RESUMEN

PURPOSE: Professional supports play an important role in aiding autistic children's learning, participation, and overall wellbeing. Yet, limited research exists on stakeholders' perspectives and preferences regarding targeted outcomes for children undergoing support facilitated by professionals. This study investigated stakeholder views on the priority and appropriateness of outcomes intentionally targeted during the provision of supports to autistic children. METHOD: A survey of 181 participants (including 72 autistic adults, 85 parents, and 69 professionals) from Australia and New Zealand was conducted. Participants rated the appropriateness and priority of 47 potential child and parent outcomes within the context of support. RESULTS: The highest priority outcome was improving child mental wellbeing, with the lowest being reducing sensory seeking or avoidant behaviours. Priority ratings for certain outcomes differed based on the child's age. Over half of the participants rated reducing sensory seeking/avoidant behaviours and reducing focused interests as inappropriate outcomes of supports. Further, variations in the appropriateness of outcomes differed among participant groups. CONCLUSION: Reflecting the growing acceptance of neurodiversity-affirming practices, these results underscore support for targeting outcomes that are meaningful to the autistic and autism communities, with less emphasis on those which reflect neurotypical behavioural standards.

RESUMEN

Introduction: School-based COVID-19 testing may be an effective strategy for reducing transmission in schools and keeping schools open. The study objective was to examine community perspectives on school-based COVID-19 testing as a mitigation strategy to support safe school reopening. Methods: We conducted a qualitative study in Yakima County, an agricultural region of Washington state, where over half of residents are Hispanic/Latino. From June to July 2021, we interviewed 18 students (13 years old, on average) and 19 school employees, and conducted four focus groups (2 in Spanish, 2 in English) with 26 parents. We audio-recorded the semi-structured interviews and focus group discussions which were then transcribed. We used an inductive, constant comparison approach to code the transcripts and conducted a thematic analysis to generate themes. Results: We identified four main themes. Students, parents, and school employees desired a return to in-person learning (Theme 1). Schools implemented numerous COVID-19 mitigation strategies (e.g., masking) to facilitate a safe return to school but felt that adding testing would not be feasible due to a lack of resources and overworked staff (Theme 2). Parents and school employees' familiarity with COVID-19 testing procedures influenced their support for testing (Theme 3). Parents and school employees felt there were inadequate resources for individuals who test positive for COVID-19 (Theme 4). Discussion: Schools require adequate resources and medical personnel to implement COVID-19 testing. Individuals also need resources after testing positive, including physical space to isolate, financial resources for those without paid time off, and delivery of food and other necessities to households in rural communities.

Asunto(s)

RESUMEN

Background: Spinal cord stimulation (SCS) clinical trials are evaluating its efficacy and safety for motor, sensory, and autonomic recovery following spinal cord injury (SCI). The perspectives of people living with SCI are not well known and can inform the planning, delivery, and translation of SCS. Objectives: To obtain input from people living with SCI on the top priorities for recovery, expected meaningful benefits, risk tolerance, clinical trial design, and overall interest in SCS. Methods: Data were collected anonymously from an online survey between February and May 2020. Results: A total of 223 respondents living with SCI completed the survey. The majority of respondents identified their gender as male (64%), were 10+ years post SCI (63%), and had a mean age of 50.8 years. Most individuals had a traumatic SCI (81%), and 45% classified themselves as having tetraplegia. Priorities for improved outcome for those with complete or incomplete tetraplegia included fine motor skills and upper body function, whereas priorities for complete or incomplete paraplegia included standing and walking, and bowel function. The meaningful benefits that are important to achieve are bowel and bladder care, less reliance on caregivers, and maintaining physical health. Perceived potential risks include further loss of function, neuropathic pain, and complications. Barriers to participation in clinical trials include inability to relocate, out-of-pocket expenses, and awareness of therapy. Respondents were more interested in transcutaneous SCS than epidural SCS (80% and 61%, respectively). Conclusion: SCS clinical trial design, participant recruitment, and translation of the technology can be improved by better reflecting the priorities and preferences of those living with SCI identified from this study.

