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1.
Sustainability ; 15(10), 2023.
Article in English | Web of Science | ID: covidwho-20236997

ABSTRACT

This qualitative case study explores the development of pre-service science teachers' (PSTs) understanding of Socio-Scientific Issues (SSI) instruction. The study utilized a conceptual framework of SSI-based instruction and a three-phase approach involving co-designing solutions, co-designing curriculum materials, and co-teaching classes. Primary data sources included PSTs' interviews and reflective journals, while artifacts, field notes, and curriculum materials served as secondary data sources. Thematic analysis was used to analyze the data of six PSTs in a teacher preparation program. We found that the PSTs' understanding of SSI instruction was enhanced in 12 features of three core aspects: design elements, learner experiences, and teacher attributes. "Engaging in higher-order practices" was the most prominent feature, observed across all three phases. The three-phase approach played a crucial role in promoting PSTs' understanding of SSI instruction, with each phase guiding their understanding in distinct ways. Particularly, the co-designing solutions phase facilitated the development of PSTs' "awareness of the social considerations associated with the issue". While the co-designing curriculum materials phase was effective in promoting their understanding of "scaffolding for practice: providing scaffolding for higher-order practices. "The co-teaching classes phase played a crucial role in facilitating their understanding of "willingness to position oneself as a knowledge contributor rather than the sole authority".

2.
J Sci Educ Technol ; 31(2): 258-271, 2022.
Article in English | MEDLINE | ID: covidwho-20235928

ABSTRACT

Prompted by the sudden shift to remote instruction in March 2020 brought on by the COVID-19 pandemic, teachers explored online resources to support their students learning from home. We report on how twelve teachers identified and creatively leveraged open educational resources (OERs) and practices to facilitate self-directed science learning. Based on interviews and logged data, we illustrate how teachers' use of OER starkly differed from the typical uses of technology for transmitting information or increasing productivity. These experiences provide insights into ways teachers and professional developers can take advantage of OER to promote self-directed learning when in-person instruction resumes.

3.
International Journal of Child-Computer Interaction ; : 100596, 2023.
Article in English | ScienceDirect | ID: covidwho-2328345

ABSTRACT

In this paper we contribute seven design opportunities for future digital health platforms, like Private Social Networks (PSNs), focused on supporting the (un)met mental health and socioemotional needs of children (∼8-12 years old) and their supporting adults (parents and teachers) in the wake of the Covid-19 pandemic. These were derived from the thematic analysis of a two-phase co-design study with children, their parents, and their teachers (Phase 1), and employees at our industry partner Company X (Phase 2). Our thematic findings contribute understanding about the types of experiences children, families and educators have had, and open the conversation around designing digital health platforms that can support mental health and socioemotional wellbeing in children and their supporting adults. Through individualized tracking, social capabilities, and secure, vetted sources of support, PSNs offer unique opportunities to (1) provide children with a safe space to share, reflect and come together, (2) extend existing practices related to SEL across children's changing contexts and developmental needs, (2) support an integrated digital ecosystem of care across different stakeholders that allows for engagement and targeted interventions, and (3) support niche or marginalized communities in gaining access to relevant, meaningful and identity-specific support that may not otherwise be available.

4.
2023 CHI Conference on Human Factors in Computing Systems, CHI 2023 ; 2023.
Article in English | Scopus | ID: covidwho-2324376

ABSTRACT

Since the COVID-19 pandemic, online lectures are becoming more common in higher education. Specifically, asynchronous online classes have become increasingly popular because of their flexibility. Asynchronous online courses, however, may negatively impact students' academic performance and social development due to the diminished sense of social presence. To explore ways to enhance social presence among students in asynchronous online classes, this paper used a co-design methodology that involved 12 undergraduate students as primary stakeholders. As a result, we developed a design framework for designing in-class interaction to promote social presence in asynchronous online lectures. This framework consists of four high-level elements and sub-categories: interaction topic (direct or peripheral topics related to learning), interaction size (small or entire group), interaction mode (anonymity, synchronicity, instructor involvement), and interaction motivator (lightweightness and entertainment). Our design framework may serve as a guide to future technology for improving asynchronous online classes. © 2023 Owner/Author.

