Co-designing with adolescents with autism spectrum disorder: a participatory action research approach

Randy Zhu investigated how adolescents with autism spectrum disorder (ASD) can participate as co-designers in an extended iterative software design process. He found that participants expect to make design decisions for applications built for them and parents, community group and fellow participants play a pivotal role in supporting a longitudinal ASD co-design study

Service users’ participation in mental health community-based organizations

Une grande proportion de personnes aux prises avec des problèmes de santé mentale vit dans l’isolement social. Les infirmières en santé communautaire sont interpellées au premier rang pour accompagner ces personnes dans leur processus de rétablissement et pour atténuer leur isolement social. La participation au sein d’organismes communautaires optimise l’expérience de rétablissement, diminue l’isolement social et renforce les réseaux sociaux de personnes ayant des problèmes de santé mentale. Toutefois, la participation des personnes utilisatrices de services dans la structure d’organisation des organismes communautaires est encore peu documentée. Afin de pallier cette lacune, cette étude avait pour objectifs de documenter, décrire la nature de la participation des personnes utilisatrices de services en santé mentale et d’explorer des facteurs facilitatants et des barrières à cette participation. Un devis de méthodes mixtes, qualitatif et quantitatif, a été utilisé. Dans le premier de deux volets, une enquête impliquant la réalisation d’entretiens semi-dirigés a été menée auprès de douze directeurs d’organismes communautaires œuvrant dans le domaine des services en santé mentale. Une version française du questionnaire « Adapted User Involvement » (Diamond, Parkin, Morris, Bettinis, & Bettesworth, 2003) a été administrée afin de documenter l’étendue de la participation des personnes utilisatrices de services dans les organismes visés. Pour le deuxième volet, deux organismes communautaires ont été sélectionnés à partir des résultats du questionnaire et de l’analyse documentaire de documents publics de ces organismes. Les scores obtenus au questionnaire ont ainsi permis de sélectionner des organismes présentant des résultats contrastés en matière de participation des personnes utilisatrices de services. Les entretiens semi-dirigés ont été menés avec différents groupes de répondants (membres de conseil d’administration, personnes utilisatrices de services, employés, directeurs) afin de recueillir de l’information sur les thèmes suivants: la nature de la participation des personnes utilisatrices de services, ainsi que les facteurs facilitants et les défis qui y sont associés. Les résultats de l’analyse montrent que: (1) les facteurs qui favorisent la participation des personnes utilisatrices sont: l’accès à un espace de participation pour les personnes utilisatrices et l’accompagnement de celles-ci par les intervenants de diverses disciplines pendant leur participation au sein des organismes communautaires, (2) les barrières de la participation des personnes utilisatrices au sein des organismes communautaires sont la stigmatisation sociale et les caractéristiques personnelles reliées aux problèmes de santé mentale chez les personnes utilisatrices, et (3) les avantages principaux de la participation des personnes utilisatrices de services se déclinent en services mieux adaptés à leurs besoins et leurs demandes, en leur appropriation du pouvoir (dans leur participation dans l’organisme communautaire) et en leur sentiment d’appartenance à l’organisme. À la lumière des ces constats, l’accompagnement des personnes utilisatrices de services dans leur participation apparaît une avenue prometteuse pour les infirmières en santé mentale communautaire afin de faciliter leur appropriation du pouvoir et d’améliorer leur bien-être.A large proportion of individuals with mental health problems are affected by social isolation. In the front line, community mental health nurses are called upon to accompany these individuals in their recovery process, and reduce their social isolation. User participation in community-based organizations (CBO) optimizes the recovery process, decreases feelings of social isolation, and consolidates the social support networks of individuals living with mental health problems. However, relatively little is documented on user participation within the organizational structure of mental health CBOs. To address this knowledge gap, the objectives of this study were to document, describe the nature of user participation and explore facilitating and inhibiting factors associated with user participation. A mixed-method (qualitative and quantitative) design, broken into two phases, was used in this study. In the first phase, a survey of twelve directors from CBOs providing services to individuals with mental health problems was conducted using the format of semi-structured interviews. The French version of the “Adapted User Involvement Questionnaire” (Diamond et al., 2003) was administered in order to document the extent of user participation in the targeted CBOs. In the second phase, two CBOs were selected on the basis of the results of the questionnaire and the findings of the archival data analysis. The scores obtained by the administration of this questionnaire made it possible to choose CBOs with constrasting results on user participation. Different groups of key informants (members of the governing board of the CBO, service users, CBO staff and directors) from the two CBOs participated in semi-structured interviews to collect detailed information about the following themes: the nature of user participation and facilitators and inhibitors for user participation. Results of the analysis show that: (1) factors that facilitate user participation are : access to participatory space for service users and professionals of different disciplines supporting service users in user participation activities; (2) factors that inhibit user participation are : social stigmatization of individuals with mental health problems and service users’ personal characteristics associated with their mental health problems; and (3) advantages of user participation are: services adapted to users’ needs and requests, service user empowerment (in participating in organization of CBO services) and service users’ sense of belonging to the CBO. Consequently, the study’s findings suggest that accompanying service users in their participation in CBOs, in order to facilitate their empowerment and improve their well-being, is a promising avenue for community mental-health nurses

