Now that we have looked at how illness impacts the family unit in a multitude of ways, we have seen how society contributes to and in some ways defines the way illness is experienced by sufferers and their families. Ultimately this raises the question, how does society also support these families during times of illness? There are, in fact, many resources out there for people to use depending on factors such as the type of illness, the role of the care-givers, and the age of the family member who is ill. Below are some examples of the sources available for families to draw upon throughout society.
For families dealing with all types of illness, individual and group/family therapy can be an extremely useful tool for strengthening the family unit by encouraging effective communication. This can be accessed through psychologist, psychiatrists, or therapists and counselors either in the hospital or private setting. Another resource for those suffering from a variety of illness is support groups. Today support groups come in a multitude of forms – some people even receive immense confirmation from online groups and forums dedicated to the issues they are struggling with. These groups can be accessed through hospitals such as MGH. The link below is to an MGH website that is a portal for families and sufferers to support groups organized by illness/issues.
http://www.mghsocialwork.org/support-groups.html
On this site, you can see that MGH has support groups from cancer, addiction, crohn’s and colitis, pain management, transplant, AIDS/HIV, Cardiac, Diabetes, Mental Health, Parenting, Bereavement, Caregivers, Development Disabilities, Neurological Disorders, and even Smoking Cessation. They also provide a referral phone line to call for those seeking support groups for different reasons. The Family Ties Program in Massachusetts in another example as it offers a parent-to-parent support group for those with kids struggling with disabilities. Below is a quote from a chronically ill patient regarding what her support group means to her:
“I found a support group back home. It meets two times a month at a local hospital. I find that being able to sit down with other people who deal with the exact things I do, really helps. I can’t keep it all inside. I know that saying, ‘You take it out on your gut.’ Well, I already have gut problems, so if I keep my feelings inside, it will only make things worse. In a support group I don’t feel self-conscious when I talk about my illness, because these people understand.” (“Patient Education”)
There are other unique services for people to take advantage of that help with actual care-giving tasks, such as the Road to Recovery Program through the American Cancer Society. Road to Recovery offers transportation for cancer patients to and from treatment appointments. In Massachusetts, the Caritas Home Care program offers Clinical Services provided by professionals such as RNs, Therapists or Social Workers who can cover things such as wound care, IV therapy, or disease management. These services are covered by most insurance plans and Medicare. They also offer Private Pay Services which can cover anything from household chores to medication reminders, or even grooming and bathing.
Another huge medium for support is education. In order to feel empowered and able to understand your own illness or feel capable of caring for someone else’s, people need to be educated on what the disease is and how to tend to it. The American Cancer Society has a wide range of services that fall in the educational realm, including their I Can Cope interactive online education program about cancer and dealing with it. They also put out a Magazine/Catalog called “Tender Love Care” which has a variety of articles focused on supporting women struggling with breast cancer. The NC Association for the Education of Chronically Ill Children is example of a web-based organization that provides links to all types of information from that regarding specific illness to how to advocate for children with chronic illnesses in schools. They also run conferences and give scholarships to children suffering illnesses.
Finally, going back to the specific illnesses we looked at, there are also a variety of services (including some mentioned above) to support those dealing with mental or terminal illness in the family. A few examples of special support systems for these circumstances include The National Alliance on Mental Illness which is a huge resource that offers everything from education to links to resources in your community. They have several locations in MA, including one in Cambridge/Middlesex. Another recommendation for dealing with stigmas and the emotional struggles of mental illness is to join an advocacy group! NAMI is an organization that offers people the chance to partake in various social policy and advocacy bills and initiatives. Directgov is a website that provides information on how to access benefits such Carer’s Allowance for those suffering from or caring for someone with terminal illness. This is a really important resource to make sure everyone knows what they are entitled to from our society itself (ie our government and social support networks). And in addition, support groups and education as listed above are both pivotal for those dealing with mental or terminal illness in the family.
Ultimately, our society is an influence on the illness experience for families in a supportive way as well. They are a large number of resources out there for people to draw upon. However, when looking deeper in to how society supports families, the question must be raised regarding how accessible these are for people of all races, ethnicities, and socioeconomic statuses? For instance, the Private Pay Services listed above might be really necessary for a family who can not afford to pay anything outside of their insurance. Or, what about those who do not have insurance to begin with? Who do they turn to? It is known that those of lower SES and without insurance fair worse when dealing with illnesses like these, and I think it is important to realize that a lack of access to help and support is large reason why! Therefore, while mediums like the internet have made group networking and educational resources more available to all, there is still much work to be done for our society to be a true support for all families dealing with illness.
Questions to think about…
1) Has there ever been a time when you or a friend or relative has drawn upon one of these or a similar resource? Did you (or he or she) find it helpful? Why or why not?
2) Have you ever known anyone in need of resources like these that were unable to access them? How did that make you feel?
3) What do you think we can as part of society to help make these resources more available to all people?
“Parent to Parent Program”
http://massfamilyties.org/p2p/p2p.php
“In My Community: Day to Day”
http://www.cancer.org/docroot/COM/content/div_NE/COM_5_2x_Day_to_Day.asp?sitearea=COM
“Patient Education: Coping with Chronic Illness”
http://www.cc.nih.gov/ccc/patient_education/pepubs/copechron.pdf
“Caritas Home Care: Programs and Services”
http://www.caritashomecare.org/OPage.asp?PageID=OTH000051
“NCAECIC: Working for the Benefit of Student with Health Challenges”
http://www.ncaecic.org/Chronic-Illness-and-School-Information.php
“Directgov: Caring for Someone Who Is Terminally Ill”
http://www.direct.gov.uk/en/CaringForSomeone/DG_10035718
Saturday, May 1, 2010
Friday, April 30, 2010
Terminal and Potentially Terminal Illnesses in the Family
According to the American Cancer Society’s Cancer Facts and Figures for 2009, over 36,000 people in Massachusetts were diagnosed with cancer, and over 1.4 million were diagnosed across the United States. According to a 2006 study, 80 million people in the US are diagnosed with cardiovascular disease, and 864,500 die each year from this disease. In 2007, it was estimated that 14, 561 died from AIDS, and it is estimated that 280 people die of Parkinson’s Disease each week in the US.
These are just a few examples of the many diseases that are terminal or potentially terminal for all those we are diagnosed each year – and those numbers are somewhat disheartening. There are a variety of illnesses that cause families to have to deal with a terminal or potentially terminal prognosis, often a diagnosis that comes suddenly and unexpectedly. Due to the nature of these types of illnesses, they prove to be another example of sicknesses that come with extra stressors and difficulties for families to try and cope with.
One of these stressors is the complexity of trying to explain your illness to your family members. For children, they often ask question regarding why their parent or sibling got sick, if it is contagious, and if they are going to die? Often with younger children especially, their egocentrism at their age can lead them to think that the illness in their family is somehow their fault. And while this is a prevalent feeling among kids, even those in their fifties with dying parents have said they feel responsible. Therefore, it is crucial to reinforce continuously for kids, in to their adulthood, that terminal illness like cancer are no one’s fault! As of the last question, children are always going to ask what is going to happen to their relative, and while it may seem impossible, it is suggested to be honest and realistic with kids when you answer, because they will see through any fake optimism and only become more confused. Another huge issue when a parent becomes ill like this is the time and physical demand of the new treatment suddenly required in their already busy lives. One journal article says,
“Parenting demands a commitment to caring for others. However, the urgency of self-care demanded by life-threatening and debilitating conditions means that parents’ own requirements may have to be given priority over the needs of their children. Although many parents find a way of resolving this that feels satisfying to them, our experience suggests that many feel as though they are face with a seemingly irreconcilable choice of whether to response as parents or as patients.”
