There are an estimated 11,000 new cases of spinal cord injury (SCI) in the United States per year. Over the last several years, SCI has primarily affected persons aged 16 – 30, 78 percent of whom are males; and predominately Caucasian (78 percent).

Almost half of the spinal injuries occur as a result of motor vehicle injury, second are falls, and the remainder come from acts of violence such as gun shot wounds or knife injuries as well as war related injury.

SCI is defined as, damage or trauma to the spinal cord that results in loss of sensory and motor function. An SCI can result in either a “complete injury” (a loss of all voluntary movement) or an “incomplete injury” (a partial loss of voluntary movement).

An SCI is classified utilizing a scale developed by the American Spinal Injury Association (ASIA) that uses a system to describe the level of injury. For example, a person with an ASIA A complete injury describes a person who has no voluntary movement or sensation below the level of injury.

Dealing with the Diagnosis

Spinal cord injury (SCI) is a devastating event that not only has physical but social and psychological ramifications for both the individual and the family. In one moment, a person’s world is monumentally changed forever with reverberations throughout the whole family system. The person who sustains an SCI is at high risk for many factors including: dependency, depression, drug addiction and, if married, divorce. They can also struggle with debilitating secondary medical complications and other factors such as the effects of perceived social discrimination, declining help and lack of social, family, and emotional support.

Family Implications

When something traumatic happens to one family member, the whole family feels the effects. Roles and responsibilities change. Marital strain occurs when one partner has to take on unfamiliar roles such as providing assistance with activities of daily living, financial responsibility and intimacy changes. This can put the person without the disability at high risk for depression.

Parents who have a young adult child that has an SCI will often reestablish the role or responsibility of parenting. If the person has left home, this may mean moving back in. This can affect self-esteem of the person with SCI and cause conflict with parents.

Interpersonal relationships are affected as well. Friends who may have had previous interests or activities they enjoyed doing together are now different. The person with SCI may withdraw or may feel embarrassed being seen post-injury. While having a young child sustain a spinal cord injury, brings a new dynamic to the entire family system and numerous challenges to the child who must face an SCI during times of dynamic growth and development. (more…)

Introduction

In recent years, medical advances have produced revolutionary treatments for people with HIV that slow the progression of the disease and prolong life. Unfortunately, various strains of the HIV virus are also evolving, becoming increasingly resistant to drug treatments, which may lead to the drugs or medication therapies failing. Genetic testing is now used for people with HIV to help identify drug-resistant HIV strains so that physicians can prescribe the most effective treatment options.

HIV (human immunodeficiency virus) is a disease that destroys or damages a type of white blood cell (CD4 T-cells) in the immune system and progressively decreases the body’s ability to fight infections and certain cancers. The virus causes AIDS (acquired immune deficiency syndrome).

People with AIDS have a significantly reduced number of healthy white blood cells, and therefore become more susceptible to life-threatening infections caused by microbes that rarely cause illness in healthy people.

Although there is no cure, treatment for HIV has advanced with highly active antiretroviral therapy (HAART), which suppresses the virus. However, HIV is constantly replicating and can mutate so that antiretroviral medications designed to treat a certain strain of virus are no longer effective.

Drug resistance is the most common reason why medication therapies fail. People with HIV may have several different strains of the virus, so determining the optimal treatment option becomes more difficult.

Types of Genetic Tests

Two types of genetic tests are available to determine if a resistant strain of HIV is present in a person using HAART: phenotype and genotype testing. Phenotype testing measures the amount of drug required to completely stop HIV replication in a blood sample. In contrast, genotype testing identifies the mutations in the genetic structure of the virus that have been linked with drug resistance.

Genetic analysis of HIV/AIDS helps researchers to better track the patterns of disease transmission, and to better understand how the virus affects the human body. No one test is sufficient for making treatment decisions.

People with HIV/AIDS work with a variety of professionals who diagnose and treat the disease and help manage the physical and mental health and social issues related to the disease. Social work professionals play an important role in the disease management team.

Social workers employed in community human services agencies, hospitals, and in private practice help people with HIV/AIDS to decide whether or not to have genetic testing and to understand the implications of test results. Additionally, social workers coordinate community services and help their clients address the life changes that often accompany a diagnosis of this life-threatening disease.

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Source material:� HIV/AIDS: Understanding the Role of Genetics by Evelyn P. Tomaszewski, MSW, published in the NASW Specialty Practice Sections Health Connection, Spring 2005.

