families living with chronic illness and disability pdf free

families living with chronic illness and disability pdf free

However, a critical incident in life and living occurs when individuals and families are "put to the test," and given a chance to practice what they preach or learn what they need to know, and translate beliefs into action. Some individuals and families make such promises based on experience while others have nothing on which to base their decision. These are beliefs that make people feel good about their humanity and create a frame of reference within which they can interpret the world around them.

A major confrontation occurs when expectations are not met, needs are not fulfilled, and dreams are either unattainable or shattered. Families, therefore, are "put to the test," and are given a chance to translate previously held beliefs into expectations that are hopeful as well as realistic. When these beliefs are challenged and tested by the reality of illness or disability, families are often faced with an opportunity to have their beliefs validated or recognize that their beliefs may have been untested myths.

Illness and disability have the potential to challenge familial belief systems because of their complexity, intensity, and multidimensionality. These characteristics force families to not only examine their beliefs and value systems, but also to make major structural adjustments to accommodate the emerging needs of the family member who has experienced the illness and disability and must live with its life-altering consequences.

This process is often the cause of individual and familial distress. The nature and intensity of this chronic stress has three important determinants. The first is the magnitude of the changes required of the patient and family members in their day-to-day activities and in the way they relate to one another.

The changes required to optimize the health and well-being of the patient in the face of the chronic disease vary widely because of the differences in the demand characteristics of each disease and the particular challenges it brings to the family Holland, The second determinant of the level of stress generated by the illness is the capacity of the patient, within the circumstances of the family and their approach to life, to make these changes. Distressed household members are less able to provide support arid may also need assistance Helgeson, Finally, the availability of medical assistance and the community resources for support of people with chronic disease can mitigate or exacerbate the stress of illness p.

Most health and human care systems do not have the same perspective, agendas, or goals as the family and are not primarily designed to meet their changing and emerging needs. This lack of "common ground' often adds to the stress experienced by the family forced to let go of a member, as well as renegotiate a relationship with that individual who is not exactly the person they knew prior to the onset of an illness or disability.

In reality, however, nothing in life will beexactly the same and often families must settle for what is realistic compared with the ideal situation. Discussing adjustment to health loss, Zemzars said, "a person can never fully return to his or her pre-illness state of health" p.

This does not mean that gains cannot be made or new goals attained or approximated. It does mean, or at least imply, that in many situations all of the losses cannot be fully regained even if this is the driving force and expectation of the family or the health care team.

For some families the only goal is to be exactly as they were prior to the onset of the condition. The result is that families can be traumatized and put at emotional and Perspectives on Illness and Disability 11 physical risk in some hospital and health care environments that may be far from hospitable or caring. From this point of emotional desolation, families are launched into a potentially unending nightmare that may cover weeks, months, years, or a lifetime.

This is an extremely lonely and isolating time that demands meaningful as well as frequent support and ongoing stabilization. This should be a point of major importance and concern for health care and human care workers and systems because some families and family members may never be able to move beyond being caught in the vortex of the illness and disability storm and having to live with the ongoing debris from the fallout.

Anyone who has borne witness to the transformation of a life or the reality of the loss of a loved one in a trauma center or hospital can attest to the aloneness and complexity that are often characteristics of these environments.

Often they are not family friendly, and by default can intensify pain and suffering rather than alleviate them. At this point, support, caring, relevant interventions, and helpful information are essential in meeting family needs. Mow families learn about the condition and how well they understand the changes they are undergoing can be factors in reducing or increasing distress. Focusing on this process, Garwick, Patterson, Bennet, and Blum stated: The diagnosis experience is a unique and pivotal one for Families.

Since the lime of diagnosis is visually a crisis event for the family, clinicians need to break the news in a way that facilitates the family's adjustment to the news, as well as their ability to care for their child. Whenever possible, clinicians need to plan the setting, assess family background variables e. This process of pacing and fitting the information process to the particular needs of the family increases the likelihood that the family caregivers will be able to hear important information p.

A flawed and often convenient presumption made by some insurance companies, managed care, health care, and rehabilitation systems is 12 Family Dynamics in Illness and Disability that somehow, and at some time, the family is going to be willing and able to bind its resources and respond to role changes, demands, and expectations in order to facilitate the health and emotional care treatment and rehabilitation of a family member.

A question to ask is for whose convenience is this? Or is this just a means of shifting responsibility rather than sharing and partnering? It is often easier to abrogate responsibility and expect others to fill the voids of an inadequate system rather than making the needed changes and innovations.

Rocchio commented on the erosion of financial supports and the shift of expectations to the family: Because of managed care constraints, family services that were once a reimbursable expense now have been virtually eliminated. As a result, rehabilitation professionals face a daunting challenge in training families to manage this responsibility themselves.