This is the unique situations of parents who become terminally or potentially terminally ill. Children who fall are already in a “need of care” place in their life, while parents who fall ill are in a “care-giving” point in life. Therefore, they struggle greatly over how to balance their own care with their childcare responsibilities.
Especially important is that terminal or potentially terminal diseases bring about a unique set of emotions and reactions to the diagnosis and treatment process. Family members must deal with trying to sort out their own feelings while still showing love and support to the member who has fallen sick. Looking at families with children with terminal illnesses, it is suggested that the ill child is encouraged always to express their feelings and emotions regarding their condition. In terminal cases, families often struggle with communication. No one wants to disrupt the equilibrium and show or say how they are feeling in fear of upsetting someone else, especially the one who is sick. However, a lack of communication is only harmful to the entire family unit, as it can create distance and isolation among members at a time when they should be striving to become closer and more solid in order to support one another through this process. As a result, even parents are encouraged to share with their children how they are feeling about the potential or imminent death of their child, because as hard as it may seem, being open with one another’s feelings is the best way to foster emotional healing and strengthen the family unit. Additionally, both the ill person and their family confront and daunting and uncomfortable sense of a complete lack of control and powerlessness. This can become extremely discouraging and defeating. As a result, families are also suggested to focus their energy on the here and now, and on creating happy memories and moments for the family to share.
In sum, terminal illnesses illicit an entirely different set of emotional reactions and coping mechanisms for family members because it includes the extra element of grieving. Grieving is a long and continuous process, and can take an enormous told on the emotional health of the family. While everyone copes and handles this type of news in his or her own individual way, there is a rather typical path of emotions that many people go through. It is suggested that people understand what these characteristic emotions are because it can help the ill member, the family, and friends to cope with the many foreign things they are feeling. There are four basic ones including:
• Shock and Disbelief
• Denial
• Anger and Grief
• Fear
The last emotion has several societal implications in that, as we have discussed in class, society tends to ignore the concept of death. People do not talk about it frequently, and therefore a natural and inevitable process has become an uncomfortable topic in our culture. This creates an even higher level of fear surrounding death. While terminal illness is not a natural way of dying, if our society was more comfortable with the topic overall, families would also be more willing to talk about their fears and issues regarding the potential death, and that would create a greater sense of camaraderie and support.
In sum, terminal and potentially terminal illnesses are unfortunately not uncommon, and they have the power to significantly shake the family unit. These types of illness come with an entirely different set of emotions surrounding grief that both the ill person and their family must learn to cope with, while also prompting several challenges regarding time management between care-giving and care-receiving.
Here is a link to a forum for people dealing with care giving and terminal illness. I thought this short conversation was really deep, and gave examples from real people of the many emotions that come along with terminal illnesss. If you want to read other conversations among people in these situations, you can viist the larger forum at (http://www.beyondindigo.com/forums/view_forum.php?id=20).
http://www.beyondindigo.com/forums/view_topic.php?id=248&forum_id=20
There is also a link to a Newsweek video here that tells the story of a few parents who were diagnosed with cancer while trying to raise their children. It focuses also on a program called PAACT at MGH here in Boston and how it helps families in these situations.
http://video.newsweek.com/#?t=1213998771&l=1377894848
For reflection:
1) What do you think about the added stresses of dealing with a terminal illness in the family?
2) Do you have any experience with this topic? If so, do you feel the information above is similar to what you dealt with? In what ways?
3) Do you feel the list of grieving emotions is accurate? Do you feel it is too general? Why or why not?
4) How do you think society encourages or discourages families who are trying to cope with terminal/potentially terminal illneses?
Sources
“CDC: Statistics and Surveillance: HIV/AIDS
http://www.cdc.gov/hiv/topics/surveillance/basic.htm
“Facts and Figured about Parkinson’s Disease”
http://www.associatedcontent.com/article/359115/facts_and_figures_about_parkinsons.html?cat=47
“Heart Disease and Stroke Statistics”
http://www.americanheart.org/downloadable/heart/1240250946756LS-1982%20Heart%20and%20Stroke%20Update.042009.pdf
“Cancer Facts and Figures 2009”
http://www.cancer.org/downloads/STT/500809web.pdf
Carmchael, Mary. “Whats Chemo, Mommy?”
http://www.newsweek.com/id/43353
“Children Dealing With Terminal Illness”
http://www.a-better-child.org/page/845446
Altschuler, J. and Dale, B. (1999) “On Being an Ill Parent.” Clinical Child Pyschology and Psychiatry. 4(1). 23-37
http://ccp.sagepub.com/cgi/content/abstract/4/1/23
These are just a few examples of the many diseases that are terminal or potentially terminal for all those we are diagnosed each year – and those numbers are somewhat disheartening. There are a variety of illnesses that cause families to have to deal with a terminal or potentially terminal prognosis, often a diagnosis that comes suddenly and unexpectedly. Due to the nature of these types of illnesses, they prove to be another example of sicknesses that come with extra stressors and difficulties for families to try and cope with.
One of these stressors is the complexity of trying to explain your illness to your family members. For children, they often ask question regarding why their parent or sibling got sick, if it is contagious, and if they are going to die? Often with younger children especially, their egocentrism at their age can lead them to think that the illness in their family is somehow their fault. And while this is a prevalent feeling among kids, even those in their fifties with dying parents have said they feel responsible. Therefore, it is crucial to reinforce continuously for kids, in to their adulthood, that terminal illness like cancer are no one’s fault! As of the last question, children are always going to ask what is going to happen to their relative, and while it may seem impossible, it is suggested to be honest and realistic with kids when you answer, because they will see through any fake optimism and only become more confused. Another huge issue when a parent becomes ill like this is the time and physical demand of the new treatment suddenly required in their already busy lives. One journal article says,
“Parenting demands a commitment to caring for others. However, the urgency of self-care demanded by life-threatening and debilitating conditions means that parents’ own requirements may have to be given priority over the needs of their children. Although many parents find a way of resolving this that feels satisfying to them, our experience suggests that many feel as though they are face with a seemingly irreconcilable choice of whether to response as parents or as patients.”
This is the unique situations of parents who become terminally or potentially terminally ill. Children who fall are already in a “need of care” place in their life, while parents who fall ill are in a “care-giving” point in life. Therefore, they struggle greatly over how to balance their own care with their childcare responsibilities.
Especially important is that terminal or potentially terminal diseases bring about a unique set of emotions and reactions to the diagnosis and treatment process. Family members must deal with trying to sort out their own feelings while still showing love and support to the member who has fallen sick. Looking at families with children with terminal illnesses, it is suggested that the ill child is encouraged always to express their feelings and emotions regarding their condition. In terminal cases, families often struggle with communication. No one wants to disrupt the equilibrium and show or say how they are feeling in fear of upsetting someone else, especially the one who is sick. However, a lack of communication is only harmful to the entire family unit, as it can create distance and isolation among members at a time when they should be striving to become closer and more solid in order to support one another through this process. As a result, even parents are encouraged to share with their children how they are feeling about the potential or imminent death of their child, because as hard as it may seem, being open with one another’s feelings is the best way to foster emotional healing and strengthen the family unit. Additionally, both the ill person and their family confront and daunting and uncomfortable sense of a complete lack of control and powerlessness. This can become extremely discouraging and defeating. As a result, families are also suggested to focus their energy on the here and now, and on creating happy memories and moments for the family to share.