5.
2023 CHI Conference on Human Factors in Computing Systems, CHI 2023 ; 2023.
Article in English | Scopus | ID: covidwho-2321504

ABSTRACT

Deeply engaging nurses in a participatory co-design process, especially in times of COVID-19, is challenging. In this case study, we shed light on the process of developing a prototype for AR-glasses in nursing. We show the challenges we faced, the methods we used and how they contribute to the core principles of participatory design. A special focus is laid on small-scale interventions with high-impact, that helped us to truly engage users. We introduce empathetic ways to connect contrasting work environments, establish mutual understanding, make the more graspable with playful tools like PLAYMOBIL®, and support co-design development with online formats. Finally, we discuss the transferability to other projects. © 2023 Owner/Author.

6.
BMC Public Health ; 23(1): 888, 2023 05 15.
Article in English | MEDLINE | ID: covidwho-2326158

ABSTRACT

INTRODUCTION: Opioid overdose epidemic is a public health crisis that is impacting communities around the world. Overdose education and naloxone distribution programs equip and train lay people to respond in the event of an overdose. We aimed to understand factors to consider for the design of naloxone distribution programs in point-of-care settings from the point of view of community stakeholders. METHODS: We hosted a multi-stakeholder co-design workshop to elicit suggestions for a naloxone distribution program. We recruited people with lived experience of opioid overdose, community representatives, and other stakeholders from family practice, emergency medicine, addictions medicine, and public health to participate in a full-day facilitated co-design discussion wherein large and small group discussions were audio-recorded, transcribed and analysed using thematic approaches. RESULTS: A total of twenty-four participants participated in the multi-stakeholder workshop from five stakeholder groups including geographic and setting diversity. Collaborative dialogue and shared storytelling revealed seven considerations for the design of naloxone distribution programs specific to training needs and the provision of naloxone, these are: recognizing overdose, how much naloxone, impact of stigma, legal risk of responding, position as conventional first aid, friends and family as responders, support to call 911. CONCLUSION: To create an naloxone distribution program in emergency departments, family practice and substance use treatment services, stigma is a central design consideration for training and naloxone kits. Design choices that reference the iconography, type, and form of materials associated with first aid have the potential to satisfy the need to de-stigmatize overdose response.


Subject(s)
Drug Overdose , Opiate Overdose , Opioid-Related Disorders , Humans , Naloxone/therapeutic use , Narcotic Antagonists/therapeutic use , Opiate Overdose/complications , Opiate Overdose/drug therapy , Drug Overdose/drug therapy , Drug Overdose/prevention & control , Emergency Service, Hospital , Opioid-Related Disorders/drug therapy , Analgesics, Opioid/therapeutic use
7.
Design Science ; 9, 2023.
Article in English | ProQuest Central | ID: covidwho-2320416

ABSTRACT

Co-design is seen as crucial for designing solutions for resource-constrained people living in developing countries. To best understand their needs, user engagement and co-design strategies need to first be developed. In this Design Practice Brief, a process of co-design was created and used to understand ways telecommunication engineers could engage with rural communities in Uganda. It reports and reflects on (i) the experience of co-designing with nondesigners and (ii) creating a co-design structure and developing co-design methods of engaging with community members living in developing countries. In doing so, it offers a format and case study for future practitioners facilitating and conducting co-design with nondesigners and contributes to a knowledge gap in the reporting and reflection of co-design practice. This case study is unique as the co-design practice was achieved remotely (online), crossed disciplines (designers and telecommunication engineers) and cultural boundaries (European and African). It finds that in co-designing with nondesigners, preparation and structure are key, with acknowledgement and management of cultural and discipline differences.