Insurance carriers are all the more eager to bill services under psychiatric benefits, which traditionally have low capitation, than to provide extended neurorehabililation which will assist family members and individuals with brain injury to attain better outcomes and quality of life pp. Weihs, Fisher, and Baird commented on the importance of the family and home environment: Because disease management behaviors occur primarily in the home, where they involve and are affected by family members, the social or ecological perspective suggests that interventions to improve disease management should actively address the complex social environment of the home.

A familyfocused approach is likely to maximize intervention effectiveness, whether or not other family members are directly involved in the health behavior that the intervention is designed to change p.

With this awareness and responsiveness, these professionals should also come to understand that the success or failure of structural adjustments in the family and its members is often determined by the pre-injury lifestyle of the family. Unfortunately, most families do not prepare themselves for the possibility of any illness or disability that may challenge or erode their beliefs, values, and resources. Families are often forced, consequently, to be reactive to these medical events because they may not have based their own life expectation on a realistic frame of reference related to the total life and living Perspectives on Illness and Disability 13 experience.

Health care professionals should also gradually realize that most families are vulnerable because they live their lives based upon frequently untested belief systems and are often shocked when their beliefs and expectations are not validated by reality which often relates to the success or failure of medical intervention. If the family is to negotiate successfully this transition from hope to acceptance, then health care professionals should attempt to be on the same wavelength as family members.

But some health and human care systems do not have the same agendas or goals as the family and may not be primarily designed to meet the changing and emerging needs of families. Connell and Connell reinforce this point when they state: "Obstacles to coping and recovery exist if medical personnel perceive the illness differently from the patient or the family" p.

The identified patient may be a family member whose life has been characterized by chaos and dysfunction, whose lifelong behavior prior to the onset of the illness or disability may have had a central role in causing the family distress and problems.

In some cases these behaviors may have been a factor in the cause of the illness and disability as well as other familial losses and traumas. For example, the neglect of a dysfunctional mother or father may have resulted in a severe burn lor a child who was left at home alone. How does one repair the mind, body, and spirit while living on a daily basis with the life-long effect of poor judgment or inappropriate behavior?

This is especially so when the family realizes that ongoing involvement is a process of reliving what has occurred and experiencing more guilt and blame, and is, in effect, more of a burden than an opportunity. This point was illustrated by the following statements by persons faced with the transformation of a family member consequent to the occurrence of an illness and disability: You were supposed to be watching the children, and not racing a boat on the lake. It is all your fault they got into our boat and you were too cheap to buy the extra life vests.

One dead and one crippled for life! How can we ever live with this? You were drunk and three of our children were burned to death and the other two will spend years in surgery. It does not matter that you have stopped drinking now! If you did not divorce me, our son would not be lying here dying. I would never have let him have a motorcycle and you did. God has punished you. What kind of a grandmother are you? I left my only child with you and he almost drowns in the lake.

Now he is very limited and my life is ruined. Are you going to care for him the rest of his life? Note the grandmother said "yes" and has done this for 34 years.

I told you that we should have a medical plan. Now what are we suppose to do? You quit your job to find yourself and in the process you have destroyed the family and all of our futures. Defining family resilience in the context of change and crisis, McCubbin and McCubbin stated: "Characteristics, dimensions, and properties of families which help families to be resistant to disruption in the face of change and adaptive in the face of crisis situations" p.

Hawley and Dehann presented resilience in a developmental context: Family resilience describes the path a family follows as it adapts and prospers in the face of stress, both in the present and over time. Resilient families respond positively to these conditions in unique ways, depending on the context, developmental level, the interactive combination of risk and protective factors, and the family, shared outlook p.

Hawley and Dehann also emphasized the importance of context in understanding how families will respond to stressful events: "Therefore it is impossible to make assumptions or predictions based on the knowledge of certain events, without understanding how that event interacts with other life circumstances" p.

In order to better understand and cope with the complexities related to intense and pervasive losses, moreover, changes that are consequent to many illnesses and disabilities could be thought more as conditions of living which, in turn, will give families and society a chance to validate humanity and to cope gracefully and with dignity. Illness and disability have the potential to challenge familial belief systems because of their complexity, intensity, irrationality, and often long-term nature.

These characteristics force families to make major structured adjustments to accommodate the emerging needs of the family member who has experienced the illness and disability and must live with its life altering effects. Taylor, Kemeny, Reed, Bower, and Gruenewald stated: Most of the research that has related psychosocial factors to changes in disease states lias focused on negative psychological states, including depression, stress, grief, and loneliness.

Yet, philosophers and increasingly scientists as well have noted that exposure to trauma and other stressful life events do not inevitably lead to depression and despair. Such experiences can also act as catalysts for revaluation of one's goals and priorities and for reestablishing a sense of self. Increasing evidence indicates that the array of positive outcomes that may result from stressful events include finding meaning in life, developing better coping skills, enhancing one's social resources, establishing priorities, and recognizing the value of social relationships" p.