In sum, terminal illnesses illicit an entirely different set of emotional reactions and coping mechanisms for family members because it includes the extra element of grieving. Grieving is a long and continuous process, and can take an enormous told on the emotional health of the family. While everyone copes and handles this type of news in his or her own individual way, there is a rather typical path of emotions that many people go through. It is suggested that people understand what these characteristic emotions are because it can help the ill member, the family, and friends to cope with the many foreign things they are feeling. There are four basic ones including:
• Shock and Disbelief
• Denial
• Anger and Grief
• Fear
The last emotion has several societal implications in that, as we have discussed in class, society tends to ignore the concept of death. People do not talk about it frequently, and therefore a natural and inevitable process has become an uncomfortable topic in our culture. This creates an even higher level of fear surrounding death. While terminal illness is not a natural way of dying, if our society was more comfortable with the topic overall, families would also be more willing to talk about their fears and issues regarding the potential death, and that would create a greater sense of camaraderie and support.
In sum, terminal and potentially terminal illnesses are unfortunately not uncommon, and they have the power to significantly shake the family unit. These types of illness come with an entirely different set of emotions surrounding grief that both the ill person and their family must learn to cope with, while also prompting several challenges regarding time management between care-giving and care-receiving.
Here is a link to a forum for people dealing with care giving and terminal illness. I thought this short conversation was really deep, and gave examples from real people of the many emotions that come along with terminal illnesss. If you want to read other conversations among people in these situations, you can viist the larger forum at (http://www.beyondindigo.com/forums/view_forum.php?id=20).
http://www.beyondindigo.com/forums/view_topic.php?id=248&forum_id=20
There is also a link to a Newsweek video here that tells the story of a few parents who were diagnosed with cancer while trying to raise their children. It focuses also on a program called PAACT at MGH here in Boston and how it helps families in these situations.
http://video.newsweek.com/#?t=1213998771&l=1377894848
For reflection:
1) What do you think about the added stresses of dealing with a terminal illness in the family?
2) Do you have any experience with this topic? If so, do you feel the information above is similar to what you dealt with? In what ways?
3) Do you feel the list of grieving emotions is accurate? Do you feel it is too general? Why or why not?
4) How do you think society encourages or discourages families who are trying to cope with terminal/potentially terminal illneses?
Sources
“CDC: Statistics and Surveillance: HIV/AIDS
http://www.cdc.gov/hiv/topics/surveillance/basic.htm
“Facts and Figured about Parkinson’s Disease”
http://www.associatedcontent.com/article/359115/facts_and_figures_about_parkinsons.html?cat=47
“Heart Disease and Stroke Statistics”
http://www.americanheart.org/downloadable/heart/1240250946756LS-1982%20Heart%20and%20Stroke%20Update.042009.pdf
“Cancer Facts and Figures 2009”
http://www.cancer.org/downloads/STT/500809web.pdf
Carmchael, Mary. “Whats Chemo, Mommy?”
http://www.newsweek.com/id/43353
“Children Dealing With Terminal Illness”
http://www.a-better-child.org/page/845446
Altschuler, J. and Dale, B. (1999) “On Being an Ill Parent.” Clinical Child Pyschology and Psychiatry. 4(1). 23-37
http://ccp.sagepub.com/cgi/content/abstract/4/1/23
Thursday, April 29, 2010
You Tube Video On Mental Illness!!
Sorry Everyone! I forgot to attach the link the previous post...
But here is a link to a youtube video of a short interview with a woman named Yvonne suffering from Schizo-Affective disorder and how stigmas affected the way she was treated by others.
http://www.youtube.com/watch?v=xD0_9Vawffw&feature=related
What do you think? Is it more poignant to hear it first-hand from someone who was excluded and feared by her friends and family? Why or why not?
But here is a link to a youtube video of a short interview with a woman named Yvonne suffering from Schizo-Affective disorder and how stigmas affected the way she was treated by others.
http://www.youtube.com/watch?v=xD0_9Vawffw&feature=related
What do you think? Is it more poignant to hear it first-hand from someone who was excluded and feared by her friends and family? Why or why not?
Mental Illness and Families - The Stigmas They Must Overcome
Mental illness is a complex and difficult issue for families to cope with. It is unique in that it comes with all the stressors and adaptations discussed above, along with a whole new set of challenges due to the nature of the illness and the way it is perceived by society. To begin with, mental illness brings a different set of initial reactions, emotions, and care giving tasks than physical illness. Many say that denial is extremely common for family members after learning of the illness, and many start to resent the behavior of their loved one because it is embarrassing, frustrating, etc. There is also a common sense of loss over the person they knew, which can also create distance between siblings or parents who were previously very close to him/her. Commonly families lack an understanding of the illness as well, especially at first. As opposed to a disease such as cancer, mental illness are talked about less and understood less by society. As a result, family members who are also care-givers can often feel overwhelmed or as though they have lost control due to a lack of education or knowledge. Therefore, finding resources both educational and supportive is vital in order to help the family gain a sense of security and discernment in their care-giving and their ability to deal with their family member’s behaviors, out bursts, episodes, hallucinations, etc. Another problem is that when some family members do not understand or are not supportive of the ill member, it can create great distance among immediate or extended family members who are looking to protect and defend him/her. Lastly, one of the most difficult aspects of caring for a mentally ill family member is that they often rebel against help or treatment, and can react in a hostile way even to close family members trying to help. Obviously, this can become extremely discouraging and frustrating for those trying to support and care for them, and again can begin to dishearten family members. The important thing though for family members to grasp and believe is that mental illness does not necessarily mean incapable or incapacitated! Therefore, there is always hope, not necessarily in recovery, but in learning and succeeding in life amidst the illness. As a result of all of these added stressors, these are some suggestions for coping and handling:
• Have a plan of action for times when acute symptoms may occur
• Learn to recognize signs of relapse so that it can be caught early
• Get ahead by seeing situations that may cause trouble (such as inviting a family member to a party who is uncomfortable with the situation) in order to take care of these things in advance
• Leave decisions such as stopping or changing treatment up to your doctors so that you do not have to make them on your own
• Do not expect everything to get better at once
• Do not agree with delusions, hallucinations, etc. Be realistic without being judgmental or harsh
These are just a few suggestions of how to manage care and emotional stress, and the number one suggestions for family members is to find support groups for families of mentally ill members. Because it is such a unique illness, it is really impossible for people to truly understand or say they understand unless they have or are experiencing it themselves. As a result, finding a group of people who genuinely do understand what you are going through is extremely helpful coping mechanism.
