A scoping review of measurement of violence against women and disability

Abstract

Introduction

Existing evidence indicates that prevalence of violence against women with disability is elevated compared to women without disability. We conducted a scoping review with a focus on measurement to assess the forms of measurement and study design utilized to explore the intersection of violence against women with disabilities, and to identify strengths and limitations in current approaches to measuring violence against women with disabilities. This scoping review is designed to inform current debates and discussions regarding how to generate evidence concerning violence against women with disabilities.

Methods and results

We conducted systematic searches of the following databases: PubMed, PsycINFO, Embase, CINAHL, PILOTS, ERIC, Social Work Abstracts, International Bibliography of the Social Sciences, Social Services Abstracts, ProQuest Criminal Justice, and Dissertations & Theses Global, and conducted structured searches of national statistics and surveys and grey literature available on-line. We identified 174 manuscripts or reports for inclusion. n = 113 manuscripts or reports utilized acts-specific measurement of violence. In terms of measurement of disability, we found that amongst the included manuscripts and reports, n = 75 utilized measures of functioning limitations (n = 20 of these were Washington Group questions), n = 15 utilized a single question approach and n = 67 defined participants in the research as having a disability based on a diagnosis or self-report of a health condition or impairment.

Discussion

This scoping review provides a comprehensive overview of measurement of violence against women with disabilities and measurement of violence within disability-focused research. We identified several important gaps in the evidence, including lack of sex and disability disaggregation, limited evidence concerning adaptation of data collection methods to ensure accessibility of research activities for women with disabilities, and limited evidence concerning differential relationships between types of disability and violence exposure. This scoping review provides directions for sub-analyses of the included studies and further research to address gaps in evidence.

About the Authors:

Sarah R. Meyer

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Writing – original draft

Affiliation: Department of Sexual and Reproductive Health and Research, World Health Organization, Geneva, Switzerland

ORCID logo https://orcid.org/0000-0001-8595-2358

Heidi Stöckl

Roles Data curation, Formal analysis, Writing – review & editing

Affiliation: The Institute for Medical Information Processing, Biometry, and Epidemiology, University of Munich, Munich, Germany

ORCID logo https://orcid.org/0000-0002-0907-8483

Cecilia Vorfeld

Roles Data curation, Writing – review & editing

Affiliation: Department of Noncommunicable Diseases, World Health Organization, Geneva, Switzerland

Kaloyan Kamenov

Roles Data curation, Formal analysis, Writing – review & editing

Affiliation: Department of Noncommunicable Diseases, World Health Organization, Geneva, Switzerland

Claudia García-Moreno

Roles Conceptualization, Funding acquisition, Methodology, Supervision, Writing – review & editing

* E-mail: [email protected]

Affiliation: Department of Sexual and Reproductive Health and Research, World Health Organization, Geneva, Switzerland

Abstract

Introduction

Existing evidence indicates that prevalence of violence against women with disability is elevated compared to women without disability. We conducted a scoping review with a focus on measurement to assess the forms of measurement and study design utilized to explore the intersection of violence against women with disabilities, and to identify strengths and limitations in current approaches to measuring violence against women with disabilities. This scoping review is designed to inform current debates and discussions regarding how to generate evidence concerning violence against women with disabilities.

Methods and results

We conducted systematic searches of the following databases: PubMed, PsycINFO, Embase, CINAHL, PILOTS, ERIC, Social Work Abstracts, International Bibliography of the Social Sciences, Social Services Abstracts, ProQuest Criminal Justice, and Dissertations & Theses Global, and conducted structured searches of national statistics and surveys and grey literature available on-line. We identified 174 manuscripts or reports for inclusion. n = 113 manuscripts or reports utilized acts-specific measurement of violence. In terms of measurement of disability, we found that amongst the included manuscripts and reports, n = 75 utilized measures of functioning limitations (n = 20 of these were Washington Group questions), n = 15 utilized a single question approach and n = 67 defined participants in the research as having a disability based on a diagnosis or self-report of a health condition or impairment.

Discussion

This scoping review provides a comprehensive overview of measurement of violence against women with disabilities and measurement of violence within disability-focused research. We identified several important gaps in the evidence, including lack of sex and disability disaggregation, limited evidence concerning adaptation of data collection methods to ensure accessibility of research activities for women with disabilities, and limited evidence concerning differential relationships between types of disability and violence exposure. This scoping review provides directions for sub-analyses of the included studies and further research to address gaps in evidence.

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Citation: Meyer SR, Stöckl H, Vorfeld C, Kamenov K, García-Moreno C (2022) A scoping review of measurement of violence against women and disability. PLoS ONE 17(1): e0263020. https://doi.org/10.1371/journal.pone.0263020

Editor: Stefano Federici, University of Perugia: Universita degli Studi di Perugia, ITALY

Received: August 15, 2021; Accepted: January 10, 2022; Published: January 31, 2022

Copyright: © 2022 Meyer et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the manuscript and its Supporting Information files.

