View Item 

Show simple item record

Development and pilot test of a pregnancy decision making tool for women with physical disabilities
dc.contributor.authorKalpakjian, Claire Z.
dc.contributor.authorHaapala, Heidi J.
dc.contributor.authorErnst, Susan D.
dc.contributor.authorOrians, Brittany R.
dc.contributor.authorBarber, Melissa L.
dc.contributor.authorMulenga, Lukonde
dc.contributor.authorBolde, Shannen
dc.contributor.authorKreschmer, Jodi M.
dc.contributor.authorParten, Rebecca
dc.contributor.authorCarlson, Susan
dc.contributor.authorRosenblum, Sara
dc.contributor.authorJay, Gina M.
dc.date.accessioned2023-02-01T18:59:41Z
dc.date.available2024-03-01 13:59:39en
dc.date.available2023-02-01T18:59:41Z
dc.date.issued2023-02
dc.identifier.citationKalpakjian, Claire Z.; Haapala, Heidi J.; Ernst, Susan D.; Orians, Brittany R.; Barber, Melissa L.; Mulenga, Lukonde; Bolde, Shannen; Kreschmer, Jodi M.; Parten, Rebecca; Carlson, Susan; Rosenblum, Sara; Jay, Gina M. (2023). "Development and pilot test of a pregnancy decision making tool for women with physical disabilities." Health Services Research 58(1): 223-233.
dc.identifier.issn0017-9124
dc.identifier.issn1475-6773
dc.identifier.urihttps://hdl.handle.net/2027.42/175796
dc.description.abstractObjectiveDesign and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy.Data Sources and Study SettingQuantitative surveys and qualitative interviews were collected from participants living in the community.Study DesignClinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development. The tool was pilot tested in a 12-week trial with participants with physical disabilities considering or actively planning a pregnancy. Feasibility outcomes were acceptability, implementation, and demand (collected at end of the trial); preliminary efficacy focused on decisional conflict and readiness (baseline, 6 weeks, and end of trial).Data CollectionSurvey data were collected using an online form. One-on-one interviews were conducted to learn more about experience using the tool.Principal FindingsThirty eight participants with mild, moderate, or severe physical disabilities participated. Feasibility outcomes indicated that the tool provided participants with information, guiding questions, and helped them to consider multiple aspects of the decision about pregnancy. Most participants responded positively to the new decision making tool, finding it easy to use and the information balanced. Feedback highlighted opportunity for improvement, such as more specific information, peer stories, and the limitations of a paper format. There was significant linear effect of time, with increased decisional certainty and readiness, values clarity, and decisional support (partial η2 [90% CI] = 0.310 [0.08, 0.46], 0.435 [0.19, 0.60], 0.134 [0, 0.29], 0.178 [0.01, 0.35], respectively). Decisional certainty and readiness had high observed power (96.7% and 99.3%, respectively) with lower observed power for clarity and support (60.6% and 75.1%, respectively).ConclusionsThe new tool shows promise for supporting women with physical disabilities in navigating pregnancy decision making. Future development of complementary strategies to support health care providers will help improve shared decision making and patient-centered care.
dc.publisherBlackwell Publishing Ltd
dc.publisherWiley Periodicals, Inc.
dc.subject.otherphysical disability
dc.subject.otherdecision making
dc.subject.otherfeasibility studies
dc.subject.otherhealth disparities
dc.subject.otherpregnancy
dc.subject.otherwomen’s health
dc.titleDevelopment and pilot test of a pregnancy decision making tool for women with physical disabilities
dc.typeArticle
