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Cancer Tip Sheet: Taking Pills to Treat Cancer – The Importance of Doing it Right

By Stacy Collins, MSW, Senior Practice Associate
National Association of Social Workers
 

The Changing Landscape of Cancer Treatment
Treating Cancer With Pills
What Is Adherence?
Why Is Adherence to Cancer Medication So Important?
The Challenge of Adherence
Ways to Incorporate Medication-Taking Into a Busy Life
Special Considerations for Older Adults With Cancer
Ways to Improve Cancer Medication Adherence With Old Adults
Resources
The Changing Landscape of Cancer Treatment

Most cancer treatment involves regular visits to an oncology office or hospital for intravenous, or IV, chemotherapy.  But cancer treatment is changing and more and more, cancer treatment involves taking pills.  Oral chemotherapy – taking pills to treat cancer – offers many benefits: fewer office visits; less time away from work and family and less interference with personal schedules.  Patients welcome the absence of painful needle sticks that IV chemotherapy requires.  But the advantages of oral chemotherapy are balanced – if not outweighed by – the responsibility for self-treatment of a serious disease.  

Treating Cancer with Pills

When a person receives IV chemotherapy, the oncologist knows exactly how much medicine a person receives because the treatment is closely supervised by medical and nursing staff.  But when treatment is done at home, the responsibility for adherence – ensuring that cancer medication is taken as prescribed – falls on individuals with cancer and their caregivers. 

What Is Adherence?

Adherence means taking medications safely, timely, faithfully and accurately.  It also means that: 

  • No doses are skipped
  • No extra doses are taken
  • No doses are taken in the wrong quantity, at the wrong time, or under the wrong conditions (e.g., with or without food)

Adherence is very important in cancer treatment.   However, many adults have a poor track record with adherence. Recent research shows that more than 50 percent of Americans do not take prescription medicine as instructed.  The numbers are even worse with cancer drugs – it’s estimated that only 30 percent of people with cancer take their medication as prescribed.   Non-adherence (not using medication as prescribed) is associated with more doctor visits, more hospital admissions, and longer hospital stays – all of which contribute to rising health care costs.   The estimated cost to the U.S health care system of non-adherence to prescription medications is $100 billion – and rising. 

Why Is Adherence to Cancer Medication So Important?

With any medication, non-adherence can have a serious impact on a person’s health.  But the stakes are often higher in cancer treatment.   Not taking cancer medication as prescribed may mean that that drug won’t work, since a certain amount of medication (referred to as a “therapeutic level”) needs to be in the body in order for the drug to be effective.  In many cases, cancer may return if a person takes the cancer medication occasionally, or stops taking it altogether.  Non-adherence can also affect how the doctor views the patient’s illness, and may result in unexpected changes to a patient’s treatment. 

The Challenge of Adherence

As simple as it sounds, adherence can be challenging.   Many people have difficulty fitting medication-taking into a busy lifestyle, which may include work, family, and other obligations.   Some people fear that cancer treatment will take away enjoyment and pleasure in life; others may feel burnout or “treatment fatigue” from long-term use of cancer medication. 

Ways to Incorporate Medication-Taking Into a Busy Life
  • Use weekly pill containers – These inexpensive tools allow you to organize your medications into daily doses, and are especially helpful if you are taking multiple medications or planning to travel.
  • Explore electronic adherence tools – such as cell phone text reminders.
  • Identify pill-taking cues – Consider taking your medication when you do other regular activities, such watching certain TV shows or brushing your teeth.
  • Develop an action plan for unexpected and special events - such as weekends, vacations and celebrations.
  • Ask your loved ones for help– Adherence is always easier when you have support from others.
Keep in mind – medication adherence is
difficult and everyone makes mistakes
at times.
  •  Understand how your cancer drug interacts with food and other medications you are taking – A pharmacist is an excellent resource if you have questions about food and medication interactions.  
  • Maintain regular phone or face-to-face contact with your health care provider.  Cancer medication instructions are often complex.  Talk to your health care provider if you have any questions about your treatment.   And remember to report side effects, as these can also affect adherence to your medication.
Special Considerations for Older Adults with Cancer

Older adults face special challenges in maintaining good adherence.   Having more than one illness at the same time (often referred to as “co-morbidity”) is one such challenge.    For older adults, having multiple conditions (such as cancer and heart disease or diabetes) increases the number of prescription medications, which makes adherence more difficult.  Older adults are also at increased risk for dementia or other cognitive problems, and may forget to take their medications or become confused about medication instructions.  They may also have arthritis or other functional difficulties, which may make it challenging to open pill bottles.

Adherence decreases as the number of
daily medications increase.

Ways to Improve Cancer Medication Adherence With Older Adults

Make sure to have clear instructions for all cancer drugs.  A doctor or nurse should review the instructions in the office and also provide written instructions to take home.   Be sure to ask questions if anything is unclear or confusing. 

  • Caregivers and loved ones should fully understand the medication instructions.    Cancer medication instructions are often complicated, so it’s helpful for caregivers and family members to understand the instructions as well, even if the person with cancer can take the medication without assistance.
  • Have an updated, written list of medications in hand, when talking with health care professionals and caregivers.
  • Ask the pharmacy to provide easy-to-open medication caps, pre-loaded medication dispensers and large print medication labels.
  • Use a pharmacy that provides home delivery of medications, such as specialty pharmacies that ship overnight.
Resources

The National Transitions of Care Coalition (NTOCC) has some helpful tools to help you organize your medications.  NTOCC has created My Medicine List for persons who take multiple medications or visit the doctor often, to help manage their medications and medical appointments.  Visit www.ntocc.org/Portals/0/My_Medicine_List.pdf  for more information. 

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Bio: 

Stacy Collins, MSW, is a Senior Practice Associate at NASW, specializing in adult and pediatric health care issues. Ms. Collins has over 20 years of experience in health care advocacy, education, and direct service with national and community-based organizations.   As one of the NASW staff covering oncology, Ms. Collins developed a web education course for social workers on promoting adherence in oral chemotherapy, in conjunction with the National Coalition for Cancer Survivorship.  Prior to joining the NASW staff, she was the project director for a federally –funded initiative to develop community engagement strategies for large-scale cancer clinical trials.  Ms. Collins holds an MSW from the Catholic University of America and a BA from the University of Virginia.

Articles by Janet Liechty, PhD, MSW, LCSW

Introduction

Janet Liechty received her PhD in Family Studies from the University of Maryland in College Park, an MSW from the University of Maryland School of Social Work in Baltimore, and a B.A. in Social Work from Goshen College. She has worked for over 14 years as a licensed Social Worker in hospitals, clinics, and health promotion programs with families and adolescents, adults with developmental disabilities, and persons with physical disabilities and chronic illness. She also maintained a private practice and consulting business for 10 years prior to joining the faculty at University of Illinois at Urbana-Champaign in 2007. She holds a joint appointment with the School of Social Work and College of Medicine.