8.
Sustainability ; 15(9):7681, 2023.
Article in English | ProQuest Central | ID: covidwho-2316926

ABSTRACT

The creative economy sector is tightly associated with sustainable development and Sustainable Economic Goals (SDGs). The creative industries contribute to sustainability in a variety of ways. They are essential in accelerating sustainable consumption and production patterns and promoting regional sustainable development. This paper attempts to stress the role of the creative economy in promoting sustainable regional growth by focusing on smart specialization priority areas in the region of Attica. The latter has been accomplished by presenting the current regional policy model and the entrepreneurial discovery process (EDP) methodology in the region of Attica. This paper concludes that the EDP paves the way for the formulation of policy lessons enhancing the link between the creative economy and sustainable regional growth. In a nutshell, three major conclusions derived from the present paper include the following aspects: (i) the formulation of an integrated smart specialisation strategy requires an ongoing and well-structured process along the policy cycle (structured life-cycle approach);(ii) the deployment of a robust innovation ecosystem requires a comprehensive approach of engaging and mobilising regional actors and identifying their needs and priorities;(iii) the lessons observed through the exploration of the case study lead to concrete findings regarding the critical importance of long-term interactive institutional learning and policy co-design as a precondition for an effective regional ecosystem.

9.
Can J Aging ; : 1-11, 2022 Aug 18.
Article in English | MEDLINE | ID: covidwho-2314875

ABSTRACT

COVID-19 has had a disproportionate and devastating impact on older adults. As health care resources suddenly shifted to emergency response planning, many health and community support services were cancelled, postponed, or shifted to virtual care. This rapid transformation of geriatric care resulted in an immediate need for practical guidance on decision making, planning and delivery of virtual care for older adults and caregivers. This article outlines the rapid co-design process that supported the development of a guidance document intended to support health and community support services providers. Data were collected through consultation sessions, surveys, and a rapid literature review, and analyzed using appropriate qualitative and quantitative methods. Although this work took place within the context of the COVID-19 pandemic, the resulting resources and lessons learned related to collective impact, co-design, population-based planning, and digital technologies can be applied more broadly.

10.
Pilot Feasibility Stud ; 9(1): 58, 2023 Apr 13.
Article in English | MEDLINE | ID: covidwho-2301092

ABSTRACT

BACKGROUND: Informed consent is critical to the ethical conduct of clinical research and requires understanding of a trial including its purpose, process, potential risks and benefits, and alternatives to participation. This can be challenging for complex trials, such as platform trials, and in high-stress environments, such as the intensive care unit (ICU). REMAP-CAP (randomized, embedded, multifactorial, adaptive platform trial for community-acquired pneumonia) is a platform trial which studies treatments for ICU patients with community-acquired pneumonia, including COVID-19. Patient/family partners (PFP) identified challenges during the REMAP-CAP consent process. METHODS: This is a patient-centred co-design study to refine and test an infographic to supplement current REMAP-CAP consent documents. Infographic prototypes were developed by patients, substitute decision-makers (SDMs), and researchers with lived experience in the ICU or with ICU research. We will apply a two-phase exploratory sequential, mixed-methods research design. In phase 1, we will conduct focus groups with ICU patients, SDMs, and research coordinators (RCs). We will use inductive content analysis to inform infographic refinement, to be pilot tested in phase 2. Phase 2 is a prospective study within a trial (SWAT) at ≤ 5 REMAP-CAP sites. We will collect self-reported data from patients/SDMs and RCs. The primary outcome is feasibility (eligible consent encounters, receipt of infographic, consent to follow-up, completion of follow-up surveys). Data will be integrated to understand if/how quantitative results build upon the qualitatively informed infographic. DISCUSSION: Phase 1 results will be used to co-design an infographic, directly informed by the perspectives of patients, SDMs, and RCs involved in ICU research consent discussions. Results from phase 2 will determine the feasibility of infographic implementation in REMAP-CAP consent encounters. These feasibility data will inform a larger SWAT to evaluate our consent infographic. If successful, use of a co-designed infographic to support REMAP-CAP consent documents may improve the experience of consent for patients, SDMs, and RCs. TRIAL REGISTRATION: The Northern Ireland Hub for Trials Methodology Research SWAT Repository (SWAT no. 176).

