Introduction
People with disabilities (PwDs) represent a significant portion of the world's population
and face several daily challenges, many related to accessibility, inclusion, and discrimination
1. Disability can take many forms-physical, sensory, intellectual, and mental-affecting
the lives and social participation of these individuals 2. Historically, PwDs have been marginalized and excluded from many spheres of society,
facing physical, social, and institutional barriers that limit their full development
and participation 3,4.
Demographic data reveal the extent of the disabled population worldwide, highlighting
the importance of understanding their specific needs and combating the challenges
they face 5. According to a report by the World Health Organization, it is estimated that more
than one billion people, or approximately 15% of the global population, live with
some form of disability. This number is growing as the world's population ages and
chronic conditions become more prevalent 6.
Despite legislative advances and inclusion policies, discrimination against PwDs persists
in various areas of life, including access to health services 7,8. Discrimination can manifest in various ways, from enabling practices by health professionals
to the failure to adapt services and facilities to meet the specific needs of these
patients 9.
Access to health services is crucial to ensuring the well-being and quality of life
of PwDs, yet many face obstacles when trying to obtain adequate medical care 8. Physical barriers, such as non-adapted facilities and inaccessible transportation,
along with social barriers, such as discriminatory attitudes and a lack of cultural
sensitivity among health professionals, as well as communication barriers when interacting
with health professionals, can limit these individuals' access to quality health care
8,10.
It is worth highlighting that health care for the disabled population still needs
to be improved 11. Furthermore, there is an undeniable need for changes to improve care and communication
with people with disabilities. Reducing barriers to access for this population is
essential to reducing failures and damage to the health system 12.
Given this scenario, studies investigating the discrimination faced by PwDs in health
services are justified to identify the main barriers and challenges and to propose
strategies to promote inclusion and equal access 9. Gaining a better understanding of the experiences of these individuals in health
services is essential for developing policies and practices that promote equity and
ensure that everyone has access to health care 13.
In this context, the aim of this study is to conduct an integrative literature review
to investigate the factors associated with discrimination suffered by PwDs in health
services, analyzing the main issues, knowledge gaps, and recommendations to promote
more inclusive and accessible care.
Materials and Methods
This is an integrative literature review that seeks to contribute to improving and
updating existing scientific databases 14. To construct this integrative review, seven stages were stipulated: i) Construction
of the guiding question; ii) Definition of the inclusion and exclusion criteria; iii)
Application of the search strategy; iv) Selection of articles by title and abstract;
v) Selection of articles by full text; vi) Assessment of the quality of the articles,
and vii) Synthesis of the final sample 15.
The research question was constructed following the PICo strategy, an acronym for
"P" for population; "I" for interest; "Co" for context 16, in which population referred to PwD; interest, to social discrimination; and context,
to health services. Thus, the question was "What factors are associated with the discriminatory
experience faced by PwD when accessing and using the health system?"
The inclusion criteria were original articles available online in the last five years,
in any language, and produced in any country. Exclusion criteria were duplicate articles
and articles that did not answer the research question.
The searches were performed in February 2024 in the following databases via the VHL
(virtual health library): Indice Bibliográfico Español en Ciencias de la Salud (IBECS);
Latin American and Caribbean Health Sciences Literature (Lilacs); Nursing Database
(BDEnf), and in the international databases: Medical Literature Analysis and Retrieval
System online (Medline) via PubMed; Scopus; and Web of Science, accessed in person
in the city of Redenção in Ceará, through the Federated Academic Community, from the
Portal of Journals of the Coordination for the Improvement of Higher Education Personnel
(known as "Capes"). Regarding the search strategy, the guiding question was used to
select the health sciences descriptors (DeCS) and the Medical Subject Headings (MeSH),
combined by the Boolean operator "AND" in the advanced search of the databases. The
search strategy and its controlled and uncontrolled descriptors are presented in Table 1.