Articles by Dr. Liechty on this site are:

Cancer Current Trends – Adolescent Cancer Survivors and Substance Abuse Risk

Introduction

The survival rates for children with cancer have steadily increased due to life-extending therapies (Cox, McLaughlin, Steen, & Hudson, 2006; Friedman, Freyer, & Levitt, 2006). Reports indicate that 80 percent of children diagnosed with various forms of cancer in the United States today are expected to survive their disease and treatment (Greenlee, Murray, Bolden, & Wingo, 2000).

With continued funding and new treatment advances, members of CureSearch, the world’s largest childhood cancer research organization, predict that the survival rate can be raised to 85 percent in the near future (CureSearch, 2007). There are currently 270,000 survivors of childhood cancers in the United States (National Cancer Institute, 2004); by 2010 an estimated one in every 640 young adults in the U.S. between the ages of 20-39 will be a childhood cancer survivor (Hewitt, Weiner, & Simone, 2003).

Adolescent Cancer Survivors Face Physical and Psychological Challenges

Adolescence is a unique developmental period where self-image is extremely important, and it is especially difficult for teens battling cancer, whose symptoms and treatment prevent them from experiencing a normal adolescence (Forsbach & Thompson, 2003).

Adolescents who survive cancer often experience physical and psychological late effects post treatment. Life-extending therapies which contribute to high survival rates are associated with multiple physical effects such as cardiotoxicity, additional malignancies, organ damage, neurocognitive and psychological impairment, osteoporosis, diabetes, and obesity (Bhatia &e; Sklar, 2002; Glover et al., 2003; Hoffmeister, Storer, & Sanders, 2004).

In addition to physical effects, adolescent cancer survivors may experience psychological effects such as depression, anxiety, poor peer relations, low school performance, loneliness, post-traumatic stress disorder (Stuber, 2006), and obsessive worrying (Hewitt et al, 2004; NCI, 2004) which contribute to low self-esteem and a poor outlook on life (Zebrack & Chesler, 2001).

Adolescent Cancer Survivors and Substance Use Research Findings

Recent research has shown that the physical and psychological effects of cancer treatments are predictors of substance use among adolescent survivors (Cox et al., 2006). In addition, adolescent cancer survivors are smoking and drinking at comparable rates with healthy adolescents (Hollen & Hobbie, 2001). Substance use is a problem for all adolescents; however, adolescent cancer survivors are more prone to health problems associated with such risky behavior.

Substance use can greatly compromise the health of childhood cancer survivors. Adolescent cancer survivors who engage in substance use increase the risks of physical and psychological late effects due to cancer treatments (Cox et al., 2006; Hollen & Hobbie, 2001). The Children’s Oncology Group (COG) released long-term follow up guidelines for childhood cancer survivors that suggest alcohol use could increase the occurrences of secondary cancers for childhood cancer survivors (CureSearch, 2007).

Studies investigating adolescent cancer survivors and substance use have only just begun. The few research studies that have investigated adolescent survivors’ risky behaviors focus solely on physical and psychological effects as predictors of substance use. Researchers should continue to explore why adolescent cancer survivors choose to use substances, and what factors influence their decision-making processes. Adolescent survivors may try to adapt their behaviors to match the actions of their “healthy” peers. In other words, if their “healthy” peers are engaging in substance use, they may follow suit, to fit in with their desired social group. Therefore, the difficult process of readjusting to “normal adolescence” post-treatment may be one factor that causes adolescent survivors to engage in risky behavior.

A recent qualitative exploratory study of 12 adolescent cancer survivors conducted at Dell Children’s Medical Center of Central Texas resulted in four overarching themes that describe their experiences: finding meaning, identity paradox, need to belong, and substance use. Further analysis revealed nine secondary themes related to adolescent cancer survivors’ adjustment: appreciation, personal growth, survivor identity, cancer identity, isolation, importance of family, friends, and health care providers, lack of support as a survivor, social support for substance abuse, and awareness of risk (Jones et al., 2008).

According to the results of in-depth interviews completed in this study, adolescent cancer survivors experience a different life journey than their healthy peers for many reasons. Adolescent cancer survivors are faced with mortality earlier and more frequently than their healthy peers. It was evident from the interview responses that many adolescent cancer survivors have lost very close friends with whom they have undergone treatment.

Dealing with this type of loss can potentially increase their levels of distress and put them at further risk for substance use and abuse. In fact, some adolescents may experience a deep sense of survivor’s guilt. In addition, after lengthy periods of time when these adolescents must endure painful treatment protocols and missed opportunities for normal adolescence, they may rebel post treatment by engaging in substance use and other risky behaviors.

Since adolescence is a period for normal experimentation and the development of one’s own identity, teen cancer survivors may repeat the tasks of adolescence at a later age after completing treatment. This risky behavior can be quite alarming to their family, friends, and health care providers given the gravity of their recent illness and the potential for harm to their future health.

Implications for Social Workers

Social workers need to be aware of the risks and reasons that adolescents who have survived cancer may engage in substance use, abuse, and other risky behaviors. Practitioners need to conduct a comprehensive psychosocial assessment of the social and development needs of these young survivors. They need to be highly vigilant of the potential for substance use behaviors that may not fit the expectations of these adolescents who often appear more mature than their peers.

On one hand, these survivors have the wisdom and insight that comes from facing a life threatening illness. However, on the other hand, some of their development may have been halted by treatment and their interrupted adolescence. Social workers can also help families understand the unique dilemma faced by cancer-surviving adolescents.

All adolescent cancer survivors need to have a health care practitioner or team trained in the psychological and physical late effects of cancer. Fortunately, childhood cancer survivor clinics are becoming more and more available throughout the country. If a practitioner working with a cancer surviving teen identifies a problem with substance abuse (for example, in a school setting), an appropriate referral to an expert in substance abuse counseling should be made. In addition, practitioners should educate parents as to the signs and symptoms of substance use and risky behaviors in this population.

Social workers can engage adolescent cancer survivors in self-reflection about their cancer experience and the meaning they attach to their survival. Adolescent survivors can be involved in creative expressions, group support, and activities that build self-esteem. Connecting survivors with peers who have gone through cancer treatment can be done in person or online. Survivors can be encouraged to write or blog about their lives throughout this experience and find meaningful support. Ultimately, adolescent cancer survivors want to have a “normal” adolescence and young adulthood. Social workers can facilitate this transition by encouraging them to engage in life enhancing rather than life-depleting behavior sand activities.

References

Bhatia, S. & Sklar, C. (2002). Second cancers in survivors of childhood cancer. Nature Reviews: Cancer 2, 124-132.

Cox, C. L., McLaughlin, R. A., Steen, B. D., & Hudson, M. M. (2006). Predicting and modifying substance use in childhood cancer survivors: Application of a conceptual model. Oncology Nursing Forum, 33, 51-60.

CureSearch. (2007). Organizational fact sheet. Retrieved from http://nccf.org/uploadedFiles/About_Us/CureSearch_fact_sheet_04.17.pdf on February 1, 2007.

Forsbach, T., & Thompson, A. (2003). The impact of childhood on adult survivors’ interpersonal relationships. Child Care in Practice, 9, 117-128.

