Focus Group Research Articles

P.019 A shared decision-model toolkit for pregnancy related care in neurology

Background: Shared decision-making (SDM) is a dynamic, patient-engaged approach to collaborative medical care. Limited SDM tools exist in pregnancy. We aimed to examine the need and usability of a novel SDM tool for pharmaco-therapeutic treatment of neurological conditions in pregnancy. Methods: This is an exploratory mixed-methods study. Non-pregnant women of any age were recruited using convenience, purposive sampling from an academic neurology clinic in Toronto. Participants reported the user friendliness of the SDM by completing the systems usability (SUS) questionnaire and participated in a focus group to further elaborate on their experience. Results: Eleven participants completed the survey 45% each between age 31-40, and 51-60. Median time spent on the tool was 17.2 minutes, and median SUS score 70 (<68 being not usable). Thematic data analysis from 2 focus groups, identified technical and content improvements: use of inclusive language, simplified design, and importance of patient engagement in SDM. Conclusions: Based on our preliminary results, a SDM web-tool for medication-related concerns of pregnant patients with neurological conditions is needed and usable. With integration of patients’ lived experiences, this novel tool may serve as an anchor point for future work in this field.

P.071 Improving care for patients with neurofibromatosis 1 in British Columbia

Background: Neurofibromatosis 1 is a multisystem, neurocutaneous disorder with a predisposition for various malignancies. There is no established care pathway or multidisciplinary clinic for adult patients with NF1 in British Columbia (BC). Patients may miss timely screening or therapeutic interventions. The development of new therapies for NF1 highlights the urgency for coordinated care. Methods: A review of existing programs and guidelines was conducted. The estimated population with NF1 in BC was determined. A working group consisting of neuromuscular neurology, pediatric neuro-oncology, adult neuro-oncology, and medical genetics identified gaps in care. Results: Approximately 2200 adult individuals with NF1 are estimated to live in BC. A three-prong approach to address identified gaps was developed: A quarterly multidisciplinary NF Case Conference was initiated. The initial session was attended by 18 providers. Focus groups for patients and providers to enhance understanding of both perspectives are being conducted. Informed by the focus groups, an NF1 Care Pathway for BC will be developed. Conclusions: Advances in treatment for NF1 prompted the formation of the BC NF Working Group to develop a strategy to improve longitudinal, multidisciplinary care. The development of a care pathway, with patient input, will improve care coordination and access to care.

Ageing in Place: Older People Identify Barriers to Remaining in Low-Density Areas

AbstractStudies involving older people as co-investigators are limited in Portugal. The main objectives of this article are: (I) Analyze the barriers identified by older people living in low-density territories that pose a challenge to ageing in place. (ii) Understand the co-research methodology as an appropriate instrument for increasing the participatory capacity of older people and improving the conditions for ageing in place. (iii) Assess the role of social networks and community support in providing informal assistance to older people in low-density territories. The study involved 14 co-researchers, who had a balanced gender representation and an average age of 64.5 years. All the co-researchers were residents of the study location and volunteered for the research. They were provided training in interview techniques and active listening, prior to the study. A total of three interviews and 23 photographs were analyzed and discussed in five focus group meetings. The participants agreed upon four types of unmet needs and developed proposals to increase their negotiating power, thereby mitigating barriers to their permanence. The co-researchers presented their proposals at two public meetings with decision-makers, managers, and members of the municipal council. The findings were a significant addition to the promotion of the co-research approach and the engagement of older adults in detecting the obstacles that hinder their secure and independent aging in their living environment.