Using social media to widen young people’s participation in social work education: final report for Nominettrust

Using a systematic review approach, this study set out to identify social media resources currently used by service users to share knowledge and experience, in order that they could be used to widen young people’s participation in social work education. Resources found were included in a database available to Higher Education Institutions (HEIs) to support and promote the use of these sites. The review was undertaken in partnership with young service users. The Review question was: • How do interventions/services using new social and other digital media technologies promote children and young people’s participation? Sub-questions were: • How do such interventions/services conceptualise participation? • What are the perceived facilitators and barriers of participation? • What are the implications for engaging young service users in social work education? A review of published literature provides a foundation to understand how and in what ways social media is currently being used and suggest ways in which it might be used in the future. In addition to academic studies, this project reviews social media, e.g. social networks, blogs, video conferencing, used by users of personal services to share experiences and contribute to knowledge. Social media resources identified are presented in tabular form and are also made accessible though the inclusion of hyperlinks to a range of digital material. Finding of this study suggest that social media is currently being used by adults for two purposes, to promote civic participation or to socialise young people. Consequently the potential biases and shortcomings of face-to-face communication between service providers and service users can be reproduced in online forms of communication. Conclusions drawn include: • Genuine engagement with young people requires digital technologies to provide complementary, more empowering public spaces and channels for expression which may lead to social change. • There is a need to consider ways group membership is constructed and established, both in terms of involvement in social work education in general, and in providing mechanisms that support the use of social media to facilitate this. The report concludes by making recommendations for future actio

ICT Intervention-Research in a mental health clinic in Brazil

AbstractThis article discusses the use of intervention-research as a qualitative method that aims to explore how knowledge production can be affected and transformed by an intervention. We describe and examine four levels of reflexive feedback within an intervention experience using information and communication technology (ICT) workshops in a mental health clinic for children and adolescents in Porto Alegre/Brazil. It is argued that an intervention can generate a rich reflexive experience which can challenge the research group’s misconceptions, the participants’ reflexive notions, institutional common sense and the research directions. It can be said that the methodology also enables the exploration of new capacities and emotions not only by children and teenagers, but by everyone involved.Keywords: Intervention-Research; Qualitative Research Methods; ICT Workshops; Mental Care. ResumoO presente artigo discute o uso da pesquisa-intervenção como um método qualitativo que tem por objetido explorar como a produção de conhecimento pode ser afetada e transformada pela intervenção. Em particular, descreve e analisa quatro níveis de retroalimentação reflexiva em uma experiência de intervenção utilizando oficinas de tecnologias de informação e comunicação (TIC) em um serviço de saúde mental para crianças e jovens de Porto Alegre/Brasil. Argumenta que a pesquisa-intervenção pode oferecer uma importante experiência reflexiva que questiona as concepções da equipe de pesquisa, as noções dos participantes e o senso-comum institucional e todos esses fatores podem deslocar as direções da pesquisa. A metodologia também permite a exploração de novas capacidades e emoções, não somente para crianças e jovens, mas para todos os envolvidos no processo.Palavras-chave: Pesquisa-Intervenção; Metodologia Qualitativa; Oficinas com TIC; Saúde Mental.

