Concepts of Disability: the Lived Experience - Case Study Example

Case Study I am a 35 year old female. I live in Emerald in Central Queensland with my husband and two teenage sons. 2 years ago, i was traumatized with a brain injury (TBI) after getting involved in a vehicle accident, which had serious implications, changing my life drastically. My house is relatively small with a backyard. My house is old fashioned and is three-storeyed. The second floor of my house essentially had my bedroom and the children’s bedroom. The kitchen and living room are on the first floor. The accident affected me negatively especially when it comes to the normal body functions as well as the cognitive functions. The nervous system was the most affected part in the accident exposing me to many difficulties in my daily operations. Body Functions Research indicates that traumatic brain injury (TBI) emanates from a brain injury as a result of an external impact on the head, an accident, infancy injury, or a mild blow like a concussion. According to Mayhew (2003), a brain injury affects many physical, psychological and emotional dispositions: cognitive dysfunctions, stability, motion of arms and legs, muscle spasticity, disturbance or uniformity. Concerning physical disorientation, people suffering from brain injury (TBI) have unilateral muscle weakness, limitations in the contraction of muscles, operationally malfunctioned limbs and spasticity from increased tone and reflexes. This forms part of the experience I went through as a result of the accident. Following the brain injury, i could not undertake my daily normal activities like walking and taking a bath. In addition, it was so painful and uncomfortable to engage in any form of movement. This meant that my work and hobbies had to be forgotten. Furthermore, research into this disorder indicates that some symptoms of TBI may include impaired vision and hearing difficulty following clotted blood in the ear canal. This causes considerable reduction of acuity and incontinence. Individuals who suffer from psychological dysfunction have difficulties when it comes to memory, perception, coordination of communicated information, difficulties in problem solving ability, executive operations in addition to language problem. Emotionally, a brain injury alters people’s behaviour so that they can exhibit a level of aggressiveness, agitation, akathisia, emotional burden, rejection, indifference, impulsivity, aggravation, bigotry, irrationality, rigidity, perseveration, confabulation, and poor judgment. Effect on Family Unity Family members are the most affected group whenever their relation suffers a brain injury. The moment one suffers from TBI, members of the family get devastated, and find it difficult to change their day to day activities. At the extreme end, members of the victim’s family despair, and fail to make rational decisions when faced with conflicting situations. The first effect to my family was my reduced role as a mother and wife. The way we interacted at family level also changed due to the fear instilled both in my children and my husband. Further research indicates that family ties are paramount to a level that a distortion of one member’s health affects the rest of the family. Prior to the accident, I was the bread winner of the family. This changed when i suffered traumatic brain injury (Arango-Lasprilla, Quijano, Aponte, Cuervo, Nicholls, Rogers & Kreutzer, 2010, pg. 1020). All prospective plans for my family as well as great ambitions came to an instant hold. Evidently, any action or disorder that impinges an entire family impacts members at personal level. Financial ability is usually central to family cohesion. My illness made me leave work, which affected the family’s financial state (Arango-Lasprilla, Quijano, Aponte, Cuervo, Nicholls, Rogers & Kreutzer, 2010, pg. 1029). This was especially devastating given that we needed to pay a mortgage, a loan that my husband alone could not manage. Our fiscal state moved from bad to worse to the extent of selling our house so that we could move in a rental apartment. Furthermore, it is disillusioning that all members of my family developed complications following my brain injury. My family suffered hypertension, depression and other psychologically related illnesses. As a result, it is clear that TBI has had a greater impact on all members of my family, weakening our family ties. Identify International, National, State, Local Organizations Extensive studies reveal that there are a wide range of organizations geared towards helping people with traumatic brain injury. In the event of prolonged brain injury, information on management of the disorder is imperative. Such organizations are critical in accessing such information. Similarly, social life is crucial in the event of TBI. Organizations within Australia serve to provide such services that can help maintain family cohesion through advisory techniques to the affected people. The table below identifies a wide range of organisations in Australia that help victims of traumatic brain injury to