Related Articles:

• About HIV/AIDS
• HIV/AIDS Current Trends
• HIV/AIDS: Your Options
• HIV/AIDS: How Social Workers Help
• HIV/AIDS Tip Sheets
• Resources on HIV/AIDS
• HIV/AIDS Real Life Stories

Reviewed by NASW Office of Social Work Specialty Practice Staff

Introduction

Families plan and prepare for major life events: attending college, getting married, having a baby, and retiring at the end of a career. However, few plan for events� such as how we would want our health care delivered if we become very ill.

Or some people may be adamant about not going into a nursing home but they fail to plan for securing long-term care insurance, home modifications, or having someone to advocate for them if they cannot communicate. Rarely do we think that far head.

These are decisions that we all should be thinking about.� They should be documented so that our family members, health care providers, etc.� will know our wishes for our care.

In generations past, people who were terminally ill remained at home, dying quickly from infectious diseases or accidents. Today, with the deluge of new medicines and technologies, we have become a “death denying” society, in which death is an enemy that must be beaten at all costs. We focus on fighting death rather than preparing for its inevitability.

Who Needs Advance Care Planning?

Every adult can benefit from Advance Care Planning.� � Planning is particularly important for those who are terminally ill.� Research shows that people suffering from chronic illness also benefit from advance care planning. Even healthy people should consider their wishes for end-of-life care and discuss their decisions with family members or professionals, before a health care crisis occurs.

Because an accident or serious illness can happen suddenly, and at any time, thinking about this topic when you are capable of making decisions is important. Sharing these decisions with your family helps to ease their burden and reduce their uncertainty if they ever have to make health care decisions on your behalf.

What Are the Benefits of Advance Care Planning?

Studies funded by the Agency for Healthcare Research and Quality (AHRQ) have shown that people who talked with their family, physician, or others about their preferences for end-of-life care had less fear and anxiety, felt more in control of their own medical care, and believed their doctor had a better understanding of their wishes. Other potential benefits of advance care planning according to the National Institutes of Health include:

• Decreased personal worry
• Decreased feelings of helplessness and guilt for the family
• Decreased implementation of costly, specialized medical interventions
• Decreased overall health care costs

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Reprinted with permission of the organization People Living With Cancer

Introduction

For people diagnosed with cancer, an oncology social worker is an important member of the health-care team. An oncology social worker provides services, such as counseling, education, and information and referrals to community resources, including support groups. An oncology social worker often acts as a liaison between people with cancer and the medical team, and helps people find ways to navigate the health-care system. He or she works with the medical team to make sure people with cancer get the information they need to make informed choices about their care, and the support needed to manage the day-to-day challenges of living with cancer.

Taking Care of the Whole Person

An oncology social worker is a professional who has specialized training in how a diagnosis of cancer affects a person and his or her family and friends. An oncology social worker understands that there are many aspects of a person’s life outside of cancer, and that cancer affects each person in a different way. The oncology social worker’s expertise is a comprehensive view of the person living with cancer that is respectful of each individual’s ethnicity, spirituality, family situation, unique strengths and challenges, and it is his or her job to represent a person’s interests and needs to the medical team.

For most people, a cancer diagnosis brings with it new feelings and experiences. Talking to a professional who has helped other people manage similar situations may help a person find ways to improve quality of life, manage fears, and find hope. A social worker talks to people about the different aspects of adjusting to the cancer, and helps find strategies to adapt to, and manage health-care concerns. This can happen through individual, couples, and family counseling; support groups; and referrals to community agencies that have additional support programs.

A Bridge to the Medical Care Team

An oncology social worker has advanced training in cancer treatment, as well as in how treatments affect people living with cancer. Many people with cancer find that information that may have been easy to read and absorb in a textbook is much more difficult to understand when it pertains to their own health. A social worker helps gather the information people need to make decisions about their care. He or she may arrange a family meeting with the medical team, at which people’s care and treatment options may be discussed. A social worker can also refer people to additional educational resources and to community organizations that have information about cancer and treatment.

New Roles and Responsibilities

People may wonder how their parents, children, friends, and coworkers will react to their cancer, and how they will feel about that reaction. People may also wonder if there will be changes in their ability and desire to keep up with the many responsibilities of their life, such as a demanding job, taking care of young children, or helping an older parent. A social worker can arrange a meeting to talk about how those roles and responsibilities might change, and about what kind of support he or she wants and needs while going through treatment…Click here for the rest of this article

By Terry A. Altilio, MSW, LMSW

Introduction

Pain is unique in that everyone has pain at some time or another and in fact it is essential to survival. Pain signals that the body is or has been injured and thereby warns us to take action. People who do not feel pain do not receive this signal and cannot protect themselves from further physical harm. Most of the time pain dissipates as healing takes place and we continue on the path of our lives.