Understanding Caregivers of Native Hawaiian Kūpuna with Age-Related Memory Loss on One Hawaiian Homestead.

Ph.D. Thesis. University of Hawaiʻi at Mānoa 2018

Research inventory of child health: A report on roadmaps for the future of child health research in Europe

RICHE was the response to a call under HEALTH-2009-3.3-5, with the title of 'European child health research platform'. The call text asked us to “address the diversity and fragmentation in child health research in Europe in an inclusive multidisciplinary way, identifying existing research programmes in Member States, recent advances and identification of gaps to explore road maps for the future of child health research in Europe”. Project structure A consortium, with a final total of 23 partners, and two associate (i.e. unfunded) partners, responded to this call. We designed a project with a linear structure, where the main focus of activity moved from work on the Inventory, and Indicators and Measurement, in Year 1, to work on Gaps in Year 2, finishing with the preparation of the Roadmap in year 3. The final 6 months (Year 4) were largely dissemination. The Platform, which is instantiated in our website, supported all of the other parts,, and was a focus for communication and dissemination throughout the project. Each workpackage focused on a specific area of work, but each fed into its successors, and all leaders and partners worked closely together. Each group produced a number of technical reports and other outputs. The final output was a Roadmap for future investment in European child health research. This has been widely disseminated, and has fed at Commission level and National level into the Horizon 2020 call preparation process. RICHE Roadmap The RICHE Roadmap is based upon a sound, scientific evidence base, which we had gathered as part of our earlier work. The project prepared an inventory of child health research and of measurements and indicators of child health in Europe (WP1 and WP2) . This was collated using a web platform – which can be found at www.childhealthresearch.eu. In addition to this exercise, a formal study of the gaps in child health research was undertaken by carrying out surveys and interviews of researchers and research users across Europe (WP3). This allowed our initial views on the research gaps to be refined and corrected by an iterative process, involving, both project partners, and the wider scientific community, so seeking grounding and validation for this key phase. These results formed the basis for the RICHE Roadmap. The Roadmap is based on a life-course perspective. It covers the important phases of a child’s development, including maternal health, and pregnancy, through to adolescence and the protective and risk factors, and health services encountered throughout childhood and adolescence as he or she moves towards adulthood. RICHE looked upstream to identify where more work needed to be done to prevent avoidable physical and mental ill-health, disability and death in the population of European children aged 0-18 years. This shows how the many influences and outcomes of children’s health are interrelated; a pattern reflected in the Roadmap. The work necessarily involved a series of value judgements, especially on setting priorities, because there are no objective and unconditionally valid answers to the question “Is there enough research on this topic?”, nor to the question “Is this a topic of significance?”. Nevertheless, the RICHE Roadmap uses an inclusive and transparent process to explain the recommendations it made, and the subjects it chose, making our values, and the reasons for judgements as explicit as possible. The report is organised into broad subject areas, that reflect the key ‘gaps’ in knowledge about children and young people, or about particular aspects of their lifestyle and health. These key areas, and selected findings within each area, are briefly summarised here. Life Course and Lifestyle This section focuses on children as they age, and recognises the importance of continuing to research how factors before conception, during gestation and in the very early years of life can affect present and future health. The challenges that children face as they grow up are also highlighted – these can be created because of policy decisions that fail to take account of children and young people’s lives or because of the pervasive influences of individual circumstances that act ask protective or risk factors for children’s actions. The concept of resilience in childhood is also highlighted, and how research needs to focus on this important and powerful means of improving children’s lives. A key issue, throughout the life course, is mental health and well-being. Fostering well-being in children from birth, and throughout childhood will provide numerous individual and societal benefits. It deserves a greater research focus. Socio-economic and Cultural Factors The socio-economic and cultural environment in which a child is born and grows up has a potent effect on a child’s health and well-being. Inequity and inequalities in health, between and within nations depending on socio-economic circumstances, are known to affect health outcomes. Those in the poorest areas have worse health, and shorter lives than those in the wealthiest areas. Other groups are at risk of marginalisation from health services and from opportunities that can maximise their health. These include migrant children where the question is how best to support their integration into their new societies and communities, while retaining their individual identity; children in the state care system have poor health and social outcomes, so improving these, by focused research is important for the future health of these children; children from minority population groups, in particular those who travel across nations, such as the Roma, need to have focused attention, to ensure that their health outcomes begin to match those of the general European child population. Social and Community Networks The main influences on children and young people are their immediate family and community networks. This extends from the influence of the family as a warm and nurturing environment in which to grow up – and conversely a place of the most profound danger and threat if such a family environment is toxic; to the wider influence of school, and finally the broader community. Becoming engaged and involved in community life is beneficial for the entire population, not just for the children and young people directly involved. It