Since the 1970s, ADN's have been widely used within the health care arena in a variety of roles ( ₁₄ ; ₁₅ ; ₁₆ ; ₁₇ ; ₁₈ ; ₁₉ ). Some of these roles include administrative, educator, researcher, clinician or primary provider in community, acute, rehabilitative, or long-term care to name a few. As a result, the ADNs' primary focus may be the client or patient (s), student or staff nurse, and/or organization. Regardless, ADN's are prepared to demonstrate clinical expertise across the continuum of care, consult with other professionals, promote effective and efficient health care, conduct or participate in research, and act as a mentor or role to other staff ( ₂₀ ).

Within each role, the ADN has the ability to create a setting for health care discourse ( ₂₁ ; ₂₂ ). The purpose of the discourse involves decision-making and systematic and inclusive problem solving within the broad scope of advanced practice. The nursing process provides a framework for discourse that includes assessment, planning, implementation, and evaluation phases and promotes interdependence and collaboration among participants and systems of health care. Consequently, discourse often leads to maximized resources, cost-effective and efficient programming, and successful collaborations ( ₂₃ ; ₂₄ ; ₂₅ ).

Conversely, health care innovations frequently originate from anecdotal or clinical experience. In order to substantiate innovations as well as minimize the risk of duplicating services and inefficient programming, the ADN draws on knowledge and expertise in formative evaluation, organizational development, and communication skills ( ₂₆ ; ₂₇ ; ₂₈ ; ₂₉ ). Based upon the aforementioned reasons, ADNs implement health care innovations to address the identified or target populations, utilize current resources, address barriers, and cultivate new resources.

Disabilities, also known as activity limitations, restrict a person's ability to perform activities of daily living (ADLS): e.g., toileting, bathing, mobility, or instrumental activities of daily living (IADLs): e.g., attending school, working, or socializing. Activity limitations can be the result of either a congenital disease, e.g., cerebral palsy, or an acquired disease, e.g., multiple sclerosis, arthritis, or a traumatic event, e.g., spinal cord injury or traumatic brain injury ( ₃₀ ). The range and depth of services needed by persons with disabilities (PWD) result in higher costs of health care than for the general population ( ₃₁ ; ₃₂ ). The current integrated health care system is not designed to serve the needs of PWDs. Persons with disabilities receive services from an array of public and privately funded programs that provide single services such as health care, social, and income services. As a result, PWDs and their families are forced to navigate through a complex service delivery system. As advances in medicine increase the life expectancy for persons with chronic diseases and disabilities, the number of disabled increases along with their life-long needs ( ₃₃ ).

Progressing from one developmental life-stage to the next and participating in society regardless of having an activity limitation is a fundamental right for all individuals. Research indicates that people with disabilities and their families have a myriad of needs that require resources to promote and support their successful development and participation in society ( ₃₄ ; ₃₅ ; ₃₆ ; ₃₇ ; ₃₈ ; ₃₉ ; ₄₀ ). These needs include on-going medical education, vocational and/or post-secondary education and training, patient and family support, health care coverage, and advocacy to name a few.

Furthermore, PWDs and their families experience similar needs as persons without disabilities that coincide with the developmental life-stages. These stages and need include: infancy—separation, autonomy, mobility skills; latency/school-age--peer and school relationships; adolescence and young adulthood—maturing body, sexuality, intimacy, career and post-secondary education, separation from family, peer relationships; adulthood and middle age---marriage, family, career; and older adulthood---family, career and contemplating about retirement, affects of aging process on health status. However, the difference between theses two groups is that the intensity for need is heightened, the available resources are often fewer, and the societal barriers are often greater ( ₄₁ ; ₄₂ ). Throughout the lifespan, PWDs and their families require social, psychological, financial, and emotional support ( ₄₃ ; ₄₄ ; ₄₅ ), integration and reintegration into the community, health information ( ₄₆ ; ₄₇ , ₄₈ ); and caregiving ( ₄₉ ; ₅₀ ; ₅₁ , ₅₂ ; ₅₃ ).