Asunto(s)

RESUMEN

High-quality Early Childhood Education and Care (ECEC) is an important component of thriving communities. It is central to the socio-emotional and intellectual growth of young children, to the ability of parents to go to work, and to the ability of employers to find and retain workers. Despite this centrality, there is a profound shortage of ECEC in many communities, which has only been made worse by COVID-19. This study took place in rural Kentucky pre-pandemic, where approximately half of all residents lived in "childcare deserts"-a situation facing a growing number of communities. This research demonstrates that while financial factors affect the undersupply of childcare in a single community, there are also additional, more opaque, and under-theorized factors at play. Specifically, we argue that misconceptions around families' ability and willingness to pay for ECEC, what families prioritize in an ECEC setting, and ambiguous terminology result in misunderstandings and miscommunication that, in turn, affect perceived solutions to the problem of the childcare desert. In short, when different stakeholders use different language and assumptions to describe their goals and ideas about ECEC, it is hard to reach community consensus about how to add the high-quality options that families desire and value. Drawing upon survey and interview data collected from parents and childcare providers, as well as local newspaper articles and during community forums, we uncover barriers that may hinder efforts to strengthen ECEC options; notably, many barriers are surmountable. Ultimately, this research points to concrete steps that communities can take to help bolster ECEC and, thus, communities at large.

RESUMEN

INTRODUCTION: Opioid use disorder is a leading public health issue in the USA, with complex drivers requiring a multi-level response. Rural communities are particularly affected by opioid misuse. Due to variability in local conditions and resources, they require community-specific responses. The aim of this study was to gain insight into the perceptions, knowledge, and experiences of members of a rural community impacted by the opioid crisis to inform the development of local strategies to address the crisis. METHODS: Stakeholder focus groups were conducted by a participatory research team as part of a larger project using the Stakeholder Engagement in Question Development and Prioritization (SEED) Method. RESULTS: Key findings from the focus groups included the importance of family dynamics and social networks as risk and resiliency factors, addressing hopelessness as a preventive strategy, the need for holistic approaches to treatment, childhood exposure resulting in intergenerational substance use, the needs of overburdened healthcare providers, the expansion of long-term rehabilitation programs, and the need for judicial reform towards those with opioid use disorder. Specific and well-defined strategies are needed for more comprehensive methods to address the complexity of opioid use disorder. Understanding factors that contribute to opioid use disorder in rural communities through a stakeholder engagement process should be the first responsive strategy in developing actions. CONCLUSION: This study shows that rural community stakeholders provide important perspectives that can be useful in solving the drug epidemic in their neighborhoods. Their understanding of the internal dynamics of the communities' needs offers a unique roadmap in which prioritized actions can be customized and adapted for improving health outcomes.

Asunto(s)

RESUMEN

OBJECTIVES: Bangladesh has achieved notable success in improving maternal health by increasing women's access to good quality and low-cost maternal health care (MHC) services. However, the health system of Bangladesh has earned criticism for not ensuring equitable MHC access for all women, particularly for Indigenous women in the Chittagong Hill Tracts (CHT). Little is known about Indigenous communities' perspectives on these inequalities in MHC service access in the CHT. Therefore, this study aimed to explore Indigenous communities' perspectives on challenges and opportunities for improving MHC service access in the CHT. DESIGN: This qualitative descriptive study was conducted in two sub-districts of Khagrachhari between September 2017 and February 2018. Eight Indigenous key informants from three Indigenous communities (Chakma, Marma and Tripura) were recruited via snowballing and purposive techniques and participated in face-to-face, semi-structured interviews. Key informants comprised community leaders and health care providers. Data were analysed thematically using Nvivo12 software. RESULTS: Findings suggest that distance, poor availability of resources and infrastructure, lack of community engagement in the design of health interventions, Indigenous cultural beliefs, misconceptions about MHC services, and maltreatment from health care providers were the key barriers to accessing MHC services; all are interconnected. Indigenous women faced humiliation and maltreatment from MHC staff. Failure to provide a culturally-safe environment suggests a lack of cultural competency among health staff, including Indigenous staff. CONCLUSION: Findings suggest that cultural competency training for all health care providers is needed to improve cultural appropriateness and accessibility of services. Refresher training and undisrupted supply of basic MHC services for front-line care providers will benefit the entire community and will likely be cost-effective for the government. Designing health programmes through extensive community consultation is essential.