is an aspect of children and young people’s experience that is important for well-being and social inclusion. Environment The term 'environment' covers several different concepts, and the RICHE Roadmap describes the physical, virtual and also the perceived environment – all of which interlink in children’s lives, and have a profound effect on their health and development. These include the physical environment, the virtual (digital) environment, physical safety, including injury prevention, and protection form crime, anti-social behaviour and violence (both as perpetrators and victims). Complex Health Issues The majority of children in Europe are healthy, and ill-health is not a characteristic of this population as it is in, for example, an ageing population. However, there are certain health issues that affect children, and as such can blight an entire lifetime. Our Roadmap does not cover clinical issues, but takes a population perspective. There are certain disorders that have a population-wide effect and are prevalent enough in the child population to warrant particular attention from a public health viewpoint. Four specific areas of concern were identified – overweight and obesity, mental health, sexual and reproductive health, and neuro-developmental disorders. Health Services The main research needs of the health services focuses on the prevention of poor health. Comparing health services across Europe and evaluating the means of conveying health promotion messages are important directions for health research to investigate. Indicators need developing which reflect the effect of preventive actions, particularly among younger children. Vulnerable populations, such as those in deprived communities, need to have health prevention services particularly targeted. There is little systematic evaluation of such interventions, which compromises the development of new interventions and their implementation. Those who do not access services and those who need particular attention can be identified. Public Health Infrastructure Health surveillance is essential so that health needs can be identified and addressed effectively for the benefit of the child population. Yet, many existing sources of data are neither analysed, nor made available in a child-centric way. Children need to be made more visible in the data so that they can have more effective health promotion and health care on a population level. Specific examples include work on autism and morbidity due to injury. Europe also needs to establish proper measures and indicators of children’s health and children’s lives. We cannot act properly without first identifying and measuring the problem. Electronic health records are an emerging technology that has great potential, both for research, and for improved access to care. They need to be developed and investigated further to encourage their use across the European Union. Improving Research Capacity It is necessary to ensure that there are enough resources, both to do research, and to make use of the research findings. To sustain research activity, specialist training for junior child health researchers is needed, as are sufficient resources to maintain a critical mass of researchers and provide attractive career paths for them. Children and young people as subjects of research need to continue to be safeguarded by a consistently ethical framework, and information collected about children needs to be accurate, comprehensive and used intelligently so that interventions and services can be correctly directed. Using the roadmap The roadmap is a complex document, addressed to a number of different stakeholders. One key group are those who make decision bout research finding priorities. We have disseminated the roadmap widely at EU level, to reach into the process of priority setting for Horizon 2020. This has been done thought National Contact Points in each partner country, through relevant NGO's, and by sending copes to and meeting with relevant parts of the European Commission. Readers using the roadmap will most likely use it in two ways, first to make a general case for investment in Child Health Research, and secondly to target that investment, by considering the questions we have identified, and reviewing our justifications for these choices. We do not expect our work to determine future investments in child health, but we are confident that using our work would lead to better decisions overall. Conclusions Our core value is to put children first in our work. We take the rights of the child seriously, and we are conscious that many children do not have the opportunity to exercise the right to health and healthcare that European children they ought to have. The topics in this Roadmap are pragmatic in that they are researchable (within the grasp of presently available research methods and resources) and that are likely to have a significant effect on the lives of European children. This will go a considerable distance in improving the health and well-being of European children who may not have benefited from Europe’s good fortune up until this point. At the very least, the RICHE Roadmap aims to begin a serious conversation across Europe about the need for research to focus on children and how this will ultimately benefit all members of the European population. There is a need for children to become substantially more visible in European society. At present many children’s lives are invisible to health surveillance and to research. Sometimes they are submerged with their families, as in the case of Roma or for children of illegal and undocumented immigrant families. Even in well-documented societies, children’s circumstances are invisible as data are collected from the perspective of economically active adults, or households. Therefore, an overarching recommendation in this road map is the establishment of a European Child Health Observatory with a simple remit to make European Children, and their lives, health and attainment of rights more visible. We also recommend continuing and extending the discussion to the edge of existing child health boundaries, to address topics such as the effects on children’s health of urban design and architecture, fiscal policy (which can affect many health issues), welfare, or health effects of immigration policy. The RICHE Roadmap hopes to point the way in which children can be fully recognised and respected as forming a valuable population and whose health and well-being contributes to the health of our present and future European society

