Impact of social-, health-, and disability-related factors on pregnancy outcomes in women with intellectual and developmental disabilities: A population-based latent class analysis

BackgroundStudies have shown women with intellectual and developmental disabilities (IDD) have elevated risks of perinatal complications, but few studies have examined how social, health, and disability-related factors affect these risks.ObjectivesTo identify and describe subgroups of pregnant women with IDD according to social, health, and disability-related factors and examine the risks of perinatal complications in these subgroups compared to women without IDD.MethodsWe performed a population-based cohort study in Ontario, Canada, of women with (n = 1922) and without (n = 1,126,854) IDD, with a singleton birth in 2003–2018. We used latent class analysis (LCA) to identify subgroups of women according to social (e.g., age), health (e.g., chronic medical conditions), and disability-related (e.g., IDD type) characteristics. Modified Poisson regression was then used to compare the risks of hypertensive disorders of pregnancy, cesarean delivery, and preterm birth across identified subgroups to women without IDD.ResultsThe LCA identified 4 classes of women with IDD: (1) young women who were mostly healthy and had little primary care before pregnancy (n = 253); (2) older women who were mostly healthy (n = 795); (3) young to mid-aged women who had significant comorbidities (n = 181); and (4) young women, many of whom were autistic, who had some medical comorbidities and significant psychiatric comorbidities (n = 693). Class 3 consistently had the greatest risks of perinatal complications, across all IDD groups, compared to women without IDD.ConclusionsThese findings underscore the importance of multidisciplinary care approaches tailored to the needs of at-risk women with IDD, in the preconception and perinatal periods.     

Examining the Health Care Experiences of Women Living with Human Immunodeficiency Virus (HIV) and Perceived HIV-Related Stigma

IntroductionThe increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women's health service experiences at a local outpatient clinic.MethodsA qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma.ResultsWomen perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient–provider relationships, resulting in women's disengagement from health care.ConclusionsWe propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV.     

The Focus They Deserve: Improving Women Veterans’ Health Care Access

PurposeVeterans Health Administration (VHA) initiatives aim to provide veterans timely access to quality health care. The focus of this analysis was provider and staff perspectives on women veterans' access in the context of national efforts to improve veterans’ access to care.MethodsWe completed 21 site visits at Veterans Health Administration medical facilities to evaluate the implementation of a national access initiative. Qualitative data collection included semistructured interviews (n = 127), focus groups (n = 81), and observations with local leadership, administrators, providers, and support staff across primary and specialty care services at each facility. Deductive and inductive content analysis was used to identify barriers, facilitators, and contextual factors affecting implementation of initiatives and women veterans’ access.ResultsParticipants identified barriers to women veterans' access and strategies used to improve access. Barriers included a limited availability of providers trained in women's health and gender-specific care services (e.g., women's specialty care), inefficient referral and coordination with community providers, and psychosocial factors (e.g., childcare). Participants also identified issues related to childcare and perceived harassment in medical facility settings as distinct access issues for women veterans. Strategies focused on increasing internal capacity to provide on-site women's comprehensive care and specialty services by streamlining provider training and credentialing, contracting providers, using telehealth, and improving access to community providers to fill gaps in women's services. Participants also highlighted efforts to improve gender-sensitive care delivery.ConclusionsAlthough some issues affect all veterans, problems with community care referrals may disproportionately affect women veterans’ access owing to a necessary reliance on community care for a range of gender-specific services.     

Examining barriers to harm reduction and child welfare services for pregnant women and mothers who use substances using a stigma action framework

Pregnant women and mothers who use substances often face significant barriers to accessing and engaging with substance use services. A scoping review was conducted in 2019 to understand how stigma impacts access to, retention in and outcomes of harm reduction and child welfare services for pregnant women and mothers who use substances. The forty-two (n = 42) articles were analysed using the Action Framework for Building an Inclusive Health System developed by Canada's Chief Public Health Officer to articulate the ways in which stigma and related health system barriers are experienced at the individual, interpersonal, institutional and population levels. Many articles highlighted barriers across multiple levels, 19 of which cited barriers at the individual level (i.e., fear and mistrust of child welfare services), 18 at the interpersonal level (i.e., familial and relational influence on accessing substance use treatment), 30 at the institutional level (i.e., high organisational expectations on women) and 17 at the population level (i.e., negative stereotypes and racism). Our findings highlight the interconnectedness of stigma and related barriers and the ways in which stigma at the institutional and population levels pervasively influence individual and interpersonal experiences of stigma. Despite a wealth of literature on barriers to treatment and support for pregnant women and mothers who use substances, there has been minimal focus on how systems can address these formidable barriers. This review highlights the ways in which the barriers are connected and identifies opportunities for service providers and policymakers to better support pregnant women and mothers who use substances.     

Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis

Background

There is growing evidence demonstrating the impact of engaging people with lived experience (PWLE) in health research. However, it remains unclear what evidence is available regarding the impact of engagement specific to mental health and substance use research.

Methods

A scoping review of three databases and thematic analysis were conducted. Sixty-one articles that described the impact of engagement in mental health and substance use research on either individual experiences or the research process were included.

Results

Key topics include (a) the impact of engagement on individual experiences; (b) the impact of engagement on the research process; and (c) facilitators and barriers to impactful engagement. Studies largely focused on the perceived positive impact of engagement on PWLE (e.g., personal and professional growth, empowering and rewarding experience, feeling heard and valued), researchers (e.g., rewarding experience, deeper understanding of research topic, changes to practice), and study participants (e.g., added value, fostered a safe space). Engagement activities were perceived to improve facets of the research process, such as improvements to research quality (e.g., rigour, trustworthiness, relevance to the community), research components (e.g., recruitment), and the research environment (e.g., shifted power dynamics). Facilitators and barriers were mapped onto the lived experience, researcher, team, and institutional levels. Commonly used terminologies for engagement and PWLE were discussed.

Conclusion

Engaging PWLE—from consultation to co-creation throughout the research cycle—is perceived as having a positive impact on both the research process and individual experiences. Future research is needed to bring consistency to engagement, leverage the facilitators to engagement, and address the barriers, and in turn generate research findings that have value not only to the scientific community, but also to the people impacted by the science.

Patient or Public Contribution

PWLE were engaged throughout the scoping review process, including the screening phase, analysis phase, and write-up phase.     

Telehealth for Contraceptive Services During the COVID-19 Pandemic: Provider Perspectives

BackgroundTelehealth use rapidly increased during the COVID-19 pandemic, including for contraceptive care (e.g., counseling and method provision). This study explored providers’ experiences with contraceptive care via telehealth.MethodsWe conducted a survey with open-ended responses among contraceptive providers across the United States. The study population included physicians, nurse practitioners, health educators, and other health professionals (n = 546). Data were collected from April 10, 2020, to January 29, 2021. We conducted qualitative content analysis of the open-ended responses.ResultsProviders highlighted the benefits of telehealth, including continuing access to contraceptive services and accommodating patients who faced challenges attending in-person contraceptive visits. Providers at school-based health centers reported telehealth allowed them to reach young people while schools were closed. However, many providers noted a lack of patient awareness about the availability of telehealth services and disparities in access to technology. Providers felt there was less personal connection in virtual contraceptive counseling, noted challenges with confidentiality, and expressed concern about the inability to provide the full range of contraceptive methods through telehealth alone.ConclusionsThe pandemic significantly impacted contraceptive health care delivery. Telehealth has sustained access to contraception in important ways, but has been accompanied by various challenges, including technological access and confidentiality. As hybrid models of care evolve, it is important to assess how telehealth can play a role in providing contraceptive care while addressing its barriers.     

“The experiences and needs of persons with disabilities in using paratransit services”

BackgroundPersons with disabilities do not yet experience equality with the rest of the population when using transportation. Paratransit services take over transportation for persons with disabilities when public transportation cannot be used or can only be used to a limited extent. The usefulness of these services remains limited due to financial and structural reasons.ObjectiveThis study aims to identify the experiences of persons with disabilities with paratransit in Switzerland, explores their needs and verifies facilitators and barriers to the use of paratransit services. Furthermore, perceived experiences of how barriers and facilitators of transportation influence the participation in different areas of life of these persons are examined.MethodsIn this study, we adopted a qualitative approach with four online focus group discussions and one physically present discussion group, including 31 participants overall. We collected data between July and October 2021 and analyzed the data using content analysis according to Mayring (2015).ResultsOverall, persons with disabilities experience paratransit as important and appreciated this alternative to public transportation. Specifically, the services’ need is individual for each person and depends on different facilitating factors (e.g., habits, health condition, activities, safety, accessibility, service) and barriers (e.g., costs, weather conditions).ConclusionsThe need for paratransit services is highly individual and impacts participation in different life areas. On one hand, the federalist system in Switzerland supports a local and cultural embedment, but on the other hand leads to difficulties concerning transportation beyond the close local environment and for longer distances.     

