Excerpt from Krotoski,
D., Nosek, M.A., Turk, M.A. (Eds.) (1996). Women
with physical disabilities: Achieving and maintaining health and well being.
Recommendations from the conference
"The
Health of Women with Physical Disabilities: Setting a Research Agenda for the
90's,"
National Institutes of
Health
“Conclusions”
1. Promote
new definitions.
2. Create
opportunities for large-scale, longitudinal studies.
3. Need more
interagency collaboration.
4. Employ a
range of research methodologies.
5. Use more
rigorous sampling strategies.
6. Need
more multi-site studies.
7. Increase
the use of control or comparison samples.
8. Advance
the technique of investigating outcomes.
9. The
domains of intervention strategies and outcome measures must be expanded beyond
traditional biomedical evaluation.
10. Expand
the knowledge base of health professionals regarding issues of women with disabilities
11. Reproductive
health care, fitness training, and stress management should be available to
women with disabilities.
12. We must
develop new models of service delivery that will be better equipped to meet the
health care needs of women with physical disabilities.
13. All
health professionals, not only physicians, should have issues of women with
disabilities addressed in their curricula.
14. We must
launch a powerful campaign to convince health care policy makers that women
with disabilities have important but neglected health care needs.
15. Initiate
new and creative methods for bringing technology of all types within the reach
of women with disabilities.
16. Until we
achieve a more computer literate society, we should continue to expand efforts
to disseminate information via a multitude of avenues.
17. Dissemination
efforts should focus on medical professionals policy makers, educators, and
women with disabilities, their friends, families, and acquaintances.
18. Incorporate
disability information in primary and secondary school health curricula.
19. Public
health educators and funding agencies should put a priority on educating the
general public and consumers with disabilities about way to obtain current
medical information related to disability.
20. Create
networks of information sharing about the health of women with disabilities
21. Support
the principals of participatory action research.
22. Increase
the number of women with disabilities who are trained as researchers and
clinical practitioners.
a. Urge
vocational rehabilitation counselors to encourage gifted female students with
disabilities to pursue careers in the sciences.
b. Create
scholarship incentives for pursuing such studies.
c.
Offer sponsorship for participation in scientific meetings and
conferences, including coverage of disability-related expenses.
d. Create a
comprehensive list of women with disabilities trained in research and medical
practice.
e.
Circulate such a list among public and private research funding
agencies and encouraging them to recruit women with disabilities to serve on
grant review panels.
f.
Urge placement agencies for positions in medical administration
to pursue qualified women with disabilities for such positions.
A broad range of issues of concern to women
with physical disabilities is presented in the preceding chapters. Although the focus is on four general topics,
sexuality, bowel and bladder management, stress, and physical fitness, the
information transmitted can have a far reaching impact on every aspect of
living for women, their families, and the health care professionals who serve
them. We would like to conclude by
touching on some overarching themes identified by the participants in the
conference that generated this volume and by offering some observations about
directions we would like to see taken with this information and the future
studies it might inspire. We address
issues in research methodology, clinical practice, dissemination of new
information, and the participation of women with disabilities in the research
process.
We are witnessing a
paradigm shift along many dimensions in how society regards women with
disabilities. Although the image of
people with disabilities in general has made a quantum leap since the
post-World War II era, as seen in recent media portrayals and the passage of
strong civil rights legislation, the image of women with disabilities has begun
to emerge from the asexual stereotype only in the late 1990s. With the increased interest in women's health
and rise of women in research and health care professions and policy-making
positions, we see a shedding of old paradigms for the role of women in society
and a gradual abandonment of standards and definitions developed for men. There is a new understanding of wellness and
sexuality for women in general, and, as expressed in this volume, the door has
cracked open to include women with disabilities. We
need to promote actively the new definition of wellness and fitness in the
context of disability, a new definition of sexuality that includes
psychological and social as well as physical aspects, and a new definition of
functioning that addresses the ability to fill social roles and deal with the
stress that accompanies living with disability.