ChatGPT in public policy teaching and assessment: An examination of opportunities and challenges

AbstractThis paper presents the findings of an innovative assessment task that required students to use ChatGPT for drafting a policy brief to an Australian Government minister. The study explores how future public policy students perceive ChatGPT's role in both public policy and teaching and assessment. Through self‐reflective essays and focus group discussions, the research looks at the limitations of ChatGPT that the students identified, demonstrating it struggles to produce analytically sound, politically responsive, and nuanced policy recommendations. The findings align with the “technoscepticism” theoretical frame, indicating concerns that artificial intelligence (AI) tools could undermine good policy analysis processes. The students supported greater use of ChatGPT in the classroom, to increase ChatGPT‐literacy, help students learn to engage ethically and appropriately with AI tools, and better develop evaluative judgement skills.The paper contributes insights into the intersection of ChatGPT, teaching and assessment, and public policy and seeks to prompt further exploration and discussion on the implications of integrating ChatGPT into both public policy and its education and assessment.Points for practitioners Future public service graduates are highly sceptical about the value of ChatGPT for developing policy. They are concerned about the ethical implications, the lack of transparency, and the impact it may have on marginalised communities.

Unveiling the Challenges and Processes of Implementing Program and Performance Budget for Government Universities in Iraq

This study aims to identify the challenges facing the implementation process and necessary processes for the successful implementation of Program and Performance Budget (PPB) in Iraqi universities. Employing a qualitative approach, data was gathered through in-depth, semi-structured focus group discussions involving top management and financial department representatives from the University of Baghdad, the University of Al-Qadisiyah, and the University of Muthanna, totaling 30 participants. Utilizing Nvivo software, the data was analyzed to generate a word cloud, where larger-sized words indicated greater repetitions and higher impact rates. Thematic analysis techniques were subsequently applied for a more detailed understanding. The findings underscore numerous challenges in PBB implementation, including issues related to management competence, organizational commitment, financial constraints, and the unique features of PPB. Key thematic areas for necessary processes are the measurement system and the approach to implementation. The contribution of the theoretical study is to supplement previous literature that is concerned with trying to find an alternative to the traditional method of preparing the budget. The current study showed the challenges associated with implementing the PPB in the Iraqi context and the necessary procedures for that. The study focuses on Iraqi government universities. This empirical evidence contributes to a comprehensive understanding of the challenges and processes associated with PBB implementation, serving as a valuable guide for university management.

Impacts of COVID‐19 on social work teaching and learning in Bangladesh

AbstractThe COVID‐19 pandemic had a significant impact on both classroom instruction and practical learning within Social Work Departments in Bangladesh. This research took two state universities in Bangladesh as case studies, using a qualitative methodology. Researchers conducted 10 Key Informant Interviews, with professors and field supervisors, 20 in‐depth interviews with Master of Social Sciences (MSS) students and two Focus Group Discussions with MSS students. During the pandemic, University faculty experimented with virtual classrooms, pre‐recorded lectures, and online chat forums to interact with postgraduate students. However, these approaches were not completely successful due to the limitations of digital infrastructure at the Universities and at students' residences. Shortcomings in virtual education included technological barriers, insufficient access to educational resources, and an unusual mental health situation for many students. Student practica were difficult to organize, due to technological barriers, restricted field placement opportunities, disruption in client interaction, and community outreach, interruptions in fieldwork and data collection, as well as insufficient faculty supervision and support. Universities ought to take proactive measures to integrate technology into teaching and learning in normal times so that both can continue during public health emergencies without adding educational crisis to the general state of emergency.

Influences of Leadership, Organizational Culture, and Hierarchy on Raising Concerns About Patient Deterioration: A Qualitative Study