Survey of Barriers and Facilitators to Engagement in a Multidisciplinary Healthy Lifestyles Program for Children

ObjectiveTo understand facilitators and barriers to engagement in a multidisciplinary assessment and intervention program for children and adolescents with obesity, particularly for Māori, the Indigenous people of New Zealand.MethodsWhānau Pakari participants and caregivers (n = 71, 21% response rate) referred to the family-based healthy lifestyles program in Taranaki, New Zealand, were asked to participate in a confidential survey, which collected self-reported attendance levels and agreement with statements around service accessibility and appropriateness and open-text comments identifying barriers and facilitators to attendance.ResultsSelf-reported attendance levels were higher when respondents reported sessions to be conveniently located (P = .03) and lower when respondents considered other priorities as more important for their family (P = .02). Māori more frequently reported that past experiences of health care influenced their decision to attend (P = .03). Facilitators included perceived convenience of the program, parental motivation to improve child health, and ongoing support from the program.Conclusions and ImplicationsProgram convenience and parental and/or self-motivation to improve health were facilitators of attendance. Further research is required to understand the relationship between past experiences with health care and subsequent engagement with services.     

Addressing perinatal health inequities in Dutch municipalities: Protocol for the Healthy Pregnancy 4 All-3 programme

BackgroundHealth inequities are already present at birth and affect individuals’ health and socioeconomic outcomes across the life course. Addressing these inequities requires a cross-sectoral approach, covering the first 1,000 days of life. We believe that - in the Dutch context - municipal governments can be the main responsible actor to drive such an approach, since they are primarily responsible for organising adequate public health. Therefore, we aim to identify and develop transformative change towards the implementation of perinatal health into municipal approaches and policies concerning health inequities.MethodsA transition analysis will be combined with action research in six Dutch municipalities. Interviews and interactive group sessions with professionals and organisations that are relevant for the institutional embedding of perinatal health into approaches and policies regarding health inequities, will be organised in each municipality. As a follow-up, a questionnaire will be administered among all participants one year after completion of the group sessions.DiscussionWe expect to gain insights into the role of municipalities in addressing perinatal health inequities, learn more about the interaction between different key stakeholders, and identify barriers and facilitators for a cross-sectoral approach to perinatal health. This knowledge will serve to inform the development of approaches to perinatal health inequities in areas with relatively poor perinatal health outcomes, both in the Netherlands and abroad.     

“I want to feel young again”: experiences and perspectives of young people who inject drugs living with hepatitis C in Vancouver,Canada

ObjectivesPeople who inject drugs (PWID) are disproportionately impacted by hepatitis C virus (HCV). Despite the availability and efficacy of direct-acting antiviral (DAA) HCV therapies, treatment rates remain low among PWID. Among PWID, those who are young (under age 30) experience high rates of HCV and also face distinct barriers to care. The objective of this study is to identify facilitators and barriers to navigating various facets of the HCV cascade of care, including DAA treatment access, among young PWID.MethodsWe draw on data from in-depth, semi-structured interviews conducted between May and November 2019 with a sample of 11 young, street-involved PWID who have lived experience of HCV and who live in Metro Vancouver, Canada. Informed by a social constructivist epistemology, data were thematically analyzed using an equity-oriented theoretical framework.ResultsOur analysis yielded two key themes. First, participants described facilitators to HCV care access, including individual factors (e.g., desire to be cured, knowledge of side effects) and healthcare and socio-contextual factors (e.g., peer supports, supportive youth-specific services). Second, participants described a contrasting set of barriers to HCV care access, including concerns over treatment side effects and (in)eligibility, complex healthcare system navigation, substance use- and housing-related stigma, and clinician gatekeeping of DAAs.ConclusionFindings from this study underscore the need for HCV-related knowledge-building efforts among young PWID and clinicians. Also needed are structural policy interventions to facilitate access to DAAs, including anti-stigma efforts, access to safe housing, and the scale-up of low-barrier youth-specific services and decentralized HCV care.     

Factors Associated With Pain Assessment for Nursing Home Residents: A Systematic Review and Meta-Synthesis