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelPublic Health
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttp://deepblue.lib.umich.edu/bitstream/2027.42/175796/1/hesr14103.pdf
dc.description.bitstreamurlhttp://deepblue.lib.umich.edu/bitstream/2027.42/175796/2/hesr14103_am.pdf
dc.identifier.doi10.1111/1475-6773.14103
dc.identifier.sourceHealth Services Research
dc.identifier.citedreferenceSong FW, West JE, Lundy L, Smith DN. Women, pregnancy, and health information online: the making of informed patients and ideal mothers. Gender Soc. 2012; 26 ( 5 ): 773 - 798.
dc.identifier.citedreferencePoprzeczny AJ, Stocking K, Showell M, Duffy JMN. Patient decision aids to facilitate shared decision making in obstetrics and gynecology: a systematic review and meta-analysis. Obstet Gynecol. 2020; 135 ( 2 ): 444 - 451.
dc.identifier.citedreferenceSay R, Robson S, Thomson R. Helping pregnant women make better decisions: a systematic review of the benefits of patient decision aids in obstetrics. BMJ Open. 2011; 1 ( 2 ): e000261.
dc.identifier.citedreferenceStacey D, Légaré F, Boland L, et al. 20th Anniversary Ottawa Decision Support Framework: part 3 overview of systematic reviews and updated framework. Med Decis Making. 2020; 40 ( 3 ): 379 - 398.
dc.identifier.citedreferenceO’Connor AM, Tugwell P, Wells GA, et al. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Patient Educ Couns. 1998; 33: 267 - 279.
dc.identifier.citedreferenceCoulter A, Stilwell D, Kryworuchko J, Mullen PD, Ng CJ, van der Weijden T. A systematic development process for patient decision aids. BMC Med Inform Decis Mak. 2013; 13 ( 2 ): 1 - 7.
dc.identifier.citedreferenceLewis KB, Wood B, Sepucha KR, Thomson RG, Stacey D. Quality of reporting of patient decision aids in recent randomized controlled trials: a descriptive synthesis and comparative analysis. Patient Educ Couns. 2017; 100 ( 7 ): 1387 - 1393.
dc.identifier.citedreferenceJoseph-Williams N, Newcombe R, Politi M, et al. Toward minimum standards for certifying patient decision aids: a modified Delphi consensus process. Med Decis Making. 2014; 34 ( 6 ): 699 - 710.
dc.identifier.citedreferenceDiab ME, Johnston MV. Relationships between level of disability and receipt of preventive health services. Arch Phys Med Rehabil. 2004; 85 ( 5 ): 749 - 757.
dc.identifier.citedreferenceO’Connor A, Jacobsen MJ. Workbook on Developing and Evaluating Patient Decision Aids. The Ottawa Hospital Research Institute; 2003.
dc.identifier.citedreferenceHarris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009; 42 ( 2 ): 377 - 381.
dc.identifier.citedreferenceBowen DJ, Kreuter M, Spring B, et al. How we design feasibility studies. Am J Prev Med. 2009; 36 ( 5 ): 452 - 457.
dc.identifier.citedreferenceO’Connor A, Cranney A. User Manual - Acceptability. 1996. Modified 2002. https://decisionaid.ohri.ca/docs/develop/user_manuals/um_acceptability.pdf
dc.identifier.citedreferenceO’Connor AM. Validation of a decisional conflict scale. Med Decis Making. 1995; 15 ( 1 ): 25 - 30.
dc.identifier.citedreferenceKatapodi MC, Munro ML, Pierce PF, Williams RA. Psychometric testing of the decisional conflict scale: genetic testing hereditary breast and ovarian cancer. Nurs Res. 2011; 60 ( 6 ): 368 - 377.
dc.identifier.citedreferenceO’Connor A. User Manual - Stage of Decision Making. 2000. Modified 2003. https://decisionaid.ohri.ca/eval_stage.html
dc.identifier.citedreferencePrunty MC, Sharpe L, Butow P, Fulcher G. The motherhood choice: a decision aid for women with multiple sclerosis. Patient Educ Couns. 2008; 71 ( 1 ): 108 - 115.
dc.identifier.citedreferenceMeade T, Dowswell E, Manolios N, Sharpe L. The motherhood choices decision aid for women with rheumatoid arthritis increases knowledge and reduces decisional conflict: a randomized controlled trial. BMC Musculoskelet Disord. 2015; 16: 260.
