Perspectives of school-work transitions among youth with spina bifida, their parents and health care providers

PURPOSE: Despite an increasing number of individuals with spina bifida reaching reproductive age, there has been a paucity of research into their reproductive health care needs. The objective of this study was to better understand the reproductive health experiences of self-identified women with spina bifida using qualitative methodology. METHODS: A phenomenological study design was used to address this objective. Women with spina bifida identified their interest in participating in a semi-structured interview after completing an online reproductive health survey. Interviews were recorded and transcribed verbatim. Qualitative analysis followed a phenomenological approach using Dedoose software. RESULTS: Twelve self-identified women with spina bifida participated. They described experiences in four domains: sexual education, pregnancy, labor and delivery, and postpartum. In addition, an intersecting domain of social justice and advocacy emerged. Numerous themes are described, including a lack of tailored sexual health information, impact of pregnancy on function, attitudes towards delivery method, and parenting challenges. CONCLUSION: This study explored the continuum of reproductive health experiences of women with spina bifida. They face unique reproductive health challenges that provide an opportunity for health care providers to offer more holistic care.

Download Full-text

Reproductive Health Care for Women with Spina Bifida

The Scientific World JOURNAL ◽

10.1100/tsw.2007.304 ◽

2007 ◽

Vol 7 ◽

pp. 1875-1883 ◽

Cited By ~ 30

Author(s):

Amie B. Jackson ◽

Pamela K. Mott

Keyword(s):

Health Care ◽

Reproductive Health ◽

Spina Bifida ◽

Life Expectancy ◽

Health Care Providers ◽

Evidence Based ◽

Care Providers ◽

Reproductive Systems ◽

Reproductive Health Care ◽

Reproductive Endocrine

Women with spina bifida have unique health care concerns and as the life expectancy of this population increases, they are transitioning from adolescence to womanhood and entering their reproductive years with little information about what to expect. Likewise, their health care providers do not have the benefit of evidence-based research that comprehensively addresses the issues these women may face related to reproduction or aging. Few studies have focused on the effects that spina bifida may have on these women's reproductive systems, nor has attention been paid to the effects that possible reproductive endocrine changes may have on their disability. Needless to say, concerns about sexuality, sexual function, and pregnancy are just as important to these women as they are to their able-bodied counterparts.

Download Full-text

Women’s health guidelines for the care of people with spina bifida

Journal of Pediatric Rehabilitation Medicine ◽

10.3233/prm-200757 ◽

2020 ◽

Vol 13 (4) ◽

pp. 655-662

Author(s):

Anne Berndl ◽

Margaret Nosek ◽

Ashley Waddington

Keyword(s):

Health Care ◽

Spina Bifida ◽

Women’S Health ◽

Women's Health ◽

Health Care Providers ◽

Access To Information ◽

Care Providers ◽

Women And Girls ◽

Key Aspects ◽

Specific Health

Women and girls with spina bifida have specific health care concerns. It is essential that they, and their health care providers have access to information to help them make healthy choices throughout their lifespan. This article aims to address key aspects of health pertinent to girls and women with spina bifida and outlines the SB Women’s Health Guidelines for the Care of People with Spina Bifida. Further research into this area is needed.

Download Full-text

Malpractice & Negligence: Cal. Supreme Court Clarifies Negligence Provisions under State’s Elder Abuse Act

The Journal of Law Medicine & Ethics ◽

10.1017/s1073110500012973 ◽

1999 ◽

Vol 27 (2) ◽

pp. 203-203

Author(s):

Kendra Carlson

Keyword(s):

Health Care ◽

Supreme Court ◽

Health Care Providers ◽

Elder Abuse ◽

Skilled Nursing Facility ◽

Pressure Sores ◽

Care Providers ◽

Nursing Facility ◽

Skilled Nursing ◽

The Supreme Court

The Supreme Court of California held, in Delaney v. Baker, 82 Cal. Rptr. 2d 610 (1999), that the heightened remedies available under the Elder Abuse Act (Act), Cal. Welf. & Inst. Code, §§ 15657,15657.2 (West 1998), apply to health care providers who engage in reckless neglect of an elder adult. The court interpreted two sections of the Act: (1) section 15657, which provides for enhanced remedies for reckless neglect; and (2) section 15657.2, which limits recovery for actions based on “professional negligence.” The court held that reckless neglect is distinct from professional negligence and therefore the restrictions on remedies against health care providers for professional negligence are inapplicable.Kay Delaney sued Meadowood, a skilled nursing facility (SNF), after a resident, her mother, died. Evidence at trial indicated that Rose Wallien, the decedent, was left lying in her own urine and feces for extended periods of time and had stage I11 and IV pressure sores on her ankles, feet, and buttocks at the time of her death.

Download Full-text

Using Technology to Improve Access to Health Care for Culturally and Linguistically Diverse Populations

Perspectives on Communication Disorders and Sciences in Culturally and Linguistically Diverse Populations ◽

10.1044/cds19.3.71 ◽

2012 ◽

Vol 19 (3) ◽

pp. 71-76 ◽

Cited By ~ 1

Author(s):

Pauline A. Mashima

Keyword(s):

Health Care ◽

Health Care Providers ◽

Access To Health Care ◽

Underserved Populations ◽

Linguistically Diverse ◽

Care Providers ◽

Department Of Health ◽

Use Of Technology ◽

Access To Health ◽

Improve Access

Important initiatives in health care include (a) improving access to services for disadvantaged populations, (b) providing equal access for individuals with limited or non-English proficiency, and (c) ensuring cultural competence of health-care providers to facilitate effective services for individuals from diverse racial and ethnic backgrounds (U.S. Department of Health and Human Services, Office of Minority Health, 2001). This article provides a brief overview of the use of technology by speech-language pathologists and audiologists to extend their services to underserved populations who live in remote geographic areas, or when cultural and linguistic differences impact service delivery.

Download Full-text

Interdisciplinary Therapy Assessments for the Older Adult

Perspectives on Gerontology ◽

10.1044/gero17.1.11 ◽

2012 ◽

Vol 17 (1) ◽

pp. 11-16

Author(s):

Lynn Chatfield ◽

Sandra Christos ◽

Michael McGregor

Keyword(s):

Older Adults ◽

Health Care ◽

Standardized Testing ◽

Health Care Providers ◽

Outcome Measurement ◽

Care Providers ◽

Patient Centered ◽

Screening Process ◽

Evidenced Based ◽

Changing Economy

In a changing economy and a changing industry, health care providers need to complete thorough, comprehensive, and efficient assessments that provide both an accurate depiction of the patient's deficits and a blueprint to the path of treatment for older adults. Through standardized testing and observations as well as the goals and evidenced-based treatment plans we have devised, health care providers can maximize outcomes and the functional levels of patients. In this article, we review an interdisciplinary assessment that involves speech-language pathology, occupational therapy, physical therapy, and respiratory therapy to work with older adults in health care settings. Using the approach, we will examine the benefits of collaboration between disciplines, an interdisciplinary screening process, and the importance of sharing information from comprehensive discipline-specific evaluations. We also will discuss the importance of having an understanding of the varied scopes of practice, the utilization of outcome measurement tools, and a patient-centered assessment approach to care.

Download Full-text