Community-based Service Providers Research Articles

Utility of a virtual small group cognitive behaviour program for autistic children during the pandemic: evidence from a community-based implementation study

BackgroundAutistic children often experience socioemotional difficulties relating to emotion regulation and mental health problems. Supports for autistic children involve the use of adapted interventions that target emotion regulation and social skills, alongside mental health symptoms. The Secret Agent Society Small Group (SAS: SG), an adapted cognitive behavioural program, has demonstrated efficacy through lab-delivered randomized control trials. However, research is still needed on its effectiveness when delivered by publicly funded, community-based autism providers under real-world ecologically valid conditions, especially within the context of a pandemic. The COVID-19 pandemic has disrupted access to community-based supports and services for autistic children, and programs have adapted their services to online platforms. However, questions remain about the feasibility and clinical utility of evidence-based interventions and services delivered virtually in community-based settings.MethodsThe 9-week SAS: SG program was delivered virtually by seven community-based autism service providers during 2020–2021. The program included the use of computer-based games, role-playing tasks, and home missions. Caregivers completed surveys at three timepoints: pre-, post-intervention, and after a 3-month follow-up session. Surveys assessed caregivers’ perception of the program’s acceptability and level of satisfaction, as well as their child’s social and emotional regulation skills and related mental health challenges.ResultsA total of 77 caregivers (94% gender identity females; Mean = 42.1 years, SD = 6.5 years) and their children (79% gender identity males; Mean = 9.9 years, SD = 1.3 years) completed the SAS: SG program. Caregivers agreed that the program was acceptable (95%) and were highly satisfied (90%). Caregivers reported significant reduction in their child’s emotion reactivity from pre- to post-intervention (-1.78 (95% CI, -3.20 to -0.29), p = 0.01, d = 0.36), that continued to decrease after the 3-month booster session (-1.75 (95% CI, -3.34 to -0.16), p = 0.02, d = 0.33). Similarly, improvements in anxiety symptoms were observed (3.05 (95% CI, 0.72 to 5.36), p = 0.006, d = 0.39).ConclusionsAs online delivery of interventions for autistic children remains popular past the pandemic, our findings shed light on future considerations for community-based services, including therapists and agency leaders, on how best to tailor and optimally deliver virtually based programming.Trial registrationThis study has been registered with ISRCTN Registry (ISRCTN98068608) on 15/09/2023. The study was retroactively registered.

Temporalities of emergency: the experiences of Indigenous women with traumatic brain injury from violence waiting for healthcare and service support in Australia

ABSTRACT Globally, traumatic brain injury (TBI) has been recognised as a serious health issue not only because of the immediate impacts at the time the injury occurs but even more so due to the longstanding impacts. Even though TBI is a globally recognised condition, the research is disproportionately focused on its incidence in, and immediate and long-term effects on men. A growing body of research suggests that generally, women who experience family violence are at high risk of TBI and suffer its impacts in ways that reflect gendered differences in the patterns and frequency of violence. In Australia, the social and physical costs of TBI are multiplied for Indigenous women, whose experience of disability and access to healthcare lies at the intersection of gender and race in the historical context of settler colonialism. The present study addresses the need for research into the sociodemographic inequalities that affect access to culturally appropriate hospital care, timely response systems, and flexible, safe and engaged social services. This paper draws on data from interviews and focus groups with Indigenous women, hospital staff and community-based service providers and suggests potential pathways for further research in settler-colonial settings elsewhere in the world.

A graduate student-staffed, low-cost mental health program: a community-based model to increase access to services

ABSTRACT Student-run and student-staffed behavioral health clinics increase service capacity and access to low-cost services and are usually created by medical schools and behavioral health graduate programs. There is little information about student-staffed programs developing independently of academic institutions. As the demand for mental health services continues to grow, it is essential that successful models of community-based service provision are shared so other agencies can replicate models and increase service capacity. This article outlines the elements of a student-staffed behavioral health program model run by a nonprofit. Details on staffing, student selection, supervision, evaluation methods, supplemental training, and funding are included.

Collection, Storage, and Use of Client Data: Considerations and Recommendations for Human Trafficking Service Providers

ABSTRACT We are a team of university-based researchers who have decades of experience collaborating with multiple community-based human trafficking (HT), domestic violence, and sexual violence programs on research projects. In this paper, we provide recommendations for HT agencies on routine data collection, storage, and use based on our insights from working closely with multiple community-based HT service provider agencies. In this opinion piece, we consider important questions that HT programs face related to data. We present our recommendations as they pertain to three main challenges: (1) Which data to collect, and how; (2) How to store data; and (3) How to analyze data. We include a list of nine routine data elements that HT service providers may prioritize for data collection, a table with eight actionable recommendations, and a short glossary of program monitoring and evaluation terms. The article makes a pragmatic contribution to best practices in HT provider operations and therefore has implications for administrators of HT programs, data personnel at HT programs, and policies related to data, information, technology, and safety for HT program service provision.