It is important to note, however, that existing service delivery systems and programs cannot meet all the needs of all families all of the time, and it is unreasonable to expect that they do so. What is not unreasonable is that families should have options, as well as opportunities to access those resources that can minimize the unnecessary frustrations, disappointments, and heartache, and facilitate the conditions of stabilization, acceptance, growth, survival, resilience, and recovery.

In some situations the advantage of a personal trauma is that it can create a vision based on hope and dreams, not just resignation. Holland makes this point when he reflected on his medical training: I did not really learn to appreciate the many dilemmas and strains for families with serious health problems until my personal life was directly affected. I was totally unprepared for the strains of coping with my family member's life-threatening illnesses p.

Such perspectives will give families an opportunity to operationalize their potential for resilience and assist family members in making the transition from loss to opportunity, from desperation to hope, and from frustration to acceptance. For a family living with the illness and disability experience, moreover, the treatment and rehabilitation process is a sequence of demands, unknowns, challenges, disappointments, as well as rewards.

Fortunately there has been an increase in the realization that the family has a vital role in negotiating this process and experience.

It is one of the main tenets of this book that it is a challenge to help families negotiate the periods of life, living, and loss without losing an affirmative perspective, purpose, sense of self, and soul. No burden is too great that it cannot be redefined and renegotiated. The goal is to have a meaningful destination and not be forced to make the journey alone. While the sudden onset of an anticipated or unanticipated illness or disability cannot be undone, nor can irrational causes such as violence be completely eradiated, the support needed by families to cope with an illness or disability certainly can and must be improved.

The key question to ask is where, when, and how families are going to find the support, role models, resources, encouragement, and skills needed to confront and manage the emotional and physical perils of the health care and rehabilitation process.

Added to this emergetice is a philosophy of assisting families in illness and disability situations that emphasizes an affirmation of the experience and a search for new opportunities. In , many problems related to living with illness and disabilities have been solved, other have been created, and some are yet to emerge.

As members of the health and human care professions, and as partners with the people and the families we work with and serve, it is necessary to understand, as well as appreciate the enormous challenge related to coping with illness and disability within a familial as well as a life and living context.

Achieving this balanced outlook while confronting the many realities associated with a serious medical condition is an endless struggle. In this chapter these realities have been conceptualized as perspectives, such as vulnerability, family challenges, stress, family change, and relationships with health care professionals.

In turn, these realities also become a foundation for family understanding, resilience, and affirmation. The mother's story in the following account identifies the many perspectives highlighted in the chapter, and illustrates how the awareness of changes, stressors, and one's vulnerability can stimulate understanding and resilience.

Both my husband and I have come from upper-middle class families of four children; he is the youngest of four boys, and I am the oldest child in my family.

Each of us has also compensated for a mild form of disability. Although I remember almost no direct conversations regarding my congenital hearing loss, I was taken regularly to Boston for tests and treatments. Probably before my school years I had taught myself to read lips and to stay close to people whose words I wanted to hear. Reading difficulties plagued my husband during his school years, and he received tutoring and summer help. He, too, was able to succeed in school, intellectually able to fine-tune his auditory learning abilities.

We each made a practice of "passing" as normal, choosing instead to work around the difficulties. Our courtship had been a relatively short ten months. Although we attempted to expand our family shortly after marriage, there were problems. Pregnancy difficulties over 6 years were the first problems that either of us had really come across that could not be resolved by working harder.

Action oriented, we tried all medical possibilities from tests to surgeries, capitalizing on the hope of each. We became closer than most couples, I think, but the closeness was largely nonverbal, as we rarely discussed our disappointments but could see it in each others' faces, especially during the many times in the hospital, sitting quietly, sometimes holding hands.

We considered it a sign of strength that 18 Family Dynamics in Illness and Disability we could maintain our optimistic facade, especially with others, even members of our families of origin who visited but were not overly attentive.

The most difficult trial during our early marriage occurred when I had to have emergency surgery for a ruptured ectopic pregnancy that could have ended my life. I was more concerned that the surgery ended not only the pregnancy but also our chances for having children at all. Aware only of a sense of defeat and questions about what to do with my life, I sought no further than my husband and the doctor for support for my bruised self-esteem.

Initiating adoption procedures and keeping busy did help to fend off some of the discouragement. The following fall another pregnancy began against all medical odds.

This pregnancy, like the others, got off to a troublesome start, and we didn't dare hope it would continue. It did continue, however, even without any medical intervention, for which we would later be glad. As each month passed, and we could feel the baby moving, we became more and more sure that our troubles were over. By seven months we felt as if we were home free, because even babies born that early often survived unscathed. We went through Larnaze classes together.