Background Raising concerns is essential for the early detection and appropriate response to patient deterioration. However, factors such as hierarchy, leadership, and organizational culture can impact negatively on the willingness to raise concerns. Objectives This study aims to delve into how leadership, organizational cultures, and professional hierarchies in healthcare settings influence healthcare workers, patients, and caregivers in raising concerns about patient deterioration and their willingness to do so. Methods The study used a qualitative approach, conducting focus group discussions (N = 27), utilizing authentic audio-visual vignettes to prompt discussions about raising concerns. Deductive thematic analysis was employed to explore themes related to hierarchy, leadership, and organizational culture. Results Positive leadership that challenged traditional professional hierarchies by embracing multidisciplinary teamwork, valuing the input of all stakeholders, and championing person-centered practice fostered a positive working culture. This culture has the potential to empower clinical staff, patients, caregivers, and family members to confidently raise concerns. Staff development, clinical supervision, and access to feedback, all underpinned by psychological safety, were viewed as facilitating the escalation of concerns and, subsequently, have the potential to improve patient safety. Conclusions This study offers crucial insights into the intricate dynamics of leadership, hierarchy, and organizational culture, and their profound impact on the willingness of staff and patients to voice concerns in healthcare settings. Prioritizing the recommendations of this study can contribute to reducing avoidable deaths and elevating the quality of care in healthcare settings.

A qualitative assessment of community perceptions and practices towards schistosomiasis prior to introduction of a potential novel treatment option for preschool-age children in Kenya

BackgroundOver 50 million preschool-age children (PSAC) in Africa need treatment for schistosomiasis but are excluded due to lack of a suitable child-friendly medication. The Paediatric Praziquantel Consortium has developed a novel paediatric formulation for PSAC. In advance of its roll-out, we conducted a social science study to draw lessons to inform implementation.MethodsWe conducted a cross-sectional study in eight villages in two purposively selected highly endemic Kenyan counties (Homa Bay and Kwale). We conducted 17 in-depth interviews with community opinion leaders and 21 with parents/guardians of PSAC. Twelve focus group discussions with parents/guardians of PSAC were also held. The aim was to assess their knowledge, perceptions, practices and willingness to participate in the medication’s roll-out for schistosomiasis. Thematic data analysis was performed.ResultsMost participants had heard of schistosomiasis and perceived it to be a serious disease whose treatment should be prioritised. Others felt it was a common disease that should not cause concern. Some people believed schistosomiasis was caused by witchcraft while others regarded it as a sexually transmitted infection. In addition, some practices like poor human waste disposal and water contact were thought to contribute to continued transmission of the disease.ConclusionCommunity members know and perceive schistosomiasis to be serious, but misinformation about its cause is prevalent. The study suggests the need for increased awareness creation to change the perceptions of communities in relation to schistosomiasis prevention and control. Community sensitisation should be prioritised in advance of medication roll-out.

Exploring the foundations of a digital health information service for patients with inflammatory bowel disease: a mixed method study in Gravitate-Health

BackgroundProviding relevant digital health information of high quality may promote treatment adherence and self-management for patients with inflammatory bowel disease. The development of digital health services is optimised by considering end users’ needs.AimTo identify key aspects required for digital promotion of inflammatory bowel disease patients’ self-management by exploring their health information needs and the preferences of both patients and healthcare professionals in relation to the digital provision of inflammatory bowel disease health services.MethodsData from an audit of 1,481 electronic health record summaries from an inflammatory bowel disease help line, 17 semi-structured interviews with inflammatory bowel disease patients and 2 focus group interviews with 11 healthcare professionals were analysed.ResultsPatients primarily contacted the hospital due to concerns about symptoms, examinations and tests, and medicines. Their concerns appeared to vary according to diagnosis, gender, age and disease duration. The interviews identified two overarching themes: (1) the available health information and patients’ health information needs, and (2) whishes, thoughts and preferences for a digital solution in IBD care with relevant and individualised information.ConclusionsThe findings delineate key aspects for developing a suitable digital health information service. Patients seek information from healthcare professionals about treatment; however, in a digital solution, they want access to relevant and practical information about the disease, treatment and self-management. Both patients and healthcare professionals saw opportunities for increasing health data availability to patients. However, healthcare professionals expressed concerns about adapting, maintaining and ensuring the relevance of patient health information without increasing their workload and, thus, reducing quality of care.