Funding: This work was funded under the UNWomen-WHO Joint Programme on Violence against Women Data, funded by the Foreign, Commonwealth and Development Office. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist

Background and introduction

Violence against women is a global public health challenge and violation of human rights. Recent estimates indicate that one in three women aged 15 and older globally have experienced intimate partner violence [IPV] or non-partner sexual violence in their lifetime [1]. Disability has been found to be a risk factor for exposure to violence amongst women and has been found to influence dynamics and patterns of women’s exposure to violence [2]. For example, analyses of the association between IPV and disability from seven violence-prevention programs in low and middle-income countries [LMIC] indicates consistent associations between past-year exposure to IPV and disability, with associations stronger with increasing severity of self-reported disability [3]. Literature reviews, systematic reviews and comparative data analyses focusing on violence and disability have indicated that adults with disability are at greater risk for exposure to violence [4–6]. Yet, significant limitations remain in current understanding of the relationship between disability and violence against women, including that some analyses do not adequately account for gender and its shaping of vulnerability to violence.

Risk factors for violence against women with disabilities may be the same as risk factors for women without disabilities [7], yet there also may be specific pathways through which women’s vulnerability to violence is heightened due to disability. Proposed factors explaining heightened vulnerability to violence include social exclusion and isolation, reliance of women with disabilities on partners and/ or carers, and the intersection of disability and lack of economic independence, which can compound issues of reliance on abusers [8–10]. Societal views of disability, and social and economic exclusion of persons with disability, can compound severity and duration of violence and restrict women’s ability to report or leave abusive situations [11].

A number of conceptual approaches have been proposed to account for the increased vulnerability of women with disabilities to violence. Namatovu et al. suggest two theoretical approaches for understanding violence against women with disabilities. The first, intersectionality, positions both violence and disability as “interdependent and interconnected,” and enables understanding of vulnerability to violence through the lens of how the social identities of gender and ability are socially constructed and reinforced. The second, feminist disability theory, proposes that disability is a social construct, and shapes women’s experiences and access to full social participation in ways that intersect with patriarchal norms and practices [2]. These approaches theorize the types and patterns of violence against women with disabilities as grounded within the social construct of disability, which results in marginalization and isolation of persons with disability, and patriarchal systems, which uphold power of men over women in family and other central social institutions [12]. This perspective emphasizes that while a specific research methodology may focus on measuring violence and assessing disability at the individual-level, both disability and violence are embedded in social institutions, practices and norms that drive use of violence against women with disabilities. Curry et al. (2001) proposed an ecological model for understanding violence against women with disabilities, identifying environmental and cultural factors that impact prevalence, type and severity of violence against women with disabilities including the intersection of patriarchy and ableist perspectives resulting in marginalization of women with disabilities, discrimination in health systems, and exclusion from economic opportunities [13]. These conceptual frameworks provide insights into the complex intersections and pathways between disability and violence, yet are limited by their focus on disability in Western and high-income contexts and lack grounding in data based on different forms of disability and a range of contexts and types of violence.

Commentaries and analyses have consistently indicated challenges in estimating prevalence of violence against women with disabilities given lack of comparable data on both disability and violence against women [3]. As outlined in the protocol for this scoping review, multiple measurement issues exist concerning violence against women with disabilities [14]. Challenges specific to measurement of violence include that women with disabilities may experience forms of violence that are not captured in traditional measures, for example, denial of care, physical neglect, and lack of control over medications. Lack of inclusion of these types of violence within standard violence measurement instruments may result in under-estimating violence against women with disabilities. In addition, some evidence indicates that different types of perpetrators may be responsible for violence against women with disabilities [5, 15, 16]. Where specific contexts (i.e. care, institutions) or perpetrators (i.e. carers, assistants) are not included in measurement of violence, violence perpetrated in these contexts and by these perpetrators may be missed [11]. Over-arching principles in measurement of violence against women also apply. Gold standard measurement of violence against women includes asking a series of behavior-specific questions to capture violence, rather than a single question such as “have you ever experienced violence?” Behavior-specific acts questions yield higher levels of disclosure and are less prone to bias based on what different women define as abuse or violence [17].

Beyond challenges with violence measurement, there is considerable debate concerning measurement of disability. Disability is defined as “the interaction between individuals with a health condition…with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support,” [18]; the Convention on the Rights of Persons with Disabilities also emphasizes social participation, such that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” [19]. Studies of disability globally employ vastly different outcome measures, definitions of disability or cut-offs to determine disability status across studies, impacting prevalence estimates and comparability of data sources [20]. Some studies apply a single item to identify those with disability, whereas other studies determine disability by asking a set of functional ability questions or use a medical diagnosis as a definition of disability [21]. These distinct approaches lead to major differences in the prevalence estimates of disability impeding comparability. Questions such as “do you have a disability”–likely identify fewer persons with disabilities. For example, in a study in South Africa, there was wide variation in response depending on if a question asked about disability or about difficulty doing things; many respondents indicated difficulty completing a range of daily activities and yet did not define themselves as ‘disabled’ [22]. Prevalence estimates based on medical diagnosis can also lead to under-reporting as those without access to health services may not have been diagnosed by a professional, and also people with the same health conditions can have different levels of functioning limitations. The Washington Group Questions, which have been widely used in censuses and studies, have also been found to not reliably identify individuals who screen positive clinically for moderate or greater impairment [23]. The use of the Washington Group Questions for screening for disability has been found to define individuals with mild to moderate clinical impairments as non-disabled [24]. A rapid disability assessment in the Philippines found a higher prevalence of disability using a functioning measure assessing eight domains than a census which had utilized the Washington Group questions [25]. Selection of a particular definition and approach to measurement of disability has a significant impact on conclusions regarding the relationship between disability and violence against women. As such, exploration of how disability is defined and operationalized within this body is literature is essential to furthering evidence in this field.

