Executive Summary: Women’s Resource Questionnaire

Women Without Limits, the Women’s Advisory Committee to United Spinal Association, constructed a questionnaire on the experience of women with SCI/D in accessing important healthcare and wellness resources. The survey was made available nationally to women members of United Spinal (USM) in the spring of 2006. In the fall of 2006 the survey was opened to a national audience of non-member women with SCI/D. The Women Without Limits (WWL) is pleased to provide this summary of the findings for each survey group. Upon analysis of the information, WWL developed a list of recommendations to United Spinal toward improving the lives of women with SCI/D based on their responses as to need for and barriers in accessing important healthcare and wellness resources.

Summary-United Spinal Member (USM) Respondents

Of the information provided by the respondents, major findings include:

1. The respondent sample was well educated, married, had 1 or more children, were between the ages of 45-60, with about half identifying themselves as having MS and half distributed across SCI/D.
2. A large number of women with SCI/D report access barrier related to accessing the exam table/chair for PAP smears and pelvic examinations.
3. Women are generally receiving regular health care services with the exception of osteoporosis examinations.
4. Approximately one fifth of the respondents reported having experienced neglect of health care and being denied use of their mobility aid.
5. Overall, women find their physicians, nurses, allied health professionals and mental health professionals as useful resources for a variety of health and mental related issues.
6. A majority of the women report difficulty accessing information and resources related to sexual functioning.
7. A majority has used mental health and family/friends for information and assistance with depression, suicidal thoughts, posttraumatic stress disorder and anxiety. A majority has also used their PCP for information and assistance with abuse, neglect, anxiety, and rape.
8. Decreased libido/arousal and feeling unattractive / undesirable were interfering to sexual functioning.
9. During pregnancy, women would have liked to have information and resources on urinary tract infection and bladder management.
10. As to useful resources for parenting, a high number of women indicated that they would have liked household assistance and home accessibility options.
11. Women are turning to disability magazines and websites for information on fashion and grooming, as well as catalogs and family/friends. They are not finding retail stores and cosmetic vendors as good resources in this area.
12. Over one third of the women report problems accessing information related to knowing disability advocacy organizations, finding the best magazines for information, finding health care professionals knowledgeable about SCI/D, finding someone to talk to or ask questions, knowing other women with SCI/D and finding that SCI/D information is oriented to men.

Summary-National Survey (NS) Respondents

1. The respondents are well educated, married, with 1 or more children, half the sample reported being unemployed and one third reported being employed full time. About one third of the respondents identify themselves as paraplegic with a little over one fourth identifying themselves as tetraplegic and one fourth as having MS. The age group distribution is between 26-55 years of age.
2. An alarming number of women report having experienced neglect of health care needs (33%), domestic violence (16%) and denial of access to mobility aid (23%).
3. Despite advances under ADA, women with SCI/D continue to find barriers to access to vital health care needs such as Pap smear/pelvic exam table, maneuverability of a dental exam room and dental chair. They continue to note difficulty-accessing entrances to various health and wellness centers as well.
4. While the vast majority reports that their physician discussed the importance of Pap smear and pelvic exams, only 55% had a Pap smear and pelvic exam in the past year.
5. The respondents report difficulty identifying important information about SCI/D, knowing other women with SCI/D and finding health care providers knowledgeable about SCI/D.
6. The respondents wish they had information regarding assistive technology in the home.
7. The respondents have used mental health providers and PCP’s in managing mental health issues

Recommendations to United Spinal Association

Based on the data presented, the Women’s Advisory Committee forwarded the following recommendations:

1. Partner with vendors of accessible exam tables and chairs toward developing and disseminating information to physicians, dentists, optometrists and ophthalmologists as to obtaining accessible exam tables and chairs. Provide information about tax benefits to purchasing accessible exam tables and chairs.
2. Create a link on the United Spinal website for women to post the names of accessible health care and fitness centers, physicians, dentists, optometrists, ophthalmologists and facilities with accessible exam tables and chairs. Important to add language differentiating posting from an endorsement.
3. Provide federal agencies with the survey information regarding difficulty in finding physicians, dentists, optometrists and ophthalmologists with accessing exam tables and chairs.
4. Identify published videos or print materials educating or training physicians, dentists, optometrists, ophthalmologists and their staff in learning to assist women with SCI/D in transferring to examination tables and chairs. Post information on the United Spinal web page on how to access the video and print information. Develop a flyer informing medical professionals about the resources posted and available on the United Spinal web page. Publish the flyer in Action magazine and create a downloaded version on the United Spinal web page.
5. Recommend that United Spinal and the WWL committee partner with the American Paraplegia Society (APS), American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW) and American Spinal Cord Injury Nurses (ASCIN) to identify or develop material regarding sexual functioning for women with SCI/D and post the materials and resources on United Spinal web page. Develop and post on the United Spinal web page links to information regarding sexual functioning for women with SCI/D.
6. Publish the findings of the survey in United Spinal’s consumer journal, Action.
7. Provide the findings of the survey to APS, AASCIPSW and ASCIN for further review, comment and recommendations.
8. Provide the survey summary to agencies and groups who posted the survey link and assisted in obtaining responses from a national non-member population of women with SCI/D. Encourage the agencies and groups to post and disseminate the survey findings and recommendations.
9. Partner with nationally recognized advocates for women survivors of domestic abuse toward raising awareness of abuse and neglect issues common to women with SCI/D and working to increase accessibility of women’s shelters for women with SCI/D seeking shelter.