With all of the complications and struggles listed above, it is clear that mental illness is a particularly difficult sickness for families to care for and adjust to simply due to the nature of the behaviors and affects of the illness. Unfortunately though, on top of all of this, families and their sick member must deal with the various stigmas that society applies to mental illness. According to a study done by the National Mental Health Association on the causes of mental illness:
• 71% of people believe that mental illness is caused by emotional weakness
• 65% believe it is caused by poor parenting
• And 43% believed it is caused in some way by the individual
(“Mental Health Matters”)
In a medically and technologically advanced culture, it is really alarming that with all we know about the biological causes and working of mental illness, a significant number of people still hold on to these false ideas and beliefs. One study showed that mental illness “is one of the most highly rejected conditions, clustering with prostitution, drug addiction, and ex-convict status rather than with cancer, diabetes, and heart disease”. (The Consequences of Stigma for People With Mental Illnes: Evidence from the Social Sciences). I was amazed at the multitude of articles and resources I found regarding stigmas from a simple search on mental illness, but a study like this reveals why! The two are essentially connected in an extremely unfortunate and harmful way. Society stills sees mental illness in many ways as an individual weakness, and therefore does not validate it in the same way as other diseases. At the same time, there is also a stigma that creates fear around mental illness and those who suffer from it. Many people fear that all people with mental illness are violent, while the reality is that the majority do not suffer from violent behavior, and those who do are most commonly triggered by normal stressors such as being threatened. Therefore, society acts cautiously and even avoids those with mental illness due to a stigmatized fear of danger or aggressive behavior. In addition, mental illness caries the stigma of incompetence – meaning that people do not think people who suffer from this type of illness are ever capable of being responsible or holding professional positions. As a result, they end up being treated as second-class citizens who can not hold jobs or take on any type of liability. Again, in reality the majority of those who are mentally ill are capable of work, and their qualifications should be looked at the same as everyone else’s. There are of course mental illness that keep people form being able to hold jobs, but this is not the case for most and thus should be applied to this type of illness as a general problem (ie. stigmatized!)
Just as stigmas usually do – the stigmas attached to mental illness lead to common discrimination by society against this population. Those who suffer from these conditions are often denied employment, denied or receive inadequate insurance, are mistrusted due to fear, and are even rejected or isolated by their family and/or friends. This can then lead to unhealthy behaviors such as being unwilling to recognize or seek help and treatment for their condition due to fear or judgment or maltreatment.
In this way, we see how societal stigmas attached to this disease can both affect family life and the life and health of the person suffering from it. Families often isolate themselves out of fear of embarrassment or criticism of their family member, or even due to fear regarding the safety of their family member. This can be extremely harmful, and goes against all suggestions to help care givers manage their own self-care. Instead they need to remain active in their social circles, activities, and support groups. In the same way, people with mental illnesses can actually suffer physically from these stigmas if they discourage them from getting help or treatment.
In the end, as a society we need to start talking more about this issue and recognizing our false assumptions and fears regarding this disease. If this happens, society can become a support system for people with mental illness and their families rather than a threat or hindrance to their coping and recovery process.
In response to this subject:
1) Do you have any experiences with mental illness either in your family, your community, or among friends in which you have seen these difficulties arise?
2) What are your reactions to the statistics and opinion poles given above? Do you think you would have answered similarly?
3) In the same way, do you feel as though you have been well educated about mental illness, or does it seem like a foreign or untalked about issue in your life?
4) How do you feel about the stigmas society has applied to mental issues? Do you see how societal forces can, in this way, cause problems in the lives of sufferers and their families? Why or why not?
Sources:
“A Resource Guide For Families Dealing with Mental Illness” The NAMI Family Michigan Resource Guide
http://www.michigan.gov/documents/MDCH-MentalIllness-10AUG04_102671_7.pdf
Tasman, A., Fink. P. “The Consequences of Stigma for People With Mental Illness: Evidence from the Social Sciences” (2002). Washington DC: American Psychiatric Press Inc.
http://books.google.com/books?hl=en&lr=&id=gmCxeAw7-Z4C&oi=fnd&pg=PA87&dq=stigmas+of+mental+illness&ots=3jHMGAfhc8&sig=Gb3liSYqnaSy1QUsKJxtWleNJYs#v=onepage&q&f=false
“Stigma” – DuPage County Health Department
http://www.dupagehealth.org/mental_health/stigma.html
“Working with the Family: Impact of Mental Illness on Families”
http://www.pathways2promise.org/family/impact.htm
• Have a plan of action for times when acute symptoms may occur
• Learn to recognize signs of relapse so that it can be caught early
• Get ahead by seeing situations that may cause trouble (such as inviting a family member to a party who is uncomfortable with the situation) in order to take care of these things in advance
• Leave decisions such as stopping or changing treatment up to your doctors so that you do not have to make them on your own
• Do not expect everything to get better at once
• Do not agree with delusions, hallucinations, etc. Be realistic without being judgmental or harsh
These are just a few suggestions of how to manage care and emotional stress, and the number one suggestions for family members is to find support groups for families of mentally ill members. Because it is such a unique illness, it is really impossible for people to truly understand or say they understand unless they have or are experiencing it themselves. As a result, finding a group of people who genuinely do understand what you are going through is extremely helpful coping mechanism.
With all of the complications and struggles listed above, it is clear that mental illness is a particularly difficult sickness for families to care for and adjust to simply due to the nature of the behaviors and affects of the illness. Unfortunately though, on top of all of this, families and their sick member must deal with the various stigmas that society applies to mental illness. According to a study done by the National Mental Health Association on the causes of mental illness:
• 71% of people believe that mental illness is caused by emotional weakness
• 65% believe it is caused by poor parenting
• And 43% believed it is caused in some way by the individual
(“Mental Health Matters”)
In a medically and technologically advanced culture, it is really alarming that with all we know about the biological causes and working of mental illness, a significant number of people still hold on to these false ideas and beliefs. One study showed that mental illness “is one of the most highly rejected conditions, clustering with prostitution, drug addiction, and ex-convict status rather than with cancer, diabetes, and heart disease”. (The Consequences of Stigma for People With Mental Illnes: Evidence from the Social Sciences). I was amazed at the multitude of articles and resources I found regarding stigmas from a simple search on mental illness, but a study like this reveals why! The two are essentially connected in an extremely unfortunate and harmful way. Society stills sees mental illness in many ways as an individual weakness, and therefore does not validate it in the same way as other diseases. At the same time, there is also a stigma that creates fear around mental illness and those who suffer from it. Many people fear that all people with mental illness are violent, while the reality is that the majority do not suffer from violent behavior, and those who do are most commonly triggered by normal stressors such as being threatened. Therefore, society acts cautiously and even avoids those with mental illness due to a stigmatized fear of danger or aggressive behavior. In addition, mental illness caries the stigma of incompetence – meaning that people do not think people who suffer from this type of illness are ever capable of being responsible or holding professional positions. As a result, they end up being treated as second-class citizens who can not hold jobs or take on any type of liability. Again, in reality the majority of those who are mentally ill are capable of work, and their qualifications should be looked at the same as everyone else’s. There are of course mental illness that keep people form being able to hold jobs, but this is not the case for most and thus should be applied to this type of illness as a general problem (ie. stigmatized!)
Just as stigmas usually do – the stigmas attached to mental illness lead to common discrimination by society against this population. Those who suffer from these conditions are often denied employment, denied or receive inadequate insurance, are mistrusted due to fear, and are even rejected or isolated by their family and/or friends. This can then lead to unhealthy behaviors such as being unwilling to recognize or seek help and treatment for their condition due to fear or judgment or maltreatment.
In this way, we see how societal stigmas attached to this disease can both affect family life and the life and health of the person suffering from it. Families often isolate themselves out of fear of embarrassment or criticism of their family member, or even due to fear regarding the safety of their family member. This can be extremely harmful, and goes against all suggestions to help care givers manage their own self-care. Instead they need to remain active in their social circles, activities, and support groups. In the same way, people with mental illnesses can actually suffer physically from these stigmas if they discourage them from getting help or treatment.