Table 1
Search strategies used in the databases. Redenção, Ceará, Brazil, 2024
|
Strategy in Portuguese
|
|
Person
|
"pessoas com deficiência" OR "deficiência física" OR "deficiências físicas" OR "deficiente
físico" OR "limitação física" OR "pessoa com deficiência física" OR "pessoa com desvantagem"
OR "pessoa com incapacidade" OR "pessoa com incapacidade física" OR "pessoa com limitação
física" OR "pessoa com necessidade especial" OR "pessoas com deficiência física" OR
"pessoas com deficiências" OR "pessoas com deficiências físicas" OR "pessoas com desvantagens"
OR "pessoas com incapacidade" OR "pessoas com incapacidade física" OR "pessoas com
incapacidades" OR "pessoas com limitação física" OR "pessoas com limitações físicas"
OR "pessoas com necessidade especial" OR "pessoas com necessidades especiais"
|
|
AND
|
|
Interest
|
"discriminação social" OR "ableísmo" OR "capacitismo" OR "discriminação"
|
|
AND
|
|
Context
|
"serviços de saúde" OR "consumo de serviços de saúde" OR "rede prestadora de serviços
de saúde" OR "serviço de saúde" OR "serviços de atenção ao paciente" OR "uso de serviços
de saúde"
|
|
Strategy in English
|
|
Person
|
"disabled persons" OR "disabled person" OR "person, disabled" OR "persons, disabled"
OR "handicapped" OR "people with disabilities" OR "disabilities, people with" OR "people
with disability" OR "persons with disabilities" OR "disabilities, persons with" OR
"disability, persons with" OR "persons with disability"
|
|
AND
|
|
Interest
|
"social discrimination" OR "discrimination, social" OR "discriminatory practices"
OR "discriminatory practice" OR "practice, discriminatory" OR "exposure to discrimination"
OR "exposure to discriminations" OR "discrimination exposure" OR "discrimination exposures"
OR "exposure, discrimination"
|
|
AND
|
|
Context
|
"health services" OR "health service" OR "services, health"
|
The articles obtained from applying the search strategy were exported to the Rayyan
software 17, where duplicate articles were identified and excluded, and then moved on to stage
4, in which the articles were preliminarily selected based on their title and abstract,
and later based on their full text. The Preferred Reporting Items for Systematic Reviews
and Meta-Analyses - Prisma 18 checklist was used in these stages. The articles were independently selected by two
authors, with a third author designated to resolve possible conflicts.
To define the quality of the studies, the classification proposed by Melnyk and Fineout-Overholt
19 of six levels was used: Level 1 - meta-analysis of multiple controlled studies; Level
2 - individual study with an experimental design; Level 3 - study with a quasi-experimental
design, such as a study without randomization with a single pre- and post-test group,
time series, or case-control; Level 4 - study with a non-experimental design, such
as descriptive correlational and qualitative research or case studies; Level 5 - case
report or data obtained systematically, of verifiable quality or program evaluation
data, and Level 6 - opinion of reputable authorities based on clinical competence
or opinion of expert committees, including interpretations of information not based
on research.
In the process of collecting and analyzing the data from the final sample, Microsoft
Excel spreadsheets were used to gather and organize the data and for the authors to
create tables. This allowed the data to be visualized easily and clearly, making it
easier to understand and interpret the results.
Results
After applying the search strategy in the advanced query of the selected databases,
the total sample was 162 articles, of which 5 were excluded because they were duplicates.
After screening the records by title and abstract, a further 45 were excluded for
not being original articles, and another 95 papers were excluded for not answering
the research question. Seventeen findings remained to be read in full, and a further
seven were excluded. In the end, 10 articles were included in the final review sample.
The selection process and other information can be better visualized in the Prisma
flowchart in Figure 1.
Figure 1
PRISMA Study Selection Process Flowchart
Source: Adapted from Prisma flowchart, 2020.