The section below provides demographic information about the 2 survey populations and a comparison about their responses on questions in specific categories.

Who Completed the Questionnaire?

177 United Spinal Association women members completed the survey: 313 women completed the national survey (NS) with 243 respondents to the NS women completing the demographic information. There may be respondent overlap between the two surveys as 16% of the NS respondents indicated that they were members of United Spinal Association. However, the survey included a request that respondents who had previously submitted responses to the United Spinal member survey decline from completing the national survey.

The following section provides greater detail about the responses provided in both surveys.

Information and Access to Important Health Care Needs

• The NS groups stated that their physician had discussed the importance of regular exercise (66%), Pap smear/pelvic examination (73%) and Mammogram/breast examination (66%) but not osteoporosis examination (39%), eye examination (33%) or dental examination (31%). Within the past year, 60% had a dental exam, while fewer completed a Mammogram/breast examination (39%), and eye examination (41%). 51% stated that they had never had an osteoporosis examination.
• The USM respondents stated that their physician discussed the important of regular exercise, PAP smears, pelvic examination, mammograms and breast examination (about 75%). However, only about half of the physicians also discussed the importance of eye examinations and osteoporosis examinations but not dental examinations. Within the last year, most of the USM group (about 60%) stated that they had received an eye examination, dental examination, PAP smear, pelvic examination and mammogram and/or breast examination. Almost half (46%) indicated that they had never ha an osteoporosis examination.

Accessibility to Health Care

• NS Group: 45% reported a physical barrier to accessing the exam table for a Pap smear/pelvic examination while 44% and 42% reported no barrier to accessing eye exams and dental exams, respectively. It is interesting that 11% reported difficulty accessing the entrance to dental exams and fitness centers. 24% reported difficulty with maneuverability of exam room for a dental examination and 26% reported difficulty accessing the dental exam chair.
• USM Group: 42% of the respondents reported a barrier to access to the exam table/chair for PAP smear and pelvic exams. 23% similarly reported a barrier related to maneuverability of exam room for dental exams. 13% reported difficulty-accessing entrance for a dental exam and 8% noted barriers to accessing the entrance of fitness centers.

Resource Identification

• NS group: The majority looked to mental health professionals for assistance in obtaining information about abuse, neglect, posttraumatic stress disorder and suicidal thoughts. They were as likely to ask their physician about depression as they were to consult with a mental health professional while 56% stated they had accessed the primary care physician for information related to anxiety. 46% (10 respondents) looked to a mental health professional for assistance with rape information. Collectively, the group identified mental health professionals and primary care physicians as being their most utilized source of information related to abuse, neglect, depression, PTSD, anxiety, rape and suicidal thoughts. The NS groups also stated that they had sought information and assistance from family and friends around issues of depression (68%), anxiety (62%), suicidal thoughts (53%), neglect (44%), and PTSD (45%). However, the majority reported that they had not needed information or assistance related to abuse (83%), neglect (82%), PTSD (75%), anxiety (57%), rape (90%), and suicidal thoughts (80%).
• The USM group looked to their primary care physician (PCP) for information on abuse, neglect, anxiety and rape. The looked to mental health professionals for resources related to depression, post traumatic stress disorder and suicidal thoughts. They tend to look to family and friends for information related to abuse, depression, anxiety and suicidal thoughts. However, over 80% stated that they had not needed resources related to abuse, neglect, posttraumatic stress disorder, rape or suicidal thoughts. 51% reported not needing resources related to depression and 61% stated they had not needed resources related to anxiety.
• 97% of the NS group identified their PCP as a resource of useful and accurate information related to wellness and health followed by Physical Medicine and Rehabilitation Physicians (95%), allied health professionals (95), Internet (91%), nurses/advanced practice nurses (90%) and magazines/newspapers (90%). They identified PCP’s and mental health professionals as useful sources of information on issues of abuse at 57% and 62% respectively.
• 100% of the USM respondents identified rehabilitation facilities as providing useful and accurate information on wellness and health followed by physical medicine and rehabilitation physicians (99%), allied health professionals (OT, PT, i.e.) (98%), library (98%), Internet (96%) and nurses/advanced practice nurses (95%). 88% identified mental health professionals to be useful and accurate resources for mental health issues and abuse and neglect (87%). 64% also identified nurses/advanced practice nurses as useful and accurate sources of information on abuse and neglect followed by PCP’s (52%).