In the end, as a society we need to start talking more about this issue and recognizing our false assumptions and fears regarding this disease. If this happens, society can become a support system for people with mental illness and their families rather than a threat or hindrance to their coping and recovery process.
In response to this subject:
1) Do you have any experiences with mental illness either in your family, your community, or among friends in which you have seen these difficulties arise?
2) What are your reactions to the statistics and opinion poles given above? Do you think you would have answered similarly?
3) In the same way, do you feel as though you have been well educated about mental illness, or does it seem like a foreign or untalked about issue in your life?
4) How do you feel about the stigmas society has applied to mental issues? Do you see how societal forces can, in this way, cause problems in the lives of sufferers and their families? Why or why not?
Sources:
“A Resource Guide For Families Dealing with Mental Illness” The NAMI Family Michigan Resource Guide
http://www.michigan.gov/documents/MDCH-MentalIllness-10AUG04_102671_7.pdf
Tasman, A., Fink. P. “The Consequences of Stigma for People With Mental Illness: Evidence from the Social Sciences” (2002). Washington DC: American Psychiatric Press Inc.
http://books.google.com/books?hl=en&lr=&id=gmCxeAw7-Z4C&oi=fnd&pg=PA87&dq=stigmas+of+mental+illness&ots=3jHMGAfhc8&sig=Gb3liSYqnaSy1QUsKJxtWleNJYs#v=onepage&q&f=false
“Stigma” – DuPage County Health Department
http://www.dupagehealth.org/mental_health/stigma.html
“Working with the Family: Impact of Mental Illness on Families”
http://www.pathways2promise.org/family/impact.htm
Wednesday, April 28, 2010
Social Construction of the Definitions of Health and Illness
Over the next two days we are going to look at two specific types of illness, mental illness and terminal illness, to see what different types of affects they have on the family. However, before diving in to particular illness, I think it is important to pause and look at how society influences the definition and creation of illness in the first place. As a culture immersed in an era of elite medical technology, we look at illness often as an entirely biological process. Diseases are defined by what medicine says is happening in the body, and this is not something that can be challenged or changed, right? Cancer is cancer – there does not seem to be anything society can do to change that or affect its meaning. It’s purely biology!
In reality though, ideas about health and illness are always social constructions. While science is a major contributor, society’s nonscientific beliefs regarding anything from health and illness to morality have an enormous impact on the development of diseases. For one, our ideas about the human body are social constructs. This is because cultural beliefs, practices, etc. shape the way the body is perceived and idealized. One example is the practice of foot binding in China – a situation in which cultural beliefs about what the body should look like is directly affecting the biological make-up of their people. In this way, illness is not simply a biological experience, but a social one as well. Just as the women’s bodies in China are literally be altered and shaped by society, our cultural values influence what we consider to be healthy as well as what we consider to be sick. The International Dictionary of Medicine and Biology defines health as “a state of well-being of an organism or part of one, characterized by normal function and unattended by disease”. While this may seem very straight forward and very scientific, it has many social ideas imbedded it. For instance, what if our society did not place so much importance on the ability to function? Would that still be included as a criteria for being healthy? Or, what if there were certain diseases that our society considered to be special or beneficial? For instance, in “The Spirit Catches You and You Fall Down”, a Hmong family tries to explain to their doctor that in their culture, epilepsy is a seen as a gift from the Gods, and therefore a privilege to those who receive it. In such a case, the total absence of illness would not accurately define health, because some diseases would be considered to be healthy! In this way, even simple definitions of something like health are a combination of medicine and social values – and therefore are ultimately socially constructed.
It is difficult sometimes to believe, as mentioned above, that the actual definition of a disease can be influenced by social factors. However, in the same way that “health” is influenced by society, so can be definitions of disease, such as “AIDS”. One very poignant example of this actually happened in the case of masterbation. While it is still an uncomfortable topic in many ways in the US today, as a whole society now sees it as a natural and biologically encouraged practice. However, this was not always the case. In the eighteenth century, masterbation was actually considered a disease all of its own. It was a medically defined disease called “onanism” and was also referred to as “self-abuse” or “self-pollution”. It was said to cause impotence, epilepsy, blurred vision, headaches, rheumatism, mental disorders, and much more. By the mid-eighteenth doctors actually identified and defined a type of mental insanity as “masturbatory insanity”. One article describes it saying:
“The masturbatory hypothesis provided an explanatory model for many conditions for which the medical profession of the day could find no other diagnosis and for which they could do nothing. By the early nineteenth century self-abuse was beginning to be blamed not only for physical and nervous ailments, but also for mental disorder. By the mid-century, in Britain and North America in particular, a particular form of "masturbatory insanity" was identified. This was strongly associated with ADOLESCENCE, and in some cases may have been dementia praecox.”
Commenting on where these ideas about masterbation came from, the article states that:
“Some historians have argued that the rise of masturbation paranoia reflected anxieties within Protestant culture, cut off from old sources of moral authority, but masturbation fears were at least as prevalent in Catholic nations, possibly reflecting anxieties generated by political, social, and economic change.”
Just from this quote, it is evident that everything from religious, political, social, and economic values or events can influence something that seems as scientific as the definition of disease. In the case of masterbation, as medicine progressed the symptoms were seen to be false, and simultaneously our culture transitioned in to an era of much more relaxed views regarding sexuality. In this way, it was the combination of changes in medical technology and societal constructs that redefined this issue and the many diseases that went along with it.
In the end, before looking at specific disease such as mental illness, it is important to think about where the definitions of these diseases come from and how they are constructed. For instance, one of the things we will talk about regarding mental sicknesses is the stigma that surrounds them throughout society and how that plays a part in the lives of those suffering from it and their care givers. In this way, we see that not only are do our ideas regarding a defined illness have an impact on people’s lives, but they also play a part in defining the illness to begin with.
After reading this…
1) Have you ever thought before that definitions of health and sickness could be socially constructed? If you never have, why do you think that is?
2) Do you agree with the information provided? Or do you think that medical definitions are purely scientific?
3) How do you think this idea of medical definitions and illness affects the way you see or think about illness? Are there any illnesses that you can think of that you do not think should be considered sicknesses?
4) Do you know of any other examples to share of diseases that have developed over time with the advancement of technology and society combined?
Sources:
“Health, Illness, and the Social Body: A Critical Sociology.” (Ed. 4) Freund, P., McGurie, M., Podhurst, L. (2003) Upper Saddle River, New Jersey: Prentice Hall.
http://www.faqs.org/childhood/Ke-Me/Masturbation.html
In reality though, ideas about health and illness are always social constructions. While science is a major contributor, society’s nonscientific beliefs regarding anything from health and illness to morality have an enormous impact on the development of diseases. For one, our ideas about the human body are social constructs. This is because cultural beliefs, practices, etc. shape the way the body is perceived and idealized. One example is the practice of foot binding in China – a situation in which cultural beliefs about what the body should look like is directly affecting the biological make-up of their people. In this way, illness is not simply a biological experience, but a social one as well. Just as the women’s bodies in China are literally be altered and shaped by society, our cultural values influence what we consider to be healthy as well as what we consider to be sick. The International Dictionary of Medicine and Biology defines health as “a state of well-being of an organism or part of one, characterized by normal function and unattended by disease”. While this may seem very straight forward and very scientific, it has many social ideas imbedded it. For instance, what if our society did not place so much importance on the ability to function? Would that still be included as a criteria for being healthy? Or, what if there were certain diseases that our society considered to be special or beneficial? For instance, in “The Spirit Catches You and You Fall Down”, a Hmong family tries to explain to their doctor that in their culture, epilepsy is a seen as a gift from the Gods, and therefore a privilege to those who receive it. In such a case, the total absence of illness would not accurately define health, because some diseases would be considered to be healthy! In this way, even simple definitions of something like health are a combination of medicine and social values – and therefore are ultimately socially constructed.
