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Processes for engaging and retaining women who are experiencing adversity in longitudinal health services research.

ABSTRACT: BACKGROUND:Women and families experiencing socioeconomic and psychosocial adversity are the least likely to access health care but most likely to benefit. For health services to effectively meet the needs of individuals experiencing adversity, research involving the health services must be truly representative. However, individuals experiencing adversity are typically excluded from or underrepresented in health services research. This paper reports on the implementation of a quality improvement approach designed to support recruitment and retention of pregnant women experiencing adversity in a longitudinal, health services randomized controlled trial ("right@home"). METHODS:right@home recruited Australian women from 10 public maternity hospitals across the states of Victoria and Tasmania who were experiencing adversity (?2 risk factors on screening survey). Regular follow-up assessments were conducted by phone or face-to-face to child age 2?years. Research processes were designed taking heed of previous research demonstrating effective strategies for recruiting and retaining minority groups (e.g. piloting the recruitment process; recruiting via the health service providing care to the subgroup; remunerating participants); however, we were concerned that important information was missing. Therefore, once recruitment began, we conducted a continuous evaluation of the research processes, testing and implementing changes to processes or new strategies to maximize recruitment and retention (e.g. using a suite of strategies to maintain contact with families, using flexible data collection methods, obtaining consent for data linkage for future health and education data). RESULTS:right@home enrolled a large cohort of women (N?=?722) experiencing high levels of adversity according to socioeconomic status and psychosocial risk factors, and achieved excellent retention (83% completion at 2?years). Most strategies appeared to increase recruitment and retention. All required additional time from the research team to develop and test, and some required extra funding, which ranged from minor (e.g. printing) to substantial (e.g. salaries, remuneration). CONCLUSIONS:By taking a quality improvement approach, supported by sufficient resourcing and flexible research processes, it is possible to recruit and retain a large cohort of women experiencing adversity who are typically missed or lost from longitudinal research.

SUBMITTER: Price A

PROVIDER: S-EPMC6854799 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Processes for engaging and retaining women who are experiencing adversity in longitudinal health services research.

Price Anna A Bryson Hannah H Smith Ashlee A Mensah Fiona F Goldfeld Sharon S

BMC health services research 20191114 1

<h4>Background</h4>Women and families experiencing socioeconomic and psychosocial adversity are the least likely to access health care but most likely to benefit. For health services to effectively meet the needs of individuals experiencing adversity, research involving the health services must be truly representative. However, individuals experiencing adversity are typically excluded from or underrepresented in health services research. This paper reports on the implementation of a quality impr ...[more]

PMID: 31727073

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Project description:BackgroundStakeholder engagement helps ensure that research is relevant, clinical innovations are responsive, and healthcare services are patient-centered.ObjectiveEstablish and sustain a Veteran engagement board involving older Veterans and caregivers to provide input on aging-related research and clinical demonstration projects.Design and participantsThe Older Veteran Engagement Team (OVET)-a group of eight Veterans and one caregiver who range in age from 62 to 92-was formed in November 2017 and has met monthly since January 2018. The OVET provides feedback on topics that reflect the foci of the VA Eastern Colorado Geriatric Research Education and Clinical Center (GRECC) (e.g., physical functioning, hearing health, and emotional wellness/mental health). Ongoing evaluation documents the return on investment of Veteran engagement.Main measuresThe OVET member and provider/investigator meeting evaluations with longitudinal follow-up at 6 and 12 months.ResultsReturn on investment of Veteran engagement is multi-faceted. For OVET, ROI ranges from grant support to improved healthcare quality/efficiency to social-emotional benefits. To date, funding awards total over $2.3 M for NIH and VA-funded projects to which OVET provided substantive feedback. Documented impacts on healthcare services include reductions in patient wait times, more appropriate utilization of services and increased patient satisfaction. Social-emotional benefits include generativity, as OVET members contribute to improving clinical and community-based supports for other Veterans. The OVET provides an opportunity for older Veterans to share their lived experience with trainees and early career investigators who are preparing for careers serving Veterans.ConclusionThe OVET is similar to other established stakeholder engagement groups; team members offer their individual viewpoints at any stage of research, clinical demonstration, or quality improvement projects. The OVET provides a mechanism for the voice of older Veterans and caregivers to shape aspects of individual projects. Importantly, these projects support patient-centered care and promote the characteristics of an age-friendly healthcare system.