There is increasing interest in how to develop and implement effective policy and programmatic response for women with disabilities affected by violence [26], yet the current availability of reliable and valid data on disability and violence against women does not adequately match this interest. There is a need for a strengthened evidence-base to inform violence prevention and policy response for women with disabilities subjected to violence and to ensure effective design and implementation of policies, services and programs [27, 28]. Spurred by policy, donor and programmatic interest in addressing violence against women with disabilities, incorporating a measure of disability within a national violence against women survey is increasingly promoted. This may be one effective avenue to increasing availability and improving quality of data on the intersection of violence against women and disability, however integrating violence against women questions in disability surveys may be even more fruitful. This scoping review identifies a starting point for building a stronger evidence-base, namely, improving understanding of appropriate, feasible and valid measures and methodologies to shed light on the intersection between disability and violence against women. As such, the aims of this scoping review are to map definitions, measures and methodologies in quantitative literature on violence against women with disabilities. This scoping review is designed to inform current debates and discussions regarding how to generate evidence concerning violence against women with disabilities.

We cover three bodies of literature: i) measurement of violence within the context of disability-focused research, ii) measurement in research focused on the intersection of disability and violence, and iii) measurement of disability in the context of research focused on violence against women. We focus on studies utilizing quantitative methodologies, given our scoping review emerges from data requirements for the Sustainable Development Goals [SDGs] and seeks to strengthen quantitative population-based surveys of violence against women. We aimed towards a comprehensive snapshot of the existing literature, and in this manuscript present a descriptive analysis of the results, which includes disparate bodies of literature. Future sub-analyses will provide more in-depth exploration of specific topics within the literature, for example, comparison of types of perpetrator and locations of violence experiences.

Methods

Based on our understanding of the state of knowledge on measurement of disability and violence against women, and the needs of researchers, program and policy makers, and advocates, we selected a scoping review as the most appropriate methodological approach for our broad, exploratory research question [29]. We followed Arksey and O’Malley’s framework for design of a scoping review [30]. Further details on definitions employed in this scoping review are available in the published protocol, where there is also further discussion of the rationale for selecting a scoping review [14]. Our reporting of methods and findings follows the PRISMA Checklist [S1 Appendix] and scoping review specific reporting guidelines [31, 32].

For the purpose of our review, we define disability-focused research as quantitative research seeking to estimate the prevalence of disability or identify associations between disability and other health outcomes. We define research focused on the intersection of disability and violence as research that focuses on associations between disability and violence, without being solely focused on either disability or violence as an outcome. We define measurement of disability in VAW research as research that focuses on questions of prevalence of violence that measure disability as a specific risk factor or variable within study objectives focusing on understanding VAW in a population or specific group.

Search strategy

Peer-reviewed literature.

The following electronic databases were included in the systematic search of the peer-reviewed literature: PubMed, PsycINFO, Embase, CINAHL, Web of Science, PILOTS, Sociological Abstracts, ERIC, AgeLine, Social Work Abstracts, International Bibliography of the Social Sciences, Social Services Abstracts, ProQuest Criminal Justice, ASSIA, Dissertations & Theses Full Text, and Dissertations & Theses Global. We developed a search strategy for these databases based on the following domains of the research question: disability; women; violence; and quantitative research. For each of these domains, we identified the relevant keywords and search terms, which varied by database [see Table 1, PubMed Search Strategy]. The search strategy was appropriately modified for each database, including syntax and specific terms, topics and/ or headings. The search was not limited by year of publication or type of publication. The reference lists of all systematic, scoping or other literature reviews identified in the search of electronic databases were hand searched, and any potentially relevant titles added to the review and subjected to the same screening and inclusion/ exclusion criteria as articles identified in database searches.

[Figure omitted. See PDF.]

Table 1. PubMed search strategy.

https://doi.org/10.1371/journal.pone.0263020.t001

Grey literature, including national disability or violence studies.

The grey literature search was implemented by one author (SRM), who conducted structured google searches: “Country X disability survey,” “Country X disability study” and “Country X disability statistics,” for each country, reviewing 10 pages of results per search. We also searched the websites of National Statistics Offices for all countries to identify any national or sub-national disability research, as well as identifying national violence against women studies and Demographic and Health Surveys that have included both disability and violence against women modules, through consultation with experts. We contacted three experts in the field of research on violence and/ or disability measurement and requested that they provide any relevant literature to be considered for inclusion in the review.

Inclusion and exclusion criteria

Studies were eligible for inclusion in the scoping review if the study:

1. Utilized a quantitative methodology; mixed methods studies were included if the quantitative data were reported separately; and

2. Compared women with disability to women without disability (studies including men and women with disability were included if sex-specific analyses were included) OR included only women with disability; and

3. Assessed exposure to any form of violence; and

4. Examined violence experienced as an adult, aged 15 and older (studies including violence experienced before the age of 15 were included if violence experienced above 15 was also measured).

Studies were excluded if the study:

1. Focused only on common mental health disorders (depression, anxiety, post-traumatic stress disorder [PTSD]); or

2. Focused only on violence experienced before the age of 15; or

3. Only utilized data from case studies or client files; or

4. Was only based on caregiver report and/ or forensic exam; or

5. Focused only validity/ reliability of the measure or scale development.

These exclusion criteria were developed to ensure that the identified literature addresses the specific study aims. Common mental disorders were excluded as there is a robust evidence-base on VAW and common mental disorders. This evidence-base includes several systematic reviews and meta-analyses [33–35], and therefore we focused this review on an area with less well-developed measurement and methodology.