carry on with their daily activities normally. Brain Injury Australia This is the highest acquired brain injury advisory organization. The body is represented through State and Territory Member Organisations. I believe this is a good organisation in my case since it can offer me diverse services that may meet my personal requirements as well as family needs (Green-Hernandez, 2011). The most significant aspect of this body is that it operates at national level to make sure that all individuals suffering from TBI get access to the necessary assistance in terms of resources. This is vital in optimising their social and economic engagement within society. The Brain Injury Association of Queensland Inc. (BIAQ) This organisation is registered to deliver not only accredited but also non-accredited training in the entire country. The body proves crucial in my case since it can offer me accredited and trained employees that can help me handle my condition of TBI (Queensland Government & Queensland Health, 2006). ABIOS This is a specialized community-based rehabilitation organization that functions to improve the activity system of people having Acquired Brain Injury (ABI) as well as their families (Chronister, Chan, Sasson-Gelman& Chiu, 2010, pg 44). The body focuses on assisting people in Queensland with ABI, their family members, and caregivers to attain an improved standard of life as well as community involvement through increased independence, choice, opportunity and access to appropriate and responsive services. The Emerald Community Support Association In regard to this body, the following programs are offered: Home and Community Care, Home Assistance Program, Local Adaption Service; Youth Development Worker Program; Rural Support Program; Support Assisted Accommodation; Youth Activities Program; Family Relationship; Community Support Services; Legal Assistance through Women's Justice Network Videolink; and Once Monthly Personalised Circuit Solicitor (Cott, 2004, pg. 1145). Emerald Hospital This is a local medical hospital with a wide range of important departments that can serve people with acquired brain injury in addition to those suffering from other sicknesses. The departments include: Medical, Surgical, Casualty, Acute Care, Maternity, Outpatients, Pharmacy, Dental, Physiotherapy, and Occupational Therapy Indigenous Health among other crucial sections for patients with different illnesses (Kearney, 2003, pg. 4). Living a Day Time / activity Ease of functionality on a scale of (0-4) 0= No hard 4= Very Hard Barriers encountered Solutions Cost/hour 8.00- Waking up to take a shower 4 Difficulty in motion and impaired vision Medical practitioner such as a nurse $ 43 8.30 Taking Breakfast 4 Difficulty in motion and cutlery use Personal assistant $ 50 9.00 Looking after animals 3 Difficulty in using the wheelchair Use of ramps $ 79 11.00 Shopping 4 Difficulty in driving A driver needed $ 50 2.00 Lunch preparation 4 Difficulty in motion and utensil use Personal helper $ 50 4.00 Farm activities and homework 4 Difficulty to move through different terrains of the farm Ramps are necessary $ 85 5.30 House chores 4 Motion difficulties Personal helper needed $ 50 6.00 Have Dinner 1 Wheel chair Do it personally $ 0 7.00 Family association 3 Cognitive impairments Patience needed on the side of my family members 9.00 go to bed to sleep 2 Difficulty moving upstairs in wheelchair Personal assistant $ 50 Social Friends and Family Any individual having disabilities and other related disability illnesses usually experiences a wide range of negative effects. Traumatic Brain Injury causes other associated complications like difficulties in moving, and hindrances to carry out daily activities (Schneidert, Hurst, Miller &Ustun, 2003, pg. 149). As a result of these negative implications, complications develop in terms of social interaction amongst members of my family. For instance, some of the activities that we used to engage in with my sons changed since they had to shift their attention to help me out so that we can attain financial stability instead of hiring personal assistants. Their interaction with friends changed as well due to lack of enough time that can give them an opportunity to meet friends. This clearly shows that physical and psychological disorders usually alter personal interactions with friends and families. Leisure activities, for instance, in the case of my sons changed diet to limited time to meet friends, going out to new places as well as excursions at school. Most significantly is the declining relationship with my husband as TBI is making it weaker and weaker each day. My husband’s financial status can no longer support the family since I used to play a significant supportive role in terms of finances. He ends up overworking so that he can assure my good care as well as that of the children. In selected cases, TBI affected families usually cope up significantly, but face incidences of instability that require emotional support. Currently, it is hard for me to sustain social links since there is limited time to visit my