Breaking News
November 13, 2018 - Janssen Reports Positive Topline Results for FLAIR Phase 3 Study of a Novel, Long Acting Injectable Two-Drug Regimen for the treatment of HIV-1
November 13, 2018 - Experimental compound reduces Gulf War illness-like behavior in mice
November 13, 2018 - Study shows how pneumococci challenge the immune system
November 13, 2018 - Simple cysts can be safely ignored, study finds
November 13, 2018 - First fully personalized tissue implant engineered from patient’s own materials and cells
November 13, 2018 - FDA Approves Keytruda (pembrolizumab) in Combination with Carboplatin and Either Paclitaxel or Nab-Paclitaxel for the First-Line Treatment of Patients with Metastatic Squamous Non-Small Cell Lung Cancer (NSCLC)
November 13, 2018 - Scientists take big step toward finding non-addictive painkiller
November 13, 2018 - Diabetes medication reduces risk of heart failure hospitalization
November 13, 2018 - Achieving high follow-up rates for violently injured patient population is feasible
November 13, 2018 - Shortage of specific gene ‘silencing’ molecules linked with pediatric low-grade gliomas
November 13, 2018 - Abx-Resistant Enterobacteriaceae Tied to Clinical Failure in UTI
November 13, 2018 - US approves first new type of flu drug in 2 decades
November 13, 2018 - Is zinc the link to how we think? Some evidence, and a word of warning
November 13, 2018 - Dispelling taboos, Michelle Obama talks IVF and miscarriage
November 13, 2018 - Medical experts discuss future challenges of healthcare at HSMA’s inaugural conference
November 13, 2018 - Growth and spread of deadly eye tumor suppressed in cells, animals
November 12, 2018 - Study finds huge shortfall in use of home-based medical care by frail seniors
November 12, 2018 - Cocaine Cut With Anti-Worming Drug, Levamisole, May Cause Brain Damage
November 12, 2018 - Obese mice lose a third of their fat using a natural protein
November 12, 2018 - Behind many a Parkinson’s case lurks a mutation in a gene called LRRK2 — why?
November 12, 2018 - Drug with fish oil cuts risk of heart attack, stroke, study finds
November 12, 2018 - Mild exposure to single blast can induce meaningful pathogenic effects, study shows
November 12, 2018 - Miniature pacemakers aim to make heart procedures for infants less invasive, more efficient
November 12, 2018 - Treating pre-cancerous stem cells at early stage could be key to preventing bowel cancer
November 12, 2018 - Kawasaki disease triggered by a combination of factors
November 12, 2018 - Optibrium and University of Nottingham Collaborate on Innovative Teaching Programme
November 12, 2018 - RNA defects linked to multiple myeloma progression in high risk patients
November 12, 2018 - Science is on trial – and we need doctors to provide the defense
November 12, 2018 - Salk researchers receive $19.2 million to unravel mysteries of age-related cognitive decline
November 12, 2018 - KE Eye Centers offer new solution for patients with myopia and astigmatism
November 12, 2018 - Trumpeted new Medicare Advantage benefits will be hard for seniors to find
November 12, 2018 - Biogen and Eisai Announce Presentation of Detailed Analyses from the Phase 1b Long-Term Extension Study of Aducanumab at Clinical Trials on Alzheimer’s Disease (CTAD)
November 12, 2018 - Scientists reveal new cystic fibrosis treatments work best in inflamed airways
November 12, 2018 - Hands-Only CPR training kiosks can teach life-saving skills in just minutes
November 12, 2018 - Inexpensive and effective drug does not reduce major adverse cardiovascular event rates
November 12, 2018 - Testing coronary calcium levels can better predict patient’s risk for coronary heart disease
November 12, 2018 - FDA conducts mass seizure of food and medical products held under insanitary conditions
November 12, 2018 - FDA Approves Invokana (canagliflozin) to Reduce the Risk of Heart Attack, Stroke or Cardiovascular Death in Adults with Type 2 Diabetes and Established Cardiovascular Disease
November 12, 2018 - Hormone helps reverse brain damage caused by obesity
November 12, 2018 - Grants aim to provide better cancer clinical trial access for military veterans
November 12, 2018 - Mitochondrial DNA may have strong influence on cellular metabolism and disease susceptibility
November 12, 2018 - High stakes, entrenched interests and the Trump rollback of environmental regs
November 12, 2018 - Stem cells transplanted for treatment of Parkinson’s disease
November 12, 2018 - Sandoz Inc. Issues Voluntary Nationwide Recall of One Lot of Losartan Potassium and Hydrochlorothiazide Due to the Detection of Trace Amounts of NDEA (N-Nitrosodiethylamine) Impurity Found in the Active Pharmaceutical Ingredient (API)
November 12, 2018 - Protein found in patients with severe asthma can help identify who would benefit from targeted drugs
November 12, 2018 - Experts develop a list of competencies in antimicrobial prescribing and stewardship
November 12, 2018 - Allied BioScience receives approved label from EPA for new bacteriostatic surface coating
November 12, 2018 - MR Solutions displays elegant bench top CT scanner with clip-on PET and SPECT at EANM congress
November 12, 2018 - FDA announces emergency use authorization of Ebola fingerstick test with portable reader
November 12, 2018 - Grieving spouses with sleep problems have increased risk of chronic immune activation
November 12, 2018 - Exercise routines affect mental health in Japanese expatriates
November 12, 2018 - Fish oil and vitamin D pills no guard against cancer or serious heart trouble
November 12, 2018 - Excess Gestational Weight Gain Not Better for Child Bone Health
November 12, 2018 - Immune receptor provides protective immunity against Group A Streptococcus
November 12, 2018 - Scientists develop new method to produce irradiated nanomaterials for medical applications
November 12, 2018 - Blue light exposure decreases blood pressure
November 12, 2018 - Researchers discover two proteins essential for development of skeletal muscle
November 12, 2018 - Yelp reviews help understand strengths, weaknesses of emergency departments and urgent care centers
November 12, 2018 - Adolescent obesity linked with increased risk of pancreatic cancer later in life
November 12, 2018 - AHA: Poor Teeth-Brushing Habits Tied to Higher Heart Risk
November 12, 2018 - Researchers find how natural killer cells regulate protective HIV antibodies
November 12, 2018 - Rutgers receives $4.2 million federal grant to improve mental health services
November 12, 2018 - Sussex scientists develop a piece of hardware to show how brains function
November 12, 2018 - Study shows pivotal role of parents in efforts to change sexual orientation of LGBT teens
November 12, 2018 - Neck scan detects dementia way before symptoms appear
November 12, 2018 - Risk-profiling can benefit HIV prevention
November 12, 2018 - New thrombolytic based on magnetite nanoparticles successfully tested on animals
November 12, 2018 - Smoking rates go down in the US, lowest since 1965
November 12, 2018 - Phase III Trial of Darolutamide in Patients with Non-metastatic Castration-resistant Prostate Cancer Meets Primary Endpoint
November 12, 2018 - Moderate exercise before conception resulted in lower body weight, increased insulin sensitivity of offspring
November 11, 2018 - Community choirs for older adults reduce loneliness and increase interest in life
November 11, 2018 - Trevena Receives Complete Response Letter for Oliceridine from FDA
November 11, 2018 - More adults and children are using yoga and meditation
November 11, 2018 - Female smokers at greater risk of heart attacks, finds study
November 11, 2018 - Happy Childhood Memories Associated With Better Health
November 11, 2018 - X-linked infantile spinal muscular atrophy – Genetics Home Reference
November 11, 2018 - RNA thought to spread cancer shows ability to suppress breast cancer metastasis
November 11, 2018 - Study finds that thymus plays key role during normal pregnancy
November 11, 2018 - Exploring why some athletes ice their muscles after exercise
November 11, 2018 - Female Genital Mutilation Decreasing in African Nations
Study sheds light on largely unrecognized role of youth caregivers