One of the exclusion criteria listed in our protocol was that studies should be excluded if they “only compared women with disability to men with disability” [14]. As we conducted initial title and abstract review and full text review, we identified several studies that would have been excluded based on these criteria that appeared to have important implications for our research question. As such, based on discussion with the research team, we adjusted this and removed this from the exclusion criteria. We included studies published in English, French and Spanish.

Study selection

We utilized EndNote V.X7 as our bibliographic software management platform. We removed duplicates using EndNote, prior to exporting titles and abstracts to an Excel spreadsheet for review. For all peer-reviewed literature, two authors [SRM and HS] independently reviewed titles and abstracts, to determine which should be included for full text review. Where there was a discrepancy, the study was included for full text review. SRM and HS reviewed all studies selected for full text review against the inclusion and exclusion criteria. Any discrepancies were resolved through discussion and reasons for excluding articles were recorded. One author [SRM] reviewed the grey literature for possible inclusion; given the volume of grey literature identified, double screening of all grey literature considered for inclusion was not feasible. A flow diagram presenting the process of identification of all included studies is represented in Fig 1, Identification of Included Studies.

[Figure omitted. See PDF.]

Fig 1. Identification of included studies.

https://doi.org/10.1371/journal.pone.0263020.g001

Data extraction

A data extraction template was developed specifically for the purposes of the review, and included the following three over-arching categories: study characteristics (such as study setting and data collection method); measurement of violence (including types of violence measured, scale utilized and specific items); and measurement of disability (including type(s) of disability(ies), scale utilized and specific items). The full list of data extraction variables is included in S2 Appendix.

The data extracted for these three over-arching categories directly responded to our research questions and formed the basis of our analysis. We also extracted data on the findings of each study, data analysis methods and reported study limitations, which are not reported in this review. These data may be used to inform future research questions for subsequent reviews, based on the findings of this scoping review.

While the original protocol specified that one author [SRM] would conduct all data extraction, the volume of studies identified as meeting inclusion criteria necessitated adding a second data extractor [CV] and data for the Spanish-language studies was extracted by AO [see Acknowledgments]. The accuracy of all data extraction was reviewed by SRM.

We did not conduct quality assessment, given that the objective of the scoping review was to map the current measurement approaches, and not to ascertain bias of findings or quality of existing studies overall [36].

Data analysis

We present the findings narratively under the following sub-headings: study characteristics, violence measurement and disability measurement. The aim of our scoping review is primarily to describe measurement approaches to disability and violence against women, however, description and discussion of study characteristics, in particular research questions, is relevant in understanding the approaches to and framing of definitions and measurement of violence against women. We sought to identify typologies of research questions within the included studies, and provide illustrative examples. Within our description and analysis of measurement approaches to violence, we present the types of violence measured, types of measurement, including names of scales and items (where described and included), and assessed quality of measurement by indicating whether acts-specific items were included for all, some or none of the types of violence measured. We describe whether disability-specific forms of violence are measured and how. For measurement approaches to disability, we categorise the types of disability assessed into four categories, which mirror the categories of disability included in the Convention on the Rights of Persons with Disability–physical, mental, intellectual or sensory impairments [37]. We categorise the measurement of disability into three approaches: assessments measuring functioning limitations; single items (binary yes/ no self-report of disability) and assessment based on a health condition or impairment.

Patient and public involvement

Patients were not involved in the development of this scoping review. Members of the public were not consulted specifically for the development of the research questions, however, previous research and consultations with experts has indicated that this is a relevant and important area of enquiry in the field of violence against women research.

Results

Literature search

The search of 16 electronic databases yielded 9697 articles and review of reference lists of existing systematic or other literature reviews or input from experts yielded an additional 202 articles. After duplicates were removed, 8764 titles and abstracts were included for initial screening, and 419 selected for full-text review. Following full-text review, an additional 269 were excluded, for a total of 150 peer-reviewed manuscripts

The grey literature search was conducted separately, and identified 316 reports, of which 5 were selected for inclusion. In addition, 16 Demographic and Health Surveys and 3 reports of national violence against women studies met the inclusion criteria. With the 150 peer-reviewed manuscripts, a final 174 reports or manuscripts met the inclusion criteria.

Study characteristics

The study characteristics, including country and region of focus, research question, study sample, data collection methods and type of comparison(s) included, are shown in Table 2, Characteristics of Included Studies. Among the 174 reports or manuscripts included, n = 97 were conducted in the WHO Americas region [AMRO], n = 42 were conducted in the WHO European region [EURO], n = 5 in the WHO Eastern Mediterranean region [EMRO], n = 15 in WHO Western Pacific region [WPRO], n = 8 in WHO South East Asia region [SEARO] and n = 17 in WHO Africa region [AFRO] (numbers add up to more than 174 as some studies were conducted in multiple countries/ regions). A total of 52 of the studies were conducted in low or middle-income country contexts. The vast majority of studies were cross-sectional surveys. A small number of studies (n = 8) reported results from a wave or multiple waves of a longitudinal survey [38–45] and some studies employed a case-control study design [46–59].

[Figure omitted. See PDF.]