Those months in the last half of the pregnancy will probably always be remembered as our happiest, closest, and most deliciously carefree with both of us wrapped up in the event to come. Beth's delivery was "medically unremarkable. Yet even as we congratulated each other and snapped a photo or two in the delivery room, we registered the silence of the staff that came only moments before the doctor told us what he had just discovered: Beth had been born with a meningomyelocele open spine.

The obstetrician was kind and gentle, putting his hand on my arm as he told us of the meningomyelocele. He told us nothing more, and rny strong biology background registered a thud in the back of my mind but did not connect. All I could ask was whether Beth would be all right, whether she would live, to which I received affirmative answers. On a maternal high, I found the nurses to be annoyingly businesslike and was glad to finally return to my room to make phone calls. My husband was back with me when we were told the baby would be sent by ambulance to Boston, and even then we assumed that Beth would be hospitalized for whatever was necessary and would come home later fine.

The pediatrician arrived and began the jumble of what was to be our introduction to spina bifida. Although I recall that he gave a long description of the many organs and functions affected by the condition, Perspectives on Illness and Disability 19 I remember little else except his kindness and brutal honesty. A voice in my head kept repeating, "My baby won't be like that," and I was worrying about my husband, who had also been up all night and was expected to accompany the baby to Boston.

My husband will never forget that trip to Boston, being asked whether to treat the baby- a decision, really, whether to let her live.

He was told she was paralyzed from the waist down, would never walk, and would be retarded if she lived at all- and then he had to return to me to go through it all again. With essentially no guidance from anyone, we were asked to make a decision regarding a child for whom we had waited for six years and about a condition we had never heard of until just hours earlier.

Coming to an agreement was only the first of many extreme difficulties, as we juggled our high value on this child against a future we could not begin to imagine. Beth's back was closed at the age of 24 hours. With this commitment I resolved that if she were to be disabled, at least I would see to it that she maximized every potential In those early days we did not cope; we existed. Minute followed minute and crisis followed crisis. We tried to keep up with our social life in an effort to maintain some semblance of an old reality, but I found those times dreamlike and irrelevant, because I was unable to think of anything but Beth and us.

My husband appeared to me to be intensely emotional, but he kept it in tight control; it was too big for us to discuss in anything but small snatches. Our families were in their own shock and did not know how to help. Nor did we know how to ask for help. Our mothers visited Beth and me in the hospital, and I was grateful, especially sensing that they were ill equipped to deal with the horror stories of others packed in around us at the nursery.

I at least had had a medical background and could better understand both the hope and the limits of care given in answer to the insistent beeping of monitors. Meanwhile, our siblings received contradictory misinformation and tended either to minimize or exaggerate the facts of Beth's condition.

Many people, family included, came to us with success stories about other children with spina bifida. Although I acknowledged their intent to help with hope, I also made a very conscious effort to put out of my mind these other stories, knowing that Beth was an individual and would be in her own way different from any others. Within days of Beth's birth, our entire value system changed abruptly.

All issues, problems, questions were related to matters of life and death. Nothing seemed more important than survival. Concurrently, the value we placed on friendship skyrocketed, as there seemed so few people who could even begin to understand what we were going through. I 20 Family Dynamics in Illness and Disability seemed to live at a layer many levels deeper and more vulnerable than ever before and became acutely sensitive, while at the same time attempting an incongruous facade of strength.

We learned quickly that others needed to be put at ease with us, because they felt inadequate to help. Most did not know whether to send us a baby gift or flowers for condolence, whereas what was really important was that they cared enough to send anything. As time went on, I found, and still find, more and more people with problems of many kinds turning to me for solace, because they know somehow that I have grown sensitive ears. In her first 18 months, Beth had nine operations, including brain surgery for a shunt and two revisions for the hydrocephalus that developed at three weeks.

She seemed to spend more time in he hospital than out of it. Two or three times when she had severe urinary tract infections, I opted to keep her at home and give her injections around the clock to avoid another hospitalization. Carrying out a relentless litany of medical procedures, equipment applications, exercises, treatments, and medication administrations, I have never ceased to be amazed at what one can learn to consider an ordinary part of life.

Part of what was most difficult was keeping track of the constant changes. When she first came home at the age of six weeks, I initially had little confidence in caring for this small girl. It felt as if she belonged more to the hospital than to us. The staff had been very supportive in teaching me, though, and by the end of the first year I had gained some considerable expertise. My life was lived more moment-to-moment than day to day, with a motto of, "Tomorrow may not be any better, but at least it'll be different," or, "At least I'll never be bored.

But by the end of the first year I had developed a technique I called "putting my worries on hold. I would then 1 act, 2 decide it was a false alarm, or 3 go back on hold until the next assessment. I was determined to "accept" her condition and to avoid foisting my hangups on her, and to the extent that even at my worst I have managed to keep her independence in sight as my first priority for her, I have been fairly successful in maintaining an attitude of optimism and open honesty.