ObjectivesThe burden of pain in nursing home residents is substantial; unfortunately, many times it goes undiagnosed and is inadequately treated. To improve identification of pain in this population, we aimed to review and synthesize findings from qualitative studies that report primary barriers and facilitators to pain assessment in nursing home residents.DesignThis is a Cochrane-style systematic review and narrative synthesis of qualitative evidence adhering to PRISMA guidelines. Databases were searched from inception to June 2018, supplemented by hand searching of references. We assessed the quality of included studies using the Critical Appraisal Skills Program Quality Appraisal Checklist.Setting and participantsWe included studies conducted in nursing homes. Studies focused on nursing home residents, nursing home staff, or both.MeasuresExtracted data were subject to thematic analyses and were collated and summarized into 3 groups: resident, health care provider, and health care system factors.ResultsThirty-one studies met our inclusion criteria. Resident factors had 3 subthemes: physical or cognitive impairments, attitudes and beliefs, and social/cultural/demographic characteristics. Health care provider factors had 3 subthemes: knowledge and skills, attitudes and beliefs, and social/cultural/demographic characteristics. Health care system-level factors had 3 subthemes: interpersonal factors, resources, and policy. Key barriers to pain assessment included the presence of resident cognitive impairment, health care providers' lack of knowledge, and the breakdown of communication across organizational hierarchies. Key facilitators to pain assessment included the identification of pain-related behaviors in residents, the experience and skills of health care providers, and establishing facility-level pain assessment protocols and guidelines.Conclusion and implicationsFindings from this review identify primary barriers and facilitators to pain assessment in nursing home residents, highlighting key considerations for stakeholders, including health care providers, and health care policy decision makers. These efforts have the potential to improve the identification of pain in residents, and may ultimately improve pain management and residents' quality of life.     

COVID-19 vaccine perceptions in New York State's intellectual and developmental disabilities community

BackgroundPeople with intellectual and developmental disabilities (IDD) are at disproportionate risk for severe COVID-19 outcomes, particularly those living in congregate care settings. Yet, there is limited data on vaccine perceptions in the disability community.ObjectiveTo explore COVID-19 vaccine perceptions in individuals with IDD, their family members, and those who work with them, to inform a statewide vaccine information and messaging project.MethodsA national survey, adapted in five languages for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State. Constructs included vaccine intention, reasons for vaccine hesitancy, and trusted sources of vaccine information. Zip code data were used to map respondent location and vaccine preferences.ResultsOf n = 825 respondents, approximately 75% intended to or had received the vaccine across roles (i.e., people with developmental disabilities, family members, direct care workers) and racial/ethnic groups. Greater vaccine hesitancy was reported in younger individuals and those making decisions on behalf of a person with IDD. Concerns included side effects and the swiftness of vaccine development. Black and Hispanic participants had heightened concerns about being an “experiment” for the vaccine. Trusted sources of information included healthcare providers and family members. Respondents who intended to/received the vaccine were dispersed throughout the state.ConclusionsVaccine preferences in this New York State disability community sample align with national data. Identified concerns suggest the need for community education that addresses misperceptions. Age and race differences in perspectives highlight the need for tailored education, delivered by trusted messengers.     

Determinants of Breastfeeding Initiation and Duration Among African American DC WIC Recipients: Perspectives of Recent Mothers

BackgroundIn Washington, DC, African American women receiving the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) benefits have the lowest breastfeeding rates compared with other WIC-eligible populations.ObjectivesThe purpose of this research was to use the social cognitive theory and elements of social support as a guiding framework to better understand the factors affecting breastfeeding initiation and duration among African American WIC recipients in low-income areas of Washington, DC.MethodsSemistructured interviews were conducted with 24 women receiving WIC services in DC to learn about their infant feeding practices and decisions. Using a pragmatic approach, an integrated inductive and deductive coding strategy was used.ResultsBreastfeeding experiences were influenced by barriers at multiple levels: community (i.e., perceptions of breastfeeding in one's network), interpersonal (i.e., few supportive providers), and individual constraints (i.e., pain, supply, and latching issues) as well as environmental difficulties of finding resources to help overcome these challenges. Social support from a close family member, friend, or partner often helped to minimize many of these barriers and facilitated breastfeeding.ConclusionsSocial support seems to bolster efficacy and help women to overcome various barriers to breastfeeding in their immediate environment; however, social support from providers was limited. WIC offers recipients in DC many helpful breastfeeding resources. Although several respondents were aware of these resources, overall use in the sample was low. Continued outreach may help further facilitate breastfeeding in African American mothers by providing additional sources of social support.     

