SO RARE, WHO CARES? A STUDY ON STRESS AND DIFFICULTIES ENCOUNTERED BY THE PARENTS OF CHILDREN WITH A RARE DISEASE IN HONG KONG

2020 ◽  
Vol 54 (01n02) ◽  
pp. 13-30
Author(s):  
JOHNSON CHEUK KIU LEE
Keyword(s):  
Hong Kong ◽  
Disease Management ◽  
Rare Disease ◽  
Rare Diseases ◽  
Family Relationship ◽  
Severe Disabilities ◽  
Research Approach ◽  
Structured Interviews ◽  
Delay In Diagnosis ◽  
The Government

Rare diseases are a group of chronic and complex genetic disorders characterized by low prevalence rate. About half of new cases present at birth and affect children with severe disabilities. There has been scant research studying the stress and problems of the parents of children with a rare disease. In Hong Kong, the government has no established policy for rare disease management. The special needs of people with a rare disease are undermined in the current healthcare and social welfare systems. A descriptive qualitative research approach was conducted to investigate the experience of the parents. Sixteen parents were recruited, and in-depth semi-structured interviews were conducted. Thematic analysis was performed with the Supportive Care Need Framework. Major stress encountered by the families was identified, i.e., delay in diagnosis, lack of professional support, financial stress of paying for expensive drugs, and medical expenses. Also, family relationship problems, psychological impact, depression, and suicidal thoughts were pervasive among the parents. This study demonstrates that rare diseases bring enormous stress to families. Early intervention of healthcare professional and social workers is essential in empowering these families. The Hong Kong SAR government has the responsibility to take an active stance: to establish a clear definition of rare diseases and establish a policy in rare disease management.

Management of Records in Adapted Buildings as Records Centres in Zimbabwe

Mousaion ◽  
2018 ◽  
Vol 35 (3) ◽  
Author(s):  
Samson Mutsagondo ◽  
Getrude Maduyu ◽  
Godfrey Tsvuura
Keyword(s):  
Qualitative Research ◽  
Case Study Research ◽  
Research Approach ◽  
Records Management ◽  
Personal Observation ◽  
Structured Interviews ◽  
Design Data ◽  
Professional Management ◽  
The Government

This paper discusses the challenges of records management that arise from the use of adapted buildings as records centres in Zimbabwe, despite the advantages of using such buildings. A qualitative research approach was used as well as a case study research design. Data were collected from seven officers of the Gweru Records Centre through semi-structured interviews. Personal observation was used to triangulate findings from interviews. It was found that the use of adapted buildings as records centres was a cheaper and quicker way of establishing records centres throughout the country. However, a number of preservation, security and management challenges cropped up as the conditions of the buildings and the environment of the adapted buildings were not conducive to the proper and professional management of records. This study is important in that it explores the prospects and challenges of using adapted buildings as records centres in Zimbabwe, an area that has not been researched by many authors. This provokes archival authorities and the government to seriously consider establishing purpose-built records and archival centres.

Successful collaboration between smart city consortium and Hong Kong Government in Covid-19 dashboard: the case of leadership in practice

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Daniel Jung Yue Chun ◽  
Wahid Abdul Nabsiah ◽  
Cheng Ling Tan
Keyword(s):  
Hong Kong ◽  
Smart City ◽  
Third Party ◽  
City Development ◽  
Structured Interviews ◽  
Content Type ◽  
Non Profit ◽  
Mass Collaboration ◽  
The Government