Project description:With the increase in patient and consumer activism through the late twentieth century and into this century, patient roles in research evolved into a new model of research engagement, with patients serving as active advisors and co-leading or leading clinical research. By requiring active engagement of patients and other stakeholders, several government research funders have advanced this model, particularly in Canada, the United States (US), United Kingdom (UK), and Australia. A consortium of individuals from these countries formed a Multi-Stakeholder Engagement (MuSE) consortium to examine critical issues in engaged research, establish consensus on definitions, and provide guidance for the field, beginning with an overview of how to involve stakeholders in health research (Concannon et al. J Gen Intern Med. 2019;34(3):458-463) and continuing here with an examination of definitions of research engagement. The political and advocacy roots of engaged research are reflected in definitions. Engagement is conceptualized with reference to research project goals, from informing specific clinical decisions to informing health-system level decisions. Political and cultural differences across countries are evident. Some of these government funders focus on empirical rather than ethical rationales. In countries with centralized health technology assessment, the link between societal values and engaged research is explicit. Ethical rationales for engagement are explicit in most of the published literature on research engagement. Harmonization of definitions is recommended so that research engagement elements, methods, and outcomes and impacts can be clearly examined and understood, and so that the field of research engagement can proceed from a clear conceptual foundation. Specific recommendations for terminology definitions are provided. Placing engaged research on a continuum from specific clinical decisions to more global public and social justice concerns clarifies the type of engaged research, supports appropriate comparisons, and improves the rigor of engaged research methods. The results help identify knowledge gaps in this growing field.

Project description:BACKGROUND:Responding to intimate partner violence (IPV) and its consequences is made complex by women's diverse needs, priorities and contexts. Tailored online IPV interventions that account for differences among women have potential to reduce barriers to support and improve key outcomes. METHODS:Double blind randomized controlled trial of 462 Canadian adult women who experienced recent IPV randomly were assigned to receive either a tailored, interactive online safety and health intervention (iCAN Plan 4 Safety) or a static, non-tailored version of this tool. Primary (depressive symptoms, PTSD symptoms) and secondary (helpfulness of safety actions, confidence in safety planning, mastery, social support, experiences of coercive control, and decisional conflict) outcomes were measured at baseline and 3, 6, and 12?months later via online surveys. Generalized Estimating Equations were used to test for differences in outcomes by study arm. Differential effects of the tailored intervention for 4 strata of women were examined using effect sizes. Exit survey process evaluation data were analyzed using descriptive statistics, t-tests and conventional content analysis. RESULTS:Women in both tailored and non-tailored groups improved over time on primary outcomes of depression (p <?.001) and PTSD (p <?.001) and on all secondary outcomes. Changes over time did not differ by study arm. Women in both groups reported high levels of benefit, safety and accessibility of the online interventions, with low risk of harm, although those completing the tailored intervention were more positive about fit and helpfulness. Importantly, the tailored intervention had greater positive effects for 4 groups of women, those: with children under 18 living at home; reporting more severe violence; living in medium-sized and large urban centers; and not living with a partner. CONCLUSION:This trial extends evidence about the effectiveness of online safety and health interventions for women experiencing IPV to Canadian women and provides a contextualized understanding about intervention processes and effects useful for future refinement and scale up. The differential effects of the tailored intervention found for specific subgroups support the importance of attending to diverse contexts and needs. iCAN is a promising intervention that can complement resources available to Canadian women experiencing IPV. TRIAL REGISTRATION:Clinicaltrials.gov ID NCT02258841 (Prospectively Registered on Oct 2, 2014).

Project description:BackgroundViolence against women (VAW) is a major public health problem. Translation of VAW research to policy and practice is an area that remains understudied, but provides the opportunity to examine knowledge translation and exchange (KTE) processes in a complex, multi-stakeholder context. In a series of studies including two randomized trials, the McMaster University VAW Research Program studied one key research gap: evidence about the effectiveness of screening women for exposure to intimate partner violence. This project developed and evaluated KTE strategies to share research findings with policymakers, health and community service providers, and women's advocates.MethodsA longitudinal cross-sectional design, applying concurrent mixed data collection methods (surveys, interviews, and focus groups), was used to evaluate the utility of specific KTE strategies, including a series of workshops and a day-long Family Violence Knowledge Exchange Forum, on research sharing, uptake, and use.ResultsParticipants valued the opportunity to meet with researchers, provide feedback on key messages, and make personal connections with other stakeholders. A number of factors specific to the knowledge itself, stakeholders' contexts, and the nature of the knowledge gap being addressed influenced the uptake, sharing, and use of the research. The types of knowledge use changed across time, and were specifically related to both the types of decisions being made, and to stage of decision making; most reported use was conceptual or symbolic, with few examples of instrumental use. Participants did report actively sharing the research findings with their own networks. Further examination of these second-order knowledge-sharing processes is required, including development of appropriate methods and measures for its assessment. Some participants reported that they would not use the research evidence in their decision making when it contradicted professional experiences, while others used it to support apparently contradictory positions. The online wiki-based 'community of interest' requested by participants was not used.ConclusionsMobilizing knowledge in the area of VAW practice and policy is complex and resource-intensive, and must acknowledge and respect the values of identified knowledge users, while balancing the objectivity of the research and researchers. This paper provides important lessons learned about these processes, including attending to the potential unintended consequences of knowledge sharing.

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Processes for engaging and retaining women who are experiencing adversity in longitudinal health services research.

Publications

Processes for engaging and retaining women who are experiencing adversity in longitudinal health services research.

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