family members, take part in their leisure activities like partying, and other outdoor activities. Furthermore, there are restrictions on taking part in community activities that range from festivals, racing, sports club, universities recreational activities, to entertainment events. According to investigations by ABI conducted in small group discussions, most people with TBI lost family relationships. This forms the most devastating moment in family members’ lives. This is clear in my case since friends are drastically reduced as compared to the prior periods when I used to be in good health. This is attributed to the fact that I cannot engage in activities they do hence adding little value to the association we used to have (Schneidert, Hurst, Miller &Ustun, 2003, pg. 212). Additionally, correspondents in the research faced change in individual goals and expectations in the social operations based on the disability creating a range of psychological distortions like despair, reliance, diligence. There is that feeling of expression when it concerns emotions and feelings. Such psychological disorders affect family members apart from friends and other social links. This is because there is impairment in the normal functioning of the body structure that in turn alters mobility, reduces physical activities, and societal involvement. Community and Environmental Challenges As a result of TBI, I face many challenges with regard to interaction with elements of the environment. From research carried out on components of the environment, it is clear that apart from the known personal belonging and the house, the following elements are part of the environment an individual interacts with: employment, the society, governmental and community services, health services, technology, equal opportunity and political orientations (Hughes, Sinha, Higginson, Down & Leigh, 2004, pg. 65). Each of these environmental aspects affects my daily operations and the larger social role with regard to my abilities and individual disadvantages at different degrees. Due to TBI, I can no longer carry out individual activities like cooking, laundry, dressing, taking a bath, and even eating. The limitations go beyond the mentioned indoor activities to outside operations. Similarly, researchers into this field indicate that access to the health and disability services is imperative in tackling challenges associated with TBI. There is a range of organizations in Australia that can help me access specialised health service to manage my condition. Such organizations are geared towards reducing incidences of physical, psychological and emotional disorientation among patients suffering from TBI. They also get involved in educating society on the responsibility they should play in helping persons with disabilities to lead a normal life. It is evident that because of TBI, my life has to transform considerably. This is because of the many physical and psychological distortions resulting from the complication. Daily activities like employment and household chores suffer the most effects from this disability. The nervous system affected during the accident is central to all normal functions of the body. Since coordination has been altered, i face changes in social interactions, reduced daily activities and leisure engagement (Gray, Hollingsworth, Stark & Morgan, 2008, pg. 447). Everything I used to do including eating, showering, and going to the toilet, spending time with my husband and teenage boys, meeting my relatives, working and interacting with friends was changed. I do not go to work anymore, and do not meet my friends every week as I used to. I no longer have the same kind of food and meals, my meals time have changed, and I do not go wherever I wanted as I used to before. To improve my daily life in this condition, it is critical that I make changes through adoption of new strategies that can alter my lifestyle. However, some of these strategies may not meet all the solutions to the difficulties I am undergoing, especially when it comes to environmental barriers. Most of them will change my emotional and cognitive disposition to be more positive and receptive to the condition I am facing due to the TBI. Self-Concept The move to rehabilitate patients so that they learn strategies and skills to self-manage their disability could be improved through increased patient self-concept. This usually comes after the onset of a disability. In most cases, patients with disabilities experience reduced confidence in their capabilities, and withdraw from difficult activities. Increasing self-concept will consolidate their beliefs and opinions about their identity and skills to fight their diseases. I had a decreased self-concept after I was told that I was suffering from TBI. I did not know what I would do to live with such a disease or what would happen to me. However, after relaxing and talking to my husband and children I started to resist this feeling and force myself to gather what I have left in me and to do whatever I can to enhance quality of life of my family. My self-concept