Literature DB >> 32429740

Reproductive Health in Women with Physical Disability: A Conceptual Framework for the Development of New Patient-Reported Outcome Measures.

Claire Z Kalpakjian1, Jodi M Kreschmer1, Mary D Slavin2, Pamela A Kisala3, Elisabeth H Quint4, Nancy D Chiaravalloti5, Natalie Jenkins6, Tamara Bushnik6, Dagmar Amtmann7, David S Tulsky3, Roxanne Madrid1, Rebecca Parten1, Michael Evitts1, Carolyn L Grawi8.   

Abstract

Background: Barriers in the built environment, enduring stereotypes and biases, and limited disability competency of health care providers compromise access to and quality of reproductive health care for women with physical disabilities. One way to improve our understanding of critical factors that drive reproductive health inequity and its impact on access to care is to use patient-reported outcome measures (PROMs) that capture relevant and meaningful information about experience. In this study, we developed a conceptual framework as the foundation for relevant and clinically meaningful patient-reported outcome measures targeting the interface of disability and reproductive health. Materials and
Methods: We conducted semistructured focus groups and interviews to assess women's experiences around their reproductive health and contextual factors related to disability. We used deductive and inductive qualitative coding approaches to develop the conceptual framework.
Results: Eighty-one women between the ages of 16 and 50 with a self-reported physical disability, defined by an impairment of mobility, participated in 13 focus groups (N = 64) and 17 individual interviews. Five major themes characterized the conceptual framework that emerged-knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity-all of which had some relationship with five major reproductive health issues-pregnancy and labor/delivery, periods and menstrual management, contraception, sexuality and sexual functioning, and pelvic examinations. Conclusions: This conceptual framework will serve as a foundation for PROM and guide intervention development to reduce reproductive health inequity and improve reproductive health outcomes of women with physical disabilities.

Entities:  

Keywords:  patient-reported outcome measures; physical disability; qualitative research; reproductive health

Mesh:

Year:  2020        PMID: 32429740      PMCID: PMC7703246          DOI: 10.1089/jwh.2019.8174

Source DB:  PubMed          Journal:  J Womens Health (Larchmt)        ISSN: 1540-9996            Impact factor:   2.681


  66 in total

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2.  Physical Accessibility of Routine Prenatal Care for Women with Mobility Disability.

Authors:  Lisa I Iezzoni; Amy J Wint; Suzanne C Smeltzer; Jeffrey L Ecker
Journal:  J Womens Health (Larchmt)       Date:  2015-10-20       Impact factor: 2.681

3.  Does a standard measure of self-reported physical disability correlate with clinician perception of impairment related to cancer screening?

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Journal:  Cancer       Date:  2011-08-23       Impact factor: 6.860

4.  Miscarriage Occurrence and Prevention Efforts by Disability Status and Type in the United States.

Authors:  Mekhala V Dissanayake; Blair G Darney; Aaron B Caughey; Willi Horner-Johnson
Journal:  J Womens Health (Larchmt)       Date:  2019-11-21       Impact factor: 2.681

Review 5.  Measuring patient-centered communication in cancer care: a literature review and the development of a systematic approach.

Authors:  Lauren A McCormack; Katherine Treiman; Douglas Rupert; Pamela Williams-Piehota; Eric Nadler; Neeraj K Arora; William Lawrence; Richard L Street
Journal:  Soc Sci Med       Date:  2011-03-04       Impact factor: 4.634

6.  "Don't Think Paralysis Takes Away Your Womanhood": Sexual Intimacy After Spinal Cord Injury.

Authors:  Heather A Fritz; Heather Dillaway; Cathy L Lysack
Journal:  Am J Occup Ther       Date:  2015 Mar-Apr

Review 7.  Pregnancy in women with physical disabilities.

Authors:  Caroline Signore; Catherine Y Spong; Danuta Krotoski; Nancy L Shinowara; Sean C Blackwell
Journal:  Obstet Gynecol       Date:  2011-04       Impact factor: 7.661

Review 8.  Special issues in contraception: caring for women with disabilities.

Authors:  Clair Kaplan
Journal:  J Midwifery Womens Health       Date:  2006 Nov-Dec       Impact factor: 2.388

9.  "Just relax": physicians' experiences with women who are difficult or impossible to examine gynecologically.

Authors:  Jonathan D Huber; Caroline F Pukall; Stéphanie C Boyer; Elke D Reissing; Susan M Chamberlain
Journal:  J Sex Med       Date:  2008-12-12       Impact factor: 3.802

10.  Overview of the Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system.

Authors:  David S Tulsky; Pamela A Kisala; David Victorson; Denise G Tate; Allen W Heinemann; Susan Charlifue; Steve C Kirshblum; Denise Fyffe; Richard Gershon; Ann M Spungen; Charles H Bombardier; Trevor A Dyson-Hudson; Dagmar Amtmann; Claire Z Kalpakjian; Seung W Choi; Alan M Jette; Martin Forchheimer; David Cella
Journal:  J Spinal Cord Med       Date:  2015-05       Impact factor: 1.985

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  6 in total

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

Authors:  Willi Horner-Johnson; Krystal A Klein; Jan Campbell; Jeanne-Marie Guise
Journal:  Womens Health Issues       Date:  2022-02-09

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

Authors:  Willi Horner-Johnson; Krystal A Klein; Jan Campbell; Jeanne-Marie Guise
Journal:  J Obstet Gynecol Neonatal Nurs       Date:  2021-08-10

3.  Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.

Authors:  Claire Z Kalpakjian; Heidi J Haapala; Susan D Ernst; Brittany R Orians; Melissa L Barber; Ashley L Wiseman; Lukonde Mulenga; Shannen Bolde; Sara Rosenblum; Gina M Jay
Journal:  Disabil Health J       Date:  2020-12-24       Impact factor: 4.615

4.  Perceptions of barriers to effective family planning services among women with disabilities.

Authors:  Jeanne L Alhusen; Tina Bloom; Kathryn Laughon; Lillian Behan; Rosemary B Hughes
Journal:  Disabil Health J       Date:  2020-12-23       Impact factor: 4.615

5.  Development of a Conceptual Framework of Sexual Well-being for Women with Physical Disability.

Authors:  Mara B Nery-Hurwit; Claire Z Kalpakjian; Jodi M Kreschmer; Elisabeth H Quint; Susan Ernst
Journal:  Womens Health Issues       Date:  2022-03-23

6.  Prevalence of Hysterectomy by Self-Reported Disability Among Canadian Women: Findings from a National Cross-Sectional Survey.

Authors:  Natalie V Scime; Hilary K Brown; Amy Metcalfe; Erin A Brennand
Journal:  Womens Health Rep (New Rochelle)       Date:  2021-11-29
  6 in total

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