As people grow from child to adult, they experience pain and are taught through their families, their cultures, and their spiritual beliefs how to think and act when in pain, what to expect from others, and the meaning of pain in their lives. While pain is a very personal and subjective experience, sometimes the impact expands beyond the individual to family, to work life and other areas of pleasure and fulfillment.

Physical and Emotional Factors

Over the years, research and clinical experience has led pain experts to believe that pain is not just physical but rather involves interrelated variables such as our unique history, the meaning of pain, motivational factors and emotions.

For example, the pain that results from a marathon run is filtered through feelings of accomplishment and pride and has a meaning that is infused with the months of training that preceded the race.

This experience is essentially different from pain caused by recurrent migraine headaches that are unpredictable, disruptive of work and family life, and bring to mind a flood of sadness and anger left over from an adolescence interrupted by the same pain problem.

Acute Pain

The two kinds of pain that people experience are acute and chronic pain. Acute pain is of recent onset and short duration and the response is often one of anxiety and an emergency fight or flight reaction. We have all experienced acute pain and usually expect that it will go away when the injury heals. Depending on the nature of the pain and our health behaviors, we may or may not seek medical attention. (more…)

Easton (Mass.) Journal, March 4, 2005

By Cathy Knipper, Correspondent

Doll Statue On Tour To Counter Unrealistic Body Image Expectations

She is the one who every girl hopes will be at her birthday party. Her clothes are stylish, she always looks so together, everyone wants to be like her. Her name is Barbie, but the image she promotes is not all that pretty, and it is one that the professionals and volunteers of the South Shore Eating Disorder Collaborative (SSEDC) hope to shatter with their “Get Real Barbie” tour.

The SSEDC is a group of clinicians providing care for those coping with eating disorders. It was founded by Kathleen Burns Kingsbury of Easton.

Kingsbury is a mental health counselor and co-authored the book, “Weight Wisdom: Affirmations to Free You From Food and Body Concerns,” with fellow Easton resident and SSEDC member Mary Ellen Williams.

To promote National Eating Disorder Awareness Week, (Feb. 27- March 5) the members of SSEDC have built and designed a paper mache statue of Barbie who will travel from Easton to Boston Children’s Hospital, and then on to schools and hospitals throughout the South Shore area.

Get Real Barbie

The statue, dubbed “Get Real Barbie” encourages the public to “get real” information, “get real” expectations and “get real” help for eating disorders.

The first thing anyone looking at “Get Real Barbie” will notice is that she does not look like a “real” Barbie. The truth is, this life-size figure is actually as “real” as Barbie gets.

Inspired by a proportion lesson in her geometry class, Easton resident Kristine Alach, 14, decided to calculate Barbie’s life-sized proportions. (more…)

By Andrew J. McCormick, MSW, PhD

ntroduction

For many people, having a family member in the intensive care unit (ICU) can be very difficult. The experience raises concerns about dying and can cause a lot of stress. Throughout the ICU stay, many decisions regarding the patient’s care may have to be made.� Often the decisions must be made while dealing with both the shock of seeing� a loved one attached to high tech medical equipment and experiencing a range of emotions including loss and fear. This article offers� suggestions� for preparing� to meet with medical staff members to help� individuals and family members� make the best decisions� they can.

How to Approach Making Decisions in the ICU

One should always understand� questions� that may need to be answered. There� are� sometimes critical� decisions to be made� in today’s intensive care unit.� Here are a few questions that� family members might expect� from the ICU staff:

• Did your family member ever talk to you about how much medical care they would want in a situation like this?
• How much should we use� artificial life support such as� a ventilator (respirator) or feeding tube?
• Should we change the treatment to palliative care to make your family member comfortable and let them die naturally?� (Palliative care or comfort care is treatment that reduces pain and other symptoms rather than providing a cure.)

Get Good Information

Information is vital� to� good� decision-making. Many people are reluctant to ask doctors questions, but those who do get more information. Get support from other family members or your social worker to get your questions answered. Here are some suggested questions:

• What are the immediate goals of the treatment you are proposing?
• What is the long-term outcome of the treatment?
• What has been your experience in this situation with other patients?
• What kind of care is palliative care?
• What is your recommendation?

Also,� other family members should be involved. Some family members have a legal authority to make decisions and other family and some friends should be involved because it would be important to the patient.� For example,

• If the patient has a guardian or has signed a durable power of attorney, that person must be part of the decision.� (A durable power of attorney is a legal document that enables an individual to designate another person to act on his/her behalf, even in the event the individual becomes disabled or incapacitated.)
• If the spouse, children and brothers and sisters are available, they are other essential decision makers.
• If the patient has important friends including life partners to whom they are not married, they should also be consulted.

