Family Role in Disabilities and Chronic Illness In Nursing Education

Chronic Illness and Family Role in Disabilities In Nursing Education

The Family's Role in Chronic Illness or Disability,Chronic Disabilities and Assistive Technologies In Nursing Education,Problems Associated With Chronic Disabilities In Nursing Education.

The Family's Role in Chronic Illness or Disability

    Families are usually the care providers and the support system for the person with a disability, and they need to be included in all the teaching learning interactions. Their reactions and perceptions of the impact of chronic illness or disability, rather than the illness or disability itself, influence all aspects of adjustment. 

    Family participation does have a profound influence on the success of a patient's rehabilitation program ( Lubkin & Larsen, 2016; Turner et al., 2007).When assessing the patient and family, it is important to note what the family considers high priority learning needs. 

    Most often. Such needs will be related to the caregiver's perceived lifestyle change. A caregiver might ask, “Can I continue working outside the home?” or “Will I be able to maintain my relationships with friends?” 

    It is important that the nurse assist the patient and family to identify problems and develop mutually agreed-upon goals. Adaptation is key. Communication between and among family members is crucial. If a family has open communication, the nurse is in a good position to help the family mobilize their resources to obtain needed educational and emotional support . 

    The educational process also needs to take into consideration the family's strategies for coping with their relative's illness or disability. Without a doubt, the overwhelming nature of chronic illness affects the quality of life not only for the person who is ill but also for all the family members ( Lubkin & Larsen, 2016). In their role as caregivers, family members have their own anxieties and fears. 

    A chronic illness or disability can either destroy or strengthen family unity. Siblings and children of the person with a disability may be at different stages of acceptance. Denial may be present during the initial diagnosis of an illness or disability. 

    Later, as the patient and his or her family realize that the situation is likely to be permanent and has many consequences, the nurse may witness them pass through periods of anger, guilt, depression, fear, and hostility. As these feelings gradually become less intense, teaching lessons will need to be readjusted to fit the new circumstances. Flexibility is vital to achieving successful outcomes. 

    Be sure to treat each family member as unique, and recognize that some family members may never fully adjust to the altered circumstances. TABLE 9-3 lists: some of the most common sources of tension in patient and family education.

    Nurses need to value their teaching role when they work with the family of a person with a chronic illness or disability. Unlike families dealing with an acutely ill member, families with a member who is permanently ill or disabled will have intermittent contact with the healthcare system throughout their lives. 

    Therefore, whenever teaching sessions are required, the availability of families should be a primary consideration. Given adequate support and resources, families with a member who is chronically ill or disabled can adapt, adjust, and live healthy, happy, full lives.

Chronic Disabilities and Assistive Technologies In Nursing Education

    The growth of modern technology has pervaded all areas of our lives, making them better in many ways. Without a doubt, the personal computer is the technology that has had the greatest impact. Until recently, however, computers were inaccessible to individuals with a disability. Yet, when assistive technology has been made available to them, individuals with disabilities have experienced dramatic changes in their lives. 

    Computers with the appropriate adaptations have liberated people from social isolation and feelings of helplessness and have instilled in them feelings of self-worth and independence.Since the enactment of the ADA in 1990, the diversity of the patient population cared for by nurses has grown to include more individuals with disabilities in every practice setting. 

    As nurses' understanding of assistive technology is enhanced, their ability to advocate, recommend, and assist persons to attain the appropriate equipment and training will likewise be bolstered (Lindberg, Nilsson, Zotterman, Soderberg, & Skar , 2013; Reed & Bowser, 1999 ; Stanhope & Lancaster, 2014). 

    Assistive technologies are defined as technological tools (computers and communication devices) available to persons with disabilities that provide access to education, employment, recreation, and communication opportunities that allow such individuals to live as independently as possible (Alliance for Technology Access [ATA]. nd). 

    Examples of assistive technology include voice activated computer programs, specialized keyboards, communication devices, arm and wrist support, amplified telephone handsets, screen magnifiers, and environmental controls (ATA, nd).

    Assistive technology is playing an ever-increasing role in our work and daily living activities. Today the possibilities for devices are endless. For instance, issues of the Journal of Visual Impairment and Blindness, published by the American Foundation for the Blind (http://www.afb.org), advertise products geared toward individuals with disabilities, such as devices that tread aloud from the computer screen in either human or synthetic speech and a glow-in-the-dark print Braille rubber wristband for children who are visually impaired. As can be imagined, such adaptations are very helpful to anyone who has vision, learning, or cognitive disabilities. 

    Most people use a combination of systems or devices depending on their needs. The good news is that mainstream technology is moving in the direction of universal design, which means that it will be available to almost anyone. Technology has the potential to improve the lives of people with disabilities by giving them the tools to become more independent, more productive, and better able to participate in a wide range of life experiences.

