"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.

Decisional Conflict Scale Use over 20 Years: The Anniversary Review.

Background. The Decisional Conflict Scale (DCS) measures 5 dimensions of decision making (feeling: uncertain, uninformed, unclear about values, unsupported; ineffective decision making). We examined the use of the DCS over its initial 20 years (1995 to 2015). Methods. We conducted a scoping review with backward citation search in Google Analytics/Web of Science/PubMed, followed by keyword searches in Cochrane Library, PubMed, Ovid MEDLINE, EMBASE, CINAHL, AMED, PsycINFO, PRO-Quest, and Web of Science. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data (total/subscales). Author dyads independently screened titles, abstracts, full texts, and extracted data. We performed narrative data synthesis. Results. We included 394 articles. DCS use appeared to increase over time. Three hundred nine studies (76%) used the original DCS, and 29 (7%) used subscales only. Most studies used the DCS to evaluate the impact of decision support interventions (n = 238, 59%). The DCS was translated into 13 languages. Most decisions were made by people for themselves (n = 353, 87%), about treatment (n = 225, 55%), or testing (n = 91, 23%). The most common decision contexts were oncology (n = 113, 28%) and primary care (n = 82, 20%). Conclusions. This is the first study to descriptively synthesize characteristics of DCS data. Use of the DCS as an outcome measure for health decision interventions has increased over its 20-year existence, demonstrating its relevance as a decision-making evaluation measure. Most studies failed to report when decisional conflict was measured during the decision-making process, making scores difficult to interpret. Findings from this study will be used to update the DCS user manual.

Decisional Conflict Scale Findings among Patients and Surrogates Making Health Decisions: Part II of an Anniversary Review.

Background. We explored decisional conflict as measured with the 16-item Decisional Conflict Scale (DCS) and how it varies across clinical situations, decision types, and exposure to decision support interventions (DESIs). Methods. An exhaustive scoping review was conducted using backward citation searches and keyword searches. Eligible studies were published between 1995 and March 2015, used an original experimental/observational research design, concerned a health-related decision, and provided DCS data. Dyads independently screened titles/abstracts and full texts, and extracted data. We performed narrative syntheses and calculated average or median DCS scores. Results. We included 246 articles reporting on 253 studies. DCS scores ranged from 2.4 to 89.6 out of 100. Highest baseline DCS scores were for care planning (30.5 ± 12.8, median = 30.9) and treatment decisions (30.5 ± 14.6, median = 28.0), in contexts of primary care (33.8 ± 19.8), obstetrics/gynecology (28.8 ± 10.4), and geriatrics (32.6 ± 10.7). Baseline scores were high among decision makers who were ill (29.5 ± 13.8, median = 27.2) or making decisions for themselves (29.7 ± 14.8, median = 26.9). Total DCS scores <25 out of 100 were associated with implementing decisions. Without DESIs, DCS scores tended to increase shortly after decision making (>37.4). After DESI use, DCS scores decreased short-term but increased or remained the same long-term (>6 months). Conclusions. DCS scores were highest at baseline and decreased after decision making. DESIs decreased decisional conflict immediately after decision making. The largest improvements after DESIs were in decision makers who were ill, male, or made decisions for themselves. Meta-analyses focusing on decision types, contexts, and interventions could inform hypotheses about the expected effects of DESIs, the best timing for measurement, and interpretation of DCS scores.

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.

Variability in medication taking is associated with cognitive performance in nondemented older adults.

Interventions to slow cognitive decline typically can do little to reverse decline. Thus, early detection methods are critical. However, tools like cognitive testing are time consuming and require costly expertise. Changes in activities of daily living such as medication adherence may herald the onset of cognitive decline before clinical standards. Here, we determine the relationship between medication adherence and cognitive function in preclinical older adults. We objectively assessed medication adherence in 38 older adults (mean age 86.7 ± 6.9 years). Our results demonstrate that individuals with lower cognitive function have more spread in the timing of taking their medications (P = .014) and increase the spread in the timing of taking their medications over time (P = .012). These results demonstrate that continuous monitoring of medication adherence may provide the opportunity to identify patients experiencing slow cognitive decline in the earliest stages when pharmacologic or behavioral interventions may be most effective.

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.

Mammography Decision Aid Reduces Decisional Conflict for Women in Their Forties Considering Screening.

BACKGROUND: Clinical guidelines recommend a personalized approach to mammography screening for women in their forties; however, methods to do so are lacking. An evidence-based mammography screening decision aid was developed as an electronic mobile application and evaluated in a before-after study. METHODS: The decision aid (Mammopad) included modules on breast cancer, mammography, risk assessment, and priority setting about screening. Women aged 40-49 years who were patients of rural primary care clinics, had no major risk factors for breast cancer, and no mammography during the previous year were invited to use the decision aid. Twenty women participated in pretesting of the decision aid and 75 additional women completed the before-after study. The primary outcome was decisional conflict measured before and after using Mammopad. Secondary outcomes included decision self-efficacy and intention to begin or continue mammography screening. Differences comparing measures before versus after use were determined using Wilcoxon signed rank tests. RESULTS: After using Mammopad, women reported reduced decisional conflict based on mean Decisional Conflict Scale scores overall (46.33 versus 8.33; Z = -7.225; p < 0.001) and on all subscales (p < 0.001). Women also reported increased mean Decision Self-Efficacy Scale scores (79.67 versus 95.73; Z = 6.816, p < 0.001). Although 19% of women changed their screening intentions, this was not statistically significant. CONCLUSIONS: Women reported less conflict about their decisions for mammography screening, and felt more confident to make decisions after using Mammopad. This approach may help guide women through the decision making process to determine personalized screening choices that are appropriate for them.

A statistical characterization of the finger tapping test: modeling, estimation, and applications.

Sensory-motor performance is indicative of both cognitive and physical function. The Halstead-Reitan finger tapping test is a measure of sensory-motor speed commonly used to assess function as part of a neuropsychological evaluation. Despite the widespread use of this test, the underlying motor and cognitive processes driving tapping behavior during the test are not well characterized or understood. This lack of understanding may make clinical inferences from test results about health or disease state less accurate because important aspects of the task such as variability or fatigue are unmeasured. To overcome these limitations, we enhanced the tapper with a sensor that enables us to more fully characterize all the aspects of tapping. This modification enabled us to decompose the tapping performance into six component phases and represent each phase with a set of parameters having clear functional interpretation. This results in a set of 29 total parameters for each trial, including change in tapping over time, and trial-to-trial and tap-to-tap variability. These parameters can be used to more precisely link different aspects of cognition or motor function to tapping behavior. We demonstrate the benefits of this new instrument with a simple hypothesis-driven trial comparing single and dual-task tapping.

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.