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By Lisa E. Cox, PhD, LCSW, MSW
Introduction

Diabetes mellitus is a group of disorders characterized by high levels of glucose (sugar) in the blood. All of them result from problems with insulin, a hormone that removes glucose from the blood and causes it to be stored in body cells. Type I and Type II diabetes are the most common forms, but up to 3 percent of women who did not previously have (or know they had) diabetes may develop it during pregnancy (a condition called gestational diabetes).

Type I

In Type I diabetes (also called juvenile diabetes) the pancreas—a long, soft, irregularly shaped gland located behind the stomach—produces very little or no insulin. All people with Type I diabetes require regular injections of insulin for life. Although girls and boys run an equal risk of developing Type I until about age 12, around the time of puberty the incidence in females begins to decrease in comparison to that in males. Up to age 30, approximately 25 percent more men than women develop Type I, but later on the risk is about the same for men and women.

Type II

Most people who develop diabetes as adults have Type II, a form in which the body requires greater than normal amounts of insulin to maintain normal blood glucose levels, probably because cells throughout the body do not respond appropriately to insulin. Type II (which used to be called adult-onset diabetes) typically begins after the age of 40, although now we have seen Type II diabetes in obese children. Whether men or women get Type II diabetes more often is still unsettled (Carlson, Karen J., Einstat, Stephanie A. & Ziporyn, T., 1996).

Gestational Diabetes

Gestational diabetes is a unique form of the disorder which occurs in pregnancy, probably as a result of hormones made by the placenta which alter the way insulin works. Although glucose levels usually return to normal after the baby is born, women who have gestational diabetes and required insulin during pregnancy do run a higher than average risk of developing Type II diabetes later in life. Gestational diabetes most often occurs in pregnant women who are over the age of 30, who are obese, who have previously given birth to a very large (over 9 pounds) or stillborn baby, or who have a family history of diabetes. (more…)

By Teri Browne, MSW, LSW

Introduction

Chronic kidney disease may be caused by diabetes, high blood pressure and other health problems. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant.

What Is Chronic Kidney Disease (CKD)?

Chronic kidney disease includes conditions that damage your kidneys and decrease their ability to keep you healthy. If kidney disease gets worse, wastes can build to high levels in your blood and make you feel sick. You may develop complications like high blood pressure, anemia (low blood count), weak bones, poor nutritional health and nerve damage. Also, kidney disease increases your risk of having heart and blood vessel disease. These problems may happen slowly over a long period of time. Chronic kidney disease may be caused by diabetes, high blood pressure and other disorders. Early detection and treatment can often keep chronic kidney disease from getting worse. When kidney disease progresses, it may eventually lead to kidney failure, which requires dialysis or a kidney transplant to keep the condition from becoming fatal.

The Facts About Chronic Kidney Disease (CKD)

• 20 million Americans - 1 in 9 US adults - have CKD and another 20 million more are at increased risk.
• Early detection can help prevent the progression of kidney disease to kidney failure.
• Glomerular filtration rate (GFR) is the best estimate of kidney function.
• Hypertension (high blood pressure) causes CKD and CKD causes hypertension.
• Persistent proteinuria means CKD.
• High risk groups include those with diabetes, hypertension and family history of kidney disease.
• African Americans, Hispanics, Pacific Islanders, Native Americans, older adults and people with a family history of kidney disease are at increased risk for CKD.
• Three simple tests can detect CKD: blood pressure, urine albumin and serum creatinine.
• Your doctor will help you decide when you need to start treatment. This decision is based on your medical condition, how much kidney function you have left, and your nutritional health.

Treatment Options

The treatment options for chronic kidney disease (CKD) are dialysis, kidney transplantation, and no treatment. Two different kinds of dialysis can be done—hemodialysis and peritoneal dialysis. Each type of treatment has pros and cons. You will need to speak to your doctor and your family about which treatment is best for you. The decision will be based on a number of factors including your medical condition, your lifestyle and your preferences. Most patients try different types of CKD treatment options.