Development of a Community Informed Approach for Implementing Support Network Trainings for Children with Autism Spectrum Disorder in Western Kenya

Background:Autism spectrum disorder (ASD) impacts a large global community, with a prevalence of nearly 1 in 100 children. However, little is known about the educational experience of children with ASD and other neurodevelopmental disorders (NDD) in low- and middle-income countries (LMICs). Guidance from local communities is essential when developing a cultural inquiry into this educational landscape. Our project objective was to evaluate community perspectives on ASD and areas of development for future support network trainings.
 Methods:This qualitative study was performed within the Academic Model Providing Access to Healthcare (AMPATH) program in Eldoret, Kenya. Using group discussions, this approach engaged stakeholders from three areas: medical personnel, educators, and caregivers/families. Kenyan professionals in child psychiatry, occupational therapy, and special education guided discussion and led the recruitment of key informants for interviews. Within this qualitative analysis, brief thematic analysis of dialogue elucidated key themes.
 Results:Four focus groups were held, with 87 total participants (group size = 12-29). Four main themes were identified in the data: beliefs about causes, treatment options, barriers to education, and a need for community advocacy. Advocacy was a major focus of discussions, due to a sentiment of fragmentation and poor acceptance from the community. Stigmatization carried over into localbeliefs about causes of ASD, which included poor nutrition, witchcraft, and genetics. Finding resources to access education and therapy was a challenge, especially for families in rural settings. These viewpoints informed study protocol adaptation by expanding recruitment to include community-based service providers and staff from additional schools, and integrating themes into interview questions.
 Conclusion:This project prioritized dialogue with stakeholders to gain insights to inform the development of a cultural inquiry into the special education landscape in western Kenya. Themes elucidated from this project provided critical feedback to inform future study protocol and an expanded recruitment plan.

A DISCUSSION ON THE STATE OF AFFAIRS ON DIRECT ACTION TO SUPPORT OLDER ADULTS DURING DISASTERS

Abstract As the frequency and severity of disasters increases, supporting older adults before, during, and after disasters is paramount. Steps toward adequate disaster preparedness include ensuring older adults possess awareness of increased disaster and hazard events and understand their role in preparedness. This symposium will address the current state of affairs in the United States (US) on direct actions to support older adults before, during, and following major disasters. Additionally it will provide context on how continuing effects of climate change impact these efforts. Dr. Lisa Brown will share perspectives and describe efforts of the US National Advisory Committee on Seniors and Disasters. Dr. Sue Anne Bell will discuss the role of implementation science in improving the emergency preparedness in nursing homes. Dr. Lindsay Peterson will describe existing state policies around home and community-based service providers. Dr. Tamar Wyte-Lake will share directions the Department of Veterans Affairs is moving in to best support vulnerable populations, focusing on older Veterans. Dr. Karl Pillemer will address the role of older adults as active agents in climate change prevention and mediation. Dr. David Dosa will act as discussant. These presenters will provide important insights into ongoing efforts while highlighting areas in need of improvement and aligned action, with the hopes that this will generate important discussions well into the future. This is a Disasters and Older Adults Interest Group Sponsored Symposium.

IDENTIFYING THE RELATIONSHIP BETWEEN ALZHEIMER’S DISEASE PREVALENCE AND CURRENT SERVICE USE IN OHIO’S 88 COUNTIES

Abstract Recently released data reveals that over 235,000 people over the age of 65 have Alzheimer’s disease and related dementia (ADRD) in Ohio. Using 2020 data from the National Center for Health Statistics, county-level specific ADRD prevalence estimates for Ohio’s 88 counties were also prepared (Range: 9.4-13.4 per 1000 individuals 65+). Researchers, practitioners, and policy-makers can use these estimates to better understand the reach and impact of ADRD in local communities. Nationally and in Ohio, care and support for older adults and specifically older adults with ADRD typically falls to family caregivers, home- and community-based service (HCBS) providers, and residential care providers such as nursing homes. This study pairs the county-level ADRD prevalence data with county-level data on available services (e.g., Memory Care Units, nursing home beds) and service users (e.g., HCBS users). The 10 counties in Ohio with the highest prevalence rates are home to nearly 60% of the 65+ population statewide. Additionally, these counties had a significantly higher proportion of older Black/Hispanic individuals than the other counties (10.8 versus 2.9). When looking at capacity, the top 10 counties contained just 12% of all nursing home beds, but 54% of nursing homes memory care units for the entire state. When considering service use, these 10 counties served a smaller percentage of the state’s HCBS users (13%). For Ohio and other states, it is important to explore available services and current service usage when faced with the increasing estimates of people living with ADRD.