In 1998, Louis Harris and Associates conducted the National Organization on Disabilities (N.O.D.)/ Harris Survey ( ₅₄ ). One thousand Americans with disabilities age 16 years and over were interviewed over the telephone. Based on all respondents data show the following were problems that they “sometimes face” are: not having enough money, (68%); inadequate health insurance, (40%); inadequate work opportunities, (34%); not having a full social life, (51%); inadequate transportation, (27%); negative public attitudes, (31%), and poor access to public facilities, (25%). ₅₅

Literature highlights the prevalence of persons living with disabilities and their comprehensive unmet needs that pose limitations in their ability to access resources and participate in society to their fullest capability ( ₅₆ ; ₅₇ ). Innovative programs can strengthen and promote access to the necessary resources and establish collaborations that cultivate stakeholder participation. Advanced Degree nurses have the formal education to conduct activities to assure effective programming occurs.

The overall purpose of conducting discussion groups with medical rehabilitation staff was to identify their perspectives on consumer resource needs, helpful resources, barriers to accessing resources, and how need change over time. Data were collected from medical rehabilitation RF staff by holding discussions at their monthly staff meetings around the following questions: (a) What are the resource needs for persons and families with disabilities? (b) What resources have been helpful? (c) What are some of the difficulties in accessing resources? and (d) How does the need for resources change over time? The CEPM and Director interviewed a total of 123 who participated in one of 17 discussion groups. The participants were self-selected, cross-sectional and included physicians, care managers, nurses, occupational, physical, recreation, speech, sports, and vocational therapists, psychologists, social workers, administrative coordinators, environmental, security, food services, and ancillary professionals associated with the system of care. Each group lasted approximately one-hour. Notes were taken on directly entered into the computer and evaluated by content analysis technique.

The unit of analysis was the groups and not the individuals within the group. Descriptive statistics were used to describe the demographics as shown in Table 1. The researchers, the CEPM and the Program Director used alphabetical codes to maintain the confidentiality of information associated with each group. Responses to the open-ended assessment questions were analyzed by transforming qualitative data into quantitative data by coding based on defined categories. Data transformation occurred according to the Center staff and researcher adhering to the following process: (a) reviewed the content of transcript notes for each discussion group and each comment was assigned to a category that emerged from the data, (b) clarified categories and content for inter-rater reliability and consistency, (c) quantified the number of comments per category, totaled these comments, and (d) identified whether a group had a comment within that specific category. What was important was whether there was a comment within that group, NOT the number of comments within that group that became important. The researchers, the CEPM and the Program Director did not assign a separate weight based on the number of comments that fell into each category.

All groups ranged in size from 4 to 13 members (M= 7; mdn = 7) except for one group that had two members. Key findings for this activity are presented by assessment question..

Most pressing needs for resources. Participants were asked, “Based on your experience, what are your patients'/families' most pressing needs for resources?” Table 1 shows the need for resources by group. Participants identified 11 pressing needs for resources, which are listed in order of highest percent shown among groups.

(a) Housing, A place to live that is accessible and affordable, having reasonable modifications and accommodations, intended to foster independent living in the least restrictive setting. Housing may be a group home, small apartment, and single-room occupancy.

(b) Psychosocial support, emotional, mental, spiritual, cognitive support to promote and or enhance coping, self-acceptance, and personal and family adjustment.

(c) Caregiver assistance and respite, family members that provide direct care to the PWD so that they can remain at home. Respite is temporary relief of providing caregiving.

(d) Finance, monetary resources including money, capital, and credit in order to pay for services necessary to function as independently as possible. Problems defined as insufficient funds and/or difficulty with access information regarding coverage.

(e) Transportation, the ability to locate and secure affordable and accessible transportation that would enable participation in daily life activities, including being able to assess one's ability to continue to drive.