Purpose This paper aims to discover why such a public partnership project had been successful with a non-profit third-party alliance such as a smart city consortium (SCC) promoting smart city development. Design/methodology/approach This descriptive case study is primarily based on analysing data collected from various texts, public statements, media interviews and three semi-structured interviews with key members involved in the Covid-19 dashboard project. Findings The data and analysis reviews that both interpersonal and interorganisational trust, dedication and proactiveness of the leaders at SCC were major contributing factors to why SCC was able to partner with the Hong Kong Government in the Covid-19 dashboard in the first place and that the success was also a direct outcome of effective mass collaborative knowledge management activities. Research limitations/implications The research in leadership attributes and activities in the non-profit alliance has been few and this collaborative partnership between the alliance and the government is an example of the importance of further research in smart city leadership. Practical implications In deploying projects for mass collaboration and knowledge sharing in smart city development (which is multi-disciplinary in nature). there are still many new and evolving organisational practices and leadership matters that many business leaders and city managers can learn from. Social implications Smart city development projects involve the notion of sharing data in an open environment enabled by software and mediating tools. Successful projects such as this Hong Kong Covid-19 dashboard which serves a diverse audience can further promote the importance of an open data policy regime for the benefit of the public. Originality/value This case study covers a highly original and unique case study with the leaders at the SCC and representatives from the Hong Kong Government.

Minimisation and management strategies for refurbishment and renovation waste in Hong Kong

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ann T.W. Yu ◽  
Kelvin S.H. Mok ◽  
Irene Wong
Keyword(s):  
Hong Kong ◽  
Data Collection ◽  
Management Strategies ◽  
Government Support ◽  
Construction And Demolition Waste ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Demolition Waste ◽  
Content Type ◽  
The Government

PurposeThe capacity of landfills will reach saturation in the 2020s. There are more than 50,000 buildings in Hong Kong over 30 years old and which may require extensive refurbishment under the Mandatory Building Scheme. Additionally, most new owners/tenants tend to renovate their premises before moving in. Hence, there is an urgent need in Hong Kong, to explore strategies and measures to enable the development of effective refurbishment and renovation (R&R) waste management for such projects. The objectives of this paper are to investigate the process of R&R for identifying the perceived barriers and thereby the strategies for minimisation and management of R&R waste in Hong Kong.Design/methodology/approachDesktop study, semi-structured interviews, site observations and document reviews were used as the data collection methods to achieve the objectives of this research. Considering the nature and characteristics of the industry structure, the snowball sampling process was deployed for data collection. Thematic analysis and content analysis were used for data analysis. Waste minimisation and management strategies for R&R projects were then discussed and developed by the research team and a focus group meeting was held to validate the research findings. Six strategies were then proposed to the government.FindingsR&R projects contribute 10–20% of the construction and demolition waste. The barriers to recycling of R&R waste can be grouped into six major categories: (1) lack of sorting and storage spaces, (2) high cost, (3) insufficient government supporting policy, (4) complicated recycling processes, (5) immature recycling market and (6) insufficient public education. Also, six strategies are proposed in this study, which include (1) pre-refurbishment audit, (2) development of recycling market, (3) sea reclamation, (4) incineration, (5) government support and (6) education and research.Originality/valueThe strategies and measures proposed in this research could most adequately serve as reference for the government officials, building professionals and academic researchers. Such knowledge would make possible the development of effective strategies and measures for minimising and managing R&R waste.

Design incubatees' perspectives and experiences in Hong Kong

2020 ◽  
Vol 10 (3) ◽  
pp. 481-496
Author(s):  
Tiffany W.M. FONG
Keyword(s):  
Hong Kong ◽  
Financial Burden ◽  
Future Research ◽  
Structured Interviews ◽  
Business Incubation ◽  
Policy Makers ◽  
Content Type ◽  
Multiple Case ◽  
The Government ◽  
Start Ups