Friedman, D. L., Freyer, D. R., & Levitt, G. A. (2006). Models of care of survivors of childhood cancer. Pediatric Blood & Cancer, 46, 159-168.

Glover, D. A. et al. (2003). Impact of CNS treatment on mood in adult survivors of childhood leukemia: A report from the Children’s Cancer Group. Journal of Clinical Oncology, 21,4395-4401.

Greenlee, R. T., Murray, T., Bolden, S., & Wingo, P. A. (2000). Cancer statistics 2000. CA: Cancer Journal for Clinicians, 50, 7-33.

Green, D. M. (2003). Late effects of childhood cancer. In M. Hewitt, S.L. Weiner, & J.V. Simone (Eds.), Childhood cancer survivorship: Improving care and quality of life (pp. 49-89). Washington, DC: National Academies Press.

Hoffmeister, P. A., Storer, B. E., & Sanders, J. E. (2004). Diabetes mellitus in long-term survivors of pediatric hematopoietic cell transplantation. Journal of Pediatric Hematology/Oncology, 26, 81-90.

Hollen, P. J., & Hobbie, W. L. (2001). Decision making and risk behaviors of cancer-surviving adolescents and their peers. Journal of Pediatric Oncology Nursing, 13, 121-134.

Jones, B.L., Parker-Raley, J. & Barczyk, A. (2008). Adolescent cancer survivors: Meaning, identity and risk of substance abuse. Austin, TX: Dell Children’s Medical Center of Central Texas.

National Cancer Institute, National Institutes of Health. (2004).Living beyond cancer: Finding a new balance. President’s Cancer Panel 2003-2004 Annual Report. Washington, DC: Author.

Zebrack, B. J., & Chesler, M. (2001). Health-related worries, self-image, and life outlooks of long-term survivors of childhood cancer. Health and Social Work, 26, 245-256.

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Dr. Jones is a co-director of The Institute for Grief, Loss and Family Survival and an assistant professor in the School of Social Work at the University of Texas at Austin. She may be reached at barbarajones@mail.utexas.edu.

Jessica Parker-Raley, MA is a staff member of the Pan Am School of Communications at the University of Texas in Edinburgh. She may be reached at P2575@mail.utexas.edu.

Dr. Pomeroy is a co-director of The Institute for Grief, Loss and Family Survival and a professor in the School of Social Work at the University of Texas at Austin. She is a member of ATOD Specialty Practice Section Committee. She may be reached at bpomeroy@mail.utexas.edu.

Healthy Lifestyle Tip Sheet – Establishing Healthy Eating Habits in Families

Introduction
Family Role
Parent-child Relationship and the Division of Responsibility for Feeding
Intuitive Eating
Normal Eating
Food as Reward or Punishment
Family Mealtimes
Tips – What Parents Can Do to Promote Healthy Eating in Children
Related Web Sites

Introduction

What does it mean to be a healthy eater? Every parent wants to raise children who have
healthy relationships to food and their bodies. Eating with family and friends can be a time of pleasure, conversation, enjoyment, and nourishment. But all too often, food and mealtimes have become arenas for power struggles, shame, guilt, and a sense of inadequacy.

Family Role

Parents play a powerful role in shaping children’s food preferences, eating habits, dietary attitudes, nutritional knowledge, cooking skills, and food shopping skills. Parents are children’s first teachers and role models concerning food and eating. Children learn more from what they see and experience than from what they are told. Thus, caregivers’ own habits around eating greatly influence their children’s lifetime relationship with food.

Parent-child Relationship and the Division of Responsibility for Feeding

Parental feeding styles influence children’s eating. Nutritionist and social worker Ellyn Satter has developed a helpful tool for parents to use to determine appropriate roles and responsibilities for feeding that have been adopted by the Centers for Disease Control and many hospital and clinic programs. Satter’s Division of Responsibility proposes that the adult caregivers are responsible for determining what, when, and where to feed children, and the child is responsible for determining how much and whether or not to eat. This simple but profound approach to family feeding encourages the child to develop and trust his or her own body’s ability to self-regulate calorie intake within safe and nutritionally sound parameters set by the parents.

Intuitive Eating

Nutritionists Evelyn Tribole and Elyse Resch teach about the concept of Intuitive Eating, a process of slowing down, paying attention, and honoring the body’s signals of hunger, fullness, and thirst. This fosters greater reconnection to the body’s natural ability to regulate eating. Social workers Jane Hirschmann and Lela Zaphiropoulos, use a similar approach to help people overcome compulsive eating with a simple but wise formula: eat when you’re hungry, eat exactly what your body craves, and stop when you are full. Their years of experience have convinced them that we can all return to our body’s natural ability to eat well, without guilt or shame, and with enjoyment. Young children are natural intuitive eaters. However, this ability can be threatened by power struggles, food used as reward or punishment, counterproductive role modeling, environments saturated with unhealthy food choices, rushed eating, and food advertising targeted at children.

Normal Eating

With so many fad diets and weight loss gimmicks out there, it can be difficult to know what “normal” eating is, and some think they need to be “perfect” at eating healthfully. However, normal eating is actually a flexible process in which you eat when you feel hungry, eat what satisfies, and know that caloric intake can vary day to day but balance out over time. There are no hard and fast rules when it comes to normal eating. Some people may find that eating three meals a day suits them while others prefer 4-6 smaller meals. What is normal will vary according to one’s lifestyle, schedule, moods, and activity levels. Moderation is key. It is important to pay attention to what you eat and focus mostly on healthy foods, but not get too caught up in a strict diet that keeps you from enjoying food, family, and meal traditions. Normal eating is about flexibility, pleasure, and listening to your body’s signals.

Food as Reward or Punishment

Unfortunately, many families use food as a reward (e.g., a cookie for good behavior) or punishment (e.g., no dessert for misbehavior). This misuse of food can disrupt children’s natural intuitive eating ability. As author Alfie Kohn (Punished by Rewards) has shown us, these practices also tend to elevate the desirability of food that is used as a reward, and decrease the desirability of food that must be eaten to receive a reward. Food used as a source of punishment or reward sets up power struggles around eating that further interrupt the child’s natural self-regulation around eating. Do you remember ever being required to “clean your plate” before leaving the table? Such rules can lead to confusion among children between their desire to please their caregivers (or just get up and play!) and their felt sense of fullness or hunger. The “clean plate club” approach may inadvertently require children to keep eating even if they are full, lead to guilt about wasting food, or simply lead some kids to associate eating with frustration, guilt, or anger.

Family Mealtimes

The family mealtime offers a great opportunity for families to develop and practice healthy eating habits. Research shows that children who eat more meals with their families consume more fruits, vegetables, and milk, while eating less fried foods and soft drinks. In turn, children who eat fewer family meals are more likely to experience overweight or obesity. The family mealtime also provides an opportunity for parents to model healthy behavior, including menu planning, food preparation, and portion size. Mealtimes should be a positive and pleasurable experience that promote positive associations with healthy eating, cooking, and socializing. Conversations that provoke anxiety, such as highly personal conflicts or disciplinary measures, are best saved for another time. Distractions such as telephone, TV, and radio are best avoided as well. Research suggests that families should aim for at least four regular family mealtimes per week.