Emotionally speaking, however, the first year was relatively easy, with numbness and denial carrying me along. My husband, meanwhile, pulled together after the initial weeks into a stable strength. His attitude is generally more pessimistic and fatalistic than my complementary optimist activism. To this day, he starts with Perspectives on Illness and Disability 21 the worst possibilities and works toward reality, whereas I look to the most hopeful, backtracking toward reality where we meet minds.

Although I do not entirely understand his ability to mentally analyze a problem and work toward a solution alone, I do see that this method works for him. Says he about problems, "I think about them alone, in the car, uninterrupted, and I break the cycle" of going round and round on the same issue.

On the other hand, he does not entirely understand my need to, as he puts it, "Sit around and talk about the same things. Concurrently, my husband was laid up with what was later diagnosed as a broken back, which could have left him a paraplegic as well. Both were in body casts at the same time.

It was then that I began to seriously doubt my ability to continue. We had also just begun Beth's program of intermittent catheterization primarily to avoid what we considered to be destructive surgery on her bladder. Although I became tied to the schedule and even the urologist was skeptical, Beth had far fewer infections. More tired than I ever knew was possible, I also felt especially lonely with my husband seeming to be someone else when he was on high doses of painkillers.

My life seemed to consist of nothing besides constant nursing duties, and I knew that I was not functioning at all well. Until this time I had had very little in the way of external support besides medical expertise and a few select baby-sitters on whom I depended heavily for some time out.

My husband and I have insisted on maintaining some semblance of a social life, with some time set aside for just the two of us. We have both found it essential to our sanity and to our marriage in spite of financial pressures and hassles in getting sitters.

We have had extraordinarily good luck with training students in high school or college. I hide nothing from them and describe what is involved to check their reactions before actually teaching them and putting them to work. For privacy's sake we have insisted on having only girls involved with the catheterization and find that once they have matured a bit beyond their own self-consciousness over puberty, they accept our medical regime matter-of-factly.

Through our Lamaze teacher I became involved with an organization of parents of special-needs children. I had, of course, met many other parents of disabled children and had had meaningful conversations at clinics, in hospital corridors, and occasionally on the phone, but there was no sense of continuity with these people who were not otherwise parts of our lives.

After a lecture sponsored by Parent to Parent on the subject of birth defects, I discovered a sense of warm, interested, understanding community spirit among the local parents in over an 22 Family Dynamics in Illness and Disability hour of conversation. The parents were as varied as the special needs their children represented. It was exhilarating to be face-to-face with a group of sane people who could cope something I very much needed to know how to do , people who were just as much in awe of my situation as I was of theirs.

Parent to Parent also helped open many doors to worlds of assorted resources. Even though I had since the beginning specialized in becoming an expert on the subjects of spina bificla and hydrocephalus from a medical standpoint, through the parent group I began to learn of consumer services, sources of adaptive equipment and clothing, and helpful hints to facilitate the translation of medical treatment into individual family living.

By the time Beth was two and a half, our lives had stabilized somewith my husband back on his feet and Beth home for a whole year without hospitalization. I went to an exercise class and became satisfyingly involved with Parent to Parent, matching families for phone support. With assistance through an Early Intervention program Beth had begun to walk with a walker and braces to the waist, and her developmental age was gaining on her chronological age.

During this time, we got a call from the adoption agency telling us that they had a three week old baby girl for us to pick up in just four days.

She was adorable and very much wanted, even so suddenly, but those first months were awfully hectic for me, because Lindsey had her own set of problems; colic from the start, pneumonia requiring hospitalization at the age of ten weeks, four months of incessant crying, and finally the discovery of her allergy to milk that lasted until she was over two years old.

Actually, now I am glad for these problems because they established immediately a place for Lindsey in our family, which might othenvise have tended to put aside her needs for Beth's, which still seemed so urgent. Always, even during the hardest times, I knew that Lindsey's assertive presence was beneficial to all of us, although I worried about whether she got enough attention.

I felt somewhat saddened and slightly cheated that Lindsey and I would never be as intimately involved as Beth and I had been. It was my husband who helped me see that I was over-involved with Beth, not that Lindsey was lacking my attention.

Both girls were thriving, Beth as the oldest, Lindsey with the attentions of a big sister. Once I gained some time and the distance that Beth's schooling provided at age three and a half, I was able to see our enmeshment more clearly. I had not been prepared for the sense of responsibility I would feel toward a child, perhaps even an able-bodied one.

The enmeshment had been understandably born out of our desires for a child and the related needs of this particular one. Enmeshment was also fostered by the system that taught me all the care and treatments. Perspectives on Illness and Disability 23 I once realized that I was expected to carry out nine hours of assorted treatments per day, while meals, baths, groceries, a social life, laundry, errands and recreation were to come out of the little remaining time.