“None of it was especially easy”: improving COVID-19 vaccine equity for people with disabilities

ObjectivesOur study aimed to (1) identify barriers to equitable access to COVID-19 vaccines for Canadians with disabilities and (2) present recommendations made by study participants to improve immunization programs in terms of inclusivity and equitable access.MethodsWe invited Manitobans living with disabilities to participate in online focus groups. Focus groups were conducted across multiple disability experiences, although one focus group was advertised explicitly as offering simultaneous American Sign Language interpretation to encourage people who are d/Deaf or hard of hearing to participate. Participants were asked about their perspectives on the management of COVID-19 public health measures and vaccination program rollout. Participants were also asked about barriers and facilitators of their vaccination experiences and if they had recommendations for improvement.ResultsThe participants identified three areas where they encountered routine barriers in accessing the COVID-19 vaccines: (1) vaccine information and appointment booking, (2) physical access to vaccination clinics, and (3) vaccination experience. While participants identified specific recommendations to improve vaccine accessibility for people with disabilities, the single most crucial advice consistently identified was to involve people with disabilities in developing accessible immunization programs.ConclusionMeaningful engagement with people living with disabilities in immunization program planning would help ensure that people with disabilities, who already face significant challenges due to COVID-19, are offered the same protections as the rest of the population. These recommendations could be easily transferred to the administration of other large-scale immunization campaigns (e.g., influenza vaccines).     

A qualitative exploration of barriers to HIV prevention,treatment and support: Perspectives of transgender women and service providers

Transgender (trans) women experience barriers to access to HIV care, which result in their lower engagement in HIV prevention, treatment and support relative to cisgender people living with HIV. Studies of trans women's barriers to HIV care have predominantly focused on perspectives of trans women, while barriers are most often described at provider, organisation and/or systems levels. Comparing perspectives of trans women and service providers may promote a shared vision for achieving health equity. Thus, this qualitative study utilised focus groups and semi-structured interviews conducted 2018–2019 to understand barriers and facilitators to HIV care from the perspectives of trans women (n = 26) and service providers (n = 10). Barriers endorsed by both groups included: (a) anticipated and enacted stigma and discrimination in the provision of direct care, (b) lack of provider knowledge of HIV care needs for trans women, (c) absence of trans-specific services/organisations and (d) cisnormativity in sexual healthcare. Facilitators included: (a) provision of trans-positive trauma-informed care, (b) autonomy and choice for trans women in selecting sexual health services and (c) models for trans-affirming systems change. Each theme had significant overlap, yet nuanced perspective, between trans women and service providers. Specific recommendations to improve HIV care access for trans women are discussed. These recommendations can be used by administrators and service providers alike to work collaboratively with trans women to reduce barriers and facilitators to HIV care and ultimately to achieve health equity for trans women.     

Bridging the Gap for Perinatal Veterans: Care by Mental Health Providers at the Veterans Health Administration

BackgroundPregnant women veterans receive maternity care from community obstetricians but continue to receive mental health care within the Veterans Health Administration (VHA). Our objective was to explore the experiences of VHA mental health providers with pregnant and postpartum veterans.MethodsMental health providers (n = 33) were identified at 14 VHA facilities across the United States. Semistructured interviews were conducted over the phone to learn about provider experiences with perinatal women veterans and their perceptions of depression screening and mental health treatment management for pregnant and postpartum veterans receiving mental health care within the VHA system.FindingsProviders identified an absence of screening protocols and referral procedures and variability in risk/benefit conversations surrounding psychotropic medication use as important areas of weakness for VHA mental health care during the perinatal period. Care coordination within facilities, primarily through Primary Care-Mental Health Integration teams, was identified as a main facilitator to promoting better mental health care for perinatal veterans.ConclusionsMental health providers caring for veterans during the perinatal period identified several areas where care could be improved, notably in screening and referral processes. A refinement to current guidelines to specify standard screening tools, screening schedules, and referral processes could potentially engage a greater number of pregnant women in VHA mental health care.     

Barriers to,and facilitators of,access to cancer services and experiences of cancer care for adults with a physical disability: A mixed methods systematic review

BackgroundCancer services need to be inclusive and accessible to everybody, including people with disabilities. However, there is evidence suggesting that people with disabilities experience poorer access to cancer services, compared to people without disabilities.ObjectivesTo investigate the barriers and facilitators of access to cancer services for people with physical disabilities and their experiences of cancer care.MethodsA mixed-method systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach. We used the Mixed Methods Appraisal Tool (MMAT -Version 11) to assess the quality of the included studies. We employed thematic synthesis to bring together data from across both qualitative and quantitative studies and we assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) approach.ResultsSeven quantitative studies and 10 qualitative studies (across 18 publications) were included. The findings highlighted a dearth of research on the experiences of men with disabilities. Furthermore, only one study explored experiences of cancer treatment, with all other studies focusing on cancer screening. Five synthesised findings were identified that reflected barriers and facilitators, highlighting both what makes access to services difficult and what are the strategies that could improve it.ConclusionsKnowing what works for people with disabilities can enable the delivery of appropriate services. The findings of this review suggest that the mere existence of services does not guarantee their usability. Services need to be relevant, flexible, and accessible, and offered in a respectful manner.