Asunto(s)

RESUMEN

The law regulating medical end-of-life decisions aims to support patients to receive high-quality health care. It does so through ensuring treatment received reflects the person's wishes and values and protecting health professionals who provide adequate pain and symptom relief even if that treatment may coincidentally hasten death. However, good decision-making is predicated by those involved, including patients themselves and those supporting patients, being familiar with the law and the role it plays in the decision-making process. This article reports on a study exploring the role that law plays in end-of-life decision-making from the perspective of terminally-ill patients, their substitute decision-makers and family members. While participants' decision-making practices were often underpinned by a legal framework, the role of the law was largely invisible. Community education is needed for the public to know their legal rights and responsibilities, and to understand that the law plays a role in supporting end-of-life decision-making.

Asunto(s)

RESUMEN

This study offers a qualitative comparison of risk factors for youth violence from the perspectives of community stakeholders in a low-income, urban community experiencing elevated rates of violence. One-on-one interviews were conducted with 36 community stakeholders across three key categories: 10 community residents who cared for youth living in the community, 15 program or service providers, and 11 leaders in community agencies and organizations. A grounded theory approach was used for data collection and analysis to extract themes that emerged from the question, "What are the things in the community that lead to youth violence?" While there was significant overlap in stakeholders' beliefs about precursors to youth violence, important differences also emerged. In order for youth violence prevention strategies to be successful, they must consider and address risk factors identified by community stakeholders involved in the implementation and sustainability.

Asunto(s)

RESUMEN

Two-thirds of Nigeria's childhood deaths is attributable to four preventable/curable diseases-diarrhoea, malaria, meningitis and pneumonia (DMMP). Community perspectives and caregivers' practices about these child-killer diseases are poorly documented. Drawing on individual and group interviews (n=259), we explored community members' perspectives, and caregivers' practices/responses regarding DMMP among children across Nigeria's three major ethnic groups. Using deductive reasoning and data analysis in Atlas.ti, results from the narratives formed four thematic issues-respondents' perception and knowledge about the causes of the diseases; perception and knowledge about prevention; perception and knowledge of symptoms and fatality of the diseases; and caregivers' practices regarding the prevention and management of the diseases. Results demonstrate significant misconception about the aetiology of pneumonia and meningitis. We found ostensible disconnection between knowledge and practice. Interventions including health education programmes/sensitizations on the causes, prevention/management of DMMP are necessary to achieve reduction in the burden of childhood mortality in Nigeria.

RESUMEN

BACKGROUND: Religious mass gatherings (MGs) have always been an integral part of our society. At the outset, mass-gathering events provide challenging settings to plan a suitable emergency public health response. Published studies basically talk about retrospective reviews, case studies of the public health preparedness, or health care provided at individual events. Developing an understanding of the variables associated with MGs is the first step for public health managers. Risk assessment (RA) is a crucial part of pre-event planning as it helps foresee potential risks. Based on RA, one can develop preventive measures and ensure that the infrastructure to control the potential problems is in place. This study is an attempt to systemize RA process during MG events in a country that is culturally rich but with poor resources to handle such events. A RA tool will be developed for planning and management of religious MG events of India. METHODS/DESIGN: Various strategies will be used to develop the risk assessment tool (RA tool). Extensive review of literature clubbed with key informant interviews will be done in order to identify the risk variables and decide the domains and items of the tool. Further, this tool will be developed as a mobile-based application. The feasibility of the mobile-based RA tool will be tested in real-time MG event in one part of the country. Concurrently in the same event, a community survey of residents and visitors will be done in order to assess public perceptions of public health and environmental risks associated with MG events. DISCUSSION: The findings of this study will provide insights into the public health and environmental concerns that need to be considered if preventive strategies and intervention programs are to be designed for MG events. A "RA Tool," which can be used in the planning and management of MG events by the public health managers will strengthen the existing health systems preparedness plans for MGs.

