Collecting resilience points for a smooth transition to adult healthcare services:co-creating a playful resource for Spina Bifida.

Background: The transition of young people with a disability or a chronic health condition, from paediatric to adult focused health and social care services, in Scotland, is known to be difficult. There is a significant body of evidence to suggest that a transition should start early, be holistic and inclusive, as well as structured to build essential capabilities and promote resilience. The nurse led project, reported here, was set to create a playful mechanism for meaningful interactions between young people, families and healthcare professionals involved in the transfer of care. Methodology: Salutogenic theory and efforts to enhance a ‘sense of coherence’ guided developments of a collaborative boardgame entitled ‘The Young Heroes’. Through participatory design and the ecological framing of resilience, the captured lived experience of adults with spina bifida who already transitioned to adult care, was used to enhance developments. Playtests with a range of stakeholders was used to further hone and validate the tool. Results: Seeking to co-create a tool to support effective transitions, enabled a team to craft and test a transition game that is easily accessible, inclusive, and sufficiently adaptable to fit different settings, communities and cultures. The open licence grants others a free access to download, play and adapt this game so it could be further used, enhanced and validated. <br/

Community Partner Perspectives of Community-University Partnerships that Support Service Learning

Community partner voices are important to understand because they provide the contexts in which occupational therapy students meet course objectives by applying clinical reasoning theory and developing clinical reasoning skills in a natural context (Witchger-Hansen et al., 2007; Provident, et al., 2011). To sustain these community-university partnerships, faculty must understand how community partners are experiencing these partnerships. This understanding provides the faculty with insight on how to adjust, revise or enhance the partnership process that supports the service-learning pedagogy to sustain this community work of meeting community-identified needs while providing students with an opportunity to apply theory and develop clinical reasoning and professional development skills. The purpose of this three year study was to listen to the voices of community partners who participated in community-university partnerships that support service-learning for occupational therapy students enrolled in a two semester course on clinical reasoning. Specifically, the objectives of this study were to a) understand how community partners experienced community-university partnerships that support service-learning within the department of occupational therapy, and b) understand how community partners\u27 experiences changed over time. Results of the study revealed that community partners experienced the partnership itself through the faculty and the outcomes of the partnership, the service-learning project, through the occupational therapy students. Key findings included issues of effective communication and time when experiencing the partnership itself through the faculty member. When experiencing the service learning projects, community partners discussed developing meaningful relationships, spending time, and communicating effectively. Community partners were satisfied with the partnerships when the service learning projects met client or staff needs. Community partners were disappointed with the partnership when the service learning projects did not meet client or staff needs

Social inclusion, care, and belonging of children with spina bifida : perspectives from Uganda

This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalization and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida. Families and private non for profit organisations are the main providers of care of the children. Children with spina bfida had a more negative perception of themselves, were less likely to be in school, and had lower cognitive outcome compared to their siblings. Daily functioning and social inclusion were affected by motor function, incontinence, lack of support for caregivers, low household income, limited resources and knowledge of inclusive teaching, bullying, and inaccessibility of public transport, roads, and buildings. Positive experiences of belonging were found at family and household level and were closely related to the ‘ubuntu’ concept. When a child belongs, the child has a chance to live, to participate, to become, to be included. To facilitate inclusion, families need to be supported, and negative attitudes and behaviour of community members, teachers, and health workers need to be addressed. Key words: disability, inclusion, spina bifida, Uganda, Afric

The NeuroAdvocacy Toolkit: A Knowledge Translation Strategy to Strengthen Food Fortification Policies to Prevent Neural Tube Defects in Latin American Countries. A Mixed-Method Study