dc.identifier.citedreferenceMcGrath A, Sharpe L, Lah S, Parratt K. Evaluation of a decision aid for women with epilepsy who are considering pregnancy: a randomized controlled trial. Med Decis Making. 2017; 37 ( 5 ): 589 - 599.
dc.identifier.citedreferenceOnken LS, Carroll KM, Shoham V, Cuthbert BN, Riddle M. Reenvisioning clinical science: unifying the discipline to improve the public health. Clin Psychol Sci. 2014; 2 ( 1 ): 22 - 34.
dc.identifier.citedreferenceCzajkowski SM, Powell LH, Adler N, et al. From ideas to efficacy: the ORBIT model for developing behavioral treatments for chronic diseases. Health Psychol. 2015; 34 ( 10 ): 971 - 982.
dc.identifier.citedreferenceVaisson G, Provencher T, Dugas M, et al. User involvement in the design and development of patient decision aids and other personal health tools: a systematic review. Med Decis Making. 2021; 41 ( 3 ): 261 - 274.
dc.identifier.citedreferencePalmer M, Harley D. Models and measurement in disability: an international review. Health Policy Plan. 2012; 27 ( 5 ): 357 - 364.
dc.identifier.citedreferenceO’Connor-Terry C, Harris J. Pregnancy decision-making in women with physical disabilities. Disabil Health J. 2022; 15 ( 1 ): 101176.
dc.identifier.citedreferenceTucker Edmonds B. Shared decision-making and decision support: their role in obstetrics and gynecology. Curr Opin Obstet Gynecol. 2014; 26 ( 6 ): 523 - 530.
dc.identifier.citedreferenceMegregian M, Emeis C, Nieuwenhuijze M. The impact of shared decision-making in perinatal care: a scoping review. J Midwifery Womens Health. 2020; 65 ( 6 ): 777 - 788.
dc.identifier.citedreferenceHorner-Johnson W, Klein KA, Campbell J, Guise JM. Experiences of women with disabilities in accessing and receiving contraceptive care. J Obstet Gynecol Neonatal Nurs. 2021; 50 ( 6 ): 732 - 741.
dc.identifier.citedreferenceWu JP, Damschroder LJ, Fetters MD, et al. A web-based decision tool to improve contraceptive counseling for women with chronic medical conditions: protocol for a mixed methods implementation study. JMIR Res Protoc. 2018; 7 ( 4 ): e107.
dc.identifier.citedreferenceHorner-Johnson W, Dissanayake M, Wu JP, Caughey AB, Darney BG. Pregnancy intendedness by maternal disability status and type in the United States. Perspect Sex Reprod Health. 2020; 52 ( 1 ): 31 - 38.
dc.identifier.citedreferenceSyrowatka A, Krömker D, Meguerditchian AN, Tamblyn R. Features of computer-based decision aids: systematic review, thematic synthesis, and meta-analyses. J Med Internet Res. 2016; 18 ( 1 ): e20.
dc.identifier.citedreferenceLopez-Olivo MA, Suarez-Almazor ME. Digital patient education and decision aids. Rheum Dis Clin North Am. 2019; 45 ( 2 ): 245 - 256.
dc.identifier.citedreferenceHoffman AS, Volk RJ, Saarimaki A, et al. Delivering patient decision aids on the Internet: definitions, theories, current evidence, and emerging research areas. BMC Med Inform Decis Mak. 2013; 13 ( 2 ): 1 - 12.
dc.identifier.citedreferencePeterson-Besse JJ, Knoll JE, Horner-Johnson W. Internet networks as a source of social support for women with mobility disabilities during pregnancy. Disabil Health J. 2019; 12: 722 - 726.
dc.identifier.citedreferenceHerrmann A, Hall A, Zdenkowski N, Sanson-Fisher R. Heading in a new direction? Recommendations for future research on patient decision aids. Patient Educ Couns. 2019; 102 ( 5 ): 1029 - 1034.
dc.identifier.citedreferenceIezzoni L, Mitra M. Transcending the counter-normative: sexual and reproductive health and persons with disability. Disabil Health J. 2017; 10 ( 3 ): 369 - 370.