Negotiating urban entities: marginalized citizens, participation, and the Indian smart city

ABSTRACT Smart cities in India guarantee the promotion of citizen participation in the urban transformation processes. However, when it comes to marginalized citizens, scholars find urban transformation processes undemocratic and limiting their participation in smart cities. Contrary to this, an emergent form of citizenship among the marginalized in urban transformations beyond digital governance has been highlighted by a few scholars in the Global South, especially India. Hence, this paper contributes to these discourses on postcolonial urban transformations by reflecting on the emergent forms of citizenship, understanding marginalized citizens’ participation, and the challenges they face within Indian smart cities. The study focuses on India's smart city, Bhubaneswar's Socially Smart Bhubaneswar (SSB) Programme, initiated in 2017, focusing on marginalized groups residing in slums. We use Ling and Dale's (2013) social capital and agency lens to explore how marginalized citizens engage with their city's social and spatial transformations. A qualitative thematic content analysis of in-depth interviews and focus group discussions collected from four selected slums of Bhubaneswar was used for the study. We found that the marginalized citizens, through top-down propulsion and constant efforts on bottom-up translation and collectivization, not only became collaborators of the state in urban transformation but also active and critical citizens addressing their community needs. However, marginalized citizens become active and critical in urban transformation, requiring certain manoeuvres. Moreover, if the programmes need to understand the marginalized positionality in the urban transformation and exclude them from becoming a part of the transformation, then bringing social change might not be possible. Thus, the study highlights the potential of commons-driven governance and the need to expand social capital and agency to promote social change and participation of marginalized communities in urban transformation. Highlights Postcolonial urban transformations reveal emergent forms of marginalized citizenship. Marginalized citizen engagement evaluated using social capital and agency lenses. Social capital and agency among the marginalized fostered commons-driven governance. Capacitated nested networks and collectivization foster bottom-up participation. Chatur citizenry (Datta, 2018a) traced within marginalized citizen’s participation.

Identification, Mapping and Solutions for Drought Management in Kaliori District, Rembang Regency, Indonesia

Rembang Regency is one of the regencies in Central Java that often experiences drought. Based on the results of the mapping of drought-prone areas for 2020 carried out by the Rembang Regency government, there are 63 villages spread across 14 sub-districts, 18,885 families are recorded as experiencing drought. Kaliori District is one of the sub-districts in Rembang Regency that is experiencing drought, this sub-district consists of 23 villages and is directly adjacent to the north of Java Sea. The purpose of this research is to be able to do a mapping for planning sustainable drought solutions, obtain quantitative data on drought and stages of drought management. The stages of the research carried out were site surveys and interviews related to drought in the Kaliori area. Prior to the Focus Group Discussion (FGD), a questionnaire was prepared. This research was conducted through joint FGD with all village heads in Kaliori District regarding water drought in Rembang. Based on the FGD and the statistical analysis results, it was found that 70% of Kaliori District experienced drought. When there is a drought, generally villages in Kaliori sub-district use water from water tanks and some use wells of poor quality and having a salty taste. The majority of villages in Kaliori Sub-district experienced a drought that lasted for 4-5 months of a year. Several parties involved in dealing with drought in Kaliori Sub-district included PAMSIMAS, Karang Taruna, Banser, Paguyuban, and P3A. Some solutions proposed are river connection, estuary river gate, and reservoir optimation.

Boredom and its perceived impact in adolescents with exceptional mathematical talent: a sequential mixed-methods study in Paraguay