It is difficult sometimes to believe, as mentioned above, that the actual definition of a disease can be influenced by social factors. However, in the same way that “health” is influenced by society, so can be definitions of disease, such as “AIDS”. One very poignant example of this actually happened in the case of masterbation. While it is still an uncomfortable topic in many ways in the US today, as a whole society now sees it as a natural and biologically encouraged practice. However, this was not always the case. In the eighteenth century, masterbation was actually considered a disease all of its own. It was a medically defined disease called “onanism” and was also referred to as “self-abuse” or “self-pollution”. It was said to cause impotence, epilepsy, blurred vision, headaches, rheumatism, mental disorders, and much more. By the mid-eighteenth doctors actually identified and defined a type of mental insanity as “masturbatory insanity”. One article describes it saying:
“The masturbatory hypothesis provided an explanatory model for many conditions for which the medical profession of the day could find no other diagnosis and for which they could do nothing. By the early nineteenth century self-abuse was beginning to be blamed not only for physical and nervous ailments, but also for mental disorder. By the mid-century, in Britain and North America in particular, a particular form of "masturbatory insanity" was identified. This was strongly associated with ADOLESCENCE, and in some cases may have been dementia praecox.”
Commenting on where these ideas about masterbation came from, the article states that:
“Some historians have argued that the rise of masturbation paranoia reflected anxieties within Protestant culture, cut off from old sources of moral authority, but masturbation fears were at least as prevalent in Catholic nations, possibly reflecting anxieties generated by political, social, and economic change.”
Just from this quote, it is evident that everything from religious, political, social, and economic values or events can influence something that seems as scientific as the definition of disease. In the case of masterbation, as medicine progressed the symptoms were seen to be false, and simultaneously our culture transitioned in to an era of much more relaxed views regarding sexuality. In this way, it was the combination of changes in medical technology and societal constructs that redefined this issue and the many diseases that went along with it.
In the end, before looking at specific disease such as mental illness, it is important to think about where the definitions of these diseases come from and how they are constructed. For instance, one of the things we will talk about regarding mental sicknesses is the stigma that surrounds them throughout society and how that plays a part in the lives of those suffering from it and their care givers. In this way, we see that not only are do our ideas regarding a defined illness have an impact on people’s lives, but they also play a part in defining the illness to begin with.
After reading this…
1) Have you ever thought before that definitions of health and sickness could be socially constructed? If you never have, why do you think that is?
2) Do you agree with the information provided? Or do you think that medical definitions are purely scientific?
3) How do you think this idea of medical definitions and illness affects the way you see or think about illness? Are there any illnesses that you can think of that you do not think should be considered sicknesses?
4) Do you know of any other examples to share of diseases that have developed over time with the advancement of technology and society combined?
Sources:
“Health, Illness, and the Social Body: A Critical Sociology.” (Ed. 4) Freund, P., McGurie, M., Podhurst, L. (2003) Upper Saddle River, New Jersey: Prentice Hall.
http://www.faqs.org/childhood/Ke-Me/Masturbation.html
Tuesday, April 27, 2010
Responses and Coping When Children Fall Ill - How do societal norms play a part?
Chronic and acute illnesses in a family bring about an entirely new set of
responsibilities and roles for each member. Everyone experiences the illness in a unique way, whether you are a friend, a relative, a sibling, or a parent. All parties included have their own reactions, feelings, and alterations to make in response to this major change. In addition, a multitude of people from a variety of social structures are generally involved as they surround the ill person and their family for support. This includes teachers, counselors, mentors, doctors, recreational or physical therapists, social workers, and day-care personnel. In the end, illness brings about change for everyone, and again everyone participates and copes in their own way. One of the most affected populations in these circumstances is siblings. When a child in a family falls ill, his or her brothers and sisters are part of the immediate family structure that is thrown in to disequilibrium. As a result, they endure changes and encounter emotions that they were not expecting and often do not know how to deal with. For one, siblings can be extremely confused by the role shifts that are taking place, and may start to question their identity within the family unit. They also may feel sadness over the loss of what they considered to be “normal” family life. Fear can also take over as siblings worry about the health and prognosis of their brother or sister. Additionally, siblings can even become jealous, angry, or feel neglected if they sense that the ill child is receiving all of the love and attention in the home. One of the most difficult aspects of helping siblings deal with these situations is that depending on their stage of development and their personality, their coping mechanism will greatly differ. For instance, one sibling may start to act out in school while another decides to become the perfect child in search of attention. As a result, the most common advice for parents is to foster continued open communication among all family members, excluding no one, especially not the one who is ill. In general, if siblings are given a healthy outlet for their emotions they are less likely to manifest themselves in problematic ways. Also, it is important to remember that even if siblings are presenting no signs of distress, it is undeniable that the illness is affecting them and therefore important to discuss their feelings anyway.
Another hugely affected group is parents! While it may seem obvious, as we saw in the video clip about the Wagners, there are a multitude of stressors that present themselves when a child falls ill. Two of the biggest issues that arise for parents is taking on their new roles as caregivers, and refiguring their finances in order to pay for their child’s care. Time management becomes extremely difficult as parents struggle to care for their child and spend quality time with one another. Parents can easily become overwhelmed, and consequently begin to experience social isolation, lessening their sense of support and life outside of their family struggles. Along with many of these stressors, unfortunately separation and divorce among parents of ill children is not uncommon.
However, a large piece of how parents deal and cope with a sick child or sick children has to do with gender roles. To look at things from a sociological perspective, it is crucial to consider the different ways in which men and women are involved in the care of a sick family member or even their own health, and how this too can affect family dynamics. Through a feminist perspective lens, the gender norms that have existed for centuries delegating domestic and nurturing roles to women have led to a trend in our culture now in which women are much more responsible for the care of a sick family member than men. In some cultures, this is more of an extreme trend in which men are still supposed to remain removed from care giving and housework. Looking at things from a comparative point of view, studies conducted in South Asia have shown that men who took on care giving roles, especially those who left work in order to do so, were extremely stigmatized and disrespected throughout society. In this way, there are still many societies were men are expected to remove themselves entirely from care giving roles, which is more extreme yet still evident in our culture. Gender roles translate in to care giving also in types of responsibilities men and women generally take on. While women tend to see caring from the sick as an obligation, but do so in an emotionally connected and supportive way, men are typically emotionally removed from the situation and thus help in more managerial areas such as finances, lawn mowing, or physical labor. Men also receive considerable help, while women tend to seek less assistance from others and act more independently. At the same time, women maintain more relationships that provide emotional support rather than physical aid. In the same way, men and women cope with illness in very different way. For instance, women tend to rely on their husbands more for support when they are sick, while men attempt to deal with illness independently. In one study of husbands of breast cancer patients, the husband’s ability to cope was the number one indicator of how well the wife was coping, while the husband’s ability to cope was based more heavily on his own emotional state. In this way, when dealing with illness women are more expressive and depend more on others while men try to remain more emotionally removed and autonomous. Lastly, gender also influences the way in which parent’s perceive and thus care for a sick child. It has been found that parents see sick sons as less capable and in need of more attention and care because society sees sickness as a sign of weakness for men. As a result, they actually put more energy in to caring for boys than for girls. Due to the same societal belief, boys are more likely to hide their chronic illnesses and thus make their care more difficult to administer for their parents, while girls are more honest with their needs. In the end, the fact that women are still subject to this gender norm in society means that they take on the heaviest care giving role in families, only adding to the amount of extra work they already perform in the family unit. The “second shift” that still exists in society proves that women are still majorly responsible for housework, and when they then take on the role of caregiver in family, they are essentially now working three jobs if they (as the majority of women do) work outside of the home as well. Unfortunately, this can then end up limiting their access to employment or out-of-home activities.