(f) Recreation and socialization, Activities engaged in for pleasure that support building relationships, decreasing social isolation and providing the opportunity to develop new skills and/or interests.

(g) Medical information, Knowledge regarding preventive, restorative, curative facts/tips pertinent to patient teaching. Information on the symptoms, diagnosis and treatment of disease to help patients and their families better understand what has happened to them and the outcomes they can expect to achieve ( ₅₈ ).

(h) Equipment, any devices necessary to increase independence and functioning; e.g., wheelchairs, adaptive clothing, or scooters.

(I) Education, the primary, secondary, post-secondary, or vocational training offered in a formal setting that provides the individual with the skills and knowledge relating to choosing a career, getting and keeping a job, and making job and career changes.

(j) Care and treatment, trained and licensed professionals providing “tip sheets” and basic education for patients and families in order to maintain activities of daily living (ADL's) and to promote functioning.

(k) Employment, having a paying job either full-time or part-time that ultimately increases the individual's level of independence.

Figure 1

Table 1. Most Pressing Resource Needs

¹ Includes one group that mentioned spiritual needs ² Includes respite

Helpful resources. Participants were asked, “What are some of the [most helpful] best resources you've found to be useful in assisting your patients and their families?” The five most helpful resources identified were:

(a) Condition-related societies, Organizations whose mission are to provide services to those with specific conditions: i.e. Multiple Sclerosis Society, Spinal Cord Injury Association, and Brain Injury Association. Services include peer support groups, equipment lending closets, and up-dated information about their respective conditions.

(b) Not-for-profit community organizations, assistance offered by not-for-profit organizations to individuals with specific conditions in a particular locale: i.e., Access Living, community centers in general/places of public gathering.

(c) City, state, or federal government organizations, Public services delivered to the community and funded through government monies. For example, the local school system and/or personnel within the school system that enable all eligible children with disabilities a public education in an appropriate environment ( ₅₉ ). In this case, special education services, guidance counseling, special therapies supplied by the school system.

(d) Educational materials, Resources designed either by RF staff: i.e., tracheotomy care, or purchased from an outside vendor; i.e., transferring to a wheelchair, with the aim at providing a wide-array of health information to the patient and/or family. Participants did not make a distinction between patient education and consumer health education materials. However, all groups mentioned that technology, as a medium to transfer information, improved access to resources via the Internet or other telecommunications.

Difficulties in getting resources or barriers. Participants were asked, “What are some of the difficulties that your patients and/or their families experience in getting resources?” Participants cited that limited or no resources available, which included lack of financial resources and transportation or support, and the patient's lack ofknowledge about resources, were the main barriers. Participants expressed that the demand for resources is greater than the supply of resources needed. Examples of limited or no resources available are: the inability to find a suitable caregiver to hire, accessible housing, timely transportation, employment (there are more jobs available than qualified people to fill the positions), or being single parent who is hospitalized and has no one to provide childcare. Meanwhile, examples of the patient's lack of knowledge about resources are not knowing about specific government entitlements, or implications of public laws such as the American with Disabilities Act.

How patient needs change over time? Participants were asked, “We understand that a person's need for resources may change over time. In what way, if any, have the needs of your patients/families changed over time?” Participants said that natural changes related to aging and normal development across the life span are impacted by or impact the person with a disability can be attributed to age-related changes; the change from a physical emphasis to a psychosocial emphasis, moving from physical to psychosocial/fuller life/ learning self-acceptance/new you —Initial focus was on walking, ADL's, being as physically independent as possible, but then focusing on emotional, mental, cognitive, recreational, social, and educational adjustments in order to live life fully; and a change in functional status, moving from a dependent level of functioning (needing an assistive device or hands-on assistance) to a more independent level of functioning, i.e., relying on a person for assistance to ambulate, to using a walker, then to a cane, or not needing any assistive devices or a decrease in function, in a person's level of independence due to a new symptom or new illness.