    People with communication problems, especially those who are unable to speak or whose speech is difficult to understand, can use augmentative and alternative communication devices, such as the computer, to add a whole new dimension or quality to their lives. Technology has already made much of the previously impossible, and even greater advances can be expected in the future. 

    It is incumbent upon the nurse to know how to help individuals with disabilities locate and access whatever assistive technology is needed to convey health information. This technology might include software programs with closed captioning built in for the hearing impaired or on-screen keyboards that can be accessed with a mouse, trackball, or an illuminated pointer device for someone with fine or gross motor deficits.

    Every computer-based solution is the result of a carefully planned, individually determined process. Individuals with a disability are the experts on what works best for them. However, some guidelines should be considered when selecting the best adaptive computer. The best computer solution for individuals with disabilities will allow for independent and effective use. Other criteria include affordability, portability. 

    Flexibility, and simplicity of learning. If these criteria are met, then the adaptive computer is probably in compliance with the ADA's reasonable accommodations.As the menu of assistive technologies has expanded, their use has become more widely considered and recommended. 

    It remains a challenging and sometimes complex process to match the person with the right technology. Individuals with physical, sensory, and/or cognitive impairments affecting their ability to use a computer may benefit from a host of adaptive devices (Family Center on Technology and Disability, 2012).

    Assistive technology is here to stay. Although it will probably be forever changing, the process for ensuring individualized computer solutions will remain much the same, and the benefits are enormous. It is exciting to reflect on the positive, possibly life-changing effects that the personal computer and other telecommunication devices can have on the lives of individuals with a disability. Such products have the potential to change what it means to be disabled. 

    The role of the nurse as educator includes a patient advocacy component. Acting on the patient's and family's behalf, the nurse can work with the multidisciplinary team, including the assistive technology specialist, to enable special populations to participate in all of life's experiences. Thanks to what assistive technologies will be able to do, more people with disabilities will enjoy greater independence and fulfillment. 

Problems Associated With Chronic Disabilities In Nursing Education

    The current debate on health care and health care reform has created a growing awareness of the rising costs of health care. The problems associated with chronic illness and disability in the United States continue to grow, as does concern about the mounting cost of managing the long-term health problems associated with these conditions. 

    In the past, the national spotlight has been focused on obesity, tobacco and alcohol use, and other risk factors for chronic illness and disability. 

    As healthcare research and government funding for programs designed to cut costs by preventing these costly health conditions are beginning to emerge, so, too, has the demand for personal accountability in areas such as weight management, where the individual plays a role in the incidence and management of the condition. 

    Responsibility for the cost of care is another much debated topic. Should responsibility for cost of care be with the federal or state government? Should individuals be mandated to have health insurance coverage? What is the responsibility of third-party payers in covering the cost of disabilities and chronic care?

    For all the reasons cited previously, the need for health education is at an all time high. Health education remains a viable solution for teaching people to reduce risk factors and manage their health, thereby preventing chronic illness and disability. Nurses need to continue to incorporate health education into their practice and conduct research on effective ways to influence behavior change.

    The national spotlight on reduction of risk factors for chronic illness and disability is reflected in the US Surgeon General's report on health promotion and disease prevention, Healthy People 2020 (USDHHS, 2010). 

    This document supports national endeavors to create a healthier nation by serving as the basis for prevention efforts, including the identification of national objectives and the provision of evidence based resources and tools that can be used by communities to implement public health programs. Healthy People 2020 addresses health topics broadly and can be used by nurses to plan teaching programs in a wide range of settings. 

    For example, in relation to nutrition and weight status, Healthy People 2020 identifies objectives and strategies for people across the life span and in environments including schools, healthcare settings, the home, and the workplace (USDHHS, 2010).

    This chapter covered some of the most common disabilities experienced by millions of Americans resulting from disease, injury, heredity, aging, and congenital defects. These conditions affect physical, cognitive, or sensory capacities and require behavioral change in one or more of these domains of learning. 

    The nurse educator must be creative, innovative, flexible, and persistent when applying the principles of teaching and learning to meet the needs of these special populations of individuals, their families, and their significant others.

    The shock of any disability, whether it occurs at the beginning of life or toward the end. has a tremendous impact on individuals and their families. 

    At the onset of the condition and throughout the transition and recovery process, the patient and family face the prospect of having to learn new information or relearn previous skills, as successful rehabilitation or rehabilitation means acquiring knowledge and applying it to their situation. Inner strength and courage are attributes needed to face each new day, as the effort to live a normal life never ends. 

    The physical, social, emotional, and vocational implications of living with a disability or the permanence of a chronic illness require the nurse as educator to be well prepared to meet all members of these special populations right where they are in their struggle to live a life of quality and independence.