Table 2. Characteristics of included studies.

https://doi.org/10.1371/journal.pone.0263020.t002

Typologies of studies

We identified over-arching typologies of studies, based on research question and/ or sampling approach. The first typology were studies where all respondents identified or self-identified as having a disability. These studies looked at prevalence of, risk factors for or impacts of violence exposure amongst persons with disability. Within this typology, we identified n = 42 studies which included only women with disabilities. Amongst these studies, research questions included a focus on prevalence, socio-demographic correlates and risk factors (for example, [43, 60–72]), as well as some focus on other themes, for example, barriers to help-seeking [73] and perceived social support [74]. A small number of these studies included comparison of violence experiences by type of disability (for example, Walker (1997) [54] and Friedman et al. (2011) [44].

Within this first typology, there were n = 22 studies which included only men and women with disabilities. Four of these studies explicitly included within the research objectives the aim of exploring the gender dimensions of the association between disability and violence victimization [75–78]. In other studies, while comparison of male and female experiences is not part of the research question, the differences in exposure to violence between male and female respondents is highlighted within the analyses [79]. Other studies compared types of violence or levels of exposure experienced by men and women with disabilities [80–83], with gender as one aspect of the comparisons or variables explored. In other studies included within this category, the research questions did not explicitly focus on gender and there was limited sex-disaggregated reporting of violence exposure [84–86].

The second typology were studies that included respondents with and without disabilities, and included a number of different research foci that primarily sought to examine the association between disability and violence, with n = 36 studies which included men and women with and without disabilities, and n = 75 studies which included only women, with and without disabilities. This final category includes DHS surveys which, while including men in the larger sample, only include women in the violence modules.

Amongst the studies that included men and women, with and without disabilities, research objectives focused on the extent to which disability operated as a risk factor for violence victimization, through focusing on a comparison of the risk of violence between persons with and without disability. Many of these studies explicitly included gender analysis within their research objectives, comparing men with disabilities and women with disabilities, and exploring the role of gender in prevalence, types or perpetrators of violence [39, 40, 87–95].

Studies that included only women, with and without disabilities, similarly focused on comparisons of violence exposure between women with and without disabilities [38, 96–110]. Some studies focused in specific sub-groups of women; for example, Coston et al. (2019) compared experiences of heterosexual women with and without disabilities and bisexual women with and without disabilities [111], while Slayter et al. (2017) focused on women aged 18–21 to explore prevalence and risk factors for past year IPV [112]. Other specific foci of studies included the question of satisfaction with health service providers [113], health care access [114], employment status and its association with disability and violence [115], comparisons of mental and physical health outcomes related to IPV [116] and birth outcomes of children of women affected by violence [117]. Only one study included comparison of different types of disability and violence exposure [118]. Three recent national violence against women surveys–conducted in Viet Nam, Bhutan and Mongolia–explored associations between disability and violence exposure amongst women alongside other primary research objectives of identifying prevalence of violence and health impacts [119–121].

A sub-set of this typology was case-control studies, where a sample of respondents with disabilities was matched and compared with a sample of respondents without disabilities or with different disabilities, to identify patterns in prevalence, patterns or outcomes of violence exposure [46–58]. These studies explicitly focused on questions of comparison of violence exposure between women, or men and women, with and without disabilities. Some case-control studies focused on specific disabilities, for example fibromyalgia [48], spinal cord injury [59], chronic pelvic pain [51] and deafness [50].

Measurement of violence

Table 3 displays measurement of violence within the 174 included manuscripts and reports. Of the included manuscripts and reports, n = 134 measured multiple types of violence, whereas n = 18 focused only on sexual violence [41, 45, 53, 56, 58, 59, 66, 85, 86, 88, 93, 100, 108, 109, 118, 122–124], n = 13 focused only physical violence [76, 77, 84, 103, 112, 116, 125–132] and one study focused only on economic abuse [133]. Physical violence was assessed in n = 146 manuscripts or reports, sexual violence was assessed in n = 144, psychological violence (including items defined by authors as emotional abuse or controlling behaviors, verbal abuse and threats) was assessed n = 87 and economic violence was assessed in n = 17 manuscripts or reports. Description or definition of the forms of violence assessed was not specified at all in n = 7 manuscripts or reports [70, 83, 134–138].

[Figure omitted. See PDF.]

Table 3. Measurement of violence.

https://doi.org/10.1371/journal.pone.0263020.t003

Disability-specific types of violence were measured in n = 11 manuscripts or reports. Being prevented from using an assistive device and refusal by an abuser to provide for basic needs required by a woman with disabilities were commonly operationalized forms of violence. Examples of these items are “As an adult, has anyone you know ignored or refused to help you with an important personal need such as using the bathroom, banking, dressing, eating, communicating, or going out in the community?” [75] and, “In the last year, has anyone you know broken or kept you from using important things such as a Phone; Wheelchair; Cane; Walker; Respirator; Communication device; Service animal; and other assistive devices” [139]. A full list of disability-specific violence items is included in Fig 2, Disability-specific items n = 61 manuscripts or reports focused only on intimate partner violence, whereas the other reports and manuscripts either specified that the context of violence included IPV and other contexts (for example, violence perpetrated by an acquaintance) or did not specify the context of violence. n = 9 studies explicitly included perpetrators specific to women with disabilities, for example, personal carers or staff at institutions [60, 77, 118, 139–144].

[Figure omitted. See PDF.]

