scholarly journals Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities—A qualitative study

Nursing Open ◽  
2020 ◽  
Vol 7 (6) ◽  
pp. 1725-1734 ◽  
Author(s):  
Marie Lourdes Charles
2012 ◽  
Vol 50 (2) ◽  
pp. 129-139 ◽  
Author(s):  
Ginny Focht-New

Abstract Adults with intellectual and developmental disabilities have medical conditions similar to those among the general population but with more complex presentation, a extended life expectancy, and increased risk of morbidity and mortality. These adults' health education has been inadequate. In this qualitative study, the author describes the experiences of 23 registered nurses who provide health teaching to adults with intellectual and developmental disabilities, selection of and health topics taught, and teaching activities put into practice. The author used a rigorous descriptive, naturalistic inquiry design with purposive (n  =  22) and snowball (n  =  1) sampling. Data were gathered through individual interviews, focus groups, and nonparticipant observations, and analyzed with a constant comparative method. Findings concerned the educators' developmental process, use of a social context to teach, and health-teaching activities. Registered nurses s described their transformation from insecure, novice health educators to confident and passionate educators of adults with intellectual and developmental disabilities. Findings apply to multiple disciplines.


2014 ◽  
Vol 52 (2) ◽  
pp. 147-159 ◽  
Author(s):  
Heather J. Williamson ◽  
Elizabeth A. Perkins

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.


2021 ◽  
Vol 75 (3) ◽  
pp. 7503180060p1
Author(s):  
Elizabeth K. Schmidt ◽  
Brittany N. Hand ◽  
Susan Havercamp ◽  
Carolyn Sommerich ◽  
Lindy Weaver ◽  
...  

2013 ◽  
Vol 51 (6) ◽  
pp. 482-495 ◽  
Author(s):  
John Kramer ◽  
Allison Hall ◽  
Tamar Heller

Abstract Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, “How do siblings support each other after parents no longer can provide care to the person with IDD?” Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.


2014 ◽  
Vol 52 (3) ◽  
pp. 220-233 ◽  
Author(s):  
Heather M. Aldersey ◽  
H. Rutherford Turnbull ◽  
Ann P. Turnbull

Abstract This article reports results of a 7-month qualitative study on intellectual and related developmental disabilities in Kinshasa, Democratic Republic of the Congo, particularly as they relate to the causes and meaning of intellectual and developmental disabilities (IDD). This study raises important questions related to the understanding of resilience of persons affected by IDD and the nature and purpose of support they use or desire.


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