RESUMEN

BACKGROUND: Auxiliary Midwives (AMWs) are unpaid volunteer health workers assisting qualified paid midwives in maternal and child health care mainly in hard-to-reach areas of Myanmar. This paper describes the relationship between AMWs and the health system in providing maternal and child services as perceived by the community, AMWs themselves and health care providers in one remote township of Myanmar. METHOD: A qualitative study was conducted in Ngape Township, Myanmar. A total of 15 focus group discussions with midwives, AMWs, community members and mothers were conducted. Ten key informant interviews were performed with national, district and township level health planners and implementers of maternal and child health services. Thematic analysis was done using the ATLAS.ti software. RESULTS: AMWs occupy a unique position between the community and the health sector in the study township. The relationship and trust with the community is built upon prolonged presence providing health care, skill building and fulfilling community expectations. Health care providers' expectations to provide only preventive care, health promotion and education and childbirth care are often exceeded in reality when emergencies occur in hard-to-reach areas. This challenge to handle emergency situations with no support and limited skills and training is considered as most difficult by the AMWs. This mismatch of service provision expectations by both the community and other health care providers has put AMWs in a position which they describe as being the "salt between the beans" an essential ingredient but often invisible between the beans. CONCLUSION: The trust and relationship developed by AMWs over four decades of community practice serving as the mediator role is an untapped resource that can facilitate future community-based maternal and child health interventions in Myanmar.

Asunto(s)

RESUMEN

BACKGROUND: Innovative and cost-effective strategies that clear asymptomatic malaria infections are required to reach malaria elimination goals, but remain a challenge. This mixed methods study explored people's attitudes towards the reactive treatment of compound contacts of malaria cases with a 3-day course of dihydroartemisinin-piperaquine (DHAP), the socio-cultural representations of asymptomatic infections, and more specifically their treatment. METHODS: Prior to the start of the intervention, a sequential mixed method study was carried out. Qualitative data collection involved in-depth interviews and participant observations (including informal conversations) with key informants from the trial communities and the trial staff. Quantitative data were derived from a pre-trial cross-sectional survey on health literacy and health-seeking behaviour among randomly selected members of the study communities. RESULTS: In the pre-trial cross-sectional survey, 73% of respondents reported that malaria could be hidden in the body without symptoms. Whilst this may be interpreted as people's comprehension of asymptomatic malaria, qualitative data indicated that informants had different interpretations of asymptomatic disease than the biomedical model. It was described as: (i) a minor illness that does not prevent people carrying out daily activities; (ii) an illness that oscillates between symptomatic and asymptomatic phases; and, (iii) a condition where disease agents are present in the body but remain hidden, without signs and symptoms, until something triggers their manifestation. Furthermore, this form of hidden malaria was reported to be most present in those living in the same compound with a malaria case (71%). CONCLUSION: Treating asymptomatic malaria with pharmaceuticals was considered acceptable. However, people felt uncertain to take treatment without screening for malaria first, largely due to the lack of symptoms. Knowledge of asymptomatic malaria was not a strong re-inforcement for treatment adherence. In this study, the pre-intervention active engagement of communities existed of having people co-design accurate information messages about their personal risk of malaria, which increased their trust in expert knowledge and thus proved essential for the successful implementation of the community-based intervention.