Fig 2. Disability-specific items.

https://doi.org/10.1371/journal.pone.0263020.g002

The level of detail of description of the violence measurement instrument utilized and reported in manuscripts varied widely. n = 82 reports or manuscripts named the scale utilized to measure violence and included some or all items used to measure violence; n = 20 included the name of the scale but did not include any items; n = 71 did not name the scale but did include some or all items, and n = 18 included no description of violence measurement, either the name of the scale or examples of items [44, 55, 70, 73, 85, 92, 113, 118, 122, 125, 136, 137, 145–150].

Violence was assessed using a range of measurement instruments. n = 27 used the Conflicts Tactics Scale in its original or revised version, n = 13 included the WHO Domestic Violence questionnaire or a sub-set of questions from the questionnaire and n = 19 utilized the DHS Domestic Violence module. The majority of reports or manuscripts used acts-specific measures for all forms of violence (n = 113). n = 7 studies utilized an acts-specific measure for some forms of violence but only a single item for other forms of violence [60, 87, 110, 114, 115, 151–153]. Several of these studies used acts-based measures to assess physical violence and a single item to assess sexual violence; for example, Barrett et al. asked “Has an intimate partner ever hit, slapped, pushed, kicked, or physically hurt you in any way?” to assess physical violence, and measured sexual violence with a single item: “Have you ever experienced any unwanted sex by a current or former intimate partner?” [114]. n = 3 studies utilized a single item as a screening question (for example, Rasoulian et al. asked “Have you ever been intentionally hurt physically by your husband in your lifetime?”) and then followed up with more detailed questions about the violence, for example, timing, location, frequency and perpetrator [86, 126, 135]. n = 13 included only a single item for any form of violence measures [50, 51, 58, 59, 76, 83, 87, 95, 100, 116, 127, 131, 132, 138]. Given missing detail in some manuscripts and reports, it is possible that more studies utilized acts-based questions and gold standard measures. n = 27 studies did not include any information regarding the time frame of violence, i.e. whether respondents were asked about violence experienced over the past year or since a certain age or both.

Measurement of disability

Table 4 displays measurement of disability within the 174 included manuscripts and reports, indicating types of disability assessed, type of assessment, including name of scale and items if included, if severity of disability was measured and if so, how, and if a time frame of disability was indicated in the study. We categorized types of manuscripts and reports into physical, intellectual, mental and sensory. Of the included manuscripts and reports, n = 87 examined one of these types of disability, i.e. only sensory or only physical, and n = 84 included more than one of these types of disability. n = 104 included physical disability, n = 94 included mental disability, n = 61 included intellectual disability and n = 62 included sensory disability. n = 2 did not specify the type of disability assessed in the study.

[Figure omitted. See PDF.]

Table 4. Measurement of disability.

https://doi.org/10.1371/journal.pone.0263020.t004

In terms of measurement instruments, we found that amongst the included manuscripts and reports, n = 75 were measures of functioning (n = 20 of these were Washington Group questions), n = 15 utilized a single question approach and n = 67 defined participants in the research as having a disability based on a diagnosis or self-report of a health condition. n = 20 did not indicate or include the type of measures utilized to define participants as having a disability.

Discussion

This scoping review represents a comprehensive overview of measurement of disability and violence against women, including a wide range of studies, drawing on different types of literature (national surveys, grey literature, peer-reviewed literature) and employing inclusion and exclusion criteria that sought to identify a broad body of literature to inform discussions and considerations concerning measurement of violence against women and disability. We included n = 174 manuscripts or reports in this scoping review, and presented a typology of the types of studies and/ or research questions, and analysis of measurement of both disability and violence against women. One of the objectives of this scoping review was to map the field of measurement of violence against women and disability in different bodies of literature. This broad mapping enabled us to identify research gaps and this scoping review will be utilized both as the basis for sub-analyses of the included studies, and to develop research objectives for subsequent systematic reviews.

We identified two over-arching typologies of studies: studies that included only persons with disabilities (n = 42 included only women; n = 22 included women and men) and studies that included persons with disabilities and persons without disabilities (n = 75 included only women; n = 36 included women and men). These different approaches enabled different types of research questions and comparisons. For example, studies that only included women with disabilities focused on questions of prevalence of violence, types of violence experienced, and other risk factors for violence, while studies including women with and without disabilities often assessed differences in prevalence between women with and without disabilities. While the body of literature included covered a wide range of settings, research questions, and types of violence and disability, there were some notable gaps. Very few studies compared how women with different types of disabilities experience violence differently; studies often either focused on one type of disability or assessed a number of different types of disability as one group for the purposes of analysis. This represents a significant gap, as forms and perpetrators of violence and risk and protective factors for violence may vary based on different types of disability [11].

Studies that did include analysis of different types of disability identified important relationships with implications for policy and programmatic response. For example, a study of IPV, disability and depression amongst post-partum women in South Africa identified different relationships between different types of functional limitations and IPV, with mobility limitations being the only specific type of functioning limitation associated with increased IPV [154]. Nannini’s study provided in-depth analysis of perpetrator and context of, and response to violence, for women with physical, visual, hearing, mental and cognitive disabilities, identifying different patterns in seeking services amongst women with cognitive disabilities [118]. Olofsson identified women with auditory or visual disability as at higher risk of violence-exposure compared to non-disabled women [95]. Measurement of and policy and programmatic response to address violence against women with disabilities needs not only to recognize that women with disabilities are at increased risk for violence victimization, but also respond to how specific disabilities relate to violence experiences and barriers to accessing services and reporting violence.

