Dissertations and Theses

Date of Degree

1-1-2022

Document Type

Dissertation

Degree Name

Doctor of Philosophy (Ph.D.)

Department

Community Health and Social Sciences

Advisor(s)

Diana Romero

Committee Members

Meredith Manze

Heidi Jones

Justine Wu

Subject Categories

Public Health

Keywords

disability, reproductive health, contraception, sterilization

Abstract

Background

Approximately 20% of individuals in the United States (US) have a disability, with 1 in 4 adult women above the age of 18 having a disability. People with disabilities include individuals who may experience difficulties with mobility, cognition, independent living, vision, hearing, and/or self-care. Disabled people face physical/environmental barriers, provider-level barriers, and system-level barriers in accessing health care, including sexual and reproductive health care, and are more likely than people without disabilities to have unmet medical needs. Four recent studies have indicated that those with disabilities are more likely to have received female sterilization as a family planning service than those without disabilities and are less likely to use moderately effective hormonal methods. Researchers expressed concerns that these findings may be related to the historical use of sterilization as a form of reproductive coercion to advance eugenics principles, or that it may be due to provider or patient knowledge gaps, ableism, and/or barriers to accessing other forms of contraception. These prior studies have focused on one or more disability groups and often combined groups; no prior study has attempted to report on all six disability categories as defined by the National Survey of Family Growth (NSFG). Furthermore, no recent studies have explored reasons for sterilization among those with disabilities.

Methodology

I conducted a sequential explanatory (QUAN ® QUAL) mixed methods study to quantitatively describe patterns in reversible and permanent contraception methods and qualitatively understand factors that influence contraceptive decision-making, particularly related to sterilization. I combined data from three cycles of the NSFG (2011-2013, 2013-2015, 2015-2017; n = 10,822) comparing female respondents with and without disabilities and by type of disability. For the qualitative portion of the study, semi-structured interviews were conducted with 26 individuals with physical disabilities about their contraceptive use and decision-making.

For the quantitative portion of the study, data analysis was conducted in SPSS version 26 and 27, using the Complex Samples module (SPSS Inc., Chicago, Ill., USA). Selected variables included independent variables relating to disability (any disability, difficulties with mobility, cognition, independent living, vision, hearing, and/or self-care), a priori hypothesized confounders relating to demographic characteristics and health status that were included in all adjusted models, and dependent variables relating to contraception used in the month of the interview and sterilization. All analyses used sample weights to approximate population-based estimates. Bivariate analyses (Rao-Scott Chi-square test), unadjusted and adjusted logistic regressions, multinomial logistic regressions, and linear regression models were run. Five main outcomes were examined: 1) contraceptive use versus nonuse, 2) type of contraceptive method used, based on effectiveness (i.e., low, moderate, high), and 3) current use of tubal/female sterilization. Among those who reported tubal/female sterilization, I also examined 4) age at sterilization, and 5) reason for sterilization. Two additional secondary outcomes were examined as well: 1) current contraceptive use of a method that requires contraceptive supplies or procedures, and 2) type of contraceptive method used based on four categories grouped by shared features (i.e., sterilization, LARC, non-LARC prescription methods, non-prescription methods). For the qualitative portion of the study, demographic and contraceptive use data were collected from all participants using a screener survey. Interviews were audio recorded, transcribed, and uploaded to a qualitative data analysis software (Dedoose) for analysis using grounded theory methodology.

Results

Respondents with difficulty concentrating or decision making had lower odds of using any method relative to respondents without this disability; those with difficulty walking or climbing stairs or difficulty dressing/bathing had significantly higher odds of method use compared with those who did not have these difficulties. Those with any disability, those with difficulty concentrating or decision making, and those with difficulty seeing had higher odds of using high effectiveness methods than moderate effectiveness methods compared to those without these disabilities.