11.
J Particip Med ; 15: e38078, 2023 Jan 10.
Article in English | MEDLINE | ID: covidwho-2300404

ABSTRACT

BACKGROUND: There is an urgent and unmet need for accessible and credible health information within the transgender and gender-diverse (TGD) community. Currently, TGD individuals often seek and must find relevant resources by vetting social media posts. A resource that provides accessible and credible health-related resources and content via a mobile phone app may have a positive impact on and support the TGD population. OBJECTIVE: COVID-19 stay-at-home orders forced a shift in the methods used in participatory design. In this paper, we aimed to describe the web-based participatory methods used to develop the Transgender Health Information Resource. We also described and characterized the web-based engagement that occurred during a single session of the overall design process. METHODS: We planned and conducted web-based design sessions to replace the proposed in-person sessions. We used web-based collaborative tools, including Zoom (Zoom Video Communications), Mural (Mural), REDCap (Research Electronic Data Capture; Vanderbilt University), and Justinmind (Justinmind), to engage the participants in the design process. Zoom was used as an integrated platform for design activities. Mural was used to perform exercises, such as free listing, brainstorming, and grouping. REDCap allowed us to collect survey responses. Justinmind was used to create prototypes that were shared and discussed via Zoom. Recruitment was led by one of our community partners, One Colorado, who used private Facebook groups in which web-based flyers were dispersed. The design process took place in several workshops over a period of 10 months. We described and characterized engagement during a single design session by tracking the number of influential interactions among participants. We defined an influential interaction as communication, either verbal or web-based content manipulation, that advanced the design process. RESULTS: We presented data from a single design session that lasted 1 hour and 48 minutes and included 4 participants. During the session, there were 301 influential interactions, consisting of 79 verbal comments and 222 web-based content manipulations. CONCLUSIONS: Web-based participatory design can elicit input and decisions from participants to develop a health information resource, such as a mobile app user interface. Overall, participants were highly engaged. This approach maintained the benefits and fidelity of traditional in-person design sessions, mitigated deficits, and exploited the previously unconsidered benefits of web-based methods, such as enhancing the ability to participate for those who live far from academic institutions. The web-based approach to participatory design was an efficient and feasible methodological design approach.

12.
JMIR Aging ; 6: e41950, 2023 Apr 07.
Article in English | MEDLINE | ID: covidwho-2296548

ABSTRACT

BACKGROUND: Harm from medications is a major patient safety challenge. Most adverse drug events arise when a medication is prescribed or reevaluated. Therefore, interventions in this area may improve patient safety. A medication plan, that is, a plan for continued treatment with medications, may support patient safety. Participation of patients in the design of health care products or services may improve patient safety. Co-design, as in the Double Diamond framework from the Design Council, England, can emphasize patient involvement. As the COVID-19 pandemic brought restrictions to face-to-face co-design approaches, interest in remote approaches increased. However, it is uncertain how best to perform remote co-design. Therefore, we explored a remote approach, which brought together older persons and health care professionals to co-design a medication plan prototype in the electronic health record, aiming to support patient safety. OBJECTIVE: This study aimed to describe how remote co-design was applied to create a medication plan prototype and to explore participants' experiences with this approach. METHODS: Within a case study design, we explored the experiences of a remote co-design initiative with 14 participants in a regional health care system in southern Sweden. Using descriptive statistics, quantitative data from questionnaires and web-based workshop timestamps were analyzed. A thematic analysis of the qualitative data gathered from workshops, interviews, and free-text responses to the survey questions was performed. Qualitative and quantitative data were compared side by side in the discussion. RESULTS: The analysis of the questionnaires revealed that the participants rated the experiences of the co-design initiative very high. In addition, the balance between how much involved persons expressed their wishes and were listened to was considered very good. Marked timestamps from audio recordings showed that the workshops proceeded according to the plan. The thematic analysis yielded the following main themes: Everyone's perspective matters, Learning by sharing, and Mastering a digital space. The themes encompassed what helped to establish a permissive environment that allowed the participants to be involved and share viewpoints. There was a dynamic process of learning and understanding, realizing that despite different backgrounds, there was consensus about the requirements for a medication plan. The remote co-design process seemed appealing, by balancing opportunities and challenges and building an inviting, creative, and tolerant environment. CONCLUSIONS: Participants experienced that the remote co-design initiative was inclusive of their perspectives and facilitated learning by sharing experiences. The Double Diamond framework was applicable in a digital context and supported the co-design process of the medication plan prototype. Remote co-design is still novel, but with attentiveness to power relations between all involved, this approach may increase opportunities for older persons and health care professionals to collaboratively design products or services that can improve patient safety.

