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Developing and testing measures of reproductive decision-making agency in Nepal.

ABSTRACT: Conceptual ambiguity in how we define reproductive empowerment has left the field with inconclusive evidence of its relationship to key reproductive outcomes. Our study aimed to develop and test a measure of reproductive decision-making agency, which is a critical component of reproductive empowerment, in a sample of married women from two Nepalese districts. Initial measures were developed based on theory and previous literature. Next, we used cognitive interviewing techniques to explore local meanings of reproductive empowerment and decision making through eight focus group discussions and 24 in-depth interviews. This process resulted in four core questions used to assess decision making across three domains of reproductive behavior: when to have children, whether to use family planning, and which family planning method to use. We combined these questions to develop an overall assessment of decision-making agency. These measures were included in a quantitative survey conducted with 1000 women, split evenly between the two districts. The combined measure of overall reproductive decision-making agency was internally consistent across the three domains examined (Cronbach's alpha?=?0.6416), performed well across a range of validity assessments, including those aimed at assessing construct and criterion validity, and was predictive of a range of reproductive outcomes, particularly those related to feelings of reproductive control. The results suggest that the measures developed here provide insight into the nuances of joint versus sole decision making beyond those provided by standard measures. With better measures of reproductive agency, we can better design interventions for men and women, to meet their reproductive needs.

SUBMITTER: Hinson L

PROVIDER: S-EPMC6978488 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Developing and testing measures of reproductive decision-making agency in Nepal.

Hinson Laura L Edmeades Jeffrey J Murithi Lydia L Puri Mahesh M

SSM - population health 20191120

Conceptual ambiguity in how we define reproductive empowerment has left the field with inconclusive evidence of its relationship to key reproductive outcomes. Our study aimed to develop and test a measure of reproductive decision-making agency, which is a critical component of reproductive empowerment, in a sample of married women from two Nepalese districts. Initial measures were developed based on theory and previous literature. Next, we used cognitive interviewing techniques to explore local ...[more]

PMID: 31998824

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Project description:ObjectiveThe aim of the study was to describe and explore patient agency through resistance in decision-making about cardiovascular preventive drugs in primary care.DesignSix general practitioners from the southeast of Sweden audiorecorded 80 consultations. From these, 28 consultations with proposals from GPs for cardiovascular preventive drug treatments were chosen for theme-oriented discourse analysis.ResultsThe study shows how patients participate in decision-making about cardiovascular preventive drug treatments through resistance in response to treatment proposals. Passive modes of resistance were withheld responses and minimal unmarked acknowledgements. Active modes were to ask questions, contest the address of an inclusive we, present an identity as a non-drugtaker, disclose non-adherence to drug treatments, and to present counterproposals. The active forms were also found in anticipation to treatment proposals from the GPs. Patients and GPs sometimes displayed mutual renouncement of responsibility for decision-making. The decision-making process appeared to expand both beyond a particular phase in the consultations and beyond the single consultation.ConclusionsThe recognition of active and passive resistance from patients as one way of exerting agency may prove valuable when working for patient participation in clinical practice, education and research about patient-doctor communication about cardiovascular preventive medication. We propose particular attentiveness to patient agency through anticipatory resistance, patients' disclosures of non-adherence and presentations of themselves as non-drugtakers. The expansion of the decision-making process beyond single encounters points to the importance of continuity of care. KEY POINTS Guidelines recommend shared decision-making about cardiovascular preventive treatment. We need an understanding of how this is accomplished in actual consultations.This paper describes how patient agency in decision-making is displayed through different forms of resistance to treatment proposals. •The decision-making process expands beyond particular phases in consultations and beyond single encounters, implying the importance of continuity of care. •Attentiveness to patient participation through resistance in treatment negotiations is warranted in clinical practice, research and education about prescribing communication.