became poorer after the accident and having the TBI (Persson & Ryden, 2006, pg. 33). Therefore, most of my other psychological aspects were changed and negatively affected. Body Image People who experience the effects of ABI such as physical limitations and restricted mobility can become overweight. Body image refers to the way people think, perceive and feel about their body. Body image is one of the factors which affect patients’ social interaction and behaviour. When patients become overweight, their beliefs and attitudes about their body become more negative (Zomorodi& Foley, 2009, pg. 7). Therefore, they start to withdraw from social situations and refuse to confront others. Although I gained more weight, I knew that I could reduce my weight to have a good shape. Moreover, my family supported me to believe that it is not the body shape which makes an individual. Self-Esteem When patients with disability believe that having a disability means that their worth is lessened, they withdraw from the world and live in the world of their disease. Different factors such as social support, severity of disability or illness and family status affect patients’ self-esteem (Dahl, 2002, pg. 213). When I first knew that I suffer ABI I thought that I will no longer be independent; I had low self-esteem. I did not have any motivation to join any rehabilitation programs or social support groups because I had not been in such a condition. I tended more to withdraw from the world and live alone with my illness because I had low self-esteem. However, my family supported me, showed me how much they needed me, increased my self-esteem and made me believe that I have many strengths and skills. Pity Although pity sometimes enhances people’s attitudes towards persons with disability, pity is the wrong reason for doing so. That is, Pity fosters negativity; because negative aspects of the condition are emphasized and magnified, rather than the positive aspects and enormous potential of the individual's life (Rao, Rosenberg, Bertrand, Salehinia, Spiro, Sandeep, Rastogi, Noll, Schretlen, Brandt, Cornwell, Makley& Miles, 2009, pg. 421). Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person. Therefore, I always, when I feel pity in the eyes of people, prefer to withdraw from meeting them, and raise fears and concerns in me. Pity promotes charity rather than inclusion because people with disability should believe in their abilities as well not just trying to meet the needs. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society. Motherhood Tailoring nursing care plans and making decisions related to patients’ health is best done when avoiding paternalism. Practicing paternalism deprives patients from expressing their needs or their rights because the decision making process becomes the property of health care professionals only. Nurses would practice paternalism when they believe that they know what is best for patients; thus they make decisions on their behalf. Unlike paternalism, empowering persons with disability to rationally and autonomously make decisions related to their health and life issues would promote their quality of life and health outcomes. Therefore, nurses should not practice paternalism, but educate patients to express their needs, opinions and wishes (Eriksson, Tham & Fugl-meyer, 2005, pg. 47). Self-Efficacy The first motive for effectively participating in activities of rehabilitation programs is patients’ self-efficacy. Self-efficacy refers to how people think and perceive their own skills and abilities in achieving tasks, learning new skills and participating in unfamiliar situations. Patients having strong perceptions about their skills and abilities will have higher motivations to join rehabilitation programs and effectively participate in its activities (Rao, Rosenberg, Bertrand, Salehinia, Spiro, Sandeep, Rastogi, Noll, Schretlen, Brandt, Cornwell, Makley& Miles, 2009, pg. 422). Nurses have a significant role in increasing patient’s self-efficacy by providing information about the strengths of their real capacities and the easiness of the tasks required. In rehabilitation programs, nursing care staff should provide patients with different means to enhance their self-efficacy in order to assist them to move well on the path to independence. Independence The main objective of a rehabilitation program is to enable people with disability to achieve independence to a great extent. For patients with disability to be independent, they should be able to perform their daily activities without personal assistance and make decisions by themselves (Eriksson, Tham & Fugl-meyer, 2005, pg. 43). The patients’ journey to be independent should involve step by step training and learning about their disease and health conditions and strategies to tackle daily challenges. However, patients should reach independence while still being able to share and live with others. Nurses have a significant role in rehabilitation programs to increase patients’ independence by providing education sessions that equip them with daily strategies. Read More