The Global Intellectual Disability Nursing Research Collaboratory: Forming an international transformational nursing network.

AIM: This paper explains how we created the Global Intellectual Disability Nurse Research Collaboratory (GIDNRC), a transformative network. The GIDNRC aims to make improvements in the understanding, research, policy, clinical care, and support provided to people with an intellectual disability. BACKGROUND: In 2022, the World Health Organization (WHO) called upon healthcare leaders internationally to take actions to promote more equal healthcare for disabled persons. This paper promotes the GIDNRC as a way for professionals to work together to make more equal healthcare throughout the world for people with intellectual disabilities. SOURCES OF EVIDENCE: We created this paper by reviewing peer-reviewed literature and research, international policies, and nursing networking initiatives. DISCUSSION: This paper explores current policy, research, and practice issues that formed the basis of beginning the GIDNRC, including how the COVID-19 pandemic changed care. CONCLUSION: Nurses are over 50% of the world's health workforce. Therefore, they have the potential to make a large impact in making care for people with intellectual disability much more equal than currently exists throughout the world. However, barriers exist. Forming the GIDNRC, as well as using the World Wide Web, offers an opportunity to address barriers to this goal. IMPLICATIONS FOR NURSING PRACTICE: Nurses can address the needs of people with intellectual disability in their daily nursing practice. The GIDNRC aims to strengthen these clinical skills, understand how care may vary throughout the world, and share knowledge, good practices, and new ways to approach care for people with an intellectual disability worldwide. IMPLICATIONS FOR NURSING POLICY: International nursing policy should actively focus on the needs of people with intellectual disabilities and the role nurses play in addressing these health needs. The GIDNRC may provide an important way to achieve developments in this policy.

Establishing Best Practices in Telehealth Care for Adults with Developmental Disabilities in the United States: An e-Delphi Study.

Background: Telehealth care is now a key element of mainstream health care since the COVID-19 pandemic, with all types of health care providers joining the digital revolution. As a population experiencing health care disparities, adults with developmental disabilities and their supporters have described variable experiences with telehealth care that contribute to overall care quality and health outcomes. Methods: This e-Delphi study established consensus on best practices in telehealth care for adults with developmental disabilities in the United States. Online surveys and videoconferencing interviews were conducted with 44 expert panelists with experience with telehealth care and developmental disabilities, including adults with developmental disabilities, family members, direct support professionals, nurses, and health care providers. Results: Three rounds of surveys resulted in a set of 9 guidelines consisting of 42 items. The guidelines addressed 1) appropriate situations for telehealth care, 2) communication needs and preferences, 3) support person collaboration, 4) education and anticipatory guidance, 5) reminders, 6) coordination of care, 7) equitable and fair access, 8) privacy and safety, and 9) evidence-based practice. Conclusion: Health care providers can adopt these best practice guidelines to ensure telehealth care is provided equitably and safely to adults with developmental disabilities. Policy advocacy is needed for the uptake of these guidelines and for health care providers and adults with developmental disabilities to access the resources needed for safe and effective telehealth care use.

Content analysis of qualitative interviews for user-centered design of a prototype mobile health app for direct support professionals' resilience.

BACKGROUND: Direct support professionals support people with intellectual and developmental disabilities with essential health and community living needs. Despite an unrelenting workforce shortage crisis, limited evidence-based resources exist for their support. Resilience, or the ability to thrive in the face of challenges, is a target for health care professional wellbeing initiatives. As an "invisible" workforce interspersed throughout various community-based settings, direct support professionals may benefit from resources provided via mobile health apps. OBJECTIVES: To assess direct support professionals' acceptability of and preferences for the design of a mobile health app prototype to support their resilience, DSP Thrive. METHOD: This concept generation and prototype design study employed a two-phase qualitative-descriptive design. Phase 1 assessed direct support professionals' acceptability of and preferences for a mobile health app for direct support professional resilience. Phase 2 elicited feedback on mock-up images of an initial prototype. Data were collected via qualitative interviews (n = 13), and transcripts were analyzed using content analysis. RESULTS: Phase 1: Direct support professionals identified three primary opportunities for an app to support their resilience: learning via educational resources, practicing resilience strategies, and cultivating a peer support network. Based on these findings, the DSP Thrive app prototype was designed with Learn, Practice, and Connect functions. Phase 2: User feedback on walk-throughs of mock-up images indicated initial acceptability of the prototype design with considerations for further development identified. CONCLUSIONS: Engaging direct support professionals in user-centered design of mobile health apps may help to bridge the gap to resilience resources for this essential workforce population.

Promoting Resilience in Direct Support Professionals of Adults With Intellectual and Developmental Disabilities: A Qualitative Descriptive Study.

The direct support professional (DSP) workforce shortage crisis has reached untenable levels during the COVID-19 pandemic as DSPs rapidly exit the workforce. To gain a better understanding of factors that contribute to DSP resilience during stressful and challenging times, we interviewed 10 DSPs identified by colleagues as resilient to elicit strategies to promote DSP resilience. Our content analysis revealed nine distinct strategies: (a) communication; (b) self-worth and recognition; (c) authentic, equitable relationships; (d) embracing change and learning; (e) establishing and maintaining boundaries; (f) cultivating an intentional mindset; (g) self-care; (h) spirituality/"the bigger picture"; and (i) a daily practice of humor and fun.