IntroductionBoredom, a state where the task at hand presents difficulties in attentional resources and attributed meaning, can be detrimental to talent development by reducing cognitive engagement. This study employed a mixed sequential design to assess boredom in adolescents with exceptional mathematical talent in Paraguay participating in a talent development program.MethodsFirst, in the quantitative phase 54 students completed the Boredom Short Scale, School Attitudes Assessment Survey-Revised, and Psychological Well-Being Scale for Adolescents. Next, in the qualitative phase 50 students participated in focus groups to explore their personal experiences of boredom, along with their perception of possible factors that impact boredom.ResultsBoredom in this population was similar to the general population of adolescents, albeit significant differences existed in items and subscales showing a pattern unique to this population; they tended to become bored quicker but had an easier time sparking interest in activities. Higher boredom had small to moderate correlations with worse attitudes at school and with teachers, lower motivation and self-regulation in academic activities, lower self-control, and lower involvement in personal projects. Higher valuation of goals and academic self-perception related with a lower tendency toward boredom only in the context of a talent development program, but not at school. Boredom seemed multifaceted, with dimensions such as the absence of meaning, superficial entertainment, and wasted time. Contributing factors included waiting for other people’s slower pace, limited choices, lack of novelty, insufficient intellectual challenge, and the influence of teachers and social dynamics. Coping mechanisms included inner intellectual stimulation, seeking entertainment and escape, pursuing independent learning, extracurricular activities, like-minded peers, and extreme sensation-seeking.DiscussionFostering adequate challenge and support in advanced academic endeavors for the development of mathematical talent can prevent negative consequences associated with boredom in exceptionally talented populations.

Evaluating Community Forest User Groups (CFUGs)’ Performance in Managing Community Forests: A Case Study in Central Nepal

The community forests (CF) in Nepal, facilitated by Community Forest User Groups (CFUGs), is widely recognized as an effective model of community-based forest management. Despite this recognition, there is a notable lack of comprehensive studies assessing the performance of CFUGs in sustaining community forests. Addressing this gap, this study examined twenty-two indicators across five performance criteria, such as user group management, forest management, financial management, livelihood management, and collaboration and networking management, within four CFUGs in central Nepal. Data were collected through household surveys (n = 275) and focus group discussions (n = 4), and indicators of performance criteria were assessed using a Likert scale. Reliability was measured using the coefficient of Cronbach’s alpha. ANOVA was employed to compare mean performance criteria across the four CFUGs, providing an evaluative perspective on overall CFUG performance. The findings underscored collaboration and networking management as high performers, showing an index value of 0.71, while user group management exhibited moderate performance with an index value of 0.56, alongside other moderately performing criteria. Noteworthy disparities were evident across the four performance criteria (p < 0.01), with the exception of collaboration and network management. Approximately 55% of the indicators were rated low to moderate, revealing CFUGs’ deficiencies in regular functions, limited uptake of adaptive and market-oriented management practices, minimal contributions to biodiversity conservation, insufficient capacity for forest revenue generation and mobilization, and restricted income generation and benefit-sharing with communities. The absence of timely and pertinent actions further stifled interaction between CFUGs and community forests, undermining the potential for revenue generation, job creation, and collective actions essential for productive community forest management. Prioritization of the indicators based on the performance index value offers critical policy direction to ensure CFUG sustainability and augment participatory management of common pool resources. Strategies to address identified weaknesses and build on strengths are essential for the success of Nepal’s community forests.

An exploratory study of knowledge, attitudes, practice and barriers towards adverse drug reaction reporting among healthcare professionals in Malta

BACKGROUND: Understanding knowledge and attitudes of health care professionals (HCPs) towards adverse drug reaction (ADR) reporting can inform educational interventions promoting ADR reporting. OBJECTIVE: To explore knowledge, attitudes, practice, and barriers of local HCPs towards ADR reporting. METHODS: Focus groups involving HCPs from different settings were organized to help develop a questionnaire. The questionnaire was validated and disseminated to pharmacists, physicians, dentists and nurses practicing in Malta. A review of ADR reports reported in Malta from 2004 to 2021 was carried out to contextualise questionnaire findings. RESULTS: Overall, HCPs (n = 374) had good knowledge on pharmacovigilance and a positive attitude towards ADR reporting however nurses were found to be less knowledgeable than physicians, dentists, and pharmacists. The main barrier for not reporting ADRs was difficulty to understand whether an adverse event occurred (n = 187). A total of 2581 ADR reports were reported in Malta. Among HCPs, physicians and dentists reported most ADRs (1060 reports), followed by pharmacists (307 reports) and nurses (257 reports). CONCLUSION: Further ADR educational and promotional efforts are needed to increase awareness on the importance of quality ADR reporting and increase the number of ADR reports reported by local HCPs.