In response to these new definitions, we need new methods and tools
for measuring these constructs and clinical practices for implementing
them.
The literature to date consists mostly of
small-scale studies that are largely anecdotal in nature. In order to understand better the life
experiences of women with disabilities and to develop interventions that will
meet their real needs, large‑scale epidemiological studies need to be
conducted. These studies should offer a
clearer picture of the incidence of secondary conditions and other problems
related to disability and should enable the examination of risk factors. In connection with studying the status of
women with disabilities in general, we must also look at strategies for
preventing secondary conditions and interventions for resolving existing health
conditions and psychosocial problems.
Longitudinal studies will add considerable depth of knowledge to the
field, but they require extensive resources and collaboration to be
successfully implemented.
A number of research
methodologies should be used in research on women with disabilities. One such approach is the use of
population-based studies, that is, studies that sample a broad representation
of individuals. Instead of looking only
at populations of women with disabilities, we must look at women with
disabilities within the context of the population of women in general. This approach will strengthen our efforts to
apply the same standards and definitions to women with disabilities as we do to
all women. It will enable us to obtain
better statistics on the incidence and prevalence of certain conditions
compared to women in general. An example
of a collaborative effort on such types of studies is the supplement given by
the NIH National Center for Medical Rehabilitation Research to a national
multi-center study of the menopause transition sponsored by the NIH Office of
Research on Women's Health, National Institute on Aging, and the National
Institute of Nursing Research. This
supplement will enable the women with disabilities enrolled in the study to be
identified based on functional limitations.
Little is known about menopause in women with disabilities. Participation in this study will provide
information on the natural history of this process within the context of
disability. In addition, by being part
of a large study, the data obtained should point to potential risk factors and
consequences that may be disproportionately experienced by women with
disabilities.
The techniques of
qualitative research are also important tools for examining complex phenomena
related to the experiences of women with disabilities. In addition to providing valuable insights
into these phenomena, the results of qualitative research can also be used as
grounding for larger-scale quantitative investigations. Topics such as abuse and reactions to stress
would be better served by looking at the interrelationship of factors in
women's lives as expressed by the women themselves, not by looking only at
numbers. Although a hallmark of good
research is focus, efforts must also be taken to draw together information from
the perspective of basic, biomedical, psychosocial, and behavioral science to
construct a more holistic understanding of the experiences of women with
disabilities. Much attention has been
paid to the effect of the environment, including adaptive equipment, on the
physical and social functioning of people with disabilities, especially by the
World Health Organization in their efforts to distinguish impairment from
disability from handicap. We still have
quite a distance to go in operationalizing environmental variables and
including them in medical and behavioral studies.
An issue of
fundamental importance in research methodology is sampling. The selection of women to participate in
studies determines and limits the applicability of the results of the research. Certain sampling techniques, such as
consecutive admissions to hospitals, clinics, or educational programs;
solicited volunteers; or recruitment through residential programs or consumer
organizations; all pose serious limitations on the generalizability of
findings. While population-based
sampling is not always feasible, researchers must, to the greatest extent
possible, construct samples that are maximally representative of the population
in question. When only restricted
samples are available, documentation must state clearly the limitations in
interpreting the results. The literature
contains many excellent examples of research on people with certain types of
disabilities. We encourage the expansion
of types of disabilities examined and a focus of attention on segments of the
population of women with disabilities who have not often been the subject of
research. We encourage efforts similar
to those that resulted in the conference that generated this book to address
the health needs of women with disabilities other than physical disabilities. The extraordinary barriers faced by women
with sensory or mental impairments as they attempt to gain access to health
information and health care systems also have not received the attention they
deserve.