Working With Immigrants Who Are Child Welfare Involved: Promoting Innovative Collaborations and Systems Involvement During a Public Health Crisis

The COVID-19 pandemic has had notable impacts on public child welfare systems and their ability to serve families. For immigrant families who enter the child welfare system, pandemic-related challenges were exacerbated on top of existing immigration-related stressors and barriers. This study used in-depth qualitative interviewing with child welfare agency staff and community-based service provider partners working with immigrants to explore their experiences in providing services to families navigating this unprecedented context. Results highlight the adaptations implemented to engage immigrant clients and facilitate interagency collaboration in light of barriers imposed by the pandemic. Practice implications center the need for child abuse and neglection prevention efforts to start in community and demand collaboration between government-based child welfare agencies and a range of grassroots, trusted community providers.

Perspectives on implementing Individual Placement and Support (IPS) within primary health care settings for adults living in British Columbia, Canada

BackgroundIndividual placement and support (IPS) is an evidence-based practice (EBP) designed to help people with severe mental illness re-enter the labour market. Implementing an IPS program within a new context (e.g., primary health care setting) to support populations that are complex and multi-barriered presents a set of unique challenges and considerations. This paper provides community-based perspectives that identify implementation strengths and challenges and highlights potential strategies aimed at addressing emergent barriers.MethodsA case study was conducted across three community health centres in British Columbia (BC), Canada, where a novel IPS program was embedded within primary care services. Data collection consisted of open-ended surveys and focus groups with service providers directly involved in program implementation and their associated clinical and managerial support teams (n = 15). Using the updated Consolidated Framework for Implementation Research (CFIR) as a guide, we performed deductive thematic analysis to identify key areas impacting IPS implementation.ResultsIntegration with existing health care systems and primary health care teams and support from leadership across all levels were identified as both key facilitators and barriers to implementation. Facilitators and barriers were identified across all domains, with those within innovation and process most easily addressed. Four cross-cutting themes emerged for promoting more integrated and sustainable program implementation: investing in pre-implementation activities, supporting a dynamic and flexible program, building from community experiences, and developing a system for shared knowledge.ConclusionsImplementing an IPS program embedded within primary health care settings is complex and requires extensive planning and consultation with community-based service providers and decision-makers to achieve full integration. Future practice and policy decisions aimed at supporting employment and well-being should be made in collaboration with communities.

A Study on Community needs, perceptions and demand regarding the use of the health services during COVID-19 pandemic in district Kathua, J and K.

The impact of the COVID-19 pandemic on essential health services is a source of great concern. Health gains made during the last 2-3 decades have been halted due to shifting of resources to fight the COVID-19 pandemic. This study was conducted to identify community needs, demands, and perceptions regarding the effectiveness of using health services during the pandemic. This was a qualitative study which was conducted through focus group discussions. The participants comprised of three groups: community leaders, healthcare providers, and field workers. Discussion among the participants was conducted using the standardized World Health Organization community assessment tool. In our study, it was reported that most of the essential health services were disrupted due to COVID-19 pandemic. The barriers to accessing essential health services have been exacerbated and the provision of community-based services is effected due to this. In regard to COVID-19 vaccination also, there remain individuals who are reluctant to be vaccinated. Our study shows that the community faced barriers in accessing and using health services during the pandemic. To ensure the public's access to health services and strengthen healthcare preparedness strategies like health budget allocation, manpower, infrastructure, trainings, integration with primary healthcare, etc., need to be carried out during and after the pandemic. Thus, participation and inter-sectoral coordination across levels are required to overcome these barriers.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014–2018

ObjectiveUnderstanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. MethodsThis descriptive study uses Colorado’s All Payer Claims Dataset 2014–2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. ResultsDisability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)—Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). ConclusionsCWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

Exploring Patients’ and Caregivers’ Perception of Healthcare Provision to Cancer Patients During the COVID-19 Pandemic: A Qualitative Study