Determinants of land management technology adoptions by rural households in the Goyrie watershed of southern Ethiopia: Multivariate probit modeling estimation

Land management technology (LMT) adoption is one of Ethiopia's crucial strategies to combat soil depletion and promote agricultural production. However, there is scant information concerning the intensity, interdependent nature, and households' decision to adopt multiple LMTs. Thus, the purpose of this study is to identify factors influencing households' decisions to adopt multiple LMTs and the intensity and interdependency of the technologies in the Goyrie watershed of southern Ethiopia. The data was collected from 291 randomly selected household heads, focus group discussion participants, and key informant interview respondents. The quantitative data was analyzed using descriptive statistics and econometric methods like multivariate probit and ordered probit modeling, while the qualitative data was presented through content analysis. The result indicated that more than half of respondents (67 %) applied one or two LMTs. The highest complementary effects were observed in mixed soil bunds with desho grasses and manure applications. However, soil bunds and fanya-juu, manure application and agroforestry showed interchangeability with one another. Sex, education, family size, landholding size, access to development agents and credit institutions, training, and village membership increased the probability of adopting multiple LMTs, whereas age, land rent, and crop sharing discouraged the likelihood of households' decisions to adopt LMT. The results of the ordered probit model revealed that village membership and contact with extension agents highly encouraged the intensity of LMT adoptions. Thus, policymakers and planners should consider social, institutional, human asset, and technological related factors to increase adoption rates and intensity of land management technologies.

Co-existence of potentially sustainable indigenous food systems and poor nutritional status in Ho indigenous community, India: an exploratory study

Indigenous food (IF) systems comprise culturally important foods derived from natural resources with shorter farm to plate chains, as compared to modern counterparts. These food systems are at epicenter of sustainable food systems with potential to alleviate malnutrition and protect ecosystems. The Ho indigenous community of Jharkhand have access to diverse IFs, yet experience malnutrition. A sequential mixed-method study was conducted to explore local food systems with assessment of diet quality and nutritional status of Ho women. Focus group discussions (n = 10) and free-listing (n = 7) were conducted to capture community’s perspectives on IF systems, associated sustainable attributes and perceived challenges towards IF utilization. Scientific names and nutritive values of IFs were documented through secondary review; in case of no information in literature, IFs were identified through ethnobotanist with nutritional analysis in laboratory. 24 h recalls (n = 284 in winter and n = 154 in monsoon) and anthropometric assessments (n = 273) were conducted to estimate women’s dietary diversity and nutritional status. Findings revealed rich traditional ecological knowledge (TEK) producing a diverse list of IFs (n = 243) mainly accessed from natural food environment (wild and cultivated). Among listed foods, 171 IFs were taxonomically classified and among these, nutritive values were documented for 121 IFs. Potentially sustainable traits of Ho’s IF systems included high nutrient density of IFs, community’s preference towards their consumption because of their flavorsome attributes, climate resilient properties and cultural heritage. However, impacts of climate variability, changing farming practices and market-integrated life ways challenged the sustained production, access and consumption of IFs. This was evident in poor diversity in diets (diet diversity scores of 2.9 in winter and monsoon) and chronic energy deficiency (36%) in women. The unique TEK systems of indigenous communities need to be integrated into mainstream policies and programs for safeguarding and promoting their potentially sustainable food systems to support food and nutritional security.