Of the 10 articles included in the final sample of this review, 100% (n = 10) were
in journals indexed in the Scopus database; 90% (n = 9) were published in English
and only 10% (n = 1) were in Portuguese. As for the country of origin, there was a
greater incidence of the United States of America, with 20% (n = 2); other countries
such as New Zealand, Ghana, Hong Kong, the United Kingdom, Iran, Brazil, Germany,
and Liberia also appear as countries of origin of the studies, all with 10% (n = 1)
each.
As for the level of evidence of the studies, 60% (n = 6) of the papers received level
IV, as they were descriptive studies; 30% (n = 3) of the articles received level V,
as they used secondary data in their research, and 10% (n = 1) received level II,
as it was an experimental study. The bibliographic results can be seen in Table 2.
Table 2
Data Relating to the Studies Included in the Sample Characterization. Redenção, Ceará,
Brazil, 2024
|
C*
|
Year/Country
|
Title
|
Journal/Database/ Language
|
Type of Study/ NE@
|
|
A1
|
2019/ United States of America
|
A cross-sectional study to investigate the effects of perceived discrimination in
the health care setting on pain and depressive symptoms in wheelchair users with spinal
cord injury 20
|
Archives of Physical Medicine and Rehabilitation/Scopus/ English
|
Secondary data study/V
|
|
A2
|
2022/New Zealand
|
Ableism, human rights, and the COVID-19 pandemic: Healthcare-related barriers experienced
by deaf people in Aotearoa New Zealand 21
|
Int. J. Environ. Res. Public Health/Scopus/ English
|
Qualitative descriptive exploratory/IV
|
|
A3
|
2022/Ghana
|
Experiencing motherhood as a blind mother in the Greater Accra Region of Ghana: A
qualitative study 22
|
BMC Pregnancy and Childbirth/Scopus/ English
|
Qualitative descriptive exploratory/IV
|
|
A4
|
2022/Hong Kong
|
Navigating stigma and discrimination: Experiences of migrant children with special
needs and their families in accessing education and healthcare in Hong Kong 23
|
Int. J. Environ. Res. Public Health/Scopus/ English
|
Qualitative descriptive exploratory/IV
|
|
A5
|
2021/United Kingdom
|
Overt acts of perceived discrimination reported by British working-age adults with
and without disability 24
|
Journal of Public Health/Scopus/English
|
Secondary data study/V
|
|
A6
|
2023/ United States of America
|
Perceived disability-based discrimination in health care for children with medical
complexity 9
|
Pediatrics/Scopus/ English
|
Qualitative descriptive exploratory/IV
|
|
A7
|
2023/Iran
|
Prevalence of subjective unmet mental healthcare needs, barriers, and socioeconomic
inequality among adult individuals with physical, visual, hearing, and speech disabilities
in West of Iran 25
|
Health & Social Care in the Community/ Scopus/English
|
Quantitative cross-sectional analysis/IV
|
|
A8
|
2023/Brazil
|
Social discrimination against adults with hearing loss in Brazilian health services:
results of the National Health Survey 26
|
Ciência & Saúde Coletiva/Scopus/ portuguese
|
Secondary data study/V
|
|
A9
|
2019/ Germany
|
Stigma experiences and perceived stigma in patients with first-episode schizophrenia
in the course of 1 year after their first in-patient treatment 27
|
European Archives of Psychiatry and Clinical Neuroscience/Scopus/ English
|
Randomized clinical trial/II
|
|
A10
|
2021/Liberia
|
The Ebola crisis and people with disabilities' access to healthcare and government
services in Liberia 28
|
International Journal for Equity in Health/ Scopus/English
|
Secondary data study/V
|
The results relating to the factors associated with the discriminatory experience
faced by PwDs when accessing and using the health system were listed in two separate
tables. The first (Table 3) highlights the contextual factors, organized into four categories of discrimination:
Stigmatization, Negligence, Prejudice, and Access difficulties.