Background: Patients with cancer are among the groups that are vulnerable to the COVID-19 crisis. Identifying the factors affecting the process of healthcare provision can improve the health services provided to cancer patients. Therefore, this study aimed to explain stakeholders’ perception of the healthcare services provided to cancer patients during the COVID-19 pandemic. Methods: The present qualitative study was conducted using the conventional content analysis method in Iran in 2021. Participants included cancer patients, their families, and healthcare providers, who were selected via purposive sampling. Data were collected through 19 individual interviews and two focus groups and then analyzed using the method proposed by Graneheim and Lundman. Results: Qualitative data analysis revealed seven main categories, including the disruption of care continuity, reduced quality of health services, poor provision of community-based services, lack of comprehensive care, lack of public education, predicting changes in cancer incidence and mortality trends, and ethical challenges. Conclusion: The COVID-19 pandemic has exposed cancer patients to many challenges, including limited access to health services. Therefore, there is a need to facilitate these patients’ access to safe healthcare services.

Consistency of participation over time among persons aging with physical disability as measured by a tool designed for use among community-based organizations

BackgroundCommunity participation measures for persons aging with disability were developed and evaluated to support community-based organizations (CBOs) with efficient assessment of change in participation and need for supports/services to facilitate participation. ObjectiveTo evaluate a set of nine activity domain measures to broadly assess community participation and change in participation over time. MethodsA community-based sample (N = 323) of persons ages 45–65 responded to a survey with repeated measures three times annually (T1, T2, T3) between 2019 and 2022. Nine activity domain measures were developed based on extant research and evaluated with assistance from community-based support service providers. Statistical analyses employed T-tests and chi-square tests to assess change in participation over time, perceptions of participation satisfaction, and assistance needed to facilitate participation. Participants were asked if they thought changes were attributable to aging, the COVID-19 pandemic, or other factors. ResultsFindings showed varying levels of participation across the nine activity domains, with the lowest participation rate for employment and the highest participation rates for personal leisure and managing medications across T1, T2, and T3. Change in participation over the three-year period was limited; most change was reported as activity reduction. In general, respondents indicated that reduction was due to their aging or the COVID-19 pandemic. Personal assistance, transportation, environmental modifications, and improved health were identified as factors needed to help increase participation levels. ConclusionThe activity domain measures demonstrated efficiency in identifying participation rates and change. CBOs may deem them useful for assessing support and service needs to facilitate participation.

Lessons Learned From a Community–University Partnership to Increase HIV Testing Services for Emerging Adults at a Minority-Serving Institution

The success and advancement of HIV prevention efforts with emerging adults from minority communities requires continued and diligent collaboration between researchers, community members, and community-based organizations. This paper provides an overview of a 3-year collaboration between a Minority Serving Institution of Higher Education, and a grassroots, minority servicing HIV prevention agency. In South Florida, a geographic area with high incidence of HIV, we relied on community-based participatory research (CBPR) to guide the implementation of culturally, linguistically, and developmentally appropriate HIV prevention programming for 18 to 24-year-old Latinx university students. The project partnership was organized around: (a) integrating community knowledge through formative research to understand needs and determine relevant risk factors, (b) building a highly collaborative relationship between a large academic institution and community-based service provider, and (c) designing and implementing ongoing, strategic environmental prevention activities through community-involved research. We describe the collaborative partnership and multiple prevention strategies that were implemented. The success of the community–university partnership was highly dependent on the depth and breadth of collaboration, mutual support, and respect among collaborators. To advance sexual health promotion programs designed for Latinx emerging adults, we describe lessons learned for future CBPR implementation that focus on involving members of priority populations in research teams, aligning project voices, navigating internal governmental systems, creating mutual and direct benefits of partnership, and utilizing networks to enhance sustainability.

Causes and decision paths of employee turnover in the homeless service sector

ABSTRACT Community-based service providers working with people experiencing homelessness encounter many occupational challenges and high turnover rates are a challenge in the sector. This qualitative study examined the perceived causes and decision paths of turnover among service providers working with people experiencing homelessness in Canada. In-depth interviews were completed with 40 service providers working in homeless service, supportive housing, and harm reduction programs. Thematic analysis and a deductive-based matrix analysis were used to identify causes and decision paths of turnover, respectively. Primary causes of employee turnover included: (1) career advancement and growth; (2) incongruence between providers’ needs, values, and work position; (3) mental health deteriorations; (4) organizational stability and support issues; and (5) staff dismissal. Further, two contextual factors – low sectoral wages and a transitory work culture – shaped service providers’ occupational experiences and had indirect effects on turnover. Push and pull decisions were the primary paths to voluntary turnover among participants. Overall, the findings highlight that employee turnover often occurs voluntarily when service providers experience unmet occupational or work-interacting personal needs, or want to pursue new career-related opportunities. Practice and policy recommendations, including use of realistic job previews and establishment of workforce development strategies, are made to prevent turnover.