The diluting effect of Lindsey's arrival had been very healthy. My husband's role and mine did not change a great deal, but they expanded instead to include more tasks, some of which were traded or shared. He spent many hours each week on the paper work and financial mixups of insurance, handicapped license plates, taxes, and the like.

By the time Beth was five and Lindsey two and a half, I was mired in depression. My previously optimistic ability to make the most of a hard situation had burned out in negative musings on how badly we would lose this game of life with a disabled child in spite of all the hard work.

To my credit, I knew even then that Beth's disability was far from the whole problem scapegoating , but I also knew that I needed professional help. I had read many times about the grief surrounding the birth of a child with defects, but the literature did not ring true for me. My life certainly included denial, anger, bargaining, depression, and acceptance.

But for me these were not milestones on a timeline, but were aspects of every day, sometimes every hour. Furthermore, there was little grief attached to the "expected baby.

Feeling 1 had failed myself, my husband, Beth, the family, and even society itself, what I really had lost was my whole sense of selfworth, which 1 defined in terms of what I could do. The most significant help came to me through a fine clinical psychologist who worked individually with me, primarily on the issue of selfesteem, helping me to better integrate my thinking with my feelings.

From the start he offered me respect, as if I had as much to teach him as he had to teach me, and he responded with compassion and human reactions, from time to time with tears in his eyes. His positive regard for me supported his assumption that I could grow through this, and that, indeed, I already had.

I was certain that I had crossed the line into insanity, wishing I could quietly evaporate. He got me an antidepressant, which helped me to go on and see that all of the overwhelming things I was feeling were, even in all their intensity, normal reactions to abnormal circumstances.

The counselor taught me a whole new perspective on worth and value, one that rested on who I am, not on what I do. From this viewpoint then, failures or disapproval could not change my value as a person. Crucial to the counseling was rny somewhat private but strong faith in God, a faith shared by the counselor but not by my husband.

Rigidly clinging to various misconceptions, I was less able to utilize effectively 24 Family Dynamics in Illness and Disability the resources of my faith. For instance, guilt was not an issue for me intellectually or even spiritually, because I believe in forgiveness. But emotionally I felt I deserved this disaster, not realizing I also had to forgive myself.

I learned about peace and pacing as well as about my own human limitations, and I relearned a sense I had had long ago, that there is something to be learned in every situation. Knowing I was doing the best I could under the circumstances, I could let God take over the responsibility for the end results and put aside long-term worries. The counselor helped me gain a perspective, a broader sense of time and meaning for my life.

Contemplating the biblical concept of unconditional love also helped bolster my sense of self-esteem. Healthcare Administration. Public Health. Other Specialties. Assessment Diagnosis and Clinical Skills. Administration Management and Leadership. Ear, Nose, and Throat. Internal Medicine. Maternal, Neonatal, and Women's Health.

Primary Care. Brain Injury. Living and Working with Chronic Illness. Living Well. Multiple Sclerosis. Parkinson's Disease and Movement Disorders. Spinal Cord Injury. Women's Health. Daily Nurse Minority Nurse. Buy directly from Springerpub. Double click on above image to view full picture. Families Living with Chronic Illness and Disability. Author: Paul W. Qty: Add to Cart. Also Buy From: Amazon.

Buy eBook: Amazon Kindle iBooks. Making promises that they will never leave each other no matter what challenges, changes, or traumas occur. Some individuals and families make such promises based on experience while others have nothing on which to base their decision. Hoping that because they have been self-sacrificing for their children, the children in turn will be equally devoted to them when they are elderly and in need.

Living a healthy life style as a means to preventing and or eliminating all illness and disability for themselves or their family. Relying on laws to prevent crimes of violence that could result in personal or familial disability or loss. Believing that medical resources will be accessible and improvement possible if enough funding is available and efforts made.

These are beliefs that make people feel good about their humanity and create a frame of reference within which they can interpret the world around them. A major confrontation occurs when expectations are not met, needs are not fulfilled, and dreams are either unattainable or shattered. Families, therefore, are put to the test, and are given a chance to translate previously held beliefs into expectations that are hopeful as well as realistic. When these beliefs are challenged and tested by the reality of illness or disability, families are often faced with an opportunity to have their beliefs validated or recognize that their beliefs may have been untested myths.

Illness and disability have the potential to challenge familial belief systems because of their complexity, intensity, and multidimensionality. These characteristics force families to not only examine their beliefs and value systems, but also to make major structural adjustments to accommodate the emerging needs of the family member who has experienced the illness and disability and must live with its life-altering consequences.

This process is often the cause of individual and familial distress. Chronic disease is a long-term stressor for both the patient and his or her family members. The nature and intensity of this chronic stress has three important determinants. The first is the magnitude of the changes required of the patient and family members in their day-to-day activities and in the way they relate to one another.