Study sheds light on largely unrecognized role of youth caregivers

image_pdfDownload PDFimage_print

‘I need this – can you grab my pills?’ ‘Can you help me with this?’ ‘Can you go in my bag and get me my medicine?’

For more than half of her 16 years, 10th grader Destiny has answered calls like this to help her grandmother and great-grandmother manage their medications.

“I’ve been helping out basically most of my life,” she said.

Despite the essential role Destiny and other youth caregivers play, little is known about how they learn to manage medications, what they know about the medicine they administer, and what kind of rewards and challenges they encounter day to day.

To find out more, Julia Belkowitz, M.D., M.P.H., a University of Miami Miller School of Medicine physician-researcher and pediatrician, and colleagues studied 28 middle school and high school students 12 to 19 years old. Their study is the first of its kind to take a comprehensive look at this population; they reported their findings online in the Journal of Adolescence.

Through a series of qualitative focus groups, the investigators asked the youth about medication management. They used semi-structured interviews to assess their responsibilities, medication knowledge, and more. The caregivers were part of the Caregiving Youth Project of the American Association of Caregiving Youth. Their mean age was about 15, and 71 percent were female.

For physicians, greater awareness is the first step. “It is important for all physicians, regardless of specialty, to know that this population of caregiving youth exists. Physicians should take this into consideration when they are making plans for the care of their patients,” said Dr. Belkowitz, who is associate professor of pediatrics.

