Successes and Challenges in the Implementation of Care Pathways in an Intellectual Disability Service: Health Professionals' Experiences

2014 ◽  
Vol 11 (1) ◽  
pp. 1-7 ◽  
Author(s):  
Susan Wood ◽  
Satheesh Gangadharan ◽  
Freya Tyrer ◽  
Rohit Gumber ◽  
John Devapriam ◽  
...  
2010 ◽  
Vol 31 (2) ◽  
pp. 458-463 ◽  
Author(s):  
Eddie Chaplin ◽  
Dimitrios Paschos ◽  
Jean O’Hara ◽  
Jane McCarthy ◽  
Geraldine Holt ◽  
...  

2019 ◽  
Vol 32 (1) ◽  
pp. 208-223 ◽  
Author(s):  
Lisa Hurt ◽  
Kate Langley ◽  
Kate North ◽  
Alex Southern ◽  
Lauren Copeland ◽  
...  

Purpose The purpose of this paper is to describe current care pathways for children with autism including enablers and barriers, as experienced by health professionals, education professionals and families in South Wales, UK. Design/methodology/approach This study is based on a mixed-methods approach using focus group discussions, creative writing workshops and visualisation using rich pictures. Findings The experiences of the care pathways differed significantly across the three groups. Health professionals described the most rigidly structured pathways, with clear entry points and outcomes. Education professionals and parents described more complex and confusing pathways, with parents assuming the responsibility of coordinating the health and education activity in a bid to link the two independent pathways. All three groups identified enablers, although these differed across the groups. The barriers were more consistent across the groups (e.g. poor communication, missing information, lack of transparency, limited post-diagnosis services and access to services based on diagnosis rather than need). Practical implications This research could inform the design of new services which are premised on multi-agency and multi-disciplinary working to ensure children with Autism spectrum disorders (ASD) receive joined up services and support. Originality/value Although this study did not represent all professional groups or all experiences of autism, the authors examined three different perspectives of the ASD pathway. In addition, the authors triangulated high-level process maps with rich pictures and creative writing exercises, which allowed the authors to identify specific recommendations to improve integration and reduce duplication and gaps in provision.


2016 ◽  
Vol 11 (5) ◽  
pp. 424-438 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Carolyn I. Kim ◽  
Emily J. LoBraico ◽  
Ellis M. Prather ◽  
...  

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.


1994 ◽  
Vol 14 (4) ◽  
pp. 361-377 ◽  
Author(s):  
David Buchanan ◽  
Edna Apostol ◽  
Dalila Balfour ◽  
Carmen Claudio ◽  
Joani Marinoff ◽  
...  

The article describes a new model of community-based program planning developed by the Centro de Educacion, Prevencion y Accion (CEPA) project, an HIV prevention program for Puerto Ricans located in Holyoke, Massachusetts. Based on models of critical thinking, empowerment and participatory education, the basic philosophy of the CEPA project is to narrow the gap between program developers and program recipients to the greatest extent possible. The article discusses the successes and challenges encountered in approaching this ideal. The article concludes with recommendations for public health professionals considering the use of community-based approaches to address public health issues.


2020 ◽  
Vol 30 (13) ◽  
pp. 2033-2048
Author(s):  
V. Petit-Steeghs ◽  
G. I. K. Mogami-Asselin ◽  
M. D. Nijenkamp ◽  
M. Spoel ◽  
J. E. W. Broerse ◽  
...  

The aim of this study is to develop a tool that is aligned with patients’ and health professionals’ needs to address sexual health in the context of anorectal malformations and Hirschsprung’s disease. A multiphased participatory action–research was conducted. First, an inventory of needs was made through interviews (11 patients, 11 professionals), three online focus groups (4 patients, 20 professionals), and a questionnaire (38 patients). Subsequently, four cocreation sessions with in total four patients and nine professionals were organized to translate the needs into a tool (in the form of a website). The websites’ functionality was assessed via a questionnaire ( n = 34). The website, directed to patients, their parents, and professionals, stimulates awareness, fills knowledge gaps, and shows possibilities for support. The website is expected to change restrictive attitudes toward sexual health and improve the legitimization of the topic needed for the allocation of resources and sexologists’ involvement in current care pathways.


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