Background. Neural tube defects are one of the leading congenital malformations that affect children in Latin America and worldwide, leading to pregnancy terminations, morbidity, mortality, and long-term disability. The most cost-effective and equitable way to prevent them is by implementing public health policies for food fortification with folic acid. However, a lack of knowledge translation strategies partly accounts for the incomplete enactment, enforcement, and scaling-up of mandatory fortification. There is no evidence in the scientific literature of studies attempting to identify the factors contributing to the development and implementation of knowledge translation strategies aiming to influence policymakers’ decisions regarding mandatory food fortification to prevent neural tube defects in Latin American countries. Objectives. The study\u27s overall purpose was to describe the factors contributing to developing and implementing a knowledge translation strategy, named the NeuroAdvocacy Toolkit, aiming to influence policymakers in Latin American countries regarding mandatory food fortification policies to prevent neural tube defects. Methods. This study utilized a mixed-method sequential explanatory design with a follow-up explanations variant, which prioritizes the initial quantitative phase and uses the subsequent qualitative phase to explain the quantitative results. The study comprised three phases. First, a document analysis led to determining the status of fortification policies and a needs assessment for regulation change in the 20 Latin American countries, followed by the development of the NeuroAdvocacy Toolkit. The toolkit development was informed by the scientific literature and voices from the target audience regarding preferred mechanisms for knowledge transfer and utilization. Second, a quantitative phase collected survey data from purposefully selected Latin American key opinion leaders through the Measurement Instrument for Determinants of Innovations (MIDI) to identify the barriers and facilitators for implementing the toolkit as an innovative knowledge translation strategy. The surveys were conducted through an online platform in Spanish. And third, a qualitative phase gathered interview data about the perspectives of Latin American key opinion leaders in pediatric neurosurgery (purposefully selected from the survey respondents) on implementing and disseminating the toolkit to policymakers. The interviews were conducted through an online platform in Spanish. This phase concluded by integrating quantitative and qualitative data to gain a deeper understanding of how to address the critical factors. Results. The document analysis in the study\u27s first phase triangulated different sources of information to identify the status of food fortification policies in Latin America and develop a reliable needs assessment for regulation change. The data gathered allowed categorizing the 20 countries according to the priority to implement regulatory changes to strengthen fortification policies. Four countries are in level 1 priority with an urgent need for regulation change, 14 countries are in level 2 with a high need for regulation change, one country is in level 3 with a medium need, and one is in level 4 with no need for regulatory change. After being introduced to the NeuroAdvocacy Toolkit, 30 key opinion leaders in pediatric neurosurgery from 20 countries responded to the MIDI questionnaire. Their responses allowed identifying 20 facilitators, seven potential facilitators, and two barriers to implementing the Toolkit as a knowledge translation strategy targeting policymakers in the region. Twenty-four interviews with key opinion leaders yielded three themes describing 1) the attitudes toward using the Toolkit, 2) the ideal delivery strategies to policymakers, and 3) how to face potential challenges when bringing policymakers on board during the implementation and dissemination process. Finally, integrating quantitative and qualitative data permitted a deeper understanding of overcoming potential barriers and strategically leveraging facilitating factors when disseminating the Toolkit to the target policymakers. Although the MIDI allowed identifying the main barriers and facilitators for implementing the NeuroAdvocacy Toolkit, the subsequent interviews allowed visualizing alternatives for operationalizing the determinant factors. Key opinion leaders’ behaviors, influenced by subjective norms, social norms, and perceived roles, can spearhead effective data-driven advocacy. Organizational support can enhance the implementation and dissemination of the NeuroAdvocacy Toolkit by consolidating neurosurgical guild unity and promoting alliances with universities, other academic institutions, and other professional societies; also, obtaining support from non-governmental organizations and patients’ associations as critical stakeholders. Gaining support from supranational organizations such as the WHO and PAHO, materialized through a statement or resolution, can accelerate the dissemination process and promote the promulgation, enactment, and enforcement of MFF policies in most of the countries represented in this study. Conclusions. Most Latin American countries have a compelling need to update, scale up, implement, optimize surveillance, and guarantee the sustainability of mandatory food fortification policies to prevent neural tube defects. The NeuroAdvocacy Toolkit is an innovative knowledge translation strategy enabling key opinion leaders in pediatric neurosurgery to influence policymakers\u27 decisions toward strengthening fortification policies in Latin America. Critical determinant factors can act as barriers or facilitators to implementing and disseminating the Toolkit. Recognizing them is essential to tailor strategies to approach and call policymakers to action, with the ultimate goal of saving thousands of children in Latin America from being born with a devastating but preventable condition and promoting a healthy and fulfilling start to their lives

Supporting the transition of children and young people with a spinal cord injury from paediatric to adult healthcare services

The seamless transition from the paediatric to the adult healthcare system, termed healthcare transition, is a significant and critical factor in fostering independence and improved health outcomes. Empirical evidence confirms that a structured healthcare transition process can improve outcomes for young people with chronic conditions. However, to date, healthcare transition research has not explored the impact of healthcare transition interventions for young people with paediatric onset spinal cord injuries. Based on lived experience, people with disabilities have knowledge and expertise to share with researchers. In healthcare research and intervention design, end-user involvement is paramount, as interventions designed in this way are better adapted to the specific needs of users and are often more innovative. Although studies report involving young people with chronic conditions in the development of healthcare transition interventions, few details have been provided as to how this was achieved. This study fills an important gap, as it details how a healthcare transition intervention was co-designed and developed with young people with paediatric onset spinal cord injuries and parents/caregivers. The aim of this study was to co-design, develop, implement, and evaluate a healthcare transition intervention to support young people with spinal cord injuries. This study has provided new insight into the healthcare transition needs of young people with spinal cord injuries. It is also the first study to co-design and develop a healthcare transition intervention in partnership with young people with spinal cord injuries and parents/caregivers. Although the sample was small, it has shown that it is possible to meaningfully engage and empower young people with spinal cord injuries and parents/caregivers in the co-design of a healthcare transition intervention. Using a participatory action research approach and co-design activities resulted in enhanced end-user acceptability of the developed healthcare transition intervention. The initial findings from this research also highlight that the ‘SCI Healthcare Transition’ website is a novel, innovative intervention that is feasible and acceptable. However, further evaluation of the website is needed to determine the impact on healthcare transition experiences and success