Workplace Violence and Security: Are there Lessons for Peacemaking?

Workplace violence has captured the attention of commentators, employers, and the public at large. Although statistically the incidents of workplace homicide and assault are decreasing, public awareness of the problem has heightened, largely through media reports of violent incidents. Employers are exhorted to address the problem of workplace violence and are offered a variety of programs and processes to prevent its occurrence. Many techniques, however, conflict with values that are critical to achieving sustainable peace. We focus on types of workplace violence that are triggered by organizational factors. From among the plethora of recommendations, we identify those responses that are most and least consistent with positive peace. We find that processes that promote privacy, transparency, and employee rights hold the most promise for peacemaking. We submit that such structures and processes can be transportable beyond the workplace to promote peace locally, nationally, and globally.http://deepblue.lib.umich.edu/bitstream/2027.42/39920/3/wp535.pd

The Australian workplace barometer: report on psychosocial safety climate and worker health in Australia

The Australian Workplace Barometer project aims to provide science driven evidence of Australian work conditions and their relationships to workplace health and productivity, through a national monitoring and surveillance system. This report was commissioned by Safe Work Australia to provide a summary of the results from data obtained from six Australian states and territories: New South Wales, South Australia, Western Australia, Tasmania, the Australian Capital Territory and the Northern Territory. The data provides evidence relating to psychosocial risk factors in the working Australian population as well as an analysis of relationships between risk factors and employee health and motivational outcomes

Community Stakeholder Perspectives Around the Strengths and Needs of Unaccompanied Immigrant Minors

Unaccompanied immigrant minors (UIM) are youth who lack lawful immigration status and who are without a parent or guardian in the U.S. who can provide custody and care. By all accounts, UIM experience stressful and traumatic circumstances before, during and postmigration. Most UIM left their home countries due to economic stagnation, poverty, crime and gang-related violence (Kandel et al., 2014); almost half described fleeing societal violence and one in five described experiencing domestic abuse (UNHCR, 2014). During migration, UIM are vulnerable to human trafficking, kidnapping, and other abuses (Kandel et al., 2014). Upon resettlement, UIM sometimes experience extended stays in detention centers, community violence exposure in resettlement areas, and an uncertain future in the U.S., all without family support to buffer these stressors (Alvarez & Alegria, 2016). Not surprisingly, UIM are at increased risk for mental health problems compared to accompanied immigrant youth (Derluyn & Broekaert, 2008; Huemer et al., 2009). Research on protective factors is emerging, but scarce.This presentation describes community stakeholder perspectives around the strengths and needs of UIM. Stakeholders include academic researchers with experience working with UIM; key decision makers in agencies serving UIM; professionals with insider knowledge (e.g., immigration attorneys, psychologists with expertise in asylum evaluations); and community members participating in immigrant-focused coalitions. Stakeholder interviews identified significant need for support for UIM. They noted that UIM need emotional support before, during and after legal interviews when youth must recount traumatic events. Families need support during periods of separations and reunions, which can lead to uncertainty and unanticipated conflict, and foster families sponsoring UIM need parenting support for raising children facing difficult circumstances. Stakeholders also noted role conflicts that arise when simultaneously addressing the legal and mental health needs of UIM and the emotional toll that this work takes on professionals serving UIM