A total 16 centers were interviewed. Key demographic findings are shown in Table 2. Eight centers provide primarily consumer health education, five provide consumer health and patient education information, and three provide patient education, consumer health information, and professional health education. Eleven centers were located in acute care hospitals; four were in solo rehabilitation hospitals and one was off-campus from a university. The population served varied from eight centers primarily serving all age groups across the life span, five serving pediatrics (birth through age 21 years), and three serving solely adults (over 21 years).

Figure 2

Table 2. Demographic Information

All libraries are open five days a week during regular business hours (Monday through Friday, 8 am through 5:30 pm; three libraries have some type of weekend hours with staff or volunteers); two libraries are open one evening per week; and two libraries are open, but not staffed 24 hours a day (refer to Table 3). Several libraries had hot lines or call-in lines in which people could leave a message with a question and receive a response within a designated time frame.

Figure 3

Table 3. Availability and Human and Technological Resources

^a Only one-page description of library on the home organization's web site. ^b Resource information integrated throughout hospital web site. ^c Full- time equivalents.

Eleven libraries have a web site of information that can be reached either through their home organization's web address or by their direct web address. The information on the web sites varies and includes: listing upcoming educational programs offered at the library or in the local community, patient education and consumer health education materials housed in the library, and links to government resources or national organizations. Four of the libraries have a one-page advertisement on their home organizations' web site and one library does not have a link to their home organization's web site or an advertisement on the home page.

Each library has at least one computer for public access, with the exception of one center, which plans to purchase a computer for public access. The number of computers available for public access ranged from 2 to 20. The majority of libraries have between two and five computers available to the public.

Human resources included hired staff and volunteers. The number of full-time equivalents (FTE's) ranged from .0 FTE to 7.9 FTE's. ₆₀ Eleven libraries have at least one part-time librarian on staff and additional staff included registered nurses (RN), Master's Social Workers (MSW), life specialists, and information specialists. In addition to paid staff, eight libraries rely on volunteers to operate the library.

Responses to the open-ended question regarding suggestions centered on the selection of materials and the distinction between patient education and consumer health education.

Selection of Materials. Consumer health and patient education are seen as two distinct entities. Although they may overlap, the type of information and staff that is responsible for reviewing and compiling information have distinct skills and roles. Furthermore, materials selected are based on consumer needs, professional staff requests, literature reviews, web searches, and recommendations from Consumer Health Guides and they are consistent with the mission of the organization and its standards of care. All libraries fall into one of three Models/Types: (a) Consumer Health, (b) Consumer Health and Patient Education, and (c) Consumer Health, Patient Education, and Professional Education. With the exception of one center that houses both consumer and patient education materials, all patient education materials are produced and reviewed by a patient education committee set outside the center. A representative from the center may or may not sit on this committee.

Make distinction between patient education and consumer health education. Representatives suggested that the skills needed to locate, monitor, and disseminate consumer health information differ from skills needed to locate, monitor, and disseminate patient education information. Furthermore, almost all of the representatives referred me to the Consumer Health and Patient Health Information Section of Medical Library Association website to better understand the distinction between the two.

Patient education/information. Planned activity initiated by a health professional, whose aim is to impart knowledge, attitudes, and skills with the specific goal of changing behavior, increasing compliance with therapy and, thereby, improving health ( ₆₁ ).

Consumer education/health information. Is information on health and medical topics provided in response to requests from the general public, including patients, and their families.... In addition, CHI encompasses information on health promotion, prevention medicine, the determinants of health and accessing the health care system ( ⁵⁸ ).

I would like to thank my colleagues Kristine Cichowski, Marcia Opp, Lisa Rosen, and Maritza Torres for their ongoing support, assistance with data analysis, and editorial comments. In addition, I would like to acknowledge discussion group participants.