Although it may be challenging, making the family mealtime a priority is not impossible. Creativity, flexibility and planning ahead are needed to help overcome scheduling challenges. For instance, families might try changing the time of day or meal that they eat together, incorporating a picnic into an outing or sporting event, or setting aside at least one day of the week when everyone agrees to regularly eat together. If you must eat fast food, skip the drive- through and take a few minutes to park the car and sit down inside. If your child must eat early or separately from the family to get to a sports practice or event, try sitting down with him/her at the table while he/she eats and chatting. If your family struggles to include even one shared meal per week, start with small changes. Setting aside 10 minutes to eat together counts! Even a shared snack in the afternoon or evening where family members sit down around a table together can be a good place to start.

Tips  – What parents can do to promote healthy eating in children

Here are some useful guidelines for parents and caregivers to promote healthy eating in their children. 

  • Remember the division of responsibility. Parents decide what, when, and where to feed their children; and children decide how much and whether or not to eat. 
  • Trust the child’s capability to self-regulate and mange his or her own eating, and support him or her in the choice of how much and whether or not to eat. 
  • Remember there are no “good” and “bad” foods. Any food can be enjoyed in moderation and balanced with other nutrients. 
  • Offer a range of fresh or non-processed food choices to children including fruit and vegetable options and whole grains for snacks and at every meal. 
  • Cultivate nutritional knowledge in your children by talking about what nutrients are found in various foods. 
  • Teach and guide children to listen to their bodies, and pay attention to stages of hunger and thirst. 
  • Help your children identify and express difficult feelings in ways other than turning to food to deal with emotional discomfort. 
  • Foster positive and pleasant attitudes towards eating, and avoid using rigid or coercive rules. 
  • Slow down! Eat slowly and mindfully, and savor your food. Sit down while eating, and take a few relaxing breaths between bites. 
  • Try to get some physical activity or exercise in every day. It helps balance mood and appetite, reduce stress, and improve circulation. 
  • Stay informed about school lunch policies and food options for children, and support changes that provide healthful options. 
  • Advocate for local policies to improve access to non-processed, healthy foods for all families, including those with limited transportation and income.
Related Web Sites:

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Disabilities Real Life Story – Deaf School Abuse

Daniel Lewis, 27, recounts how his life changed after he was raped by another boy in 1994 while attending the Louisiana School for the Deaf. His mother Susan sits nearby. Daniel is deaf and borderline mentally retarded.
BRYAN TUCK/Advocate

Fourteen years ago, 13-year-old Daniel Lewis enrolled as a boarding student at the Louisiana School for the Deaf, a place that was supposed to give him the skills to engage with the world.

That August, Daniel — with bright blue eyes and blond hair, but borderline mentally retarded and smaller than his peers — moved into a room in the middle school dorm on the school’s Baton Rouge campus with three other boys.
During Daniel’s second week at the school, one of his roommates, a larger 13-year-old of normal intelligence, began crawling into his bed at night to rape him, Daniel recounted recently.

Susan Lewis, Daniel’s mother, pulled him from the school after only three weeks, when Daniel, despite not completely understanding what had happened, managed to tell her.

“I came home and told my mom what happened, all of it,” Daniel said.

Daniel’s rape was one of several at the school in the early 1990s, court records show. A four-part WBRZ series in 1999 uncovered “numerous and unabated” sexual incidents among students at the school, including rapes and molestations, many of which were not reported to police.

That series prompted state officials to form a task force to investigate those allegations and make recommendations for changes.

But a spate of recent incidents suggests that problems with sexual misconduct persist at the school.

A five-month Advocate investigation has revealed that in the past five years, seven adults — three teachers, a dorm worker, a counselor, a Sunday school teacher and a former student — have been accused of improper sexual behavior with four girls at the school.

Additionally, hundreds of pages of police and school incident reports show at least 32 incidents of sexual misconduct among students in the past five years, ranging from rape to sexual battery to inappropriate touching.

“That’s unreal, why hasn’t it stopped? Why hasn’t anybody in an administrative position stopped this?” Susan Lewis asked after hearing about the recent incidents.

School and state education officials maintain that they have adequately addressed the problem by reporting incidents to authorities, holding workshops with students and meeting with parents.

In a recent interview, state Superintendent of Education Paul Pastorek stressed that the five arrests of school employees were for alleged crimes that did not involve actual “skin-on-skin” sexual contact with students. Investigators have said that there was no skin-on-skin contact in the other two arrests either.

“I’ve been told by the experts that we brought in that the amount of activity we have going on is lower than normal as compared to (other) residential deaf education settings,” Pastorek said. “Having said that, is it good to have these kinds of actions? No, it’s not good. Is it acceptable? No, it’s not acceptable. Is it something we should try to reduce? Yes.”

Several outside experts maintain that deaf schools are an essential place for developing deaf culture and should be safe havens for students. No level of sexual misconduct is acceptable, they say.

A series of arrests

The 156-year-old state-run Louisiana School for the Deaf — with an annual budget of more than $20 million — is situated on 116 grassy acres on Brightside Lane in Baton Rouge and serves 225 students ages 3 to 21.

With the student body drawn from across the state, 146 live in the school’s six dormitories during the week. They are bused home on Friday evenings and return to the school on Sundays, interim director Kenneth David said.

Aside from being deaf, 28 percent of the school’s students have an additional disability, such as autism, below-normal mental capabilities or blindness, said Virginia Beridon, interim director of the state’s Special School District, which also oversees the state blind and special education schools.

The school employs 55 teachers, 23 teacher’s aides and 50 dorm workers, Beridon said.

While in the 1990s the school’s problems seemed to be limited to inappropriate sexual behavior among students, the problem today includes teachers and staff accused of being offenders.

The seven adults arrested from May 2003 to April 2008 are all deaf and were either school employees or members of the state’s tight-knit deaf community.

Four of the employees — Ray Freeman, Nathan Boyes, Christopher Watson and Amanda Key — were accused of sending a mix of explicit e-mails, text messages and photographs to teenage students.

A fifth employee, Charles Hodges, was convicted of molesting a 15-year-old girl. Prosecutors claim he forced her to touch him over his clothes when he was chaperoning a school trip to Florida.

A sixth arrest occurred when Brandon Veronie, a former student, sent explicit text messages to a 16-year-old girl. His plans to have sex with her in a field were thwarted when the student’s mother found the e-mails, police said.
Joey Thomas, a Sunday school teacher at the Liberty Deaf Assembly of God Church and former student, was arrested most recently. He was accused of sending explicit text messages and e-mails to a 14-year-old girl he considered his girlfriend.

Other inappropriate sexual behavior from teachers, while not criminal, has also occurred in the past five years.

Kristin Post Thibodeaux was allowed to resign in 2004 after an internal school investigation found she had conducted a series of inappropriate activities with her fourth-grade students. She taught them about oral and vaginal sex, put a thong on a boy’s head and stuck sanitary napkins on another student’s back, documents provided by the school say.

Melissa Stevens, one of the parents who sparked the investigation of Thibodeaux, said she was troubled by the way the school handled the situation.