PurposeThis paper discusses the services and support from one of the government design-based business incubators in Hong Kong. The characteristics of a design business incubator are explained, and a multiple-case study indicates the perspectives of incubatees from different design disciplines after their graduation from the incubation programme.Design/methodology/approachThe research under discussion in this paper was based on eight design incubatees in different design disciplines within two years of incubation period, all of whom had participated in one of the government-funded business incubation programmes for designers in Hong Kong. The programme is unique because there are no other government-based incubation programmes for designers in Hong Kong. Semi-structured interviews were conducted to collect feedback from incubatees in areas ranging from terms of service to support of the incubation programme.FindingsThe services of training, mentorship and finance were found to be the most important to design start-ups. Financial support and flexible funding allocation were another important issue for design incubatees, but training in these subject areas was not included in the incubation programme. However, it was confirmed that funding provided may have helped a number of the incubatees in developing their start-up businesses as a result of the reduced financial burden and office allocation.Research limitations/implicationsThe research focused on one incubation programme because of the lack of incubation programmes for designers in Hong Kong, therefore future research which compares different types of business incubation programmes is suggested.Practical implicationsThe outcomes of the research not only identified the possible areas of development and improvement of business incubation in entrepreneurship but they will also be useful for the government, universities, institutions, designers, policy makers, entrepreneurs and practitioners. These, in addition to industry stakeholders who want to evaluate their entrepreneurship programmes and develop their plans for potential development in incubation- or entrepreneurial-related programmes or training, especially in the area of design, will find the results useful.

scholarly journals Managing corporate identities of non-profit organisations in the social welfare sector

2013 ◽  
Vol 5 (2) ◽  
Author(s):  
Lida Holtzhausen
Keyword(s):  
Social Welfare ◽  
Identity Management ◽  
Research Question ◽  
Corporate Identity ◽  
Research Approach ◽  
Full Potential ◽  
Structured Interviews ◽  
Non Profit ◽  
The Social ◽  
The Government

Present-day South Africa is characterised by many societal and developmental issues, such as HIV awareness and prevention, child-headed households, environmental protection, poverty alleviation, violence and victim aid. However, it is widely acknowledged that government alone cannot address these issues effectively. The role of non-profit organisations (NPOs) in addressing social and development issues is increasingly emphasised. NPOs work at grass-roots level and they can therefore, on the whole, identify societal vulnerabilities and risks earlier than the government sector. However, due to the economic recession, NPOs operate in a competitive environment where an increasing number of NPOs rely on a small number of donors and other resources. NPOs should therefore differentiate themselves from the competition in order to obtain public legitimacy and funding. Corporate identity management is important for NPOs to fulfil their role in social welfare and thus contribute to disaster risk reduction. The exploratory nature of this study dictates a qualitative research approach. Semi-structured interviews with management of five NPOs in the social welfare sector were conducted in order to provide an answer to the study’s research question: ‘To what extent do NPOs in the social welfare sector practise corporate identity management, in order to prevent and address social welfare risks?’ The research found that NPOs do not realise the full potential of managing their corporate identities. NPOs therefore do not take advantage of a strong and distinct corporate identity which would allow them to ensure their ability to assess, address, reduce and/or alleviate vulnerabilities and disaster risks.

scholarly journals The urgent need to empower rare disease organizations in China: an interview-based study

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Xuefeng Li ◽  
Zijuan Lu ◽  
Jianyong Zhang ◽  
Xiangyu Zhang ◽  
Shu Zhang ◽  
...  
Keyword(s):  
Rare Disease ◽  
Orphan Drug ◽  
Rare Diseases ◽  
General Public ◽  
Unmet Needs ◽  
Financial Resources ◽  
Western Countries ◽  
Disease Awareness ◽  
Patient Organizations ◽  
The Government