In addition, we identified very few studies that explored violence risk for women with disabilities alongside other vulnerabilities, for example, migration status or age. One study that focused on women from Puerto Rico in the USA did not include a comparison group [44], while a study of black Caribbean women in the USA examined the influence of generational status on physical and mental health outcomes associated with severe IPV [116]. Intersectionality is an important perspective on violence against women, positing that women are differently situated and therefore experience inequalities–including exposure to violence–differently. Gender, class, disability, ethnic status and age can all intersect and influence women’s experiences of violence [7], and the current evidence-base does not adequately shed light on these intersections.

We found that more than a third of included manuscripts or reports focused only on IPV, and within these studies, research that compared women with and without disabilities consistently found elevated risk for IPV amongst women with disabilities. However, this finding does not indicate that women with disabilities face the greatest risk for or severity of violence within intimate partner relationships; rather, that the focus of study design, research questions and measurement instruments has been IPV. Women with disabilities likely face significant violence risks from family members apart from intimate partners and caregivers (paid and/ or family members), and within institutions. One included study indicated that women with disabilities faced increased risk of violence perpetrated by caregivers and decreased risk of violence perpetrated by intimate partners compared to women without disabilities [118]. In a study that included a measure of violence specific to women with disabilities, that form of violence was equally likely to be perpetrated by an intimate partner, a care provider, or a health professional [141]. The question of whether violence perpetrated by an intimate partner is the most prevalent or pervasive form of violence for women with disabilities needs further exploration.

The results of our scoping review did not shed light on duration and severity of violence experienced by women with disabilities. Researchers have hypothesized that women with disabilities may be more likely to experience violence for longer given barriers to leaving an intimate partner relationship or reliance on an abusive care-giver [13]. Within our included reports and manuscripts, data are not available to support this hypothesis and this is an important gap in the evidence-base. While we found a large set of studies that addressed the intersection of disability and violence against women, there are numerous evidence gaps remaining that need to be addressed through high-quality qualitative and quantitative primary research and analyses of existing data.

We found that violence was assessed using a range of measurement instruments. Three widely used instruments–the Conflict Tactics Scale, the WHO Multi-Country Study Instrument, and the DHS Domestic Violence Module–were utilized in a total of n = 61 included manuscripts or reports. Overall, n = 114 reports or manuscripts used acts-based questions to assess all forms of violence measured, which is the gold-standard approach for research on violence against women. Some studies utilized a single item to assess sexual violence and acts-based questions to assess physical violence. Given how stigmatized sexual violence is, and low disclosure rates, this is likely to result in significant underestimation of sexual violence [1]. The design and focus of the studies that only included single item measures of violence varied (n = 13 used a single item for any measure of violence) and we cannot conclude that higher quality violence measurement was included in specific types of research approaches. The snapshot of violence measurement that includes or is included in disability research that this scoping review provides is mixed. While a majority of studies included acts-based measures, this proportion was not as high as might be expected given the overall advances in quality measurement in the field of research on violence against women.

It is evident that dimensions of the different violence experiences of women with disabilities may be overlooked in dominant research approaches to violence against women [10]. Women with disabilities may be excluded from research for reasons pertaining to methodology–for example, household surveys exclude women with disabilities who may be living in institutions or group housing [155] or data collection methods, e.g., telephone surveys may exclude women with hearing disabilities [156]; reasons pertaining to research ethics–for example, that women with cognitive disabilities may be unable to give informed consent [155]; and stereotypes and misconceptions about women with disabilities, including perceptions of asexuality, influencing the types of research projects planned, funded and implemented [13]. We found few studies that took specific measures to ensure inclusion of women with disabilities by developing or adapting specific data collection methods. Two manuscripts identified in our review that did not meet inclusion criteria reported on development and utilization of a survey of violence against women with disabilities using audio computer-assisted self-interviews [ACASI] specifically designed, based on extensive community consultations, to be accessible for women with disabilities [157, 158]. One included study utilized a computerized sign language survey to ensure accessibility for women with hearing disabilities [159]. In addition, few included studies took measures to adapt ethics procedures, such as delivery or design of informed consent processes, to ensure that women with disabilities for whom these procedures could form a barrier to participation in research (analysis not shown). Overall, data collection and ethics procedures need to be developed, piloted and implemented, with significant input from women with various types of disabilities, to ensure inclusion of women with disabilities in research on violence against women.

The prevalence of violence against women with disabilities may be underestimated in the studies we explored as violence specific to women with disabilities was only assessed in a small number (n = 11) of manuscripts or reports that we reviewed. One study indicated that 20% of violence prevalence would have been excluded had their violence instrument not included disability-specific violence items [160]; beyond this finding, there is limited evidence indicating the extent to which violence against women with disabilities is underestimated due to lack of disability-specific violence items in the majority of violence against women research.

