"It Would Have Been Nice to Have a Choice": Barriers to Contraceptive Decision-making among Women with Disabilities.

INTRODUCTION: Engaging in contraceptive decisions is an important part of reproductive health for women and other people with the capacity for pregnancy. However, not all individuals capable of pregnancy have equal access to information and/or opportunities to make fully informed decisions. The goal of this study was to understand barriers women with disabilities experience around contraceptive decision-making and whether these differ based on type of disability. METHODS: We conducted focus groups with 17 reproductive age adult women (aged 18-45 years). Focus groups were homogenous with regard to disability type and consisted of one group for each of the following disability categories: 1) physical disability, 2) intellectual and developmental disabilities, 3) blind or low vision, and 4) Deaf users of American Sign Language. Data were collected in the Portland, Oregon, metropolitan area during 2016-2017. We analyzed focus group transcripts using content analysis. RESULTS: Barriers to informed contraceptive decision-making emerged in five main thematic areas: 1) lack of information in accessible formats, 2) incomplete information about contraceptive side effects, 3) limited clinician knowledge and relevant research specific to the care of women with disabilities, 4) taboos around discussing sexual activity, and 5) limited opportunities for shared contraceptive decision-making. CONCLUSIONS: Women with disabilities faced numerous barriers to contraceptive decision-making. Although the barriers differed somewhat by disability type, many barriers were consistent across groups, suggesting commonalities associated with the experience of disability in the context of contraceptive decision-making. Increased attention to the reproductive health needs of people with disabilities is important for improving health care equity and quality.

Experiences of Women With Disabilities in Accessing and Receiving Contraceptive Care.

OBJECTIVE: To conduct an initial exploration of the experiences of women with different types of disability when they attempt to obtain contraceptive care. DESIGN: Multiple-category focus group design. SETTING: Multiple community sites. PARTICIPANTS: Seventeen women with disabilities of reproductive age. METHODS: We purposively sampled women with different types of disability and conducted four focus groups organized by disability type: physical disability, intellectual and developmental disability, blind or low vision, and deaf or hard of hearing. We used a semistructured focus group guide to elicit participants' positive and negative experiences with contraceptive care. We analyzed focus group transcripts using content analysis. RESULTS: Participants identified challenges to obtaining high-quality contraceptive care in three main thematic areas: Accessibility and Accommodations, Clinician Attitudes, and Health Insurance. Participants with physical disabilities encountered inaccessible clinic rooms and examination tables, and those with sensory disabilities or intellectual and developmental disability described inaccessible clinic forms and information. Participants from multiple disability groups described negative attitudes of health care providers and health insurance limitations. CONCLUSION: As described by our participants, the processes and infrastructure of contraceptive care were based on an assumption of an able-bodied norm. Reliance on such a norm, for example, offering a paper pamphlet to a blind woman, is not helpful and can be harmful to women with disabilities. Increased attention to the reproductive health care needs of women with disabilities is important for improving health care equity and quality.

Contraceptive knowledge and use among women with intellectual, physical, or sensory disabilities: A systematic review.

BACKGROUND: Women spend most of their reproductive years avoiding pregnancy. However, we know little about contraceptive knowledge and use among women with disabilities, or about strategies to improve contraceptive knowledge and decision-making in this population. OBJECTIVE: To systematically review published literature on women with disabilities and: 1) contraceptive knowledge; 2) attitudes and preferences regarding contraception; 3) contraceptive use; 4) barriers and facilitators to informed contraceptive use; and 5) effectiveness of interventions to improve informed contraceptive decision-making and use. METHODS: We searched MEDLINE, PsychINFO, the Cochrane Library, CINAHL, and ERIC databases from inception through December 2017. Two reviewers independently reviewed studies for eligibility, abstracted study data, and assessed risk of bias following PRISMA guidance. RESULTS: We reviewed 11,659 citations to identify 62 publications of 54 unique studies (total n of women with disabilities = 21,246). No standard definition of disability existed across studies. The majority of studies focused on women with intellectual disabilities (ID). Women with ID and those who were deaf or hard-of-hearing had lower knowledge of contraceptive methods than women without disabilities. Estimates of contraceptive use varied widely, with some evidence that women with disabilities may use a narrower range of methods. Five of six studies evaluating educational interventions to increase contraceptive knowledge or use reported post-intervention improvements. CONCLUSIONS: Women with disabilities may use a more narrow mix of contraceptive methods and are often less knowledgeable about contraceptives than women without disabilities. Interventions to improve knowledge show some promise. A lack of data exists on contraceptive preferences among women with disabilities.