In sum, when looking at how family members respond to illness, the most important thing to remember is that everyone reacts differently depending on several factors, including their stage of development and their role within the family unit. Siblings are a great example, as they are all going to have different feelings based on their age, their change in role, their relationship with the ill sibling, their relationship with their parents, or their personality. Most importantly, parents can facilitate their coping process by opening the lines of communication, allowing them to express their feelings and regain a sense of equilibrium within the family. Additionally, it is crucial to take a sociological perspective and think about how societal forces and norms affect the way illness influences each family member’s life in a different way. A significant example of this is how societal expectations of men and women and their applied gender roles change the ways in which they experience and deal with illness. And ultimately, in the case of gender, it means that having a family member fall ill affects the lives of women in the family much more significantly than those of men. These trends should also encourage more research on how other societal factors regarding issues such as race and ethnicity affect care giving as well.
Here is one example from a journal article that gives narratives of working mothers of children with chronic illnesses. While the mother here is divorced, which only adds more strain between the man and woman, it still gives an example of a woman who is overwhelmed by the amount of care she has to give and feels as though she lacks support or help from the man in her life.
“As fathers tend not to have the same investment in caring responsibilities for the child, their confidence and expertise in relation to the chronic illness tends not to be developed over time, and certainly not commensurately with the mother's (Gibson, 1995, p.1205). The mothers remained, for the most part, as the 'sweepers' in the family, needing to be ever-attentive to the wellbeing of their family (Bianchi, 2000). Dolly confirms the imbalance in caring responsibilities reflected in many of the stories:
Dolly: What he doesn't understand is, yes, he takes Margaret three weekends out of four. But who organises all Maggie's medication, organises all her doctor's appointments? Who takes her to all her blood tests? Who irons all her clothes? Who washes all her clothes? Who changes all her bed? Who organises all the nappies? This all just 'happens'. Who buys all her clothes? Who finds time to go and buy her clothes and get her shoes fitted? And this all happens around Steven, and he doesn't get it. Who does all the grocery shopping? You know, the food's just there. The clothes are there. She g0es with a perfect little bag, like an overnight bag, with all the medication, all the stuff. And I'm really filthy with him, because it all comes back dirty. And I said to him, you know, "You can wash.' ... 'I don't expect two or three sets of pyjamas to come back filthy'. Because Maggie's a bit of a grub. You know, 'It wouldn't hurt you to do a wash" and all that sort of thing. So, hopefully he will do that (Dolly, #1, p.36).”
Some things to think about…
1) Have you ever had a sibling fall ill in one way or another so that it had a significant impact on your life? Maybe it was an acute problem and not chronic, such as surgery. Either way, do you remember ever experiencing some of the feelings listed above? What were they and how did you cope with them?
2) What are your opinions about the way gender roles in society dictate care-giving roles? Do you think these roles are true based on your own experiences?
3) What are some things you might suggest to help change these gender trends in society?
“Working mothers of children with chronic illness: narratives of working and caring”
http://findarticles.com/p/articles/mi_hb6418/is_1_29/ai_n31676321/pg_3/?tag=content;col1
“Chronic Illness – Famliy Caregiving”
http://family.jrank.org/pages/260/Chronic-Illness-Family-Caregiving.html
“Social Networks, Social Support And Coping With Serious Illness: The Family Connection”
http://www.sciencedirect.com/science?_ob=PublicationURL&_tockey=%23TOC%235925%231996%23999579997%2369421%23FLP%23&_cdi=5925&_pubType=J&view=c&_auth=y&_acct=C000051322&_version=1&_urlVersion=0&_userid=1075869&md5=0a42b987725992787cf9e575272dc22f
responsibilities and roles for each member. Everyone experiences the illness in a unique way, whether you are a friend, a relative, a sibling, or a parent. All parties included have their own reactions, feelings, and alterations to make in response to this major change. In addition, a multitude of people from a variety of social structures are generally involved as they surround the ill person and their family for support. This includes teachers, counselors, mentors, doctors, recreational or physical therapists, social workers, and day-care personnel. In the end, illness brings about change for everyone, and again everyone participates and copes in their own way. One of the most affected populations in these circumstances is siblings. When a child in a family falls ill, his or her brothers and sisters are part of the immediate family structure that is thrown in to disequilibrium. As a result, they endure changes and encounter emotions that they were not expecting and often do not know how to deal with. For one, siblings can be extremely confused by the role shifts that are taking place, and may start to question their identity within the family unit. They also may feel sadness over the loss of what they considered to be “normal” family life. Fear can also take over as siblings worry about the health and prognosis of their brother or sister. Additionally, siblings can even become jealous, angry, or feel neglected if they sense that the ill child is receiving all of the love and attention in the home. One of the most difficult aspects of helping siblings deal with these situations is that depending on their stage of development and their personality, their coping mechanism will greatly differ. For instance, one sibling may start to act out in school while another decides to become the perfect child in search of attention. As a result, the most common advice for parents is to foster continued open communication among all family members, excluding no one, especially not the one who is ill. In general, if siblings are given a healthy outlet for their emotions they are less likely to manifest themselves in problematic ways. Also, it is important to remember that even if siblings are presenting no signs of distress, it is undeniable that the illness is affecting them and therefore important to discuss their feelings anyway.
Another hugely affected group is parents! While it may seem obvious, as we saw in the video clip about the Wagners, there are a multitude of stressors that present themselves when a child falls ill. Two of the biggest issues that arise for parents is taking on their new roles as caregivers, and refiguring their finances in order to pay for their child’s care. Time management becomes extremely difficult as parents struggle to care for their child and spend quality time with one another. Parents can easily become overwhelmed, and consequently begin to experience social isolation, lessening their sense of support and life outside of their family struggles. Along with many of these stressors, unfortunately separation and divorce among parents of ill children is not uncommon.
