Transforming Care: Advancing Health Equity for Individuals with Intellectual and Developmental Disabilities

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Health Policy".

Deadline for manuscript submissions: closed (31 January 2025) | Viewed by 3237

Special Issue Editors


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Guest Editor
Department of Nursing, Faculty of Medicine, University of Novi Sad, 21000 Novi Sad, Serbia
Interests: nursing; education; care quality; urinary incontinence; questionnaire design
Special Issues, Collections and Topics in MDPI journals

E-Mail Website
Guest Editor
Department of Special Education and Rehabilitation, Faculty of Medicine, University of Novi Sad, Novi Sad, Serbia
Interests: nursing

Special Issue Information

Dear Colleagues,

Health equity is a fundamental right, but people with intellectual and developmental disabilities (PWIDDs) often face significant systemic barriers when trying to access quality healthcare. Despite advancements in medical science and increasing awareness of disability rights, inequalities in health outcomes persist for PWIDDs. These inequalities are not just due to clinical oversights but are deeply rooted in social, economic, and policy-driven factors. PWIDDs are more likely to experience poorer health outcomes, limited access to healthcare services, and suboptimal treatment compared to the general population.

In order to explore different aspects of health inequality for PWIDDs, this Special Issue is soliciting original research articles and reviews addressing topics related to these challenges from various perspectives, including clinical practice, public health, policy analysis, and personal narratives. Original research articles and reviews that explore the structural barriers perpetuating inequalities, such as inadequate training for health care providers, insufficient funding for specialized services, and discriminatory practices within the health care system, are of particular interest. In addition, manuscripts that examine successful models and interventions that promote inclusive and equitable health care, highlighting innovative practices and policies that show promise in bridging the gap, will also be considered.

Prof. Dr. Dragana Milutinović
Prof. Dr. Špela Golubović
Guest Editors

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Keywords

  • intellectual disability
  • health equity
  • healthcare services
  • care quality
  • access
  • barriers
  • prevention
  • stigma

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Published Papers (3 papers)

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Research

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11 pages, 223 KiB  
Article
Slovenian Nursing Students’ Perspectives and Experiences with Nursing Care of People with Intellectual and Developmental Disabilities: A Qualitative Descriptive Study
by Ljubiša Pađen, Renata Vettorazzi, Mirjam Ravljen and Manca Pajnič
Healthcare 2025, 13(1), 61; https://doi.org/10.3390/healthcare13010061 - 1 Jan 2025
Viewed by 891
Abstract
Background/Objectives: Providing nursing care for individuals with intellectual and developmental disabilities can be challenging for nursing students, often perceived as stressful, demanding, and, at times, unpleasant. This study aimed to describe the experiences of students in their interactions and provision of nursing care [...] Read more.
Background/Objectives: Providing nursing care for individuals with intellectual and developmental disabilities can be challenging for nursing students, often perceived as stressful, demanding, and, at times, unpleasant. This study aimed to describe the experiences of students in their interactions and provision of nursing care for people with intellectual and developmental disabilities. Methods: A qualitative descriptive study was conducted. Fourteen self-reflections from nursing students were analysed by using qualitative content analysis. Results: The findings indicate that students experience contact and nursing care for individuals with intellectual and developmental disabilities as dynamic and varied. This process is characterised by transitions in communication and interaction, emotional transitions, and transitions in knowledge and understanding of caring and nursing care. Conclusions: Students encountered emotional, cognitive, and behavioural challenges when interacting with and providing care for individuals with intellectual and developmental disabilities. Their experience is described as multidimensional and demanding. Gaining insight into these experiences and understanding the students’ perspectives are essential for planning future theoretical and practical nursing education. Full article
12 pages, 230 KiB  
Article
Exploring Cancer Prevention Challenges for People with Intellectual Disabilities: Perspectives from Family Caregiver
by Špela Golubović, Dragana Simin, Vladimir Vuković, Semra Demirović and Dragana Milutinović
Healthcare 2024, 12(23), 2463; https://doi.org/10.3390/healthcare12232463 - 6 Dec 2024
Viewed by 1100
Abstract
Background: Cancer prevention is a crucial public health strategy, with 30–50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to cancer prevention services, leading to delayed diagnoses and poorer outcomes. Family caregivers [...] Read more.
Background: Cancer prevention is a crucial public health strategy, with 30–50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to cancer prevention services, leading to delayed diagnoses and poorer outcomes. Family caregivers play a key role in bridging the healthcare access gaps for PWID, but there is limited research exploring their perspectives on cancer prevention. This study examined the needs, challenges, and strategies family caregivers employ in cancer prevention for PWID, framed within Bronfenbrenner’s ecological systems theory. Methods: A mixed methods sequential explanatory design was used. Quantitative data were collected through a structured questionnaire from 41 caregivers of PWID, followed by qualitative semi-structured interviews with 15 caregivers to explore the quantitative findings further. Data were analysed using descriptive statistics, chi-square tests, and thematic content analysis. Results: The study revealed that 75.6% of caregivers had not received information about cancer prevention for PWID, and 63.4% did not regularly coordinate cancer screenings. Barriers identified included a lack of accessible information, logistical challenges, and emotional strain. However, 80.5% of caregivers expressed a need for additional training to support their roles in cancer prevention. Qualitative findings highlighted four key themes: promoting a healthy lifestyle, access to healthcare services, health literacy, and psychosocial support. Conclusions: The findings emphasise the need for tailored cancer prevention strategies and educational resources for caregivers of PWID. Addressing these gaps requires systemic changes in healthcare practices, better coordination of services, and enhanced support for caregivers to reduce the barriers to cancer prevention for PWID. Full article

Review

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14 pages, 838 KiB  
Review
Analysis of the European Union’s National Cancer Control Programs: Meeting the Needs of People with Intellectual Disabilities
by Oliwia Kowalczyk, Rainer Pier Paolo M. Ambrocio, Vladimir Vuković, Suzanne Denieffe and Margaret Denny
Healthcare 2025, 13(5), 456; https://doi.org/10.3390/healthcare13050456 - 20 Feb 2025
Viewed by 628
Abstract
Background/Objectives: People with intellectual disabilities (IDs), representing approximately 200 million individuals globally (3% of the world’s population), face significant disparities in cancer prevention and care. While cancer remains one of the leading causes of mortality worldwide, the intersection of cancer care and [...] Read more.
Background/Objectives: People with intellectual disabilities (IDs), representing approximately 200 million individuals globally (3% of the world’s population), face significant disparities in cancer prevention and care. While cancer remains one of the leading causes of mortality worldwide, the intersection of cancer care and intellectual disability presents unique challenges that demand specialized attention within healthcare systems. This study evaluates the current status and effectiveness of National Cancer Control Programs (NCCPs) for individuals with intellectual disabilities across the European Union. Methods: A systematic analysis was conducted of 27 European Union member states’ National Cancer Control Programs between August 2023 and August 2024. The study utilized the International Cancer Control Partnership (ICCP) framework, examining English-language documents and official translations to ensure analytical consistency. Results: Our analysis reveals that while all 27 EU member states have established NCCPs, significant variations exist in their approach to ID-specific provisions, with implementation scores ranging from 1 (basic) to 3 (comprehensive). Key findings indicate that only 15% of programs have comprehensive ID-specific provisions, while 60% maintain moderate adaptations and 25% offer basic provisions. Specific gaps identified include limited specialized healthcare provider training (present in only 7.5% of programs) and inadequate screening program adaptations. Conclusions: Based on a quantitative assessment of implementation status and program components, we propose evidence-based recommendations emphasizing the urgent need for enhanced ID-specific provisions in NCCPs. Full article
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