dc.identifier.citedreferenceLaPierre TA, Zimmerman MK, Hall JP. “ Paying the price to get there”: motherhood and the dynamics of pregnancy deliberations among women with disabilities. Disabil Health J. 2017; 10 ( 3 ): 419 - 425.
dc.identifier.citedreferenceShandra CL, Hogan DP, Short SE. Planning for motherhood: fertility attitudes, desires and intentions among women with disabilities. Perspect Sex Reprod Health. 2014; 46 ( 4 ): 203 - 210.
dc.identifier.citedreferenceIezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. Prevalence of current pregnancy among US women with and without chronic physical disabilities. Med Care. 2013; 51 ( 6 ): 555 - 562.
dc.identifier.citedreferenceHorner-Johnson W, Kulkarni-Rajasekhara S, Darney BG, Dissanayake M, Caughey AB. Live birth, miscarriage, and abortion among U.S. women with and without disabilities. Disabil Health J. 2017; 10 ( 3 ): 382 - 386.
dc.identifier.citedreferenceDetmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication - A randomized controlled trial. JAMA. 2002; 288 ( 23 ): 3027 - 3034.
dc.identifier.citedreferenceHorner-Johnson W, Akobirshoev I, Amutah-Onukagha NN, Slaughter-Acey JC, Mitra M. Preconception health risks among U.S. women: disparities at the intersection of disability and race or ethnicity. Womens Health Issues. 2021; 31 ( 1 ): 65 - 74.
dc.identifier.citedreferenceDeierlein AL, Litvak J, Stein CR. Preconception health and disability status among women of reproductive age participating in the National Health and Nutrition Examination Surveys, 2013-2018. J Womens Health (2002). 2002; 31 ( 9 ): 1320 - 1333.
dc.identifier.citedreferenceIezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. Health risk factors and mental health among US women with and without chronic physical disabilities by whether women are currently pregnant. Matern Child Health J. 2015; 19 ( 6 ): 1364 - 1375.
dc.identifier.citedreferenceMitra M, Lu E, Diop H. Smoking among pregnant women with disabilities. Womens Health Issues. 2012; 22 ( 2 ): e233 - e239.
dc.identifier.citedreferenceMitra M, Clements KM, Zhang J, Smith LD. Disparities in adverse preconception risk factors between women with and without disabilities. Matern Child Health J. 2016; 20 ( 3 ): 507 - 515.
dc.identifier.citedreferenceMitra M, Akobirshoev I, Moring NS, et al. Access to and satisfaction with prenatal care among pregnant women with physical disabilities: findings from a national survey. J Womens Health (2002). 2017; 26 ( 12 ): 1356 - 1363.
dc.identifier.citedreferenceNoh JW, Kwon YD, Park J, Oh IH, Kim J. Relationship between physical disability and depression by gender: a panel regression model. PLoS One. 2016; 11 ( 11 ): e0166238.
dc.identifier.citedreferenceSkowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Aust N Z J Obstet Gynaecol. 2008; 48 ( 5 ): 485 - 491.
dc.identifier.citedreferenceBaker ER, Cardenas DD, Benedetti TJ. Risks associated with pregnancy in spinal cord-injured women. Obstet Gynecol. 1992; 80 ( 3 Pt 1 ): 425 - 428.
dc.identifier.citedreferenceJackson AB, Wadley V. A multicenter study of women’s self-reported reproductive health after spinal cord injury. Arch Phys Med Rehabil. 1999; 80 ( 11 ): 1420 - 1428.
dc.identifier.citedreferenceArata M, Grover S, Dunne K, Bryan D. Pregnancy outcome and complications in women with spina bifida. J Reprod Med. 2000; 45 ( 9 ): 743 - 748.
dc.identifier.citedreferenceChen JS, Ford JB, Roberts CL, Simpson JM, March LM. Pregnancy outcomes in women with juvenile idiopathic arthritis: a population-based study. Rheumatology (Oxford). 2013; 52 ( 6 ): 1119 - 1125.
dc.identifier.citedreferenceSkomsvoll JF, Ostensen M, Irgens LM, Baste V. Obstetrical and neonatal outcome in pregnant patients with rheumatic disease. Scand J Rheumatol Suppl. 1998; 107: 109 - 112.