However, a large piece of how parents deal and cope with a sick child or sick children has to do with gender roles. To look at things from a sociological perspective, it is crucial to consider the different ways in which men and women are involved in the care of a sick family member or even their own health, and how this too can affect family dynamics. Through a feminist perspective lens, the gender norms that have existed for centuries delegating domestic and nurturing roles to women have led to a trend in our culture now in which women are much more responsible for the care of a sick family member than men. In some cultures, this is more of an extreme trend in which men are still supposed to remain removed from care giving and housework. Looking at things from a comparative point of view, studies conducted in South Asia have shown that men who took on care giving roles, especially those who left work in order to do so, were extremely stigmatized and disrespected throughout society. In this way, there are still many societies were men are expected to remove themselves entirely from care giving roles, which is more extreme yet still evident in our culture. Gender roles translate in to care giving also in types of responsibilities men and women generally take on. While women tend to see caring from the sick as an obligation, but do so in an emotionally connected and supportive way, men are typically emotionally removed from the situation and thus help in more managerial areas such as finances, lawn mowing, or physical labor. Men also receive considerable help, while women tend to seek less assistance from others and act more independently. At the same time, women maintain more relationships that provide emotional support rather than physical aid. In the same way, men and women cope with illness in very different way. For instance, women tend to rely on their husbands more for support when they are sick, while men attempt to deal with illness independently. In one study of husbands of breast cancer patients, the husband’s ability to cope was the number one indicator of how well the wife was coping, while the husband’s ability to cope was based more heavily on his own emotional state. In this way, when dealing with illness women are more expressive and depend more on others while men try to remain more emotionally removed and autonomous. Lastly, gender also influences the way in which parent’s perceive and thus care for a sick child. It has been found that parents see sick sons as less capable and in need of more attention and care because society sees sickness as a sign of weakness for men. As a result, they actually put more energy in to caring for boys than for girls. Due to the same societal belief, boys are more likely to hide their chronic illnesses and thus make their care more difficult to administer for their parents, while girls are more honest with their needs. In the end, the fact that women are still subject to this gender norm in society means that they take on the heaviest care giving role in families, only adding to the amount of extra work they already perform in the family unit. The “second shift” that still exists in society proves that women are still majorly responsible for housework, and when they then take on the role of caregiver in family, they are essentially now working three jobs if they (as the majority of women do) work outside of the home as well. Unfortunately, this can then end up limiting their access to employment or out-of-home activities.
In sum, when looking at how family members respond to illness, the most important thing to remember is that everyone reacts differently depending on several factors, including their stage of development and their role within the family unit. Siblings are a great example, as they are all going to have different feelings based on their age, their change in role, their relationship with the ill sibling, their relationship with their parents, or their personality. Most importantly, parents can facilitate their coping process by opening the lines of communication, allowing them to express their feelings and regain a sense of equilibrium within the family. Additionally, it is crucial to take a sociological perspective and think about how societal forces and norms affect the way illness influences each family member’s life in a different way. A significant example of this is how societal expectations of men and women and their applied gender roles change the ways in which they experience and deal with illness. And ultimately, in the case of gender, it means that having a family member fall ill affects the lives of women in the family much more significantly than those of men. These trends should also encourage more research on how other societal factors regarding issues such as race and ethnicity affect care giving as well.
Here is one example from a journal article that gives narratives of working mothers of children with chronic illnesses. While the mother here is divorced, which only adds more strain between the man and woman, it still gives an example of a woman who is overwhelmed by the amount of care she has to give and feels as though she lacks support or help from the man in her life.
“As fathers tend not to have the same investment in caring responsibilities for the child, their confidence and expertise in relation to the chronic illness tends not to be developed over time, and certainly not commensurately with the mother's (Gibson, 1995, p.1205). The mothers remained, for the most part, as the 'sweepers' in the family, needing to be ever-attentive to the wellbeing of their family (Bianchi, 2000). Dolly confirms the imbalance in caring responsibilities reflected in many of the stories:
Dolly: What he doesn't understand is, yes, he takes Margaret three weekends out of four. But who organises all Maggie's medication, organises all her doctor's appointments? Who takes her to all her blood tests? Who irons all her clothes? Who washes all her clothes? Who changes all her bed? Who organises all the nappies? This all just 'happens'. Who buys all her clothes? Who finds time to go and buy her clothes and get her shoes fitted? And this all happens around Steven, and he doesn't get it. Who does all the grocery shopping? You know, the food's just there. The clothes are there. She g0es with a perfect little bag, like an overnight bag, with all the medication, all the stuff. And I'm really filthy with him, because it all comes back dirty. And I said to him, you know, "You can wash.' ... 'I don't expect two or three sets of pyjamas to come back filthy'. Because Maggie's a bit of a grub. You know, 'It wouldn't hurt you to do a wash" and all that sort of thing. So, hopefully he will do that (Dolly, #1, p.36).”
Some things to think about…
1) Have you ever had a sibling fall ill in one way or another so that it had a significant impact on your life? Maybe it was an acute problem and not chronic, such as surgery. Either way, do you remember ever experiencing some of the feelings listed above? What were they and how did you cope with them?
2) What are your opinions about the way gender roles in society dictate care-giving roles? Do you think these roles are true based on your own experiences?
3) What are some things you might suggest to help change these gender trends in society?
“Working mothers of children with chronic illness: narratives of working and caring”
http://findarticles.com/p/articles/mi_hb6418/is_1_29/ai_n31676321/pg_3/?tag=content;col1
“Chronic Illness – Famliy Caregiving”
http://family.jrank.org/pages/260/Chronic-Illness-Family-Caregiving.html
“Social Networks, Social Support And Coping With Serious Illness: The Family Connection”
http://www.sciencedirect.com/science?_ob=PublicationURL&_tockey=%23TOC%235925%231996%23999579997%2369421%23FLP%23&_cdi=5925&_pubType=J&view=c&_auth=y&_acct=C000051322&_version=1&_urlVersion=0&_userid=1075869&md5=0a42b987725992787cf9e575272dc22f
Monday, April 26, 2010
Illness, Family, and Society Introduction - Stress and Coping
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.
http://www.youtube.com/watch?v=_zCHSclk41k&feature=related
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.
Sources:
"AAMFT Consumer Update Chronic Illness"
http://www.therapistlocator.net/families/Consumer_Updates/ChronicIllness.asp
"Chronic Illness - Family Caregiving"
http://family.jrank.org/pages/260/Chronic-Illness-Family-Caregiving.html
"Social Networks, Social Support and Coping with Serious Illness: The Family Connection"
http://www.sciencedirect.com/science?_ob=PublicationURL&_tockey=%23TOC%235925%231996%23999579997%2369421%23FLP%23&_cdi=5925&_pubType=J&view=c&_auth=y&_acct=C000051322&_version=1&_urlVersion=0&_userid=1075869&md5=0a42b987725992787cf9e575272dc22f
"Caring for Siblings of Seriously Ill Children"
http://kidshealth.org/parent/positive/talk/sibling_care.html
"Illness - A Family's Response"
http://ezinearticles.com/?Illness---A-Familys-Response&id=124432
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.
http://www.youtube.com/watch?v=_zCHSclk41k&feature=related
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.
Sources:
"AAMFT Consumer Update Chronic Illness"
http://www.therapistlocator.net/families/Consumer_Updates/ChronicIllness.asp
"Chronic Illness - Family Caregiving"
http://family.jrank.org/pages/260/Chronic-Illness-Family-Caregiving.html
"Social Networks, Social Support and Coping with Serious Illness: The Family Connection"
http://www.sciencedirect.com/science?_ob=PublicationURL&_tockey=%23TOC%235925%231996%23999579997%2369421%23FLP%23&_cdi=5925&_pubType=J&view=c&_auth=y&_acct=C000051322&_version=1&_urlVersion=0&_userid=1075869&md5=0a42b987725992787cf9e575272dc22f
"Caring for Siblings of Seriously Ill Children"
http://kidshealth.org/parent/positive/talk/sibling_care.html
"Illness - A Family's Response"
http://ezinearticles.com/?Illness---A-Familys-Response&id=124432
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