The changes required to optimize the health and well-being of the patient in the face of the chronic disease vary widely because of the differences in the demand characteristics of each disease and the particular challenges it brings to the family Rolland, The second determinant of the level of stress generated by the illness is the capacity of the patient, within the circumstances of the family and their approach to life, to make these changes.

Distressed household members are less able to provide support and may also need assistance Helgeson, Finally, the availability of medical assistance and the community resources for support of people with chronic disease can mitigate or exacerbate the stress of illness p. Most health and human care systems do not have the same perspective, agendas, or goals as the family and are not primarily designed to meet their changing and emerging needs.

In reality, however, nothing in life will be exactly the same and often families must settle for what is realistic compared with the ideal situation. Discussing adjustment to health loss, Zemzars said, a person can never fully return to his or her pre-illness state of health p. This does not mean that gains cannot be made or new goals attained or approximated. It does mean, or at least imply, that in many situations all of the losses cannot be fully regained even if this is the driving force and expectation of the family or the health care team.

For some families the only goal is to be exactly as they were prior to the onset of the condition. A familial transformation consequent to illness and disability and other traumatic life events often occurs when the family is least prepared. The result is that families can be traumatized and put at emotional and physical risk in some hospital and health care environments that may be far from hospitable or caring.

From this point of emotional desolation, families are launched into a potentially unending nightmare that may cover weeks, months, years, or a lifetime. This is an extremely lonely and isolating time that demands meaningful as well as frequent support and ongoing stabilization.

This should be a point of major importance and concern for health care and human care workers and systems because some families and family members may never be able to move beyond being caught in the vortex of the illness and disability storm and having to live with the ongoing debris from the fallout. Anyone who has borne witness to the transformation of a life or the reality of the loss of a loved one in a trauma center or hospital can attest to the aloneness and complexity that are often characteristics of these environments.

Often they are not family. At this point, support, caring, relevant interventions, and helpful information are essential in meeting family needs.

How families learn about the condition and how well they understand the changes they are undergoing can be factors in reducing or increasing distress. While in the process of doing the best job that they can, often under very difficult circumstances, health and human care professionals should keep in mind the profound impact of the information they provide as well as its implications.

The diagnosis experience is a unique and pivotal one for families. Whenever possible, clinicians need to plan the setting, assess family background variables e. This process of pacing and fitting the information process to the particular needs of the family increases the likelihood that the family caregivers will be able to hear important information p.

A flawed and often convenient presumption made by some insurance companies, managed care, health care, and rehabilitation systems is that somehow, and at some time, the family is going to be willing and able to bind its resources and respond to role changes, demands, and expectations in order to facilitate the health and emotional care treatment and rehabilitation of a family member. A question to ask is for whose convenience is this? Or is this just a means of shifting responsibility rather than sharing and partnering?

It is often easier to abrogate responsibility and expect others to fill the voids of an inadequate system rather than making the needed changes and innovations. Rocchio commented on the erosion of financial supports and the shift of expectations to the family:. Because of managed care constraints, family services that were once a reimbursable expense now have been virtually eliminated.

As a result, rehabilitation professionals face a daunting challenge in training families to manage this responsibility themselves. Insurance carriers are all the more eager to bill services under psychiatric benefits, which traditionally have low capitation, than to provide extended neurorehabilitation which will assist family members and individuals with brain injury to attain better outcomes and quality of life pp.

Because disease management behaviors occur primarily in the home, where they involve and are affected by family members, the social or ecological perspective suggests that interventions to improve disease management should actively address the complex social environment of the home. A family-focused approach is likely to maximize intervention effectiveness, whether or not other family members are directly involved in the health behavior that the intervention is designed to change p.

With this awareness and responsiveness, these professionals should also come to understand that the success or failure of structural adjustments in the family and its members is often determined by the pre-injury lifestyle of the family. Unfortunately, most families do not prepare themselves for the possibility of any illness or disability that may challenge or erode their beliefs, values, and resources.

Families are often forced, consequently, to be reactive to these medical events because they may not have based their own life expectation on a realistic frame of reference related to the total life and living experience. Health care professionals should also gradually realize that most families are vulnerable because they live their lives based upon frequently untested belief systems and are often shocked when their beliefs and expectations are not validated by reality which often relates to the success or failure of medical intervention.

If the family is to negotiate successfully this transition from hope to acceptance, then health care professionals should attempt to be on the same wavelength as family members.

But some health and human care systems do not have the same agendas or goals as the family and may not be primarily designed to meet the changing and emerging needs of families.

Connell and Connell reinforce this point when they state: obstacles to coping and recovery exist if medical personnel perceive the illness differently from the patient or the family p. Unfortunately, not all family members who are ill or disabled are loved ones. The identified patient may be a family member whose life has been characterized by chaos and dysfunction, whose lifelong behavior prior to the onset of the illness or disability may have had a central role in causing the family distress and problems.