Difficult Resources to Find

• Among the NS group, 31% stated that information about sexual functioning very difficult to find. The majority of respondents listed no other areas as very difficult. However, information on bowel and bladder management (27%), alternative medicine (29%) and weight control (31%) were identified as challenging to find.
• The NS group reported always struggling with knowing disability advocacy organizations (14%), finding health care providers knowledgeable in these areas (24%) and knowing other women with SCI/D (23%). They often found difficulty accessing: health care provider knowledge in these areas (32%), knowing other women with SCI/D (28%), SCI/D information usually oriented.
• Among the USM group 52%, stated that information and resources on sexual functioning was challenging to very difficult to find. 40% of the USM group stated that weight control resources were challenging to very difficulty to find.
• Approximately 32-38% of the USM groups stated that it was challenging to very difficult to find information and resources related to mammograms, menopause, osteoporosis, bowel and bladder management, alternative medicine, wellness and exercise and preventative general health.
• 42% of the USM group stated that they often to always had encountered problems accessing healthcare provider knowledgeable in the areas identified; 39% stated that they often to always encountered problems in accessing someone to talk to or ask information, knowing other women with SCI/SCD, and finding best magazines for information. 38% stated that they often to always had difficulty accessing information of knowing disability advocacy organization.

Trauma

• Of the NS group, 33% reported having experience neglect of health care needs, (20%) threats of physical injury and (23%) denying of mobility aid use since their SCI/D.
• 21% of the USM group reported that they had experienced the trauma of denying mobility aide use; 22% reported neglect of health care needs. The majority reported that they had never experienced domestic violence (91%), rape (97%), threats of physical injury (88%), neglect of health care needs (78%), assault (94%) and denying mobility aid use (79%).

Sexuality

• Among the NS group, 31% reported always having difficulty with decreased arousal/libido since their SCI/D and feeling unattractive/undesirable (25%). During pregnancy, 52% would have liked to have information about bladder management problems, 41% would have liked information about urinary tract infection and 39% would have liked information related to excessive weight gain. Among the NS group, 31% reported always having difficulty with decreased arousal/libido since their SCI/D and feeling unattractive/undesirable (25%). During pregnancy, 52% would have liked to have information about bladder management problems, 41% would have liked information about urinary tract infection and 39% would have liked information related to excessive weight gain.
• Of all the areas, 54% of the USM group reported decreased arousal/libido as interfering with sexual functioning; 51% reported that feeling unattractive/undesirable interfered with sexual functioning. With pregnancy, 53% reported that they would have liked to have information about bladder management problems and urinary tract infection (47%).

Parenting

• Among the NS group, they would have liked resources about or found useful the following: 47% assistive technology options in the home, 46% household assistance, 41% home accessibility options. Those indicating not needing breast feeding information/assistance (80%, nanny/au pair assistance 79%, behavior modification training 73%, good working relationships with pediatrician 72%, adoption options 84% and personal care assistance management 60%.
• The NS group 66% report that OB/GYN’s are useful and accurate resources for reproductive health followed by the Internet (54%), library (38%) and family/friends (32%) compared to PCP’s (25%), nurses/advanced practice nurses (26%) and physical medicine and rehabilitation physicians (20%).
• Among the USM group, 42% would have liked to have had household assistance. 40% would have liked home accessibility options. Most, > 50%, indicated that they had not needed breast feeding information/assistance, nanny/au pair assistance, behavior modification training, personal care assistance management, good working relationship with pediatrician or adoption options.
• As useful and accurate providers of information, the USM respondents identified OB/GYN’s (65%), PCP (52%), PM&R doctors and advanced practice nurses (48%).

Fashion/Grooming

• The NS group found friends/family (65%) and catalogs (54%) as resources for fashion and grooming. Cosmetic vendors (72%), TV/radio (78%) and fashion magazines (72%) were not good resources for women with SCI/D.

• The USM respondents identified resources for fashion and grooming as friends/family (65%), catalogs (64%), disability websites (59%) and disability magazines (57%). Retail stores were not seen as good resources by 61%. Likewise, 80% indicated that cosmetics vendors were not good resources.< .ul>

Acknowledgments

United Spinal Association and WomenWithout Limits would like to thank and acknowledge the following organizations for their support and assistance with the survey in the dissemination of the survey:

MobileWomen.org
Christopher & Dana Reeve Paralysis Foundation (CDRPF)
Independence Care Systems (ICS)
American Association on People with Disabilities (AAPD)
Office on Women’s Health/ U.S. Department of Health & Human Services
The Miami Project
Carecure.org
National Council on Independent Living
Craig Hospital

Women Without Limits Committee Members, past and present, involved in the development / formulation of this survey:
Wendy Crawford (Chair)
John Del Colle
Melita Dolan
Kathleen Dunn, RN
Melissa Holley
Amy Jackson, MD
Devera Lynn
Joan McMahon, RN
Marlene Perkins
Terrie Price, PhD
Ronnie Raymond