It is estimated that 20% of all US children have a chronic illness or disability, and 10% have problems that create some type of caregiving need. With numbers this high, it begs the question - what implications does illness have on the family unit and its relationship with society?
Improvements in technology and doctoring have created higher expectations and a heavier reliance on medical care throughout society. As a result, when someone announces that they are ill, others tend to think of their hospital or their doctors as their chief care givers. In reality it is the family unit that acts as the person’s primary caregiver. As we have discussed, the family is a personal experience, but it is also part of a larger social structure. Therefore, when a family member becomes ill, it is not simply a personal experience and struggle for that person to deal with. Instead, it is an experience shared by all those in the family unit. It changes both interactions within the family, as well as those between the family and its outside community. Therefore, it affects various aspects of their social life including their job, relationships with friends, and most importantly – their family! Overall, sickness is a significant source of change for families, and thus we will be examining the various ways in which illness impacts the family as well as its relationship with society. There are a few theoretical perspectives that are especially useful when examining this topic, including family systems theory and life course theory. In addition, feminist theory can be addressed as we look into gender roles in the midst of illness. We will also look at the specific problems created by stigmas attached to particular illnesses, especially mental disease or disability, as well as the issues surrounding potentially terminal and terminal illness. In addition, considering the family’s connection to society we will discover what resources exist to support families as they struggle with this issues! Overall, it is important first to recognize the many changes and stressors that are created by the arrival of illness in the family. Families and family members all react differently to this transition as they develop coping responses, and it is imperative to remember that all members of the family experience their loved one’s illness in different ways. Some of the most difficult stressors include…
• Uncertainty and fear regarding the family member’s condition and prognosis
• Changes in daily routines due to the limitations of the sick member, as well as due to the new demands of treatment
• Emotional strain, including feelings of anger, sadness, guilt, anxiety, or depression
• Understanding the illness, its implications, and treatment
• Role reassignment –according to family systems theory, a medical condition is a force that can throw the family system in to disequilibrium. As a result, responsibilities and roles must be reorganized in an effort to gain this balance back among the family system as well as unto each individual family member. Communication patterns are also in need of similar reorganization.
• Shifting of family expectations of behavior
• Working to give the sick family member as much independence as possible
• Enormous financial strain, often worsened by being uninsured or underinsured
• Learning new and important skills, such as how to use machines or give medications, in order to administer at-home-care
• Scheduling and time management issues
• Making important medical decisions
In the end, all of these added stresses on family life can lead to secondary results such as sibling conflict, poor school performance, social isolation, or marital conflict. Health is an expectation in society, and illness deviates from this “norm”. As a result, families must learn to function in new ways and cope with the personal and societal implications of the illness. The following youtube clip tells the story of the Wagner family, a married couple with two young boys who found out when their younger son Timothy was two that he had Muscular Dystrophy. It gives several examples of how having a son with a chronic illness has altered their lifestyle, including the many stresses that they have had to learn to deal with. It also presents several coping mechanisms, such as Timothy’s mom’s decision to emphasize his capabilities rather than his inabilities in order maintain an attitude of optimism. In the end, they show how learning to deal with chronic illness is a day-by-day task that takes a toll on every family member is unique ways.
After reading this entry and watching this clip, here are some things to think about as we embark on a discussion of these topics…
1. In the past, have you considered illness in the family to be a societal issue as well? Why do you think it is so often considered a personal issue to be dealt with within the family alone?
2. How do you feel about this list of stressors? Do any of them in particular strike you as more or less important/difficult for a family to deal with?
3. What was your reaction to the Wagner’s story? Do you think Timothy’s parents are handling the situation well? Why or why not? What might you do similarly or differently?
4. Is there anything regarding illness and the family that you identify with already? Any experiences that you have had with these stressors in your family? And as we continue the discussion throughout the week, think about ways in which you have dealt with illness personally or in your family (which includes fictive kin and friends as well) and how you can apply your experiences to the information presented.
"AAMFT Consumer Update Chronic Illness"
"Chronic Illness - Family Caregiving"
"Social Networks, Social Support and Coping with Serious Illness: The Family Connection"
"Caring for Siblings of Seriously Ill Children"
"Illness - A Family's Response"