Table 3
Contextual Factors Associated with the Discriminatory Experience Faced by PwD When
Accessing and Using the Health System. Redenção, Ceará, 2024
|
Type of Discrimination
|
Perceived Discrimination
|
Article (n - %)
|
|
Stigmatization
|
Lack of awareness of the needs and rights of people with disabilities
|
A2; A3; A4; A6 (n = 4 - 40 %)
|
|
Paternalistic attitudes of professionals
|
A3; A4; A9 (n = 3 - 30%)
|
|
Negligence
|
Lack of training and qualification of health professionals in dealing with PwDs
|
A2; A3; A4; A6 (n = 4 - 40 %)
|
|
Prejudice
|
Attitudes/aggressions based on disability
|
A2; A3; A4; A6; A10 (n = 5 - 50 %)
|
|
Disbelief in the abilities of PwDs, such as attitudes of pity or overprotection
|
A2; A3 (n = 2 - 20 %)
|
|
Difficulty of access
|
Poor service/poor accessibility
|
A6; A10 (n = 2 - 20 %)
|
|
Financial barriers/health insurance
|
A7; A3; A5 (n = 3 - 30 %)
|
Table 4 highlights the results referring to the individual factors, allowing for better visualizing
and a clearer understanding of the trends and patterns identified.
Table 4
Individual Factors Associated with the Discriminatory Experience Faced by PwD When
Accessing and Using the Health System. Redenção, Ceará, 2024
|
Individual Factors
|
Article (n - %)
|
|
Low income/disadvantaged social class
|
A1; A3; A5; A7; A9 (n = 5 - 50 %)
|
|
Low schooling
|
A1; A8 (n = 2 - 20 %)
|
|
Low autonomy/limited activities
|
A8; A9 (n = 2 - 20 %)
|
|
Older age
|
A8; A9 (n = 2 - 20 %)
|
|
Black race
|
A1; A8 (n = 2 - 20 %)
|
Discussion
The results of this review highlight the scarcity of studies on the discrimination
faced by PwDs in health services, which represents a substantial limitation for research
in this area. This lack of studies can compromise a comprehensive understanding of
the phenomenon and hinder the development of effective policies and interventions.
Furthermore, the absence of studies centered on the perspective of PwDs themselves
can result in an incomplete analysis of discrimination, potentially underestimating
or ignoring essential aspects of their experience.
The care provided to PwDs or people with reduced mobility is often ineffective, which
undermines their needs and rights. It is therefore necessary to raise awareness of
the specific needs and rights of PwDs to implement strategies for providing qualified
and effective care 29. Additionally, the effectiveness of various health promotion, prevention, and recovery
actions-intended to cover every-one-is still hindered by physical, spatial, and attitudinal
barriers, which consequently prevent PwDs from fully benefiting from health services
30.
One of the obstacles to healthcare access for this population is the persistence of
"paternalistic attitudes," which limit their autonomy. Moreover, it is common for
decision-making to be done by health professionals rather than the patients themselves,
often leading to care that does not adequately consider their preferences, values,
or independence 31.
According to the literature, a 2021 study highlighted how paternalistic attitudes
have led to a devaluation of the abilities of PwDs, reinforcing a discriminatory view
that undermines their autonomy and 5 rights 32. For this reason, patient participation in their own care is associated with positive
health outcomes, and any attitude that discourages this participation can lead to
unfavorable results 31. The lack of training and qualification of health professionals is a worrying issue
that affects the quality of care. Therefore, the adoption of inclusive practices in
health services is essential to guarantee access to quality care while respecting
each person's individual needs 33. Furthermore, health policies for this population must be clear and effective, promoting
and funding the training of healthcare providers in inclusive practices. Without adequate
training, healthcare professionals may be limited in their ability to provide equitable
care 34.
