Barriers and facilitators to perinatal care of women with disabilities in lower- and middle-income countries: a study protocol for scoping review of qualitative studies

Introduction

Over 1 billion people constituting more than 15% of the global population experience some form of disability, with 80% of these individuals residing in low- and middle-income countries (LMICs).1 These disabilities include physical, cognitive, mental, sensory, emotional, developmental or some combination of these impairments that result in restrictions on an individual’s ability to actively participate in society.2 However, global prevalence is greater for women than men, standing at 19% as compared with 12%, respectively.3 United Nations Entity for Gender Equality and the Empowerment of Women estimated that women comprise up to three-quarters of persons with disabilities in LMICs.4

Persons with disabilities experience a wide range of stigma, discrimination and negative attitudes while seeking care across the globe.5–8 However, women with disabilities (WWD) experience double jeopardy because of experiences in the community as well as from healthcare providers due to their impairment and judgement about their sexual desires.9 10 Evidence on reproductive health issues of WWD is sparse due to the under-recognition of the importance of reproductive healthcare needs of this stigmatised and socially excluded population.11 Some studies have noted that WWD have been continuously ignored in perinatal services due to multifaceted factors in most LMICs.12–14 Perinatal services are those that address maternal, fetal and infant health during pregnancy, delivery and the postpartum period.15

It is generally believed in most societies that WWD are asexual or less likely to marry or have children than women without disability.14 16 However, recent evidence shows that sexual desire and the desire for childbearing among disabled women do not differ significantly in non-disabled women.17 18 In addition, studies from low-income countries also report that many WWD seek to get pregnant and give birth to their own children.14 19

In such circumstances, these women face various challenges to accessing healthcare during pregnancy and childbirth due to multifaceted barriers such as: health system factors including physical inaccessibility, disability-insensitive healthcare services and negative attitudes of health staff.14 19–21 These health systems, societal and behavioural bottlenecks are the root causes of adverse maternal and pregnancy outcomes among WWD. Various studies have also highlighted that WWD are at higher risk of pre-eclampsia, gestational diabetes, premature rupture of the membranes, postpartum haemorrhage, stillbirths and maternal mortality due to lack of receipt of high-quality perinatal care services.22–24

The evidence suggests that utilisation of perinatal care services in women with disabilities is significantly lower than women without disabilities.25 Moreover, most of WWD deliver babies at home and receive care from traditional providers.26 Furthermore, these women remain dependent on spouses, family members and relatives to access healthcare facilities and also face economic challenges to seek high-quality care.

However, some studies have found that WWD have sufficient access to and utilisation of perinatal healthcare services in Canada,23 the USA,24 the UK,27 Northern Ireland28 and Pakistan.29–31 Therefore, it is pertinent to highlight facilitators of perinatal care (if any) in LMICs. There is also a dearth of literature on facilitative factors and inclusive perinatal strategies in LMICs. The Sustainable Development Goal 3 calls for mitigating disparities for all women and girls and addressing the rights and demands of WWD as a matter of priority.

A few scoping reviews have broadly focused on maternal and reproductive healthcare experiences and challenges faced by WWD.32–35 Furthermore, these reviews exclusively focus on a certain type of disability and focused on diverse types of maternal and reproductive healthcare utilisation. However, according to the best of our knowledge, no scoping review has been conducted on barriers and facilitators of utilisation of perinatal care by WWD for four major types of functional disabilities in LMICs. Moreover, this scoping review will also document the nature and extent of barriers and facilitators of inclusive perinatal healthcare strategies by reviewing existing studies that use qualitative and mixed-methods approaches in LMICs. Filling this evidence gap could potentially contribute to planning and efforts to develop more inclusive perinatal policies and programmes that have the potential to propel progress towards meeting Sustainable Development Goal 3.

MethodologyScoping review

We will conduct a scoping review of peer-reviewed and grey literature (published reports) of qualitative and mixed-methods studies on facilitators and barriers to seeking perinatal care for WWD. A scoping review method will be employed as it helps in providing an overview and mapping of new concepts of available evidence and gaps in existing literature. Furthermore, scoping reviews are mostly useful where evidence is extensive and widely dispersed.36

This review will be guided by the proposed methodological framework of scoping review by Arksey and O’Malley.37 Our protocol was registered with the Open Science Framework on 2 September 2023 (https://osf.io/erdb6/). This framework involves (1) identifying the research questions, (2) identifying the relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarising and reporting the results.