Abstract Background Each rare disease only affects a small number of population. However, a total of 7000 rare diseases may affect 10% of the population. Due to the severity and lack of rare disease awareness, rare disease represents a huge challenge for the healthcare system. In Western countries, patient organizations have been playing an integral role in raising awareness, advocating legislation, and supporting drug development. This study aims to assess the unmet needs of rare disease patient organizations in China, and identify their unmet needs, providing essential information for the government and legislators. Results A total of 28 individuals representing 28 patient organizations in China were interviewed. Most organizations do not have official registration, employees, written standard operation protocol, or reliable financial resources. Misdiagnosis or delayed diagnosis is common, and treatment is often lacking. Due to the lack of financial resources, no organizations have been able to sponsor academic research, unlike their counterparts in Western countries. As to challenges, 71.4% of interviewees listed lack of rare disease awareness among the general public, while 67.9% selected lack of financial resources. Further, only 7.3% of these organizations received support from the government, and 28.6% received support from the general public. As to recommendations to the government, 82.1% of interviewees selected special insurance programs for rare diseases because rare diseases have been generally excluded from the national medical insurance programs. In addition, 78.6% of interviewees recommended to stimulate rare disease research, 75% recommended to import orphan drugs, and 71.4% recommended legislation of an orphan drug act, highlighting the urgent need of therapies. Conclusions Due to lack of support and rare disease awareness, patient organizations in China are still in the early phase. To empower these patient organizations, the interviewees’ recommendations, including legislating orphan drug act and releasing official definition of rare diseases, should be considered by the government and legislators.

scholarly journals PRIORITY NEEDS REFERRED BY FAMILIES OF RARE DISEASE PATIENTS

2016 ◽  
Vol 25 (4) ◽  
Author(s):  
Geisa dos Santos Luz ◽  
Mara Regina Santos da Silva ◽  
Francine DeMontigny
Keyword(s):  
Rare Disease ◽  
Social Services ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Strong Impact ◽  
Structured Interviews ◽  
The Family ◽  
Priority Needs ◽  
The Impact ◽  
The Relationship

ABSTRACT Rare diseases cause strong impact in families and generate needs beyond those associated with the most frequent diseases. Some of these needs are the inclusion of new responsibilities and the relationship with the healthcare and social services. This study is aimed at identifying the priority needs of families of rare disease patients as perceived from the time of diagnosis. This is a qualitative study conducted with 16 relatives of rare disease patients who live in the state of Rio Grande do Sul. Data were collected from November 2012 to March 2013, through semi-structured interviews and submitted to content analysis, based on the bioecological system of human development. The results indicated the following priority needs: access to social and healthcare services; knowledge about rare diseases; social support structures; acceptance and social integration; preservation of personal and family life. It was concluded that (re)organizing services and meeting the specific needs are preconditions to qualify nursing care and soften the impact the rare disease has on the family.

scholarly journals Exploring the Roles, Functions and Competencies of Library and Media Teachers in Managing School Resource Centers and Supporting 21st Century Learning in Malaysian Schools

2020 ◽  
Vol 10 (1) ◽  
pp. 176
Author(s):  
Husain Hashim ◽  
Shamila Mohamed Shuhidan
Keyword(s):  
21St Century ◽  
Teaching And Learning ◽  
School Setting ◽  
Research Approach ◽  
Structured Interviews ◽  
Global Knowledge ◽  
School Students ◽  
Essential Information ◽  
The Government ◽  
School Resource

21st century skills are embedded in the Malaysian school curriculum to prepare and produce knowledgeable and responsible young citizens in coping with the challenges of the global knowledge economy. The trend has an impact on the roles of school resource centers (SRC), which are currently managed by the so-called library and media teachers (LMT). As the LMTs are appointed among school teachers who need to allocate and divide their responsibilities into academic teaching and SRC management, several issues are found from literature pertaining to their overburdened teaching tasks, lack of time and inadequate library management competencies. This has caused further shortcomings in service provision including poor implementation of information literacy and reading programs for school students. A qualitative research approach is adapted to investigate the roles, functions and competencies of LMTs in managing SRCs and supporting 21st century teaching and learning in the school setting. This study uses semi-structured interviews for data collection involving five (5) LMTs who provided insightful feedback towards understanding the aforementioned issues. The findings reveal essential information with respect to the roles, functions and competencies of LMTs and also identify relevant challenges that can disrupt the provision and delivery of SRC services, facilities and programs. This requires the attention of the government and school administration to enforce a better platform that enables the LMTs to uphold their roles and functions accordingly towards enhancing the 21st teaching and learning environment in Malaysian schools.

scholarly journals The relation between innovation sources and ICT roles in facility management organizations

