Giving Voice to Patients: Developing a Discussion Method to Involve Patients in Translational Research

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development (R&D) to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method for involving patients in (translational) biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in (translational) biomedical research. It should enable patients (1) to put forward their experiential knowledge, (2) to develop a rich view of what an envisioned innovation might look like and do, and (3) to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation.     

A Study on the Linkages between Residential Satisfaction and the Overall Quality of Life in Bandar Tun Razak Area of Kuala Lumpur City,Malaysia

This paper provides an assessment of the links between residential satisfaction with the housing sector and the overall quality of life (QOL) in Bandar Tun Razak area (BTR). As the QOL concept is multidimensional, five domains were selected to measure the overall QOL namely; economic capacity, safety condition, social involvement and community participation, physical and emotional health, and spiritual life. While for the housing sector, the study involved 32 indicators that cover the different housing features. Besides, In order to obtain a representative sample, a stratified convenient sampling was employed and 331 questionnaires were collected. The findings show that respondents were slightly unsatisfied with safety condition and economic capacity, whereas they were only slightly satisfied with social and community participation which require further attention to the improvement of these three domains. Moreover, Exploratory Factor Analysis (EFA) was applied on the housing indicators resulting in the extraction of five factors which are: housing size, neighbourhood quality, public facilities, housing suitability, and housing quality. Among these five factors, it was found that the housing size affects the overall residential satisfaction highly. Eventually, a path diagram was employed to measure links between the housing sub-domains and QOL domains. The results show that the housing size and public facilities influence the economic capacity domain effectively. While the neighbourhood quality and housing suitability affect both safety condition and social and community participation domains.     

A Cyberbullying Intervention for Hong Kong Chinese College Students

A cyberbullying intervention was developed and empirically tested with 137 Hong Kong Chinese College students. The intervention was designed to change students’ attitudes about cyberbullying behavior and increase their awareness of cyberbullying. Participants were assigned to an experimental or control group. They completed questionnaires before the intervention (Time 1; T1), immediately after the intervention (Time 2; T2), and again eight weeks later (Time 3; T3). The experimental group participated in a 1-h intervention where they were presented with a simulated Facebook page showing the helpless feelings of cyber-victims, watched video clips of the consequences of cyberbullying, and engaged in small group discussions and a self-reflection writing task. Results showed that participants who received the intervention experienced an increase in their awareness and had more negative attitudes toward cyberbullying (i.e., the perception that cyberbullying is unacceptable behavior) than did the control group. In addition, those who reported being highly engaged in the intervention maintained the positive effects at the 8-week follow-up. The results demonstrate the feasibility and effectiveness of a short-term cyberbullying intervention for college students and that level of participant engagement contributes to its effectiveness.     

Cognitive-Behavioural Group Therapy for Pure Victims with Internalizing Problems: An Evidence-based One-year Longitudinal Study

The present study evaluates a specific cognitive-behavioural group intervention for pure victims of school bullying, employing a longitudinal design with mixed methods. 68 high-risk pure victims were identified from 5071 schoolchildren through screening measures and structured interviews, and assigned to 10 treatment groups. They completed a self-report questionnaire comprising measures of anxious/depressed problems and peer victimization prior and after the treatment, and at 1-year follow-up. The students, their teachers, and parents/guardians also received structural interview assessing students’ cognition, affection, and behaviour pertaining to peer victimization before and after the intervention. The results showed that the students’ physical, verbal, and total victimization, social exclusion, and depressed-anxious scores decreased from the pre-test to the one-year follow-up. They also reported a more realistic self-image, less self-blame, more positive outcome evaluation, less fearful, and employ more rational strategy when encountering problems in post-test interviews. Teachers and parents also noted the student experienced less peer victimization, had learnt to speak up against victimization and was less isolated in class. The results suggested the CBT program was effective for treating pure victims with internalizing problem.     

Quality of Life and Globalization: Evidence from Islamic Countries

This study analyzes the relationship between three dimensions (economic, social, and political) of globalization and quality of life using a panel of 44 Islamic countries from 1970 to 2010. Using different estimation techniques, we find that overall globalization has a robust positive effect on quality of life, even when controlling for income, dependency ratio, literacy, number of physicians, and other factors. Nevertheless, the results do not hold for all forms of globalization. Economic and political forms of globalization tend to improve quality of life. In contrast, social globalization does not improve quality of life.     

Quality of Life in Flemish Families with a Child with an Intellectual Disability: a Multilevel Study on Opinions of Family Members and the Impact of Family Member and Family Characteristics

This study examined family members’ opinions regarding their family quality of life (FQOL). Parents (n = 97) and youngsters (n = 24) of 63 families with a child with an intellectual disability (ID) receiving home-based support completed the Beach Center FQOL Scale. Multilevel models detected substantial variability in FQOL scores and in most subscale scores both within and between families. The observed differences were partly explained by the respondent’s age, the parents’ employment situation, and the support needs of the child with an ID. Role of the family member and gender of the parent could not explain this variability. By including and comparing multiple family members’ opinions, this study contributes to the methodological and conceptual discussions about measuring FQOL.     

Influential Factors of Poverty Dynamics among Korean Households that Include the Aged with Disability

The purpose of this longitudinal study was to examine closely the economic status of households that include the aged with disabilities in South Korea, as well as the factors contributing to their poverty dynamics. This study analyzed the poverty dynamics of households that include the aged with disabilities by using data from the Panel Survey of Employment for the Disabled for the years 2008 to 2012. This Survey is conducted by the Korea Employment Agency for the Disabled. Poverty dynamics were classified by the changes in poverty status in 2008 and 2012, including sustained poverty, sustained non-poverty, poverty exit, and poverty entry. We carried out a multinomial logistic regression for poverty dynamics based on demographics and analyzed the differences of income composition and consumption patterns according to poverty dynamics. Gender, education, degree of disability, economic activity, and change in the number of employed family members were identified as significant factors that determine poverty dynamics.     

Human Enhancement and the Anthropology of the “Entire Human Being”

About one and a half decades ago, two prominent reports were published in the United States (US) which strongly influenced subsequent international discussions on the topic of human enhancement: a 2002 report on “converging technologies for improving human performance”, based on a workshop which was organised by the US National Science Foundation (NSF) and the US Department of Commerce in December 2001, and the first report of US President George W. Bush’s Council on Bioethics (PCBE), published in October 2003 with the title Beyond Therapy: Biotechnology and the Pursuit of Happiness. The 2002 report included a wide variety of contributions from academics in various fields of research, from representatives of US institutions, and from companies. Due primarily to the influence of the two NSF staff editing the report, it can be regarded as the first major instance of the influence of transhumanism, a techno-futurist ideology and movement, on the US technology and innovation discourse. The PCBE report, on the other hand, is a prime example of a conservative critique of the transhumanist notion of human enhancement. In this invited contribution, these two crucial publications are analysed mainly in order to point out the relevance of philosophical anthropology as developed since the 1920s by Helmuth Plessner and others. This remarkable school of thought is experiencing a revival in countries such as Germany and the Netherlands, and, to some extent, in the English-speaking world. In this article, it is argued that philosophical anthropology provides us with an important alternative to both anthropological essentialism and scientism, two approaches that are still highly relevant in current discourse on human enhancement.