Barriers to Effective Communication about Advance Care Planning and Palliative Care: A Qualitative Study.

The purpose of this study was to identify barriers to effective conversations about advance care planning (ACP) and palliative care reported by health care and community-based service providers in Massachusetts, USA. This qualitative research analyzed open-ended responses to two survey questions, inquiring about perceived barriers to having conversations about ACP and palliative care with patients and consumers. Data were collected between November 2017 and June 2019 from nine organizations in Massachusetts, including health care provider organizations, health insurers, community-based organizations, and a nursing education institution. Two researchers reviewed and coded the responses and identified common themes inductively. Across 142 responses, primary barriers to ACP included hesitation and lack of understanding and knowledge, discomfort and resistance among service providers, lack of staff knowledge, difficulties with follow-up, and differences in ACP policies across regions. Common barriers to palliative care were misconceptions about palliative care and lack of knowledge, service providers' lack of preparedness, and limited policy support and availability. Challenges relevant to both ACP and palliative care were fear and discomfort around serious illness discussions, lack of knowledge and awareness, discussions that occur too late, and cultural and language barriers. Health care practitioners and community-based professionals reported consumer-, service provider-, and system-level barriers to facilitating conversations about ACP and palliative care with patients experiencing serious illness. There is a need for more tools and support to strengthen service providers' ACP and palliative care competencies and to promote a structured approach to health care planning conversations.

Leveraging Delaware's Public Health Resources to Mitigate Spread of Communicable Diseases in Congregate Settings.

While resources available to public health entities increased during the COVID-19 pandemic, the need to focus mitigation efforts on Delaware's most vulnerable citizens was evident. The higher risk of community-spread and complications resulting from COVID-19 associated with individuals residing in congregate settings such as homeless shelters and encampments prompted the Delaware Division of Public Health to leverage existing and new resources to provide technical assistance, education and to build valuable partnerships with community-based homeless service providers to reduce the public health threat to those experiencing homelessness.

Resilience among primary care professionals in a time of pandemic: a qualitative study in the Spanish context

ObjectivesThis study explores the impact of the COVID-19 pandemic on the Spanish primary care structure and services and the mechanisms implemented by the primary care workforce to restore and reinforce...

Adult Protective Services Perspectives on Responding to Elder Abuse and Serving Clients During the COVID-19 Pandemic.

The initial COVID-19 pandemic and subsequent public health measures dramatically impacted Adult Protective Services (APS), requiring rapid adjustments. Our goal was to describe challenges for APS and strategies developed to respond. We conducted six focus groups and seven interviews during March-April 2021 using a semi-structured topic guide, with 31 participants from APS leadership, supervisors, and caseworkers in New York City, a community hard hit by the initial COVID surge. Data from transcripts were analyzed to identify themes. Participants identified challenges faced by APS (e.g., clients less willing to engage with APS, inability to perform necessary job tasks remotely, and low staffing levels) as well as strategies APS used in response (e.g., increasing collaboration with other community-based programs and service providers, enabling remote court hearings through technology and in-person facilitation, and ensuring staff had access to personal protective equipment). These findings may inform APS planning for future large-scale societal disruptions.

"Working on a Shoestring": Critical Resource Challenges and Place-Based Considerations for Telehealth in Northern Saskatchewan, Canada.

Rural, remote, and northern Indigenous communities in Canada frequently face limited access to healthcare services with ongoing physician and staff shortages, inadequate infrastructure, and resource challenges. These healthcare gaps have produced significantly poorer health outcomes for people living in remote communities than those living in southern and urban regions who have timely access to care. Telehealth has played a critical role in bridging long-standing gaps in accessing healthcare services by connecting patients and providers across distance. While the adoption of telehealth in Northern Saskatchewan is growing, its initial implementation faced several barriers related to limited and stretched human and financial resources, infrastructure challenges such as unreliable broadband, and a lack of community involvement and engaged decision-making. Emerging ethical issues during the initial implementation of telehealth in community contexts have been wide ranging including concerns around privacy that have also shaped patients' experiences and particularly the need to consider place and space within rural contexts. Drawing from a qualitative study with four Northern Saskatchewan communities, this paper offers critical perspectives on the resource challenges and place-based considerations that are shaping telehealth in the Saskatchewan context and provides recommendations and lessons learned that could inform other Canadian regions and countries. This work responds to the ethics of tele-healthcare in rural communities in Canada and contributes perspectives of community-based service providers, advisors, and researchers.