Identifying the research questions

The broader research question of this scoping review will capture the facilitators and barriers to seeking perinatal care for WWD in LMICs.

The subresearch questions are as follows:

What is the available evidence on facilitating factors for seeking perinatal care for women with four functional disabilities?

What is the available evidence on barriers faced by perinatal WWD seeking healthcare services during pregnancy, delivery and postpartum period?

What are the proposed strategies for inclusive perinatal healthcare services for women with different types of disabilities?

Identifying relevant studies

We will search for all published studies in peer-reviewed journals as well as in grey literature that focus on the research questions, from 2010 to 2023, in LMICs. Original studies including qualitative and mixed-methods designs will be included in this review. Electronic searches will be conducted on Medline/PubMed, Scopus and Google Scholar databases. In addition, different global literature pieces and reports of United Nations agencies such as WHO, UNICEF, and policy documents of government and non-government organisations will be accessed and reviewed for information on barriers and facilitators to seeking perinatal care by WWD. For this purpose, the websites of each United Nations relevant agency will be explored to identify the relevant reports and literature. Furthermore, a snowball technique will be used to get further gain access to the articles in which the references of the selected papers on disabilities and perinatal healthcare and systematic reviews will also be screened to access additional relevant studies.

Figure 1 shows the search and screening flow diagram that will be used in this scoping review. It depicts the flow of information through the different phases of the scoping review: the number of articles identified, the count remaining after removal of duplicates, the number of excluded articles through the two-step screening and the number of studies finally selected for synthesis.

Figure 1Figure 1Figure 1

Literature search and selection schematic using flow diagram. LMICs, low- and middle-income countries.

Operational definitions of key terms

Our core concept—perinatal care—is defined as seeking healthcare during pregnancy, delivery and follow-up visits after 6 weeks of pregnancy. It includes antenatal care, delivery and childbirth, and the postpartum period. For this review, we will include literature on disabilities including vision impairment, hearing impairment, cognitive impairment, physical disabilities and communication disabilities. This review is broadly focusing on functional disabilities including visual impairment, physical impairment, hearing impairment and cognitive impairment. Functional disability is defined as acquired difficulty in performing basic everyday tasks or more complex tasks needed for independent living.38 Various keywords will be used for each domain of functional disabilities to capture all the studies on functional disabilities. The study setting in this review includes all LMICs according to the World Bank classification of countries.39

Search strategy development

The search strategy will be developed to ensure that the selected studies include the information needed to address the research questions. We will consult with an expert librarian with a specialty in health science research, and researchers who have the expertise in the field of disability and health in LMICs. A detailed search strategy comprised of six steps will be used to identify the relevant studies. The concepts of the search strategy will be to search for barriers and facilitators, perinatal care, WWD (visual impairment, physical impairment, hearing impairment and cognitive impairment), types of studies and study setting. The search strategy will use a variety of combination of keywords and Medical Subject Heading of various keywords. A detailed search strategy is presented in online supplemental file 1.

We will search for the literature from 2010 to 2023. All the studies published in English language will be assessed. The eligibility criteria for study selection, type of participants, concept, context and type of evidence are mentioned in Box 1. Electronic search will be conducted on Medline/PubMed, Scopus and Google Scholar databases. All the selected studies from each database will be exported into Zotero software and duplicate studies will be removed before the final screening. The screening process and selection of the relevant studies will be completed by two different researchers using Zotero software. A senior researcher will supervise the screening process.

Box 1 Eligibility criteria

Inclusion criteria for study selection

Types of participants

Qualitative and mixed-methods studies and reports reporting facilitators and barriers faced by perinatal women with functional disabilities including visual impairment, physical impairment, hearing impairment and cognitive impairment to seeking perinatal care from 2010 to 2023.

Concept

What is the available evidence on facilitating factors for seeking perinatal care for women with four functional disabilities?

What is the available evidence on barriers faced by perinatal women with disabilities seeking healthcare services during pregnancy, delivery and postpartum period?

What are the proposed strategies for inclusive perinatal healthcare services for women with different types of disabilities?