“Allowing her to resign instead of being disciplined by termination, I don’t think that was appropriate,” Stevens said.
Adults were not the only people accused of sexual misconduct with deaf school students.

Under the state’s public records laws, The Advocate obtained internal school incident reports for 32 cases of student-on-student sexual acts that school administrators have handled since January 2003.

Of those, five were classified by the school as “Class A” offenses, defined as rape, sexual battery or a “repeated Class B offense.”

For a Class A offense, students receive from three to five days suspension or assignment to the After School Behavioral Center. Incidents are referred to police and the Office of Community Services when appropriate, school officials have said.

Freeman, the staff member arrested and convicted in 2005 on charges of obscenity, worked in the After School Behavior Center, counseling students when their behavior was inappropriate for the classroom.

The remaining reports were for “Class B” sexual misconduct, defined in the student handbook as “having sex or being involved in sexual activity (molestation) on-campus or off-campus during any school-sponsored activity.” For a first-time Class B offense, students receive one to three days suspension and assignment to the After School Behavioral Center.

In response to The Advocate’s public records request about student-on-student sexual acts, the deaf school provided incident reports that were almost completely blacked out. Those deletions made it nearly impossible to get a clear sense of what happened and the age or sex of the students involved.

Additionally, school officials and lawyers for the Department of Education repeatedly refused to provide the dates of offenses. They said providing that information would identify individual students.

Responding to a July letter asking for the dates of offenses, Pastorek offered in late September to provide them in exchange for blacking out more information. The Advocate declined.

While the documents provided by the school do not provide a clear description of the offenses in question, some contain narratives of meetings among students, staff and parents over allegations of sexual misconduct.

The following are excerpts from the reports provided by the deaf school, and two recent responses from David, the interim school director. 

David asked a victim if maybe he or she “did not really want sex but just accepted it and was not forced.” The victim replied that the sex was forced.

When asked about this, David said the context could not be provided because it would reveal personal identifying information about the students involved. 

David stated that he might make a scarlet letter to put on the shirt of a student so that everyone would know the student was sexually active and must be closely watched.

Asked about tshe comment, David said: “Because our students are language-delayed and language-disordered, in order to get them to understand the seriousness of a situation that they were involved in we have to come up with some situations to help them understand how serious it would be. We have to make it very concrete because of the language barrier there.” 

The mother of a student “stated she was angry with the school because this was the fourth incident that had occurred where she had not been notified.”

Police reports obtained from the same five-year period provide much more information. But because the dates are not included on the school’s reports, it is impossible to match up the two sets of documents.

The police reports show that:

  • In March 2004, a 14-year-old boarding student at the school reported to police that someone came into her dorm room while she was sleeping and fondled her. No arrest was made because she could not identify the attacker.
  • In November 2005, a 14-year-old boy told his mother he did not want to go back to the school because he had been raped by a 15-year-old boy in a dorm room. A juvenile sex crimes detective investigated, but there was not enough evidence to arrest the 15-year-old, a police report says.
  • In February 2006, a 16-year-old girl reported that she was sexually assaulted by a 17-year-old boy. He pushed his hand inside her underwear after grabbing her in a recreation room at the school. The victim decided not to pursue charges after her assailant withdrew from the school.

The school responds

In the late 1980s and early ’90s, stories of student-on-student rapes at the school made headlines, prompting lawsuits and the arrests of at least two students.

A four-part series that aired on WBRZ-TV prompted then-state Superintendent of Education Cecil Picard to convene a 12-member task force of social workers, outside educators and parents to investigate incidents at the school.

In a 2000 report, the task force faulted then-school superintendent Luther Prickett for his “top-down” management style.

The report concluded that the sexual misconduct they found was not unique to the Louisiana School for the Deaf. Those problems “are seen in any comparable institutional setting, in public and private schools and life in general,” the report says.

Prickett retired in 2005. Longtime employee David, then dean of students, took over as interim director of the school.

This year, after the arrest of Joey Thomas in April, Pastorek announced that he was bringing in another set of experts to evaluate the school’s response to the problems.

Pastorek hired Dr. Alan Cohen a psychiatrist at the National Deaf Academy and Reginald Redding of the Eastern North Carolina School for the Deaf. Cohen was paid $9,688; Redding $3,000, Beridon said.

Beyond hiring consultants, Pastorek also met with parents in May to discuss the arrests.

Beridon said the consultants spent three days at the school in June. They reviewed documents and met with staff and four parents at a time when the majority of the student body was home on summer vacation.

Pastorek said he has met twice with both experts and has been encouraged by their evaluation of the school. They will issue a report in October.

“I feel confident that what we’re doing at the school is the right thing and that we’re taking reasonable steps to ensure the safety of the children,” Pastorek said.

During the hiring process, the school performs background checks of potential employees. Also, once hired, employees are required to sign a form in which they agree that only designated sex education teachers can discuss sex with students.

Pastorek also said the school reports incidents to authorities as they arise.

Letters David sent to parents indicate he has been more proactive than Prickett in communicating with parents.

David sent parents multiple letters about the five arrests that occurred during the 2007-08 school year. In a letter sent to parents in April, David wrote that incidents leading to the arrests did not happen on school hours or on school property and stressed that inappropriate correspondence could be found at any school.

“I would also like to suggest that if someone were able to procure transcripts of all cell phone communications of students at any school &hellip that such transcripts would reveal totally shocking information. Inappropriate use of electronic communications and/or the Internet is not unique to LSD — it is occurring everywhere,” David wrote. “However, we need to be ever-vigilant in protecting our students.”

Kaedra Arnold, the grandmother and legal guardian of a 13-year-old fifth-grader at the school, said her grandson has benefited from the school’s education and has not been involved in any of the sexual misconduct cases.

However, she urged the school to be vigilant and not accept any level of sexual misconduct within its walls.

“The standards ought to be set so high so that you have something to aim for,” Arnold said. “We need to make sure that we’re not measuring ourselves against other people and against other establishments.”

‘Easier targets’

Frederic G. Reamer, a professor of social work at Rhode Island College who has spent years working with offenders who prey on the disabled, said deaf children and adolescents are especially vulnerable to abuse.

Reamer said some sexual predators even seek out children and teenagers with disabilities because they are “relatively speaking, easier targets, easier marks.”

Deaf children with multiple handicaps are “especially vulnerable because they may not have the wherewithal that other kids would have to resist the adult’s sexual advances and they may find it difficult to speak up about them,” Reamer said. “They may find it extremely difficult to assert themselves and disclose to other people in authority what is going on.”

Reamer was quick to add that he has encountered sexual misconduct in other institutional settings involving the disabled.

“I think it cuts across a number of different disabled populations, and this is an especially vulnerable population because they’re kids,” Reamer said.

Deaf children at residential schools are often far away from their parents and tend to rely on teachers and staff for encouragement and support more than other children would.

Sexual scandals occur at deaf schools around the country. In May, a dorm supervisor at the Texas School for the Deaf in Austin was arrested after confessing to fondling a boy in his care.