Respondents with any disability type were more likely to have received sterilization. Increased odds of sterilization was found among respondents with any disability, difficulty with concentrating or decision making, difficulty walking/using stairs, dressing/bathing, and difficulty doing errands alone. In adjusted models, only those with difficulty doing errands alone were significantly more likely to be sterilized at a younger age. A greater percentage of those with any disability reported that they had medical reasons for their sterilization and a greater percentage of those without a disability reported that they or their partner had all the children they wanted before getting their sterilization.

All 26 interviewees had a physical disability. The average age of participants was 30.1 years and a little over half of participants were White. Qualitative analysis of the interview transcripts produced four themes with several subthemes: 1) Discrimination Experienced: Built Environment/Microaggressions (Structural Factors); 2) Mixed Experiences with Insurance Coverage and Provider Interactions (Health Care System Factors); 3) Contraceptive Decision-Making (subthemes: a. Discussions with Health Care Providers and Valued Others that Promote or Impede Contraceptive Autonomy (Patient Factors and Provider Factors), b. Medical Aspects of Disability Impact Method Choice (Patient Factors and Provider Factors), c. Convenient and Easy to Access Methods (Patient Factors)); 4) Barriers and Enablers to Accessing Reproductive Health Care (subthemes: a. Office Accessibility (Clinical Encounter), b. Provider Trust, Communication, and Attitudes (Clinical Encounter and Provider Factor), c. Access to Transportation (Patient Factor)). For the interviews with participants who had been sterilized, three themes emerged: 1) Most, But Not All, Wanted a Sterilization and Fought to Get One; 2) Reasons for Sterilization: Disability or Medical Aspects of Disability Led to Sterilization; 3) Had to Convince Provider…But Not as Much.

Interviewees noted multiple barriers to accessing reproductive health care, or medical reasons for not using particular contraceptive options, which might help explain why people with any disability in the NSFG were less likely in the national survey data to use any method. Those who reported difficulty walking/climbing stairs in the NSFG were more likely to use any method than those who did not report this difficulty, which might be due to those with physical disabilities wanting to control their period or try to best plan their pregnancy in the context of medical conditions. Some of the participants who had undergone a sterilizing procedure indicated that their disability may have had an impact on why their physicians did a tubal ligation. Similarly, NSFG respondents with disabilities were more likely to report a medical reason for their sterilization than respondents without disabilities.

Discussion

Based on previous studies, I hypothesized that those with disabilities in the NSFG would use moderately effective methods less frequently than those without disabilities, which was found for those with any disability or those with difficulty concentrating or decision making or who had difficulty seeing. I found that the greater odds of more effective contraceptive use among those with disabilities appeared to be driven by the greater odds of sterilization. These results reflect other studies’ findings that those with disabilities were more likely to have received sterilization but expand upon the findings by reporting on the reasons for sterilization.

Themes found in qualitative interviews regarding contraceptive use and decision-making were similar to those found in studies focused on those without disabilities. The barriers and enablers reported by interviewees are reflective of barriers and enablers reported in other studies on reproductive health care among people with disabilities. The present study expanded upon previous studies that have used the NSFG by including an additional cycle of data and examining disability subgroups, while the qualitative interviews of those with disabilities expanded upon the differences in contraception found in the NSFG data.

Conclusion

Additional research should explore in more depth how medical conditions may impact the desire to seek sterilization. Future studies should include those with more severe disabilities or in non-community settings to see if contraception use and sterilization differ among these groups, and should also include those with intellectual or developmental disabilities. Furthermore, given the historical context of forced sterilization, additional studies should investigate the practices of medical providers doing sterilizing procedures to get a better understanding of how a patient’s disability or medical condition may impact their decision to provide this medical care. Finding the balance between practices that promote autonomy and reduce coercion among patients with disabilities could lead to the development of decision tools or practice recommendations. The thematic findings from the qualitative interviews also highlighted the need for better medical education about disability; the impact of medical conditions on contraceptive safety and use; a need for more clinical data on safety of methods (beyond CDC’s chart of U.S. Medical Eligibility Criteria for Contraceptive Use) for those with disabilities to be able to inform medical guidelines; better resources for patients with disabilities; and, the creation of more accessible offices and spaces.

Available for download on Tuesday, December 20, 2022

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