Representation of Patients With Rare Diseases in Spanish Media

There are more than 360 associations of patients with rare diseases in Spain that strive for visibility to obtain funding and encourage clinical pathologies. The Spanish Year of Rare Diseases has been a considerable effort to be part of media agenda since 2013 and a “collective voice” throughout the media has been encouraged with the international initiatives devoted to the cause. Over the past years, representation of patients with rare diseases in Spanish media has been very superficial, despite the renewed interest during the Spanish Year of Rare Diseases. Certain cases as “Paco Sanz” or “Los Padres de la Pequeña Nadia” have negatively affected this representation by using the disease to pursue economic benefit. This chapter reports on the representation of rare diseases through Spanish media and the way it evolved in the last 6 years. The findings highlight the effort that has been made by patient advocacy groups with rare diseases and their relatives and caregivers, who have been recognized and proactive to get the treatment and medication needed.

Leadership and Follower Voice: The Role of Inclusive Leadership and Group Faultlines in Promoting Collective Voice Behavior

We developed and tested a theoretical model to examine how and when inclusive leadership affected collective voice behavior in this study. We identified two voice-relevant mediators—group psychological safety (an emergent state) and information elaboration (a group process) to clarify the mechanisms between inclusive leadership and collective voice behavior. Further, according to the person–situation interaction approach, we brought the faultlines theory to the inclusive leadership literature and considered group faultlines as a positive moderator to maximize the effects of inclusive leadership. With a two-wave, two-source design, we collected data from 301 employees within 67 research and development groups in China. We found that inclusive leadership positively affected collective voice behavior through the mediating mechanisms of both group psychological safety and information elaboration. Additionally, this effect was stronger in high faultlines situation. The findings suggest that leaders should show inclusiveness to motivate collective voice, especially in groups with high faultlines.

Contesting Collective Representations of the Past: The Politics of Memory in South Korea

<p>Because monuments, memorials and other 'sites of memory' privilege particular collective interpretations of the past over others, they represent inherently contentious and political spaces. Contention over representing the past is particularly resonant in Korea, where sites of memory are imbued with strong, often polarised meanings. By focusing on two such sites in Korea, this thesis seeks to discuss the wider implications of the ongoing conflict over what representations of the past should be privileged. In Gwangju, the area surrounding the former provincial hall (docheong) is being redeveloped, part of the city's attempts to become 'reborn' as a capital city of human rights and democracy in Asia. However, to many citizens in Gwangju, this new image ignores the meaning that the city's dissident past holds for local communal understandings of identity. Conflict arose as citizens protested to keep the symbolism of the docheong intact, thus, helping to maintain local narratives of the past. In Seoul, Myeongdong Cathedral, a key symbol of protest and democracy in the 1970s and 1980s, is now having its meaning re-interpreted, as the Catholic Church de-couples religion from socio-political concerns. The conflicting meanings of Myeongdong Cathedral are representative of a wider divergence in Korean society, as apathy towards Korea's past grows among society at large while other segments appropriate the past to protest contemporary socio-political concerns. Ultimately, these Korean case studies emphasise that the meanings sites of memory convey are not fixed, and that groups are often able to appropriate sites to affirm their own narratives of the past and to emphasise their own collective voice. Therefore, sites that represent particular understandings of the past, while contentious, also provide a space for debate and, thus, help to understand ongoing concerns within wider society.</p>

Contesting Collective Representations of the Past: The Politics of Memory in South Korea

<p>Because monuments, memorials and other 'sites of memory' privilege particular collective interpretations of the past over others, they represent inherently contentious and political spaces. Contention over representing the past is particularly resonant in Korea, where sites of memory are imbued with strong, often polarised meanings. By focusing on two such sites in Korea, this thesis seeks to discuss the wider implications of the ongoing conflict over what representations of the past should be privileged. In Gwangju, the area surrounding the former provincial hall (docheong) is being redeveloped, part of the city's attempts to become 'reborn' as a capital city of human rights and democracy in Asia. However, to many citizens in Gwangju, this new image ignores the meaning that the city's dissident past holds for local communal understandings of identity. Conflict arose as citizens protested to keep the symbolism of the docheong intact, thus, helping to maintain local narratives of the past. In Seoul, Myeongdong Cathedral, a key symbol of protest and democracy in the 1970s and 1980s, is now having its meaning re-interpreted, as the Catholic Church de-couples religion from socio-political concerns. The conflicting meanings of Myeongdong Cathedral are representative of a wider divergence in Korean society, as apathy towards Korea's past grows among society at large while other segments appropriate the past to protest contemporary socio-political concerns. Ultimately, these Korean case studies emphasise that the meanings sites of memory convey are not fixed, and that groups are often able to appropriate sites to affirm their own narratives of the past and to emphasise their own collective voice. Therefore, sites that represent particular understandings of the past, while contentious, also provide a space for debate and, thus, help to understand ongoing concerns within wider society.</p>

Aids in action: a new movement led by Canadians living with HIV & its implications on critical anti-oppressive social work practice

Conducted by an HIV+ activist-researcher, the study reported upon in this MRP aimed to 1) explore the challenges and opportunities faced by a new movement led by Canadians living with HIV to place the affected community of people living with HIV/AIDS (PHAs) back to the forefront of the national HIV response; and 2) establish the key factors and conditions that may help strengthen this community-led effort. The qualitative study utilized the Positive People Centred Perspective as theoretical framework comprised of interviews with key Canadian HIV+ activists on their reflections of the recent efforts by the new Canadian Positive People Network (CPPN) to create a collective voice for Canadian PHAs and their views of the essential elements that are necessary for the network and movement to thrive. Results of the research will help strengthen the development of CPPN and inform critical, anti-oppressive social work practice and scholarship.

Aids in action: a new movement led by Canadians living with HIV & its implications on critical anti-oppressive social work practice

Conducted by an HIV+ activist-researcher, the study reported upon in this MRP aimed to 1) explore the challenges and opportunities faced by a new movement led by Canadians living with HIV to place the affected community of people living with HIV/AIDS (PHAs) back to the forefront of the national HIV response; and 2) establish the key factors and conditions that may help strengthen this community-led effort. The qualitative study utilized the Positive People Centred Perspective as theoretical framework comprised of interviews with key Canadian HIV+ activists on their reflections of the recent efforts by the new Canadian Positive People Network (CPPN) to create a collective voice for Canadian PHAs and their views of the essential elements that are necessary for the network and movement to thrive. Results of the research will help strengthen the development of CPPN and inform critical, anti-oppressive social work practice and scholarship.

AIDS In Action: A New Movement Led by Canadians Living With HIV & Its Implications on Critical Anti-oppressive Social Work Practice

Conducted by an HIV+ activist-researcher, the study reported upon in this MRP aimed to 1) explore the challenges and opportunities faced by a new movement led by Canadians living with HIV to place the affected community of people living with HIV/AIDS (PHAs) back to the forefront of the national HIV response; and 2) establish the key factors and conditions that may help strengthen this community-led effort. The qualitative study utilized the Positive People Centred Perspective as theoretical framework comprised of interviews with key Canadian HIV+ activists on their reflections of the recent efforts by the new Canadian Positive People Network (CPPN) to create a collective voice for Canadian PHAs and their views of the essential elements that are necessary for the network and movement to thrive. Results of the research will help strengthen the development of CPPN and inform critical, anti-oppressive social work practice and scholarship.