Discrimination against PwDs through attitudes or aggression remains noticeable, both
among adult patients and children. A UK study showed that adults with and without
disabilities were three times more likely to be exposed to discriminatory attitudes
24. Other literature indicates that, in pediatrics, discrimination has impacted children's
health, leading to limited access to healthcare, inadequate pain management, and non-holistic
care 9.
A survey conducted in Ghana revealed the perceptions of healthcare professionals regarding
the care of PwDs and highlighted the impact of poor accessibility in health facilities,
which poses a daily challenge in the pursuit of quality services 22. A study conducted in Brazil also revealed difficult accessibility conditions, including
issues with public transportation and healthcare facility structures that lack ramps,
tactile flooring, and other essential elements for PwDs 10.
Other authors indicate that ineffective communication is a recurring issue, particularly
for those who are hearing impaired, due to the lack of training for professionals
in sign language 22,35. The results of this review also suggest that attitudes of pity or over-protection
are common when it comes to the discrimination faced by PwDs in accessing and using
health services. These attitudes can result in the infantilization of PwDs, undermining
their ability to develop self-determination skills and independence 32.
According to a systematic review conducted in 2022, financial barriers are a common
limitation in the access to and use of health services by children with neurological
disabilities. Additionally, low-income or disadvantaged social class can be a significant
factor in discrimination 36. This result can be explained by the fact that low-income individuals face obstacles
such as being unable to afford the extra costs associated with their health condition,
as well as medication and specialized equipment 37.
Financial difficulties are often exacerbated for PwDs, who frequently face high or
additional costs for specific treatments, accessibility, and personal assistance 38. In line with this, a lack of resources can limit access to information about rights
and available services, making PwDs more vulnerable to segregation and marginalization
by health professionals or institutions that are not properly prepared to meet their
needs.
Low educational attainment can limit the development of self-advocacy skills, as it
directly affects the autonomy of PwDs, making them more vulnerable 39. The combination of the aforementioned factors with lower socioeconomic status directly
contributes to the increased fragility and marginalization of PwDs, exacerbating their
experiences of discrimination within the health system 40.
Older age among PwDs can be explained by the fact that aging is often related to increased
limitations and growing demand for care, making them more exposed in healthcare settings
41. In addition, some studies have indicated that age is a factor that leads to discrimination
in health services, as youth is often associated with productivity, leading to the
perception that older individuals are unproductive or unhelpful. Furthermore, the
chronic conditions often associated with aging can increase the complexity of care,
reinforcing age as a significant factor in discrimination 42,43.
Ethnicity is another element that can influence intolerance toward this population
44. Studies show that people belonging to ethnic minorities, such as Black individuals,
face significant inequalities in access to and quality of healthcare 45. In view of this, it is clear that PwDs face daily challenges in accessing services;
if they are also from a racial minority, these challenges tend to be exacerbated 46.
Many adversities have hindered the use of health services by PwDs 47, including issues related to the communication and attitudes of professionals, transportation,
and infrastructure 48,49. According to the International Convention on the Rights of Persons with Disabilities,
it is the responsibility of states and health services to ensure adequate access to
services for PwDs by removing architectural, communication, and environmental barriers.
The convention also emphasizes the responsibility of states to prevent discriminatory
denial of healthcare services to PwDs 50.
Therefore, states, managers, and healthcare professionals have a significant responsibility
to adopt changes that promote health and quality of life, as well as ensure equal
access for all 51.
Conclusions
The findings of this review reveal a complex intersection of contextual and individual
factors associated with the discriminatory experiences faced by PwDs in health services.
Financial barriers, lack of training for health professionals, and other gaps that
generate prejudice, stigmatization, and neglect are identified as significant drivers
of discrimination. The scarcity of studies centered on the perspectives of PwDs themselves
stands out as a crucial knowledge gap, while the lack of effective interventions underscores
the need for concrete action.
Therefore, public policies are recommended to guarantee the accessibility of services,
provide financial assistance for PwDs, implement training programs for health professionals,
and conduct more research to inform interventions that promote more inclusive and
accessible care for all.