“The stories are heartbreaking and the kids are very vulnerable for a lot of reasons,” said Donna Mertens, a professor of education at Gallaudet University and author of a 1996 study on sexual abuse at deaf schools.

In her study, Mertens spent two weeks evaluating the situation at a state-run deaf school that had seen a number of arrests and convictions.

“So many people told me ‘that’s the way it’s always been, that always happens to deaf kids,’ and they’re not surprised by it,” Mertens said. “There’s just no excuse for denial. &hellip The basic principle that needs to guide your actions is the safety of the children.”

Mertens stressed that deaf schools play a crucial role in providing a place for deaf children to feel normal and be around others who share their language and culture.

Lawrence Siegel, a special-education attorney based in Fairfax, Calif., and the founder of the National Deaf Education Project, agreed that deaf schools are important places for deaf children to form peer relationships.

A deaf child attending mainstream public school might be the only deaf child there, he said.

“The school where a 12-year-old deaf kid can have a 12-year-old deaf peer is truly the least-restrictive environment,” he said.

Deaf schools provide a place where deaf children can communicate with each other in American Sign Language, their first language, and not feel as isolated, Siegel said.

“The value of these kind of language-rich environments is really staggering, Siegel said.

Daniel Lewis, the 13-year-old boy who was raped at the deaf school in 1994, never benefited from immersion in the language-rich environment. Instead, he went home.

A lawsuit over the rape was settled out of court. His mother declined to discuss it because of a confidentiality agreement.

With the help of a therapist, Daniel slowly recovered from the trauma of the rape. But his quality of life has been profoundly impoverished by the incident, his mother said. Daniel has no deaf friends and never learned sign language.

Today, Daniel is a soft-spoken 27-year-old who lives an isolated life with his mother and his dog, Daisy Mae, and several cats in a town of 1,300 in Acadia Parish.

“He did belong there—he was part of the deaf community. And now he’s not at all,” Lewis said.

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Reprinted with permission of The Advocate.

Living With Illness – Your Options: A Mother’s Journey – A Child’s Epilepsy and the Effects on the Family

Introduction
The Nature of Seizures
Natalie’s Case
Conclusion
Introduction

As I sit across from Elizabeth during our last meeting, I realize that she is not the woman I first met. I first met Elizabeth five years ago when her daughter Natalie came to the hospital with new onset seizures. She and her husband Miguel were understandably terrified and unaware of the long road that lay ahead of them. We sat together in that uncertainty.

When a child is diagnosed with a new illness or condition, parents grapple with their own emotions while trying to attend to the immediate needs of their child. Suddenly, the hope and excitement they held for their child’s future is diminished. Instead, they may be filled with overwhelming fear and concern. They have questions about the present situation as well as what the future may hold. Each family member experiences the diagnosis in their own way and feels their own personal loss as a result.

The Nature of Seizures

According to The Epilepsy Foundation, seizures are the third most common neurological disorder in the United States following Alzheimer’s disease and stroke. The Epilepsy Foundation reports that approximately 300,000 children under the age of fourteen have been diagnosed with epilepsy (EF, 2007). Seizures occur when there is an abnormal discharge of electrical activity in the brain. The type of seizure determines how it will present itself (generalized versus partial). A seizure’s type, location, and duration are some of the factors that determine its impact (Browne & Holmes, 2004). Medication is typically the first treatment used. However, when seizures do not respond to treatment with medication, interventions such as surgery are often explored.

Living with a seizure disorder affects the child as well as the family. Siblings, spouses, and extended family members often feel rejected or ignored during medical visits and hospitalizations. Parents may become over-protective for fear that their child will have a seizure in their absence. As a result, children with seizures may feel isolated and frustrated by the lack of normalcy in their lives. Many studies indicate that a parent’s perception of their child’s condition has a dramatic impact on the child’s perception. Thus, parents not only have the opportunity to enhance how their child experiences epilepsy but also how the child shares it with the world (Shudy, Lihinie De Almeida, Ly, Landon, Groft, Jenkins, & Nicholson, 2006).  

Natalie’s Case

Unfortunately, Natalie’s seizures became more and more difficult to control. Despite multiple medications, her seizures persisted. When she was three years old, Natalie underwent epilepsy surgery. To everyone’s dismay, Natalie’s seizures returned after only a brief reprieve. Weeks, months, and years continued to pass. Her older sister Emily felt things would never be the way they used to be. The girls’ parents struggled to meet financial demands while seeking every treatment available. As a result of enduring daily seizures Natalie missed many opportunities to interact with her peers.

The stressors of a seizure disorder or other chronic condition  are often too much to bear. Couples may divorce, patients and siblings experience depression, and families withdraw from available support systems. But there is hope and there is help. Elizabeth and Miguel were determined to keep their family intact throughout the years of hardship they encountered. Although difficult at times, they learned how to let people help them along the way and teach them new tools to navigate the often winding road they were on. The family learned how to talk openly about the impact of this devastating condition. They learned how to be angry, not with each other, but with the change in the life they had known before. They learned how to grieve for what they had lost and for the pain they felt. Most importantly, they learned to hope for the good days and to strive for moments when they could enjoy one another.

Every day, families are struggling to take care of a child with seizures while also struggling to keep their family unit intact. A seizure disorder can not be “solved” with medication alone. It impacts patients and their families on a physical, social, emotional, and financial level. Optimal treatment requires care delivered by a multidisciplinary team. Natalie and her family were treated by a Comprehensive Epilepsy Center. The focus of their care was not only on medical intervention but on the family unit as a whole. Important elements included medical and surgical care, nursing care, neuropsychological assessment, and psychosocial team support for the parents, patient, and siblings.

At age seven, Natalie told her parents and her treatment team that it was time to have another surgery. After undergoing a second epilepsy surgery, Natalie is currently seizure free. The family routine still includes trips to the physical therapist and frequent doctors’ appointments. However, life has returned to a kind of “normal”.  Both girls are cheerleading, enjoying school, and looking forward to school dances. Their parents enjoy date night and look forward to planning the next family vacation. Of course, there are moments of sadness and anxiety for everyone. But when that happens, Natalie says “Come on guys, you gotta be brave”.

Conclusion

At the end of our time together , I look across the table at Elizabeth and I know we are ready to part ways. The woman I met five years ago felt hopeless and lost. Sitting across from me today, she is full of hope and direction for the future. The journey is far from over but she now walks it with a different beat: she is an advocate, a warrior, and a hero.

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HIV/AIDS Current Trends — Three Questions About Coping and HIV Prevention Among Gay and Bisexual Men

Introduction

Coping refers to the ways in which people respond, either consciously or unconsciously, to stress. For example, many people experience stress at their workplace. While Jack might respond to that stress by thinking through the situation and putting it into a more manageable perspective, Anthony might go to a bar and have a couple of drinks with his friends. Carol might have a discussion with her supervisor about ways to improve the working environment, while Stephanie might avoid thinking about the situation. None of these coping responses are by nature better or worse.

