Nursing care for persons with developmental disabilities: Review of literature on barriers and facilitators faced by nurses to provide care.

AIMS: To identify barriers and facilitators to nursing care of individuals with developmental disabilities (DDs). BACKGROUND: Individuals with DDs experience health disparities. Nurses, although well positioned to provide optimal care to this population, face challenges. DESIGN: Narrative review of extant published peer-reviewed literature. DATA SOURCES: Electronic databases, ProQuest and EBSCO, were searched for studies published in English between 2000 and 2019. REVIEW METHODS: Three reviewers reviewed abstracts and completed data extraction. Knowledge synthesis was completed by evaluating the 17 selected studies. RESULTS: Emerging themes were: (1) barriers and challenges to nursing interventions; (2) facilitators to nursing care; and (3) recommendations for nursing education, policy and practice. CONCLUSION: Nursing has the potential to be a key partner in supporting the health of people with DDs. IMPACT: There is a need for specific education and training, so nurses are better equipped to provide care for people with DDs.

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.

Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines.

OBJECTIVE: To update the 2011 Canadian guidelines for primary care of adults with intellectual and developmental disabilities (IDD). METHODS: Family physicians and other health professionals experienced in the care of people with IDD reviewed and synthesized recent empirical, ecosystem, expert, and experiential knowledge. A system was developed to grade the strength of recommendations. RECOMMENDATIONS: Adults with IDD are a heterogeneous group of patients and have health conditions and factors affecting their health that can vary in kind, manifestation, severity, or complexity from those of others in the community. They require approaches to care and interventions that are adapted to their needs. These guidelines provide advice regarding standards of care. References to clinical tools and other practical resources are incorporated. The approaches to care that are outlined here can be applied to other groups of patients that have impairments in cognitive, communicative, or other adaptive functioning. CONCLUSION: As primary care providers, family physicians play a vital role in promoting the health and well-being of adults with IDD. These guidelines can aid their decision making with patients and caregivers.

Soins primaires aux adultes ayant des déficiences intellectuelles et développementales: Lignes directrices consensuelles canadiennes de 2018.

OBJECTIF: Mettre à jour les Lignes directrices consensuelles canadiennes 2011 en matière de soins primaires aux adultes ayant une déficience développementale. MÉTHODES: Des médecins de famille et d'autres professionnels de la santé expérimentés dans les soins aux personnes ayant des DID ont examiné et synthétisé les récentes connaissances empiriques, d'écosystèmes, expertes et expérientielles. Un système a été conçu pour catégoriser la qualité des recommandations. RECOMMANDATIONS: Les adultes ayant des DID sont un groupe hétérogène de patients qui présentent des affections médicales et des facteurs qui influent sur leur santé, qui diffèrent de ceux qui touchent les autres membres de la communauté de par leur nature, leurs manifestations, leur gravité ou leur complexité. Ces personnes nécessitent une approche de soins et des interventions adaptées à leurs besoins. Les présentes lignes directrices offrent des conseils en matière de normes de soins. Nous avons incorporé des références à des outils cliniques et à d'autres ressources pratiques. Les approches de soins décrites ici s'appliquent aussi à d'autres groupes de patients ayant un déficit cognitif ou de la communication, ou d'autres déficits des fonctions adaptatives. CONCLUSION: À titre de fournisseurs de soins de première ligne, les médecins de famille jouent un rôle vital de promotion de la santé et de bien-être auprès des adultes ayant des DID. Ces lignes directrices peuvent les aider à prendre des décisions avec les patients et les aidants naturels.

HELP for behaviours that challenge in adults with intellectual and developmental disabilities.

OBJECTIVE: To provide primary care physicians with an understanding of the causes of behaviours that challenge (BTC) in adults with intellectual and developmental disabilities (IDD), as presented in the 2018 Canadian consensus guidelines for primary care of adults with IDD; to offer a systematic approach to the assessment and treatment of such behaviours; and to link to tools to support these assessments. SOURCES OF INFORMATION: This review elaborates upon guidelines 26 to 29 in the mental health section of the 2018 Canadian consensus guidelines. Several of the authors participated in the development of these guidelines, which were based on literature searches and interdisciplinary input. MAIN MESSAGE: Most adults with IDD are followed by primary care providers but they comprise a small proportion of primary care practices. Unique ways of communicating needs, diagnostic queries, and BTC are common in this population. This complexity can lead to missed diagnoses and inappropriate antipsychotic medication use with attendant risks. This article presents a systematic approach, HELP, to the assessment and treatment of factors of Health, Environment, Lived experience, and Psychiatric conditions that can lead to BTC and includes tools to support these assessments. CONCLUSION: A structured approach to the assessment and treatment of BTC in adults with IDD helps family physicians provide guideline-directed, individualized care to this population. This includes a systematic evaluation using the HELP framework that takes place over multiple visits. A team of health professionals might be needed for optimal care, but these resources are not routinely available across Canada.

Editorial: Nurse education: Meeting the needs of people with intellectual disabilities?

Abstract  

Primary care of adults with developmental disabilities: Canadian consensus guidelines.

OBJECTIVE: To update the 2006 Canadian guidelines for primary care of adults with developmental disabilities (DD) and to make practical recommendations based on current knowledge to address the particular health issues of adults with DD. QUALITY OF EVIDENCE: Knowledgeable health care providers participating in a colloquium and a subsequent working group discussed and agreed on revisions to the 2006 guidelines based on a comprehensive review of publications, feedback gained from users of the guidelines, and personal clinical experiences. Most of the available evidence in this area of care is from expert opinion or published consensus statements (level III). MAIN MESSAGE: Adults with DD have complex health issues, many of them differing from those of the general population. Good primary care identifies the particular health issues faced by adults with DD to improve their quality of life, to improve their access to health care, and to prevent suffering, morbidity, and premature death. These guidelines synthesize general, physical, behavioural, and mental health issues of adults with DD that primary care providers should be aware of, and they present recommendations for screening and management based on current knowledge that practitioners can apply. Because of interacting biologic, psychoaffective, and social factors that contribute to the health and well-being of adults with DD, these guidelines emphasize involving caregivers, adapting procedures when appropriate, and seeking input from a range of health professionals when available. Ethical care is also emphasized. The guidelines are formulated within an ethical framework that pays attention to issues such as informed consent and the assessment of health benefits in relation to risks of harm. CONCLUSION: Implementation of the guidelines proposed here would improve the health of adults with DD and would minimize disparities in health and health care between adults with DD and those in the general population.