack of closeness to family and friends; (5) and feelings of being a burden on others. The findings suggest that at a time of stress, an increasing burden is placed on cancer clients and their families if they are required to travel for radiotherapy. Health professionals who read the results of this study should be aware of the isolation of rural people who have to live in an unfamiliar environment at a time of great stress. Support mechanisms should be put into place in these referral centres to deal with these stressors.

Self-related quality of life scales for people with an intellectual disability : a reply to Ager & Hutton

An earlier publication by the present author concerning quality of life (QoL) measurement has been critiqued by A. Ager and C. Hatton. The present paper addresses the issues raised. It commences with a reappraisal of the Life Experiences Checklist and confirms the present author's view that this instrument is not adequate to measure QoL in accordance with contemporary understanding of the construct. It is argued that QoL scales should include both objective and subjective measurements across a minimum set of domains adequate to embrace the whole life experience. Finally, the usefulness of QoL measurement for people with intellectual disability is debated.

Health risk behaviours and health care needs among people with psychiatric illness

This paper presents findings from two studies. Study 1 explored differences between people with psychiatric illness (PPI) (N=144) and the general population (N=151) in levels of low-fat diet, exercise and smoking. Study 2 investigated barriers and health care needs of PPI (N=60). The prevalence of overweight, cigarette smoking and sedentary lifestyle were significantly greater among PPI than the general population. Major predictors were limited social support, knowledge of correct dietary principles, lower self-efficacy, psychiatric symptomatology and various psychotropic drugs. The findings demonstrated that PPI over-used medical services but under-used preventive services due to inaccessibility, lower satisfaction and knowledge of services.

Reducing the risk of abandonment of assistive technologies for people with autism

This paper reports on an investigation that found that conventional techniques for including users in technology design are likely to fail if the user has autism. The heterogeneity of autistic symptomatology across cognitive, social, behavioural and communication domains suggests a 'single user' environment, while rendering typical design interaction techniques meaningless, making the need for assistive technologies great, and the risk of abandonment high. This complex problem of urgency and constraint was addressed through a Delphi study with a panel of psychologists critiquing design activities for people with autism. The major finding is that while each of the activities may work if modified, all require that the designer is well acquainted with autism in general and has a close working relationship based on trust with the individual user. If these requirements are met, there is no reason that the abandonment rate cannot be reduced.