“One of the things we discovered in this study is that some of the kids reported that not only were they taking on the responsibilities of managing medications at home, they were actually the ones receiving the instructions directly,” said Dr. Belkowitz.

This finding underlines the importance of determining who is responsible for medication management.

“The only way to do this is to ask.”

Proceed carefully, however. “It is important to know that some parents fear that if others know about the medication role and other caregiving responsibilities of their children that their families would be split apart, so these conversations need to be done in a sensitive and nonjudgmental manner.”

Several participants in the study reported difficulty understanding instructions, either written or as instructed in person by a health care professional.

The data from this study also indicates that youth caregivers interact substantially with medical professionals, providing an opportunity for physicians and others to support them and recognize their contribution to the patient’s well-being.

“Back when my grandmother was walking, the doctor offered to help us with installing rails if we needed them,” Destiny said. “And they said they would even install a chair in our shower so she could sit down and wash herself.”

“Once kids have been identified as caregivers, we need to ask them how they are doing,” Dr. Belkowitz said. Inquire about challenges they face and what type of support they need to succeed in school, in their home environments and as caregivers.

“We know from the literature that caregiving can have a significant impact on mental health and school performance of children and young people, and we have heard many stories of kids who have experienced physical injuries as well,” she said. “Of course, we should use available screening tools and guidelines to identify children who may be suffering from conditions such as anxiety or depression.”

One in five youths said their caregiving made them miss a school activity or an after-school activity, 15 percent said it has kept them from doing schoolwork, and 8 percent said it has made them miss homework, according to a 2005 national survey. In addition, young caregivers said they missed school, “38 percent at least sometimes.”

Destiny has managed to find a way to balance caring for her relatives so that it does not detract from her school or social life. “I’ve learned to do really well with time management,” she said.

When properly supported, these children and teenagers can experience benefits such as pride and a closer personal relationship with their care recipient.

Grandparents were the most common care recipients in the study, followed by parents and siblings. Other relatives, such as cousins and aunts or uncles, as well as unrelated people also relied on the youth for help with their medications.

Neurologic-related diseases topped the list of care recipient conditions at 12, followed by diabetes at 7, and an equal number of people – 4 each – with diabetes, functional decline/mobility loss, asthma, vision loss and other conditions.

“What was also important about this study is that we were able to hear their perspectives directly from youth,” Dr. Belkowitz said. “We learned that these kids take on multiple important responsibilities, often without formal education, surrounding their role.”

Destiny learned on the job. Her grandmother showed her which medicines she needs when to manage her Parkinson’s disease. Her great-grandmother, diagnosed with Alzheimer’s disease, did the same, until she passed away in September.

An estimated 1.4 million children and teenagers between 8 and 18 years old help family members take their medicine and perform necessary activities of daily living, according to a 2005 survey by the National Alliance for Caregiving.

Since then, experts believe the number of youth caregivers has mushroomed due to the aging of the U.S. population, the opioid epidemic, a shift toward more home care, and other factors.

In terms of solutions, the researchers noted that teenagers are typically tech savvy and those with resources are closely connected to smart phones. Devising strategies to use this technology could be of great potential benefit for adolescents managing medications.

That’s precisely the advice Destiny would offer other youth caregivers. “Have reminders on your phone five minutes before it’s time to give the medicine. That way you can prepare, get a cup of water, and sometimes they need to take it with food, so you need to grab a quick snack or cook something good.”

Many unanswered questions remain, including the current prevalence of caregiving youth in the United States. Future research could expand the age range to include children younger than 12. In addition, Dr. Belkowitz said, “We are currently looking at perspectives of pediatric health care providers about this issue and the impact of poverty on the role of children as caregivers.”

In the meantime, Destiny’s grandmother recently progressed to an advanced stage of Parkinson’s disease. “My grandmother is now on bed rest. She can’t walk, talk or sit up for a long period of time,” she said. “She has good and bad days. Sometimes I really can’t understand her – and have to get real close to understand what she is saying. Other days are really good days, and she speaks in full sentences and laughs.”

Another piece of advice, based on experience, is telling care recipients that you will always be there to support them. “Constantly remind the person you’re caring for that you love them and that you’re doing this for them – that it doesn’t bother you,” Destiny said.

She said her grandmother apologized once ‘for being a hassle.’ “That was really hard for me, because I don’t want her to think that,” Destiny said. “I do this for her because I want her to be taken care of.”

Always being there is the most important part, Destiny added. “It lets her know I’m willing to do whatever it takes to keep her well.”

Source:

https://physician-news.umiamihealth.org/study-illuminates-the-largely-unrecognized-role-of-youth-caregivers/

Tagged with:

About author

Related Articles