Because of the low
incidence of certain disabilities among women, such as spinal cord injury and
neuromuscular disorders, collaboration among researchers in multi-center
studies are necessary to achieve adequate sample sizes. We must also take extra steps to include
women in research studies who may be harder to identify, such as women with
very rare disabilities and women with combinations of disabilities. In constructing samples, we must bring to a
halt the traditional exclusion of institutionalized women, that is, women who
reside in skilled nursing facilities, developmental centers, or in other
publicly or privately funded congregate living arrangements. Women occupy a majority of the beds in
skilled nursing facilities. Many of these
women are not elderly and are placed in these facilities for a variety of reasons,
including lack of environmental accessibility and personal assistance
resources. We must be mindful of
exclusion criteria that are based on convenience for the researchers and not on
scientific integrity. The federal
government has recognized the design inadequacy of studies conducted only on
men and samples that do not include members of racial or ethnic
minorities. The U.S. Public Health
Service, which includes the National Institutes of Health and the Centers for
Disease Control and Prevention, now requires that all studies using human
subject clearly describe the efforts that will be undertaken to ensure
inclusion of women and minorities. These
plans are reviewed by initial review groups, National Advisory Councils, and
federal program administrators, and must be found adequate before funding can
take place.
The use of control or
comparison samples needs to be expanded and refined in the study of women with
disabilities. This is not a simple
task. On the one hand, we must hold women
with disabilities to the same standard as all women but, on the other hand, we
must be sure that we are making fair comparisons. An NIH-funded national survey of women with
physical disabilities (Nosek, Rintala, Young, Howland, Foley, Rossi, &
Chanpong, 1995) constructed a comparison sample by asking every participant to
recruit an able-bodied female friend to complete the survey as well. This technique allowed the comparison of
women from similar geographic and socioeconomic backgrounds on a variety of
psychological, behavioral, developmental, and interpersonal relationship
variables, but had certain limitations when differences in demographic
variables were studied. Many other
techniques exist for constructing valid control or comparison samples. Researchers are encouraged to explore all
available and feasible options for including this in their research
designs.
In studying the effect
of interventions, it is important to include non-treatment control groups. As obvious as this precaution seems, it is
too often overlooked in rehabilitation research. Because disability is such a diverse
phenomenon, with widely varying types of disabilities, ages at onset,
prognoses, and levels of functional limitation, it is essential that samples be
as homogenous as possible and that comparisons be made on groups of similar
disability characteristics appropriate to the topic.
In order to achieve a higher level of excellence in the study of women
with disabilities, it is important that we advance the technique of
investigating outcomes. Many current
interventions in the field of medical rehabilitation have resulted not from a
research and development base, but rather from service provision. This is particularly true for women with
disabilities, as discussed in earlier chapters.
Thus, there is a need to develop a strong research base on which to
identify treatment interventions.
Further, in the field of disability there are few adequate measures for
determining the effectiveness of interventions that are currently being
used. There is a need for valid,
reliable, and sensitive measures for comparing the effectiveness of
interventions, systems of care, methods of financing, and consumer satisfaction
and preferences (Fuhrer, 1995). Finally,
outcomes have to be redefined to reflect the expectations of persons with
disabilities. To date, outcomes have
been measured according to standards that reflect traditional definitions and
paradigms. For example, the vocational
rehabilitation closure category of homemaker has always been acceptable for
women with disabilities; indeed, it was sometimes more common than closure in
salaried employment. This does not
reflect the increasing numbers of women with disabilities in post-secondary
education or the increasing percentage of women in the labor force. New efforts must be undertaken to ensure that
outcome assessment keeps pace with the new definitions and paradigms that we
are promoting.
Most early research on health and function issues
of persons with disabilities has been based in clinical practice. Clinical settings have offered occasions for
descriptive studies and studies to document the response to preventive or
intervention strategies. As noted,
design and methodology of studies are of significant importance. The domains of intervention strategies and
outcome measures must be expanded beyond traditional biomedical
evaluation. Recently, there has been a
greater awareness of health services research.