In some cases these behaviors may have been a factor in the cause of the illness and disability as well as other familial losses and traumas. For example, the neglect of a dysfunctional mother or father may have resulted in a severe burn for a child who was left at home alone.

How does one repair the mind, body, and spirit while living on a daily basis with the life-long effect of poor judgment or inappropriate behavior? This is especially so when the family realizes that ongoing involvement is a process of reliving what has occurred and experiencing more guilt and blame, and is, in effect, more of a burden than an opportunity.

This point was illustrated by the following statements by persons faced with the transformation of a family member consequent to the occurrence of an illness and disability:. You were supposed to be watching the children, and not racing a boat on the lake. It is all your fault they got into our boat and you were too cheap to buy the extra life vests.

One dead and one crippled for life! How can we ever live with this? How can I ever forgive you? You were drunk and three of our children were burned to death and the other two will spend years in surgery.

It does not matter that you have stopped drinking now! If you did not divorce me, our son would not be lying here dying. I would never have let him have a motorcycle and you did. God has punished you.

This content was uploaded by our users and we assume good faith they have the permission to share this book. If you own the copyright to this book and it is families living with chronic illness and disability pdf free on our website, we offer a simple DMCA procedure to remove your content from our site. Start by pressing the button below! Springer Series on Rehabilitation Myron G. Power CRC. Riggar, EdD, Dennis R. Carolyn L. Vash, PhD, and Nancy M. Myron G. Eisenberg, PhD, Robert L. Eisenberg, PhD, Lafaye C. Sutkin, PhD, and Mary A. Eisenberg, PhD, et al. Paul W. Free download compatibility pack for office 2007 to 2010 is the author of numerous articles, books, and book chapters on the topic of the family and disability. His speeches and workshops, on both national and international levels, have also focused on the roles of the family on the treatment and rehabilitation process. Arthur E. He was awarded a B. Dell Orto is families living with chronic illness and disability pdf free licensed psychologist and Certified Rehabilitation Counselor whose academic and clinical interests relate to the role of the family in the treatment and rehabilitation process Dr. Dell Orto has given many presentations and workshops focusing on the needs families living with chronic illness and disability pdf free families living with illness and disability. families living with chronic illness and disability pdf free PDF | On Jan 1, , S.R. Alvani and others published Living with chronic Individuals, who obtain a chronic illness or disability, face a variety of major experiences that individuals and families attribute to the illness that may tax situations in a more realistic manner, we can free our self from a lot of. Buy Families Living with Chronic Illness and Disability: Interventions, Challenges, and Opportunities eBook features: Read with the free Kindle apps (available on iOS, Android, PC & Mac), Kindle E-readers and on Fire Tablet devices. Families Living with Chronic Illness and Disability: Interventions, Challenges, and Opportunities (Springer FREE return shipping at the end of the semester. Families Living with Chronic Illness and Disability: Interventions, Challenges, Ship This Item — Not Eligible for Free Shipping It would be well worth reading for anyone in healthcare working with patients with disabilities and their families. Families Living with Chronic Illness and Disability|To help families Perspectives on Illness and Disability; Children with Disabilities and the. chronic illness care: Some patients with chronic illness have complex self-​management mild disabilities (the majority of adults with chronic illness) and in Chronic Illness | 15 free Web site-hosted PHR. Living with Diabetes.” Families. Mastering Family Challenges in Serious Illness and Disability. Given these “the long haul,” or “the day-to-day living with chronic illness” phase. Often. Springer Series on Rehabilitation Myron G. Eisenberg, PhD, Series Editor Veterans Affairs Medical Center, Hampton, VA T. Instant access to free PDF downloads of titles from the. Distribution with Chronic Disease: Public Health Action to Reduce Disability and Improve Functioning and with individuals or families living with one or more medical conditions. 1. New York's Social Security Disability attorneys. Over 20 years of experience. In her first 18 months, Beth had nine operations, including brain surgery for a shunt and two revisions for the hydrocephalus that developed at three weeks. The authors explore how society reacts to women with chronic illness and how women living with chronic illness cope with the uncertainty of their bodies in a society that desires certainty. These emotions are often a result of decisions made in times of crisis. How should people be selected for treatment? With this commitment I resolved that if she were to be disabled, at least I would see to it that she maximized every potential In those early days we did not cope; we existed. We would like to thank those men and women who are living the family experience with disability, are role models, and who have contributed their personal stories which have not only enriched this book, but have also brought reality to the theoretical material presented in this volume. Eisenberg, PhD, Robert L. Until this time I had had very little in the way of external support besides medical expertise and a few select baby-sitters on whom I depended heavily for some time out. Again, self-management contributes to the building of self-esteem. Cancer and the family, pp For an adolescent who is coping with the effects of a disability and who may be less self-assured, there is additional difficulty in resolving questions emerging from maintaining self-esteem. families living with chronic illness and disability pdf free