Evaluation of risk communication in a mammography patient decision aid.

OBJECTIVES: We characterized patients' comprehension, memory, and impressions of risk communication messages in a patient decision aid (PtDA), Mammopad, and clarified perceived importance of numeric risk information in medical decision making. METHODS: Participants were 75 women in their forties with average risk factors for breast cancer. We used mixed methods, comprising a risk estimation problem administered within a pretest-posttest design, and semi-structured qualitative interviews with a subsample of 21 women. RESULTS: Participants' positive predictive value estimates of screening mammography improved after using Mammopad. Although risk information was only briefly memorable, through content analysis, we identified themes describing why participants value quantitative risk information, and obstacles to understanding. We describe ways the most complicated graphic was incompletely comprehended. CONCLUSIONS: Comprehension of risk information following Mammopad use could be improved. Patients valued receiving numeric statistical information, particularly in pictograph format. Obstacles to understanding risk information, including potential for confusion between statistics, should be identified and mitigated in PtDA design. PRACTICE IMPLICATIONS: Using simple pictographs accompanied by text, PtDAs may enhance a shared decision-making discussion. PtDA designers and providers should be aware of benefits and limitations of graphical risk presentations. Incorporating comprehension checks could help identify and correct misapprehensions of graphically presented statistics.

Inhibition, executive function, and freezing of gait.

BACKGROUND: Studies suggest that freezing of gait (FoG) in people with Parkinson's disease (PD) is associated with declines in executive function (EF). However, EF is multi-faceted, including three dissociable components: inhibiting prepotent responses, switching between task sets, and updating working memory. OBJECTIVE: This study investigated which aspect of EF is most strongly associated with FoG in PD. METHOD: Three groups were studied: adults with PD (with and without FoG) and age-matched, healthy adults. All participants completed a battery of cognitive tasks previously shown to discriminate among the three EF components. Participants also completed a turning-in-place task that was scored for FoG by neurologists blind to subjects' self-reported FoG. RESULTS: Compared to both other groups, participants with FoG showed significant performance deficits in tasks associated with inhibitory control, even after accounting for differences in disease severity, but no significant deficits in task-switching or updating working memory. Surprisingly, the strongest effect was an intermittent tendency of participants with FoG to hesitate, and thus miss the response window, on go trials in the Go-Nogo task. The FoG group also made slower responses in the conflict condition of the Stroop task. Physician-rated FoG scores were correlated both with failures to respond on go trials and with failures to inhibit responses on nogo trials in the Go-Nogo task. CONCLUSION: These results suggest that FoG is associated with a specific inability to appropriately engage and release inhibition, rather than with a general executive deficit.

A socialization intervention in remote health coaching for older adults in the home.

Previous studies have shown that social ties enhance both physical and mental health, and that social isolation has been linked to increased cognitive decline. As part of our cognitive training platform, we created a socialization intervention to address these issues. The intervention is designed to improve social contact time of older adults with remote family members and friends using a variety of technologies, including Web cameras, Skype software, email and phone. We used usability testing, surveys, interviews and system usage monitoring to develop design guidance for socialization protocols that were appropriate for older adults living independently in their homes. Our early results with this intervention show increased number of social contacts, total communication time (we measure email, phone, and Skype usage) and significant participant satisfaction with the intervention.

A comparative analysis of serial and free recall.

Multitrial free and serial recall tasks differ both in recall instruction and in presentation order across trials. Waugh (1961) compared these paradigms with an intermediate condition: free recall with constant presentation order. She concluded that differences between free and serial recall were due only to recall instructions, and not to presentation order. The present study reevaluated the relation between free and serial recall, using Waugh's three conditions. By examining recall transitions and the organization of information retained across trials, we conclude that presentation order is an important factor, causing participants to exhibit the same temporal associations in serial recall and in free recall with constant presentation order.