Supporting the needs of people with intellectual and developmental disabilities 1 year into the COVID-19 pandemic: An international, mixed methods study of nurses' perspectives.

As the largest public health crisis within a century, the COVID-19 pandemic has caused long-term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52-item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open-ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID-19-related isolation and quarantine. Content analysis of open-ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID-19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID-19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well-being of people with IDD during a long-term public health crisis.

Nurses' attitudes and emotions toward caring for adults with intellectual disability: An international replication study.

PURPOSE: Negative nurse attitudes and emotions toward caring for adults with intellectual disability have been implicated as a contributing factor to the cascade of health disparities faced by this population. The purpose of this study was to identify influencing factors of nurses' attitudes and emotions toward caring for adults with intellectual disability that transcend national borders and differing systems of care. METHODS: This cross-sectional correlational predictive replication study used an online electronic survey with a snowball sample of 115 Australian nurses, from March to August 2020. RESULTS: Nurses' attitudes toward adults with intellectual disability were significantly less positive compared to adults without intellectual disability, and nurses' beliefs about the quality of life of adults with intellectual disability predicted nurses' attitudes, replicating findings of the USA study. The frequency of both the professional and personal contact was associated with positive and negative emotions in both countries, however no consistent predictive pattern was evident. CONCLUSIONS: Our findings suggest that worldwide, there is room for improvement in nurses' attitudes and emotions toward this underserved group. Future research should investigate the role of nurses' beliefs about quality of life of adults with intellectual disability for potential interventions to improve nurses' attitudes toward care. CLINICAL RELEVANCE: Assisting nurses to identify misconceptions about the quality of life of adults with intellectual disability is suggested as an intervention to improve nurses' attitudes toward caring for adults with intellectual disability.

"We Were Absolutely in the Dark": Manifest Content Analysis of Developmental Disability Nurses' Experiences During the Early COVID-19 Pandemic.

People with developmental disabilities (DD) are devastatingly impacted by COVID-19, yet no studies have explored the experiences of developmental disability nurses during the pandemic. In April 2020, as part of a multiple method study, we used manifest content analysis to evaluate nurses' 287 open-ended responses to our online survey question: "What is the experience of being a developmental disability nurse while encountering challenges to meeting basic care needs during the early COVID-19 pandemic?" We identified four themes: living with fear and stress, helping others to understand and cope, navigating a changing landscape, and being left out. Findings reinforce the need for accessible health information for people with developmental disability, guidelines relevant to developmental disability nursing settings, emotional support for developmental disability nurses, and education of health care professionals about the contribution of the developmental disability nurse in supporting the holistic well-being of people with DD.

Impact of COVID-19: Nursing challenges to meeting the care needs of people with developmental disabilities.

BACKGROUND: People with developmental disabilities (DD) are a population at high-risk for poor outcomes related to COVID-19. COVID-19-specific risks, including greater comorbidities and congregate living situations in persons with DD compound existing health disparities. With their expertise in care of persons with DD and understanding of basic principles of infection control, DD nurses are well-prepared to advocate for the needs of people with DD during the COVID-19 pandemic. OBJECTIVE: To assess the challenges faced by nurses caring for persons with DD during the COVID-19 pandemic and how the challenges impact people with DD. METHODS: We surveyed 556 DD nurses, from April 6-20, 2020. The 35-item mixed-method survey asked nurses to rate the degree of challenges faced in meeting the care needs of people with DD. We analyzed responses based on presence of COVID-19 in the care setting and geographically. One open-ended question elicited challenges not included in the survey, which we analyzed using manifest content analysis. RESULTS: Startlingly, nurses reported being excluded from COVID-19 planning, and an absence of public health guidelines specific to persons with DD, despite their high-risk status. Obtaining PPE and sanitizers and meeting social-behavioral care needs were the most highly ranked challenges. COVID-19 impacted nurses' ability to maintain adequate staffing and perform essential aspects of care. No significant geographic differences were noted. CONCLUSIONS: DD nurses must be involved in public health planning and policy development to ensure that basic care needs of persons with DD are met, and the disproportionate burden of COVID-19 in this vulnerable population is reduced.

Nurses' attitudes and emotions toward caring for adults with intellectual disabilities: Results of a cross-sectional, correlational-predictive research study.

BACKGROUND: Negative healthcare provider attitudes may contribute to healthcare disparities in adults with intellectual disabilities. This study identified predictors of nurses' attitudes and emotions toward caring for adults with intellectual disabilities in the United States. METHOD: A convenience sample of 248 nurses was used to collect nurses' attitudes and emotions toward caring for adults with intellectual disabilities (Adapted Caring for Adults with Disabilities Questionnaire) and quality of life beliefs (Prognostic Beliefs Scale). RESULTS: Overall, nurses held less positive attitudes toward caring for an adult with intellectual disability versus a physical disability. Intellectual disability nurses held more positive attitudes and emotions and less negative emotions than non-intellectual disability nurses. Quality of life beliefs predicted nurse attitude, positive emotions and negative emotions. The number of adults with intellectual disabilities cared for during the nurse's career predicted negative emotions. CONCLUSIONS: Future interventions should focus on improving nurses' understanding of the quality of life of adults with intellectual disabilities.