13.
Front Public Health ; 11: 1081767, 2023.
Article in English | MEDLINE | ID: covidwho-2293935

ABSTRACT

During the COVID-19 pandemic, government directives for health and community services focused on building capacity for COVID-19 safe behaviors. During 2020-2021, there was mounting pressure to increase vaccination numbers to boost population-wide immunity, thereby enabling the lessening of pandemic response restrictions. The Australian population, in general, faced communication hurdles in understanding COVID-19, government directives and policies, and health initiatives. This was particularly challenging given the rapid changes in disease behaviors and community response requirements. This community case study documents local experience in delivering information about COVID-19 safety and vaccination to a former refugee community (the Karen community) in regional Victoria. Community outreach and codesign approaches established closer engagement between the Karen community and Bendigo Community Health Services (BCHS). This case study is explored through semi-structured interviews conducted face-to-face and via videoconferencing with key Karen community leaders, Karen community members, vaccination clinic volunteers, and BCHS staff and bicultural workers. A hybrid approach that employed community outreach and codesign approaches in tandem built trust and closer ties between the Karen community and BCHS, leading to increased understanding and compliance with COVID-19 safe messages and vaccination uptake. Community-led innovations included codesign of COVID-19 fact sheets and videos in the Karen language, involvement of "local champions," assisting Karen businesses with COVID-19 safe plans, and creation of a COVID-19 information hotline. The latter was facilitated by BCHS bicultural staff. These innovations supported the delivery of vaccination clinics at the local Karen Temple. Embedding multi-level, tailored, and responsive public health approaches is particularly important in complex settings where there are disproportionately high levels of community disadvantage, as occurred during the COVID-19 pandemic.


Subject(s)
COVID-19 , Humans , COVID-19/epidemiology , COVID-19/prevention & control , Pandemics , Community-Institutional Relations , Australia/epidemiology
14.
Design for Health ; : 1-15, 2023.
Article in English | Academic Search Complete | ID: covidwho-2271576

ABSTRACT

This report discusses a PhD study concerned with the future of Emergency Department (ED) waiting rooms, how these spaces might be experienced into the future and with the contribution that design research and practice might make to inspiring change for these experiences. It reflects on how the COVID-19 pandemic impacted this study in its final stages, leading to the development of an ‘exhibition in a box' to enable remote speculative co-design. Outcomes of this work relate to the role of technology and user experiences in ED waiting rooms, how co-design might pivot in the face of a health crisis, and how collaborative thinking on health futures can occur at a distance. [ABSTRACT FROM AUTHOR] Copyright of Design for Health is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

15.
50th Annual Conference of the European Society for Engineering Education, SEFI 2022 ; : 1644-1653, 2022.
Article in English | Scopus | ID: covidwho-2281910