2014 ◽  
Vol 12 (4) ◽  
pp. 368-381 ◽  
Author(s):  
Ada Scupola
Keyword(s):  
External Source ◽  
Facility Management ◽  
Strategic Orientation ◽  
Research Approach ◽  
Structured Interviews ◽  
Theoretical Understanding ◽  
Content Type ◽  
Innovation Activities ◽  
The Government

Purpose – The purpose of this paper is to present research findings on the relation between internal/external sources of innovation and information and communication technology (ICT) as a supporter/enabler of facilities management (FM) organizations, as well as on the strategic orientation towards open innovation of FM organizations. Design/methodology/approach – This study uses a qualitative research approach. The data collection includes qualitative semi-structured interviews with key FM managers and directors and secondary material such as company brochures, reports and information provided on the participating companies’ websites. Findings – The results show that the FM organizations in the study sample are starting to develop and engage in open FM service innovations, even though they still mostly conduct closed innovation activities. The findings show that FM organizations mostly take an ambidextrous strategic orientation towards FM service innovations, while they also embrace an exploration approach. Concerning the role of ICT in FM service innovations, the study shows that in the explorative organizations, ICT was mostly an enabler, while in the ambidextrous organizations, ICT mostly supported and enabled the innovations in question. Only in two innovation instances was ICT identified as having a utility role. Practical implications – The findings of this study challenge researchers and managers to rethink how and why a strategic orientation towards innovation, the sources of innovation and the role of ICT might affect service innovation in FM organizations. One important implication for FM managers and researchers is the importance that the government might have as an external source in fostering FM service innovations, especially in light of changing environmental requirements, such as energy consumption. FM managers should also consider how they could use ICT to improve and innovate FM services and service delivery and the kind of sources (external/internal) they should use to carry out this task. Originality/value – This paper contributes to the empirical and theoretical understanding of the sources of innovation and ICT as a supporter/enabler, as well as the strategic orientation towards innovation in FM organizations.

scholarly journals The Urgent Need to Empower Rare Disease Organizations in China: An Interview-Based Study

2020 ◽  
Author(s):  
Xuefeng Li ◽  
Zijuan Lu ◽  
Jianyong Zhang ◽  
Xiangyu Zhang ◽  
Shu Zhang ◽  
...  
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
General Public ◽  
Unmet Needs ◽  
Financial Resources ◽  
Essential Information ◽  
Western Countries ◽  
Disease Awareness ◽  
Patient Organizations ◽  
The Government

Abstract Background: Each rare disease affects a small number of population, and thus is neglected. However, a total of 7,000 rare diseases may affect 10% of the population. Due to the severity and lack of rare disease awareness, rare disease represents a huge challenge for the healthcare system. In Western countries, patient organizations have been playing an integral role in raising awareness, advocating legislation, and supporting drug development. This study aims to assess the unmet needs of rare disease patient organizations in China, and identify their unmet needs, providing essential information for the government and legislators. Results: A total of 28 individuals representing 28 patient organizations in China were interviewed. Most organizations do not have official registration, employees, written standard operation protocol, or reliable financial resources. Misdiagnosis or delayed diagnosis is common, and treatment is often lacking. Due to the lack of financial resources, no organizations have been able to sponsor academic research, unlike their counterparts in Western countries. As to challenges, 71.4% of interviewees listed lack of rare disease awareness among the general public, while 67.9% selected lack of financial resources. Further, only 7.3% of these organizations received support from the government, and 28.6% received support from the general public. As to recommendations to the government, 82.1% of interviewees selected special insurance programs for rare diseases because rare diseases have been generally excluded from the national medical insurance programs. In addition, 78.6% of interviewees recommended to stimulate rare disease research, 75% recommended to import orphan drugs, and 71.4% recommended legislation of an orphan drug act, highlighting the urgent need of therapies. Conclusions: Due to lack of support and rare disease awareness, patient organizations in China are still in the early phase. To empower these patient organizations, recommendations from these patient organizations should be considered by the government and legislators.

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