Changes in the delivery of health care may have a significant impact on
persons with disabilities. As well, the
knowledge base of health professionals regarding issues of persons with
disabilities has often been noted by consumers and other professionals to be
limited. As a consequence, clinical
practice continues to provide an opportunity for much needed research and
education.
The nature of clinical
practice has taken dramatic new turns in recent years. Managed care organizations, health systems management,
and the federal government have provided different focuses, restraints, and
structure on providers and consumers.
Consumers of health care are becoming more vocal and educated regarding
their needs. In previous chapters, we
heard a strong call for a partnership between women and their physicians. We heard a demand that priority be set on
wellness and the prevention of secondary conditions. We heard of many general health needs such as
reproductive health, fitness training, and stress management that should be
available to women with disabilities.
How to provide the best opportunity for a woman with a disability to
receive optimal health care has yet to be determined. A health care delivery system must offer a
knowledgeable principal primary care physician who collaborates with a
knowledgeable specialist, in partnership with a woman with a disability. Methods of communication between consumer and
health care provider, accessibility of environment, education of providers and
consumers, and documentation of medical history are all challenges to the
system. A model of delivery, the
efficacy of a model for the consumer, and the effectiveness of a model for
managed care organizations all need to be better described and researched. We must develop new models of service
delivery that will be better equipped to meet the health care needs of women
with physical disabilities.
Education of health
care providers regarding issues of women with physical disabilities is also of
importance. Most undergraduate curricula
in health care fields devote little time to women's issues, particularly women
with disabilities. Issues of general
prevention strategies, secondary conditions, aging, multi-culturalism, and
psychologic health are often neglected.
Further, general disability-related biases are also usually addressed in
a limited fashion, issues such as attitudinal barriers and environmental
barriers. Congress recognized the need
for improved training in women's health and commissioned the NIH Office on
Women's Health to develop a medical school curriculum in this area. This curriculum includes a chapter on the
specific health needs of women with disabilities. All health professionals, not only
physicians, should have issues of women with disabilities addressed in the
curricula.
The challenge before
us is substantial. Concerns of health
care delivery and education of health care professionals is of a national
scope. We must launch a powerful campaign to convince health care policy makers
that women with disabilities have important but neglected health care
needs. Improvements in the areas of
education and health care delivery may result in early recognition of treatable
or preventable health issues, with a long term effect of improvement in the
health and functional status of women with disabilities.
Vast new opportunities are opening up before
us in the communication of information.
Advances in electronic communication, including the Internet and
telemedicine, offer unprecedented outlets for creativity in packaging
information and targeting it to diverse audiences. New funding sources are appearing, such as
the National Telecommunications and Information Administration, that serve to
advance the application of these new technologies. As the state-of-the-art progresses, however,
we must be vigilant to assure that important segments of the population are not
left out of the information loop for lack of technological sophistication. While many people with disabilities have
found computers to be a new vehicle for integration into society, many others
find that computer technology is still beyond their means. We must initiate new and creative methods for
bringing technology of all types within their financial reach. Computer technology is also not part of the
active vocabulary of many practicing clinicians. In addition to offering training
opportunities that will raise their level of computer competence, we must
create incentives for them to learn.
Until we achieve a more computer literate society, it is important that
we continue to expand efforts to disseminate information via a multitude of
avenues, including academic journal articles, summaries, and fact sheets, as
well as press releases to the print and broadcast media, a primary information
resource for consumers and professionals alike.
A variety of formats and accessible media are necessary to reach all
segments of the population who can benefit from this information.
In the study of health
needs of women with physical disabilities, the challenge is an issue not only
of dissemination, but also of public education.
Our educational mission is not only one of spreading knowledge, but also
of changing attitudes. Our targeted
learners include 1) medical professionals; 2) policy makers, including medical
directors and administrators in public and private facilities; 3) deans and
other administrators of training programs for health care professionals; and 4)
women with disabilities, their friends, families, and acquaintances. The first and most potent educator is the
family, yet it is typical of families, as it is of all society, to hold very
protective attitudes toward girls and women with disabilities. By reaching mothers and fathers, we can
influence their attitudes about their disabled children and help them gain
access to the many resources available.