Our results on disability measurement in this body of literature indicate a very broad range of measurement instruments utilized. Despite the variety of available instruments, however, there is still no gold standard instrument that is easy to administer and can comprehensively capture the experience of disability. Different measurement approaches found in this review were measures of functioning (n = 75), a single item such as “Do you have a disability?” (n = 15) and definition based on a diagnosed or self-reported health condition (n = 67), all of which have certain limitations. For example, using a single item to define who has disability can lead to underreporting because the term “disability” is often associated with an assumption of a severe condition. Relying on a medical diagnosis of a health condition or impairment can also lead to under-reporting as those without access to health services may not have been diagnosed by a professional. Functioning instruments can assess only certain domains and exclude other relevant everyday functioning areas. The Washington Group Questions, which are widely used to assess disability, for example, do not address mental health functioning, and tend to generally identify individuals with more significant levels of disability and miss those with less severe disabilities.

There are several approaches towards research on violence against women with disabilities that may serve to improve quality and availability of evidence. Integration of disability measures into existing population-based violence against women studies, or leveraging population-based household surveys by disaggregating violence against women findings by disability status, may be feasible approaches. Integration of disability measures into violence against women surveys does have some limitations, such as excluding women not living on households or unable to provide informed consent for reasons relating to disability. Another approach is to integrate violence against women measures within disability surveys. In our grey literature search, we did not identify a large number of disability specific surveys that included women’s violence experiences; some surveys that did include violence exposure did not provide adequate sex disaggregation, as required for inclusion in this scoping review. Integration of violence measurement within disability surveys may be a more cost-effective and time-efficient way of collecting representative data on these topics. However, challenges include needing to ensure that appropriate ethics and safety measures for violence against women research are incorporated into the disability surveys [8].

Lack of sex disaggregation within disability-focused research stymies further understanding of violence against women with disabilities within the disability-focused research. A large proportion of national disability surveys were not included in the scoping review as while some did include short measures of violence, the data were not disaggregated by sex. One of our inclusion criteria for studies including men and women was that “studies including men and women with disability were included if sex-specific analyses were done,” and one of the primary reasons for exclusion when we screened at the full-text level was lack of sex disaggregation of data. This indicates that there are considerable bodies of evidence and datasets available that could further shed light on the experiences of women with disabilities. However, without adequate sex-disaggregation of data, these studies were excluded from this current scoping review. An important step in improving the evidence-base, even prior to designing and conducting further primary data collection, is to conduct adequate sex-disaggregation of available data, which is recommended in United Nations guidance on gender mainstreaming policies [161]. In addition, disability-disaggregated data is fundamental for our understanding on how the inequalities that people with disability face globally can be addressed. Disaggregated data can reveal increased risks persons with disabilities may face as well as root causes of exclusion of persons with disabilities from various areas of life or highlight where inequalities exist [21]. Such disaggregation is essential for countries to develop evidence-based policies to monitor how existing barriers are addressed, to measure progress towards national targets and the SDGs, and to plan future policy priorities.

Our findings indicate limitations in measurement and evidence-base, which impact policy-makers and programmers given the overall prevalence of violence against women with disabilities is unknown, which limits development and implementation of effective policies and support services. In addition, the lack of evidence concerning how different types of disabilities operate as risk factors compared to others, and can create different barriers and enablers for women who experience violence seeking support, hampers effective programming tailored to specific needs.

Strengths and limitations

One of the strengths of this scoping review is its breadth and inclusiveness. In seeking to develop a snapshot of the field of measurement on disabilities and violence against women, we conducted a broad literature search, including national statistics, grey literature and published surveys (DHS and national VAW surveys). Based on our inclusion criteria, we identified a wide range of quantitative evidence. This resulted in a comprehensive overview of the existing literature, yet given the inclusiveness of the scoping review, the picture is of several disparate and distinct bodies of literature. We plan to undertake sub-analyses of the data identified in this study, for example, comparing types of violence and perpetrators in studies that explored multiple types of violence and a sub-analysis of prevalence of violence identified in studies that assessed disability based on functioning measure. One of the limitations at this stage is that we focus on descriptive analysis and do not present quantitative assessment of the relationship between violence and disability. We did not identify a clear and comprehensive way to categorise disability measurement beyond the descriptive analysis we present, given the purpose of disability measures within the included studies was so broad. Therefore at this stage we cannot address questions such as whether disability measurement approach was correlated with levels of violence identified. Several key questions–such as how and why different vulnerabilities intersect with disability and result in violence victimization, the perceptions and experiences of women with disabilities about violence prevention and response programs, and the role of disability discrimination in driving levels of violence–are not adequately addressed in the quantitative literature. A scoping or systematic review of qualitative literature is an important complement to this work.

Conclusion

Globally, violence against women remains unacceptably high, and women with disabilities may be at higher risk of exposure to violence, as well as being exposed to different forms of violence. Disability as a risk factor for exposure to violence is poorly understood, and this scoping review provides a first step towards understanding the current status of measurement of both violence and disability within relevant bodies of literature. Our findings indicate several gaps in evidence, including lack of comparison of how women with different types of disabilities experience violence differently, and indicate future directions for research and analysis.

Supporting information

S1 Appendix. Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

https://doi.org/10.1371/journal.pone.0263020.s001

(DOCX)

S2 Appendix. Data extraction variables.

https://doi.org/10.1371/journal.pone.0263020.s002

(DOCX)

Acknowledgments

We appreciate Dr. Ana Ortega-Avila’s support in extracting data in Spanish language reports.

Citation: Meyer SR, Stöckl H, Vorfeld C, Kamenov K, García-Moreno C (2022) A scoping review of measurement of violence against women and disability. PLoS ONE 17(1): e0263020. https://doi.org/10.1371/journal.pone.0263020

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