An ethnobotanical survey on the medicinal and edible plants used by the Daur people in China

BackgroundThe Daur people are one of the 55 minority ethnic groups in China and have lived in Northern China for 300 years. In traditional Daur medicine, medicinal and edible plants (MEPs) are utilised for health benefits and therapeutic purposes; however, related ethnobotanical knowledge is rarely reported, which is disadvantageous for the sustainable development of these MEPs.MethodsSemi-structured interviews with 122 informants, six focus group discussions, and a resource survey were conducted in a Daur minority nationality area in Inner Mongolia from 2015 to 2020, and the data statistics were analysed. In this study, we simulated a system dynamics model aimed at understanding the multiple feedback mechanisms involved in the relationships between the cultural influences and socioeconomic factors, sustainable environment, and development of MEPs.ResultsA total of 52 species of MEPs were identified and relevant ethnobotanical knowledge was assessed using Daur medicinal species data from Inner Mongolia and the Xinjiang region, with the literature and Ewenki ethnic group data used for comparison. The most commonly used medicinal plant species by the Daur were found to be Betula pendula subsp. mandshurica, Artemisia integrifolia, Crataegus pinnatifida, Saposhnikovia divaricata, Artemisia argyi, and Jacobaea cannabifolia. The MEPs most frequently targeted the digestive and rheumatic immunity systems, as well as infectious diseases or parasitic infections and other common diseases and basic health issues. MEP knowledge was primarily limited to older generations; thus, the valuable ethnobotanical knowledge on traditional medicines must be protected from future losses.ConclusionsOur findings provide insights for future research aimed at exploiting the rich phytochemical diversity in traditional medicine and promote its use in modern lifestyles. Effective assessment and management of plant resources will lead to their application for the improvement of dietary diversity, nutrition, and health care.

P.028 Exploring young adult stroke patients’ lived experience, healthy lifestyle habits, and recommendations for designing innovative brain care-related initiatives

Background: Over the past decade, worldwide stroke incidence has been increasing among young adults (≤65years), which has implications during the most dynamic period of their life. There is a dearth of research exploring young adults stroke patients’ experiences, healthy lifestyle habits, preferences, and recommendations for brain care-related initiatives. The study aimed to gain knowledge and a deeper understanding of young adult stroke patients’ experiences, lifestyle habits, and support needs for brain care-related education and interventions. Methods: A descriptive qualitative study was used. Participants who took part in the quantitative phase of a larger mixed methods study (n=103 that expressed an interest in the qualitative phase, were invited to take part in semi-structured focus groups. Simultaneous data collection and analysis are being conducted. Data are being analyzed using inductive thematic analysis outlined by Braun and Clarke (2006). Results: Findings will be available by May 20, 2024. Conclusions: Study findings will be essential to 1) mobilize an understanding of young adult stroke patients’ lived experience; 2) reconceptualize the current model of stroke care and services that is traditionally geared towards older adults; and 3) inform the development of brain care-related education and interventions to meet the unique needs, priorities, and preferences of young adult stroke patients.

Toward enhanced decentralized palliative care services in Neno District, Malawi: a qualitative study.

BackgroundPalliative care remains key in assisting patients who have life-threatening conditions. In most low- and middle-income countries, it is often offered through a centralized system with limitations, including Malawi. In 2014, the World Health Organization called for improving palliative care access through primary health care and community models. Malawi and Neno District subsequently decentralized palliative care delivery to local health centers. This qualitative study explored the decentralization of palliative care services in Neno District, Malawi.MethodsThe descriptive qualitative study was conducted between 2021 and 2022 in two conveniently selected health centers providing palliative care in the Neno District. Fourteen healthcare workers were purposefully selected to participate in two focus groups. Fifteen patients were conveniently selected and participated in three focus groups. Data was analyzed using deductive and inductive approaches. Focused group discussions were conducted in Chichewa (Malawi’s official local language), audio recorded, transcribed, translated into English, and analyzed thematically.ResultsFour main themes emerged from the focus groups. Patients described positive relationships with healthcare workers built on trust and holistic care over time. Accessing care included transport, social support, time constraints, and distance issues. Facilities effectively responded to needs through coordinated care and follow-up. Decentralization was perceived to benefit patients by reducing travel challenges and improving local access to efficient and inclusive palliative care services. However, challenges with resources, distance, and social support remained. Limitations in sampling and missing participant details necessitate further research with broader sampling.ConclusionOverall, the study provides empirical evidence that can optimize palliative care delivery in similar low-resource contexts by informing policies to address barriers through decentralized approaches.