Exclusion criteria for study selection

Types of evidence

Editorial papers, perspective and opinion papers, commentaries, letter to editors and abstract published in conference proceedings. Furthermore, studies relevant to the specific literature on COVID-19 and seeking perinatal care by women with disabilities will also be excluded due to specific challenges faced by women with disabilities in a specific pandemic situation.

Data charting

The data will be extracted by two team members independently using a data extraction tool. At first stage, the articles will be screened by reviewing the title, abstract and keyword of each study. At the second stage, the selected studies will be fully reviewed, and relevant information will be extracted through a structured data extraction sheet. Any discrepancy and disagreement will be resolved through discussion and getting the feedback of a third reviewer. A structured data extraction sheet has been developed that will be updated after the pretesting of the five studies. Initially, the data extraction sheet was developed by reviewing the scoping and systematic reviews of relevant studies (see online supplemental file 2). The relevant variables and themes are selected in order to address the research questions’ data extraction sheet.

Collating, summarising and reporting the results

The aims of this study are to document the facilitators and barriers to seeking perinatal care of WWD and to propose strategies for inclusive perinatal healthcare services in LMICs. Two members of the research team will read and screen the articles independently by using the data extraction sheet. Our review will synthesise the collected evidence using a qualitative descriptive approach. The data of this review will be presented in narrative summary. However, frequencies or percentages will be computed on some quantitative variables such as: year of publication, disability types, prevalence of each domain of functional disability, types of perinatal care covered and study setting. These data may be presented in tables or graphs.

Our review process will be comprised of two components such as to review the methodology and the result section. In the method section, we will descriptively analyse the type of study, study setting, type of disability, objectives of the study, sample size, sampling technique and data analysis methods. For the result section, we will divide the results into two major themes such as facilitators and barriers to seeking perinatal care followed by subthemes in each domain of functional disability. In each domain, inductive themes will be identified from the data. The research team will analyse the themes and subthemes and will examine the relationship of these themes with the study aim. Furthermore, the implications of these findings will be assessed for future research, policy and practice for inclusive perinatal healthcare services for WWD.

Patient and public involvement

There was no patient or public involvement in the development of this protocol.

Discussion

This study is in the phase of protocol development stage. It will begin in May 2024. The electronic search of articles will be concluded in July 2024. This scoping review will be a novel study which will synthesise the evidence on barriers and facilitators of seeking perinatal care for WWD in LMICs according to the four major types of disabilities. The objective is to document and synthesise both facilitators and barriers to propose the strategies and interventions to promote inclusive perinatal care in LMICs. Moreover, this study will propose models of care according to the type of disabilities. Some previous scoping and systematic reviews have broadly documented the evidence on access to maternal services for women with a specific type of disability40 41 and adverse maternal health outcomes.42 This study will highlight the inequities and gaps in utilisation of perinatal care among WWD with various types of functional disabilities. There is a dearth of evidence on experience of different types of functional disabilities and perinatal care in LMICs. Furthermore, exploring barriers and facilitators will inform the challenges and priorities of accessing perinatal care in order to promote inclusive perinatal care services. There is a significant burden of disabilities in women of reproductive age in LMICs. Various studies highlight that WWD experience adverse pregnancy outcomes that cause high morbidity and mortality among this vulnerable group.22–24

An independent analysis of facilitators and barriers to perinatal care for women in LMICs with four major types of disabilities is the strength of this study. Previous reviews only focused on challenges or barriers to accessing reproductive health services.12 The current review will focus on both facilitators and barriers to seeking perinatal care for WWD. Furthermore, this study will also propose inclusive perinatal care models for WWD. This review may be of interest to stakeholders and policymakers involved in testing and scaling up of inclusive perinatal strategies for WWD. The omission of quality assessment of the selected studies is the limitation of this scoping review. However, quality appraisal of the studies is not required in scoping reviews.37 43 We will ensure the rigour and quality by limiting our search to primary and original research that employed diverse methodologies. The lack of comprehensive, cross-culturally validated tools to identify persons facing activity limitations and functioning difficulties is another limitation.44 This may lead to inconsistencies in reporting of types and prevalence of disabilities in the various regions. However, this study will thematically focus on identifying barriers and facilitators to seeking perinatal care among WWD in LMICs. Moreover, this study would also focus on documenting key strategies for inclusive perinatal healthcare services for WWD in LMICs. The policy recommendations on inclusive perinatal healthcare services for WWD will be suggested based on synthesising the evidence.

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