Incorporating disability information in primary and secondary school
health curricula empowers youth to understand their bodies better and to go
beyond stereotypes and prejudice in relating to their peers with
disabilities.
It is amazing how
little current information filters down to consumers themselves. All women face barriers in accessing the most
current information about their health and the availability of new health care
techniques; for women with disabilities, barriers resulting from environmental
inaccessibility, financial limitations, knowledge gaps, and negative attitudes
compound this problem. Women who
received medical services for their disability in the 1960s and 1970s and are
not followed regularly by disability specialists have little access to the
means of dissemination traditionally used by researchers. Even those who have received services more
recently may not have access to current information if they are not connected
with major medical centers. Those whose
disabilities are relatively stable may have no need to see rehabilitation
professionals and may have the majority of their medical needs met by primary
care physicians. For some women, their
early experiences in medical and rehabilitation settings were negative, even
traumatic or abusive, and consequently they have deliberately avoided contact
with disability-related health services.
Public health educators and funding agencies should put a priority on
educating the general public and consumers with disabilities about way to
obtain current medical information related to disability, including the many
issues contained in this volume.
Informing and
educating medical professionals requires some different strategies. The vehicle of the continuing education
seminar can be used very effectively to transmit information in practical
terms. Appropriate documentation and
follow-up can enhance learning and offer an accessible information resource
that can be used on an individual basis.
We would like to issue a challenge to the field to create networks of
information sharing. This concept has
been extensively discussed, but remains little more than a fragmented
conglomeration of pockets of expertise.
Serious efforts must be undertaken to draw together these pockets in
combination with the vast literature and other resources available through the
Internet and telemedicine to produce a viable, easily accessible, well-known
network of information related to disability.
Personal experience with disability
constitutes a qualification of inestimable value for researchers and clinical
practitioners, particularly in understanding the psychological and social impact
of disability. We support the principals
of participatory action research, in which the population of interest is
integrally involved in every step of the research process, from problem
identification through design conceptualization, implementation, interpretation
of findings, and finally outcome evaluation.
One of the best ways to ensure high quality and relevant research is to
increase the number of women with disabilities who are trained as researchers
and clinical practitioners. This cadre
of women would also be available to be involved in research projects and grant
review panels, and to hold policy-making positions in health care and research
funding. Strategies for achieving this
include 1) urging vocational rehabilitation counselors to encourage gifted
female students with disabilities to pursue careers in the sciences; 2) creating scholarship incentives for
pursuing such studies; 3) offering sponsorship for participation in scientific
meetings and conferences, including coverage of disability-related expenses; 4)
creating a comprehensive list of women with disabilities trained in research
and medical practice; 5) circulating such a list among public and private
research funding agencies and encouraging them to recruit women with
disabilities to serve on grant review panels, and 6) urging placement agencies
for positions in medical administration to pursue qualified women with
disabilities for such positions.
We chose four areas of
focus for this volume, and, in doing so, we have opened discussion on hundreds
of other related topics. We hope this
work will be a catalyst for exploration of the breadth and depth of the many
questions that have been raised, herein.
The purpose of this volume will be well served if the many recommendations
for research and practice given in each chapter motivate individual
researchers, clinicians, and consumers to engage in passionate campaigns to
bring about change within their own sphere of influence to improve the health
and quality of life of women with disabilities.
References
Fuhrer, M. J., 1995. Conference Report: An Agenda for Medical
Rehabilitation Outcomes Research. American
Journal of Physical Medicine and Rehabilitation. 74, 243-248.
Nosek, M.A., Rintala, D.H., Young, M.E.,
Howland, C.A., Foley, C.C., Rossi, C.D., and Chanpong, Gail (1995).
Sexual functioning among women with physical disabilities. Archives of Physical Medicine and
Rehabilitation, 77, (2), 107-115.