dc.identifier.citedreferenceReed SD, Vollan TA, Svec MA. Pregnancy outcomes in women with rheumatoid arthritis in Washington State. Matern Child Health J. 2006; 10 ( 4 ): 361 - 366.
dc.identifier.citedreferenceWinch R, Bengtson L, McLaughlin J, Fitzsimmons J, Budden S. Women with cerebral palsy: obstetric experience and neonatal outcome. Dev Med Child Neurol. 1993; 35 ( 11 ): 974 - 982.
dc.identifier.citedreferenceBarry MJ, Edgman-Levitan S. Shared decision making--pinnacle of patient-centered care. N Engl J Med. 2012; 366 ( 9 ): 780 - 781.
dc.identifier.citedreferenceKalpakjian CZ, Haapala HJ, Ernst SD, et al. Development of a new pregnancy informational and decisional needs survey for women with physical disabilities. Disabil Health J. 2021; 14 ( 3 ): 101056.
dc.identifier.citedreferenceKalpakjian CZ, Kreschmer JM, Slavin MD, et al. Reproductive health in women with physical disability: a conceptual framework for the development of new patient-reported outcome measures. J Womens Health (2002). 2020; 29 ( 11 ): 1427 - 1436.
dc.identifier.citedreferenceWalsh-Gallagher D, Mc Conkey R, Sinclair M, Clarke R. Normalising birth for women with a disability: the challenges facing practitioners. Midwifery. 2013; 29 ( 4 ): 294 - 299.
dc.identifier.citedreferenceKönig-Bachmann M, Zenzmaier C, Schildberger B. Health professionals’ views on maternity care for women with physical disabilities: a qualitative study. BMC Health Serv Res. 2019; 19 ( 1 ): 551.
dc.identifier.citedreferenceIezzoni L, Wint AJ, Smeltzer SC, Ecker JL. “ How did that happen?” Public responses to women with mobility disability during pregnancy. Disabil Health J. 2015; 8 ( 3 ): 380 - 387.
dc.identifier.citedreferenceO’Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003; 1 - 287.
dc.identifier.citedreferenceStacey D, Legare F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017; 4: CD001431.
dc.identifier.citedreferenceYen RW, Smith J, Engel J, et al. A systematic review and meta-analysis of patient decision aids for socially disadvantaged populations: update from the International Patient Decision Aid Standards (IDPAS). Med Decis Making. 2021; 41 ( 7 ): 870 - 896.
dc.identifier.citedreferenceDurand MA, Carpenter L, Dolan H, et al. Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS One. 2014; 9 ( 4 ): e94670.
dc.identifier.citedreferenceDugas M, Shorten A, Dube E, Wassef M, Bujold E, Chaillet N. Decision aid tools to support women’s decision making in pregnancy and birth: a systematic review and meta-analysis. Soc Sci Med (1982). 2012; 74 ( 12 ): 1968 - 1978.
dc.identifier.citedreferenceKennedy K, Adelson P, Fleet J, et al. Shared decision aids in pregnancy care: a scoping review. Midwifery. 2020; 81: 102589.
dc.identifier.citedreferenceVlemmix F, Warendorf JK, Rosman AN, et al. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG. 2013; 120 ( 3 ): 257 - 266.
dc.working.doiNOen
dc.owningcollnameInterdisciplinary and Peer-Reviewed


Files in this item

Name:
hesr14103.pdf
Size:
1.182MB
Format:
PDF
View/Open
Name:
hesr14103_am.pdf
Size:
443.0KB
Format:
PDF
View/Open

Show simple item record

Remediation of Harmful Language

The University of Michigan Library aims to describe library materials in a way that respects the people and communities who create, use, and are represented in our collections. Report harmful or offensive language in catalog records, finding aids, or elsewhere in our collections anonymously through our metadata feedback form. More information at Remediation of Harmful Language.

Accessibility

If you are unable to use this file in its current format, please select the Contact Us link and we can modify it to make it more accessible to you.