ABSTRACT

Greater collaboration is required between universities, industry and society to provide the engineering education that will tackle society's challenges. Work-based learning (WBL) programmes offer an industry-aligned, academically-informed education to support such socio-economic development. Co-design of such programmes is vital with responses to the COVID-19 pandemic innovating alternative ways to design programmes. Knowles et al (2021) [1] outlined an approach to online programme co-design in the UK university context, framed using Signature Pedagogy and through online conferencing and Miro (online whiteboard). Subsequently, the approach has been utilised to co-design a WBL degree programme in Electrical Engineering in Eswatini, supported by Knowles and other UK and Eswatini colleagues. This paper compares and contrasts cases from UK and Eswatini, and from this address the research question, "What considerations are required to support an effective online process to co-design a work-based learning programme in Engineering?” A collaborative autoethnographic methodology based around field notes, observations and reflections is used to allow exploration across pedagogy, technology, work practices, expectations and challenges. Many aspects of the approach worked well in both cases (for example, effectiveness of Signature Pedagogy, Miro as shared space), whereas differences arose related to limitations in the synchronous use of technologies, and readiness to adopt an outcome-focused approach. Addressing these differences, along with balancing progress against full participation and having clear expectations of participants, are key considerations in online co-design of WBL programmes. Moreover, the approach of Knowles (ibid) has shown to be adaptable with potential for broader adoption. © 2022 SEFI 2022 - 50th Annual Conference of the European Society for Engineering Education, Proceedings. All rights reserved.

16.
Psychooncology ; 32(5): 793-799, 2023 05.
Article in English | MEDLINE | ID: covidwho-2279744

ABSTRACT

OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.


Subject(s)
COVID-19 , Neoplasms , Humans , Caregivers/psychology , Pandemics , Neoplasms/therapy , Neoplasms/psychology , Information Services
17.
Interact J Med Res ; 12: e36765, 2023 Mar 03.
Article in English | MEDLINE | ID: covidwho-2270573

ABSTRACT

The COVID-19 pandemic has shifted the work environment to a new reality of remote work and virtual collaboration. This shift has occurred in various work settings with an impact on spaces, approaches, applied techniques, and tools. This has resulted in the broad use of virtual tools in the health care sector to avoid physical encounters and in-person interactions that will likely outlast the COVID-19 pandemic. Developing effective virtual approaches requires the knowledge and skills of using digital technologies collaboratively combined with a deep understanding of the context or contexts in which these approaches may be used. The implementation of virtual health design methods, including web-based co-design, has increased to meet the realities of COVID-19 restrictions and is likely to outlast them. Adapting the use of co-design methodologies to a virtual configuration requires rethinking methods of collaboration and communication, adapting to virtual environments, and creating new methods of engagement and facilitation. With this viewpoint, we reviewed the current work on co-design (in person and web based) to propose techniques for the design, planning, and implementation of web-based co-design. We propose 7 considerations that may enable web-based co-design projects in the health care sector. The key considerations that affect the success of a web-based co-design approach should be considered in the process of planning, developing, and conducting web-based co-design sessions. These include facilitation, collaboration, accessibility and equity, communication, sensemaking, tangible tools and games, and web-based research ethics. We illustrate this work with a case study of co-design for an emergency department discharge tool developed during the pandemic.

18.
Int J Environ Res Public Health ; 20(6)2023 03 14.
Article in English | MEDLINE | ID: covidwho-2251220

ABSTRACT

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.


Subject(s)
COVID-19 , Caregivers , Child , Humans , Adolescent , Caregivers/psychology , Psychosocial Support Systems , Europe , Family
19.
Health Expect ; 26(2): 613-629, 2023 04.
Article in English | MEDLINE | ID: covidwho-2249525

ABSTRACT

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.


Subject(s)
Dementia , Humans , Dementia/psychology , Caregivers/psychology , England , Hospitals
20.
Int J Environ Res Public Health ; 20(1)2022 12 22.
Article in English | MEDLINE | ID: covidwho-2243182

ABSTRACT

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.


Subject(s)
COVID-19 , Dementia , Telemedicine , Adult , Humans , Adolescent , Caregivers/psychology , COVID-19/epidemiology , Mental Health
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