#1030 Addressing the unmet need of patient reported outcomes in ANCA associated vasculitis, in routine clinical practice

Abstract Background and Aims ANCA associated vasculitis (AAV) is associated with increased morbidity. Recent years has seen improvement in clinical outcomes yet little work has been done to better understand the patient's role within this condition. Patient reported outcome measures (PROMs) are increasingly standard in clinical research outcomes, as well as an overall indicator for good quality patient care. With the exception of Robson et al AAV-PRO [1], little research has been done to develop validated disease specific tools for patients living with AAV. We aim to develop a disease specific tool that can be used in clinical practice to aid patients and clinicians in understanding and track changes in health-related quality of life (HRQoL) over time. Method AAV patients from a single centre were invited to take part in focus groups conducted using a semi-structured topic guide. Participants were asked to discuss topics relating to four broad areas; 1) the effects of AAV on everyday life and living, 2) the effects of treatment on everyday life and living, 3) the role of patients in health management and the patient experience 4) a review of existing generic and disease specific PROM tools (SF-36 and AAV-PRO). Audio transcript of each focus group was transcribed verbatim and data was analysed using a combination of inductive and deductive framework analysis [2]. Results Twenty-eight patients with AAV were invited to participate, 19 attended one of three, 2.5 hour focus groups, 2 patients failed to attend, 4 declined and 3 were unavailable. The mean age of participants was 66.6 +9.4 years and there was a near equal male to female split (10:9). The median time from diagnosis as 7.4 years. Three participants had active or newly diagnosed AAV with BVAS scores of >10. Five participants had previously required dialysis with 1 receiving a renal transplant. All participants received glucocorticoid and immunosuppressive therapy (cyclophosphamide and or Rituximab), 15 (78.9%) were still receiving immunotherapy. Full analysis of the qualitative data is being undertaken. Preliminary findings outlined what was most important to participants when considering HRQoL. Areas acknowledged included; self-identity, social roles e.g. fulfilling caring responsibilities, fears of relapse and disease and treatment burden. Fifty-six deductive and inductive codes were identified which have been further categorised. Participants felt existing tools lacked consideration of some key issues. Scoring systems were considered to be negativity worded e.g. mild, moderate, severe, with the term ‘none’ being the only positive option. Participants reported that existing tools overlooked positive factors which impact HRQoL, such as symptom validation, close clinician monitoring and improvement with treatment. Limitations were noted when trying to address transient or inconsistent symptoms and difficulty separating vasculitis from other health conditions when answering questions. Participants expressed a preference for using a PROM as part of their clinical care and felt that completing it prior to clinic would be most helpful and facilitate discussions with healthcare professionals. The use of an electronic-PROM was widely supported and would support clinicians and patients to monitor changes over time. Conclusion The AAV-PRO represents a significant advancement over generic tools such as the SF-36, however, existing PROMs are not without limitations and are primarily used in research practices. Our study revealed that patients desire active participation in HRQoL discussions and further work to incorporate this into the clinic setting is needed. We are continuing to develop a PROM tool that can be used to assess patients HRQoL in relation to their AAV in the outpatient setting. We believe this will allow a deeper understanding of the disease burden and could support a comprehensive, patient-centred approach to decision-making, offering new insights and identifying the need for supportive care. On a broader scale, these insights can be utilized to compare treatments, shed light on inequalities and facilitate enhancements in services.