A coping response may be effective for one person but not someone else, and different situations may call for different coping responses. Jack tried to change the way he thought about the problem, and Carol tried to do something to change the situation causing the stress. These are examples of active coping responses. Anthony’s and Stephanie’s responses didn’t do anything about the cause of their stress, even though they might have felt better afterwards. These are examples of emotion-focused coping responses.

Anthony’s and Stephanie’s responses can also be considered avoidance forms of coping, which are responses that involve avoiding, denying, or minimizing the problem. It is often thought that active coping responses are healthier, but this is not necessarily true. For example, people who experience discrimination because of their skin color, sexual orientation, or how masculine or feminine they appear to others might not be able to do much as individuals to change their situation. Unless they join with others in social or political change efforts, perhaps the best they can do is to try to feel better emotionally.

Q. What does the way in which gay and bisexual men cope with stress have to do with HIV prevention?

Although coping with stress is something that everyone must do, the causes of stress vary from one group of people to another. In addition to the sources of stress that most people face, gay and bisexual men frequently experience stress due to prejudiced attitudes of others and discriminatory actions toward them because of their sexual orientation or gender expression.

Gay and bisexual men are more likely than heterosexual men to be victims of verbal harassment, physical attacks, and other crimes. It is not uncommon for them to experience stress due to estrangement from families of origin, faith communities, and other common sources of support.

Young gay and bisexual men are much more likely than their heterosexual peers to be victimized at school, especially if other people perceive them to be more feminine in their gender expression.

Gay and bisexual men of color, or those who are disabled, may experience additional stress because of race, ethnicity, or disability-related prejudice and discrimination. Those who are HIV-positive or who have AIDS may also experience stress related to HIV/AIDS-related prejudice and discrimination.

Finally, gay and bisexual men are much more likely than other men to experience stress due to the threat of HIV/AIDS and from efforts to maintain safer sex habits. Most gay and bisexual men cope successfully with such stress, especially those who have been able to develop sufficient sources of support. However, men who are less able to cope may experience depression, anxiety, substance abuse, or other mental health problems. Men who tend to use avoidance coping strategies may be more likely to engage in risky sexual behavior.

Q. What is the problem with avoidance coping?

Avoidance coping is not necessarily unhealthy. Sometimes there isn’t anything one can do to change the problem causing the stress, and not thinking about it might be the best one can do. However, relying on certain avoidance coping responses can increase the possibility of engaging in behaviors that risk transmission of HIV. For example, many people—including gay and bisexual men—use sex in order to cope with stress. Others may drink alcohol or use drugs. These avoidance coping responses help people to feel better and to avoid thinking about their stress. By definition, people whose coping efforts involve disengaging from or avoiding their stress are not likely to stop and think about the risks involved with their actions. Thus they may act without thinking, and they may seek experiences that are intense enough to remove their stressful feelings. In particular, some men may have sex with men they hardly know or don’t know at all, with whom they can forget their cares and simply enjoy an intensely pleasurable experience. Alcohol and drugs may be used to reduce inhibitions and facilitate the avoidance process. In these situations men are not likely to stop to talk with their sex partner about their HIV status or use condoms, especially since some men feel doing so interferes with the pleasure of the experience.

People may be more likely to use avoidance coping when they feel powerless to change the problem causing the stress, such as a difficult but unchangeable work situation. Because individual gay and bisexual men may not be able to change the prejudiced attitudes or discriminatory actions toward them, it is not surprising that some of them rely on avoidance coping strategies, including the use of sex and drugs, to feel better.

It is important to remember that the use of sex for avoidance coping purposes is only one of many reasons why gay and bisexual men may have sex. For example, they may have sex to express love or to feel closer to their partner, or to experience a sense of spiritual well-being. One should never assume that gay and bisexual men who have risky sex are doing so in order to cope with a problem.

Q. What can be done to help gay and bisexual men cope with stress?

Before implementing any action designed to reduce the incidence of risky sexual behavior among gay men, it is very important to determine what meaning that behavior has for them. Not doing so is likely to result in actions that are at best ineffective and at worst harmful.

If one is concerned about a gay or bisexual man engaging in risky sex, it would be valuable to learn how much and what kinds of stress he is experiencing and how he copes with it. If it appears that sex, alcohol, and/or drugs are being used for coping purposes, an intervention designed to expand the coping repertoire might be helpful. Coping skills training can be provided on an individual basis or in groups led by professional social workers.

However, this kind of intervention is usually designed to address only the ways in which people cope with stress in their lives, and not the causes of the stress. Gay and bisexual men may also benefit from interventions designed to increase their sense of empowerment to change a social and political environment that allows or encourages prejudice, discrimination, or violence against them. Consciousness-raising discussion groups, community-building activities, and leadership training programs are some of the ways that can help to empower such men.

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La muerte – como los trabajadores sociales pueden ayudar – El rol de los trabajadores sociales en hospicios y cuidados paliativos

Introducción
¿Cómo evalúan los trabajadores sociales a las personas y las familias?
Los trabajadores sociales son parte del equipo de cuidados paliativos
Introducción

La profesión del trabajador social permite a personas, familias, grupos y comunidades mejorar o recuperar su capacidad para una óptima salud psíquica, afectiva, espiritual, social y física. Los trabajadores sociales prestan un servicio central en los equipos de cuidados paliativos. Sus valores y aptitudes profesionales son un complemento perfecto para los programas de cuidados paliativos, cuyo objetivo es tratar a la persona en su conjunto de manera interdisciplinaria para mejorar la calidad de vida en caso de enfermedad grave.

Los trabajadores sociales defienden vivamente la autodeterminación y la atención culturalmente adecuada. Se han capacitado en la evaluación de las fortalezas de las personas y familias y comprenden que la buena atención médica exige la satisfacción y el respeto de los deseos y las necesidades de las personas. Cuando la cura ya no es posible, aparecen muchísimos factores de tensión psíquica, física y espiritual que la persona y su familia deben enfrentar y tratar, y los trabajadores sociales cuentan con capacitación especializada para proporcionar asistencia a tal efecto.

Los trabajadores sociales asisten a las personas y familias en las siguientes áreas: 

  • Tratamiento de síntomas. Tratamiento de síntomas físicos, como los ejercicios de relajación para aliviar la nausea o el dolor, es sólo un ejemplo de los servicios que prestan los trabajadores sociales. 
  • Tensión psíquica y espiritual. Los factores de tensión psíquica y spiritual, como la ansiedad, la culpa y la depresión, se abordan y tratan mediante orientación psicológica (incluido el apoyo afectivo), educación y técnicas psicológicas de corto plazo. 
  • Dilemas éticos. Puede que también surjan dilemas éticos (como el retiro o la omisión del tratamiento), y los trabajadores sociales son hábiles en la solución de problemas, la defensa y la coordinación de los recursos adecuados para buscar soluciones que sean útiles para cada familia. 
  • Apuros económicos. Los apuros económicos generalmente son un problema al final de la vida, y ésta es otra área en la que los trabajadores sociales tienen gran conocimiento y éxito para ayudar a obtener recursos como la cobertura de seguro médico, el pago de gastos y facturas de salud y la obtención del ingreso por incapacidad. 
  • Planeamiento anticipado de atención. La asistencia en el planeamiento anticipado de atención para garantizar que todos los tratamientos cumplan los deseos del paciente también se encuentra dentro del ámbito de la intervención del trabajo social. El planeamiento anticipado de atención implica tomar decisiones acerca del tratamiento al final de la atención médica y la planificación del sepelio, y comunicación de dichas decisiones a los seres queridos y en documentación jurídica. 
  • Pérdida y duelo. Enfrentar la pérdida y la posterior elaboración del duelo es otra área en la que los trabajadores sociales están muy versados. Manejar las intensas emociones relacionadas con el duelo puede ser abrumador sin el apoyo y la información adecuados. Los trabajadores sociales tienen conocimientos y habilidades que permiten facilitar el duelo y ayudar a evitar obstáculos que conduzcan a reacciones más complicadas, como la depresión. 
¿Cómo evalúan los trabajadores sociales a las personas y las familias?