Co-designing a mobile Internet service for self-management of physical activity in rheumatiod arthritis

Aim: The overall aim of the thesis was to describe and evaluate the content and outcome of co-designing a mobile Internet service for self-management of physical activity in rheumatoid arthritis (RA) with active lead user involvement, within the action research paradigm. Context: Physical activity is known for its health benefits. However, maintaining a physically active lifestyle is a great challenge for most people, and maybe even more so for people living with RA. IT and mobile phones provide additional means to deliver health care services, i.e. mHealth, for physical activity self-management. Further, involvement of lead users in the development of services has been reported to improve their usability and effectiveness. Process: In the first phase of the co-design process, six focus group interviews were performed with lead users (n=26) to explore their ideas on core features (Study I). In the next phase, four workshops were conducted, which included lead users, clinical and researcher physiotherapists, an eHealth strategist and an officer from the Swedish Rheumatism Association (n=10). The aim was to specify the system requirements of the future service (Study II and III). Video recordings, natural observations, prototypes of the future service and an online notice board were used to collect data on the requirements and challenges of co-design. In the third phase, the first test version of the service was produced and evaluate in terms of the participants’ utilization of and experiences with the service (Study IV). Log-data were collected during the six week test period. Web questionnaires were sent out to and telephone interviews were performed with the participants after the test period. Content: Four core aspects that are important to consider in the development of the mHealth service were identified: features, customized options, user interface, and access and implementation (result Study I). To produce the requirements specification, the participants had to merge their different perspectives, which was the core challenge of codesign (Study II). The merging resulted in “tRAppen”, an mHealth service for maintenance of physical activity. tRAppen included two key components: 1) “My self-regulation features” and 2) “My peer support features” (result Study III). The first test version of tRAppen included 22 different behavior change techniques. Outcome: Twenty-eight participants tested tRAppen (result Study IV). Most participants registered physical activity, sent likes and made an exercise plan. tRAppen was generally rated as easy and fun to use, and all participants would recommend it to other people. The results also described the experiences of using tRAppen as being influenced by physical and mental state and personal preferences. Conclusions: The use of co-design in the development of the physical activity selfmanagement service tRAppen was successful. The first test version of tRAppen was perceived as feasible and to have the potential to support a physically active lifestyle in people with RA. Co-design in collaborative workshops was an extensive decision-making process that put high demands on the participants’ ability to find solutions, negotiate, come to agreements and reach final decisions

Review of Disability Studies: An International Journal Volume 13 Issue 1

The latest issue of the Review of Disability Studies is out! Dive into this issues' advancement of ideas from authors representing Australia, Canada, Czech Republic, Hawaii, India, Norway, Sweden, and the United States. You won't want to miss this intersectionality of perspectives from scholars, educators, artist, activist, and medical practitioners all working towards advancing the study and experience of disability

TODAY - August 27, 2010

Inside this issue: -- $2.1 million NIH grant will enable pharmacy professor to study HIV/AIDS prevention-- Loma Linda University Medical Center sweeps its categories at Pacific Southwest Emmy Awards-- The future of parking at LLU-- Researchers at Loma Linda University School of Medicine and George Mason University find promising biomarker source in early detection of Alzheimer\u27s-- BMC administrator speaks out on the stigma of mental illness-- LLU Medical Center boasts largest hyperbaric oxygen chamber on West Coast-- Phil-Anne Krogman leaves the door open as she says farewell to FMO-- Loma Linda University operators perform with skill and care-- School of Public Health dean takes new role at ADRA-- Dart Foundation approves grant of$24,780 to Si Se Puede program-- LLU opens up health science world for area high school students-- Japanese and American exchange brings increasing understanding of OT-- Luke the Lion comes clean about helping kids at LLU Children\u27s Hospital-- School of Pharmacy employee named Rotarian of the Year in Redlands-- Pressure Ulcer Task Force lands a knockout punch at LLUMC-- Hospital administrator lends a hand in Haiti-- Loma Linda University and its various entities were all represented at General Conference Sessions in Atlanta-- School of Public Health graduates from Afghanistan improve health in their country-- 10th annual Health Disparities Summer Symposium throws a demographic curve-- How his wife\u27s smile helped an LLU School of Medicine graduate launch a massive anti-smoking campaign in China-- Spina bifida supports brave the heat for fun, fellowship, and inspiration-- Public health researchers finds risk in reusable grocery bags-- Public health student campaigns for peace through interfaith collaboration-- The second student-established LLU School of Pharmacy Health Fair marks the making of an annual event-- Allied health faculty and alumni honored at CHIA convention-- High school students warm the hearts of patients in Loma Linda University Children\u27s Hospital cancer unit-- School of Public Health takes on environmental justice for residents near polluted railyard-- Burros, bikers, and health care professionals converge on the great Southwest-- Research adventure on the low seas-- School of Public Health receives maximum 7-year accreditation-- The lion\u27s endodontist-- Loma Linda University celebrates employees with annual baseball gamehttps://scholarsrepository.llu.edu/today/1074/thumbnail.jp