Hemodialysis

Hemodialysis is a treatment that cleanses your blood of the wastes and excess fluid that have built up. During hemodialysis, your blood travels through soft tubes to a dialysis machine where it goes through a special filter called a dialyzer, or an artificial kidney. As your blood is cleansed, it is returned to your bloodstream. Only a small amount of blood is out of your body at any time. In order to be connected to the dialysis machine, you need to have a catheter, fistula or graft, which is an access to your bloodstream. Hemodialysis treatments can be done at a dialysis center or at home. Treatments are done at least three times a week (some patients dialyze everyday and report feeling better from more frequent dialysis), and each one lasts about three to five hours. Dialysis clinics have a team of dialysis professionals to help patients get the most from their treatments and deal with any issues that may arise. This team includes nephrologists (kidney doctors), dialysis nurses and technicians, dieticians and social workers. With home hemodialysis, you and an assistant are trained to do all the steps of the procedure and you can dialyze to fit your own schedule. On home hemodialysis, you only have to visit the clinic once a month for routine care like blood tests to make sure dialysis treatments are going well at home.

Peritoneal Dialysis

In peritoneal dialysis, your blood does not travel to a machine, but is cleaned inside your body. The lining of your abdomen (the peritoneum) acts as a natural filter. You pass a cleansing solution, called dialysate, into your abdomen (your belly) through a soft tube called a catheter. The catheter is placed during minor surgery. Wastes and excess fluid pass from your blood into the cleansing solution. After several hours, you drain the used solution from your abdomen and refill with fresh cleansing solution to begin the process again. Removing the used solution and adding fresh solution takes about a half hour and is called an “exchange.” Peritoneal dialysis can be done at home, at work, at school or even during travel. Many people who choose peritoneal dialysis feel it allows them greater flexibility.

Kidney Transplant

A kidney transplant is an operation that places a healthy kidney from another person into your body. The kidney may come from someone who has died or from a living donor who may be a relative, a partner, a friend, or someone who wished to donate a kidney to anyone in need of a transplant. The failed kidneys may be left in place in your body. Your new kidney will be placed in your lower abdomen and connected to your bladder and blood vessels. The transplant operation takes about three hours and you usually will be in the hospital for about five to seven days. After the transplant, you will need to take special medications to prevent your body from rejecting the new kidney. You will have to take these medications as long as you have the transplant. Many patients want to have a transplant because it gives them more freedom, allows for a less restricted diet and eliminates the need for dialysis.

What if I Do Not Want to Start Treatment for My CKD?

For many people with kidney failure, dialysis greatly improves quality of life. For some patients, however, dialysis may not improve quality of life significantly, often because of the severity of their health problems. You have the right to decide not to start treatment if you feel that the burdens of dialysis or a transplant would outweigh the benefits. Before considering this option, you should discuss it carefully with your doctor and your loved ones. However, the final choice about starting or not starting treatment is up to you. A nephrology social worker at a dialysis or transplant center can help you with this difficult choice. It is important to know that even if you decide to start dialysis, you always have the option to discontinue. For people who decide to quit dialysis, support services are available.

How Social Workers Help

When you or a member of your family is diagnosed with kidney disease, you may have many questions such as:

• What treatment choice is best for me?
• How will my life change because of my illness?
• How will my illness affect my family?
• How will I pay for my treatments?
• Will I be able to return to work and my daily activities?
• Is it normal to feel sad and depressed?

Kidney disease can change your life. Your health care team works together to help you return to many of your normal activities. You may also want to become involved in new activities. Every dialysis and transplant center has a nephrology social worker who is there to help you and your family adjust to your illness. You are an important part of the health care team. Your social worker can help you understand your feelings and adjust to your new lifestyle with dialysis or a
transplant. Your social worker can help you with:

• deciding which CKD treatment is best for you
• concerns about your job
• your feelings
• concerns about death and dying
• your marriage and family life
• problems with sex and intimacy
• body image issues
• information about health care decisions
• changes in your role in your family
• providing a support group
• speaking on your behalf to the health care team
• dealing with the many changes in your life
• feeling sad and depressed
• coping with kidney disease and its treatments
• guiding you to community resources that may help you and your family, such as: income to meet day-to-day expenses, finding employment or volunteer work, programs that pay for the cost of treatment or medications, home health care services, medical equipment, ideas/resources for exercise.

Working with your nephrology social worker can help you live life to the fullest. Every dialysis and transplant center in the United States has a master’s level social worker who can help you with your CKD.

For more information and resources on this topic, click here.

Teri Browne, MSW, LSW, is a social worker. Ms. Browne has been a member of the executive committee of the National Kidney Foundation’s Council of Nephrology Social Work since 2000 and is their current national chairperson. With more than a decade of experience as a nephrology social worker, she co-edited The Handbook of Health Social Work (2006) and serves on numerous kidney disease committees. A social work doctoral candidate at the University of Chicago, she teaches a health social work course, and has published and presented extensively about nephrology social work.