Project description:BackgroundCystic fibrosis (CF) is a life-limiting genetic disease that causes chronic lung infections. We developed an internet-based decision aid (DA) to help patients with CF make better informed decisions regarding treatments and advance care planning. We built the DA around two major treatment decisions: whether to have a lung transplant and whether to agree to invasive mechanical ventilation (intubation).ObjectiveThis study aims to conduct usability testing of the InformedChoices CF DA among key stakeholder groups.MethodsWe performed a patient needs assessment using think-aloud usability testing with patients with CF, their surrogates, and CF clinicians. Think-aloud participants provided feedback while navigating the DA, and after viewing, they answered surveys. Transcripts from the think-aloud sessions and survey results were categorized into common, generalizable themes and optimizations for improving content, comprehension, and navigation. We assessed the ease of use of the DA (System Usability Scale) and also assessed the participants' perceptions regarding the overall tone, with an emphasis on emotional reactions to the DA content, level of detail, and usefulness of the information for making decisions about either intubation or lung transplantation, including how well they understood the information and were able to apply it to their own decision-making process. We also assessed the DA's ease of navigation, esthetics, and whether participants were able to complete a series of usability tasks (eg, locating specific information in the DA or using the interactive survival estimates calculator) to ensure that the website was easy to navigate during the clinic-based advance care planning discussions.ResultsA total of 12 participants from 3 sites were enrolled from March 9 to August 30, 2018, for the usability testing: 5 CF clinicians (mean age 48.2, SD 12.0 years), 5 adults with CF, and 2 family and surrogate caregivers of people with CF (mean age of CF adults and family and surrogate caregivers 38.8, SD 10.8 years). Among the 12 participants, the average System Usability Scale score for the DA was 88.33 (excellent). Think-aloud analysis identified 3 themes: functionality, visibility and navigation, and content and usefulness. Areas for improvement included reducing repetition, enhancing comprehension, and changing the flow. Several changes to improve the content and usefulness of the DA were recommended, including adding information about alternatives to childbearing, such as adoption and surrogacy. On the basis of survey responses, we found that the navigation of the site was easy for clinicians, patients, and surrogates who participated in usability testing.ConclusionsUsability testing revealed areas of potential improvement. Testing also yielded positive feedback, suggesting the DA's future success. Integrating changes before implementation should improve the DA's comprehension, navigation, and usefulness and lead to greater adoption.

Project description:ObjectiveThis study evaluated factors influencing reproductive decision-making in families containing multiple individuals with epilepsy.MethodsOne hundred forty-nine adults with epilepsy and 149 adult biological relatives without epilepsy from families containing multiple affected individuals completed a self-administered questionnaire. Participants answered questions regarding their belief in a genetic cause of epilepsy (genetic attribution) and estimated risk of epilepsy in offspring of an affected person. Participants rated factors for their influence on their reproductive plans, with responses ranging from "much more likely" to "much less likely" to want to have a child. Those with epilepsy were asked, "Do you think you would have wanted more (or any) children if you had not had epilepsy?"ResultsParticipants with epilepsy had fewer offspring than their unaffected relatives (mean = 1.2 vs. 1.9, p = .002), and this difference persisted among persons who had been married. Estimates of risk of epilepsy in offspring of an affected parent were higher among participants with epilepsy than among relatives without epilepsy (mean = 27.2 vs. 19.6, p = .002). Nineteen percent of participants with epilepsy responded that they would have wanted more children if they had not had epilepsy. Twenty-five percent of participants with epilepsy responded that "the chance of having a child with epilepsy" or "having epilepsy in your family" made them less likely to want to have a child. Having these genetic concerns was significantly associated with greater genetic attribution and estimated risk of epilepsy in offspring of an affected parent.SignificancePeople with epilepsy have fewer children than their biological relatives without epilepsy. Beliefs about genetic causes of epilepsy contribute to concerns and decisions to limit childbearing. These beliefs should be addressed in genetic counseling to ensure that true risks to offspring and reproductive options are well understood.

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Developing and testing measures of reproductive decision-making agency in Nepal.

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Developing and testing measures of reproductive decision-making agency in Nepal.

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