Asunto(s)

RESUMEN

BACKGROUND: The Global Program for the Elimination of Lymphatic Filariasis (GPELF) started operation in 2000 and aimed at eliminating the disease by the year 2020, following 5-6 rounds of effective annual Mass Drug Administration (MDA). The MDA programme took off in Ghana in 2001 and has interrupted transmission in many areas while it has persisted in some areas after 10 or more rounds of MDA. This study was to appreciate community members' perspectives on MDA after over 15 years of implementation. Findings will inform strategies to mobilise community members to participate fully in MDA to enhance the disease elimination process. METHODS: This was a qualitative study, employing key-informant in-depth-interviews. Respondents were selected based on their recognition by community members as opinion leaders and persons who were knowledgeable about the topic of interest in the community. A snowball sampling technique was used to select respondents. RESULTS: Respondents were well informed about the MDA with most of them saying, it has been implemented for over 12 years. They were aware that the MDA was for the treatment/control of LF (elephantiasis). It came to light that MDA compliance was affected by five related barriers. These are; Medication, Personal, Health system, Disease and Social structure related barriers. Adverse effects of the drugs and the fact that many people perceived that they were not susceptibility to the infection have grossly affected the ingestion of the drugs. CONCLUSION: There is a need for community mobilization and promotional activities to explain the expected adverse reactions associated with the drugs to the people. Also the importance of why every qualified person in the community must comply with MDA must be emphasized.

Asunto(s)

RESUMEN

Intimate partner violence (IPV) is a major public health problem and global human rights violation. Effective interventions can only be created upon conducting qualitative studies that explore the cultural context of an affected population and how they interpret the phenomenon. This qualitative study investigated Kenyan women's perceptions of IPV. Two community-based focus groups ( n = 19) were conducted with Kenyan women in Nairobi. Conventional content analysis identified seven primary themes that emerged from focus group data: snapshot of violence; poverty; cultural context; masculinity; women taking action; resources; and, prevention strategies. Themes are described and implications for further research and intervention are presented.

Asunto(s)

RESUMEN

BACKGROUND: After 30 years, the human immunodeficiency virus (HIV) remains an epidemic of global concern. To support the increasing emphasis on biomedical interventions for prevention requires a renewed and reframed focus on HIV prevention messages to motivate engagement in risk-reduction activities. This paper examines youth and adult perceptions of HIV prevention messages and HIV risk assessment in a generalized HIV epidemic context in Uganda. METHODS: We conducted 24 focus group discussions and 24 in-depth interviews with 15-45 year olds (n = 218) from three communities in the Rakai district of Uganda in 2012. RESULTS: We found generational differences in the how people viewed HIV, skepticism around introduction of new interventions, continued misconceptions and fears about condoms, and gender differences in content and salience of HIV prevention messages. CONCLUSIONS: Shifts in HIV education are needed to address gaps in HIV messaging to foster engagement in risk reduction strategies and adoption of newer biomedical approaches to HIV prevention.

Asunto(s)

RESUMEN

Following the goals of Community Based Participatory Research (CBPR), this paper describes how Native Hawaiian values emerged as a methodology for the conduct of a study with Native Hawaiians residing in Southern California. The equitable placing of community values side by side with scientific values show that community concepts can parallel and extend CBPR premises and are more than a variable to be added in the analysis. The community partners, whose voices guide this paper, introduced the values associated with the concepts of "aloha," "malama," "maihilahila," "na'auao," and "ano ano hua." These concepts were employed and maintained throughout the study that assessed diet, obesity, and psychosocial factors related to food and nutrition as a cancer prevention method. We describe and examine these values in light of persistent challenges in CBPR; ensuring that the topic is a community driven issue, fair representation and data dissemination. We argue that Native Hawaiian values are touchstones that intersect in important ways with the goals of CBPR - equality, respecting each other's strengths and the elimination of health disparities for future generations.