Los trabajadores sociales que integran equipos de cuidados paliativos realizan una evaluación psicosocial inicial que es esencial para que la atención médica resulte eficaz y adecuada para cada una de las familias. En dicha evaluación, se incluyen preguntas sobre creencias espirituales y culturales para que los trabajadores sociales que sirven para concienciar a los demás integrantes del equipo y a sí mismos acerca de las necesidades de los familiares y, lo que es más importante, lo que no desearían.

Los antecedentes también son esenciales, ya que el trabajo social tiene en cuenta las fortalezas de la familia en el pasado, e identifica la capacidad y la fortaleza de superación que las personas ya hubieran utilizado. Dichas capacidad y fortaleza se aprovechan y aumentan para ayudar a las personas en estos momentos difíciles. Si no se presentan dificultades especiales, como una gran cantidad de pérdidas o apuros económicos, los trabajadores sociales ayudan a planificar mayor cantidad de intervención, apoyo y recursos.

Los trabajadores sociales son parte del equipo de cuidados paliativos

Como parte del equipo interdisciplinario, los trabajadores sociales representan los deseos de la persona y su familia en cada reunión del equipo, y defienden sus necesidades dentro de otros sistemas para mejorar la respuesta de los mismos y garantizar que cada familia reciba la atención disponible que se ajuste a sus necesidades. Luego de la muerte del paciente, los trabajadores sociales proporcionan información, educación y apoyo sobre el duelo para ayudar a los deudos a superar la muerte y la posterior adaptación (“nueva normalidad”) a una vida sin su ser querido.

Un estudio reciente (Reese y Raymer, “Relationships Between Social Work Involvement and Hospice Outcomes: Results of the National Hospice Social Work Survey”, Social Work, 2004) señaló, entre otras cuestiones, que hubo mayor satisfacción de los usuarios y menos noches de atención hospitalaria cuando hubo mayor frecuencia de la intervención de los trabajadores sociales en los equipos de cuidados paliativos. Al fallecer aproximadamente 2.4 millones de personas por año en Estados Unidos, resulta esperanzador saber que cada vez más trabajadores sociales de campo reciben aún más capacitación especializada para ayudar a las personas a vivir la última parte de la vida con la mayor plenitud posible y ayudar a los deudos a buscar una “nueva normalidad” que tenga sentido.

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Las opiniones expresadas en este artículo son las del autor, y no reflejan necesariamente las de la Asociación Nacional de Trabajadores Sociales de Estados Unidos ni las de sus miembros.

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Hispanic teens may be at greater risk

Hispanic high school students may be at greater risk for drug use and suicide attempts than their black or white classmates, according to a new survey by the Centers for Disease Control and Prevention.

The study, reported by the Associated Press, is the latest in a series of surveys of American high school students conducted each two years.

Among its results: Black and white high school students report less sexual activity in the past, but there was no drop among Hispanics. Also, Hispanic students were more likely than their classmates to attempt suicide; use cocaine, heroin or ecstasy; ride with a driver who had been drinking; drink on school property; sell or be offered drugs; or skip school because of fear for their safety.

Those results do not necessarily reflect the reality for students in Tahlequah and Cherokee County, say local authorities who work with young people.

“Tahlequah Public Schools participates in these national surveys, but the last one taken did not indicate that our Hispanic students were more at risk for risky behaviors than our Native American or white students,” said Val Dobbins, who coordinates the safe school/healthy school programs at Tahlequah Middle School.

She said the district will participate in the 2009 survey, and this data will provide updated information.

“We have found that at an elementary level, our Hispanic families are among some of the most responsible and caring of their children attending our schools, meaning their children make great students,” she said.

Between 1990 and 2000, the U.S. Census Bureau ranked Cherokee County among the highest ratings in the nation in the growth of its Hispanic population, with an increase of more than 200 percent. Between 40 and 49 percent of those Hispanics were under age 18.

And the number has continued to grow since 2000, the Census Bureau estimates.

Experts interviewed by the AP about the study could come up with no explanation for why the Hispanic behavior trends differed. They speculated the school environment faced by many of the Hispanics may differ considerably from those of other students, and Hispanics and blacks more commonly attend highly segregated schools.

Students who do experience problems may find it harder to obtain the counseling they need than their white counterparts.

There is an increasing gap in counseling services for Hispanic youth, said Lynne McAllister, licensed clinical social worker and coordinator of guidance clinic services at the Cherokee County Health Department. For an effective impact on counseling in a family situation, the counselor must be bilingual.

“There is too much of a chance for miscommunication when you don’t have a bilingual therapist. Words and phrases vary in the translation; cultural differences, parenting roles may vary; and even a seasoned therapist cannot bridge the gap in families unless they are bilingual,” McAllister said. “With the influx of Hispanics in our community, there continues to be gaps in counseling services for them.”

The health department has no bilingual counselors, but has two translators who have helped with counseling, as well as in the health clinic. However, translation is more effective when dealing with specific physical symptoms and advice on such issues as family planning than it is in a counseling setting.

Dobbins said the Hispanics in the national study may be different than the ones here, who most often come from families that have immigrated to this country relatively recently.

These families tend to be strong and encourage their children to do well.

However, one statistic that is applicable to Cherokee County, whatever the ethnic group, is suicide. The leading causes of death for teens are vehicle accidents, homicide and suicide.

In Cherokee County, suicide among people ages 15 to 24 is ranked second in the state, according to Vital Statistics, Health Care Information Division, Oklahoma State Department of Health.

“Part of the challenge as parents is to recognize the signs and symptoms of depression and seek counseling/support for your teen whenever possible,” McAllister said. “Teens are struggling to be independent, fit in at school, home and with friends. Oftentimes, it is critical to continue to provide guidance, support and boundaries for an adolescent who clearly wants to ‘be their own person.’”

With all the challenges facing young people today, it is more important than ever for parents to have good communication with their children, she said.

She said parents can look for these warning signs that their teens are struggling with depression:

• Changes in eating or sleeping habits.

• Frequent absences from school or poor school performance.

• Lack of interest in activities, friends, or hobbies.

• Difficulty concentrating in school.

• Running away from home.

• Lack of interest in personal appearance.

• Physical symptoms.

• Talking about death or suicide.

• Suicide attempts.