Communicating with Patients Who Have Developmental Disabilities

Communicating with Patients Who Have Developmental Disabilities

As a nurse, being able to communicate effectively with patients is crucial. But communicating with patients who have developmental disabilities may be more difficult at times.

Georgia Reiner, Risk Specialist, Nurses Service Organization (NSO), knows how to interact with these types of patients and answered our questions on what you can do to communicate with them better.

Why should nurses communicate differently with patients with developmental disabilities? When do they need to make sure that a parent or guardian is there?

People with developmental disabilities such as Down syndrome or who are on the autism spectrum face significant barriers to accessing quality care. Inadequate communication between the patient and health care providers is one of those barriers that can result in harm to the patient. Effective communication is the keystone for ensuring quality, patient-centered care for patients who have developmental disabilities. With skill and patience, nurses can help keep patients safe.

It is important to ask patients if they want their support worker or caregiver to stay with them.

What should nurses do to communicate better with these specific patients?

In order to communicate better with specific patients, nurses must establish the patient’s communication strengths and challenges and tailor their approach accordingly. Nurses need to document preferences in the patient’s health record so that they are accessible to all members of the team.

It is also very important for nurses to allow enough time to listen and understand that interactions may take longer. Nurses need to know that differences in muscle tone for some individuals may complicate reading their facial expressions or body language. Additionally, it is important to choose appropriate, concrete language. Explaining concepts clearly and directly while using specific words and visual aids can be very helpful.

How can they make sure that they are being clear while not “talking down” to these patients?

Nurses can make sure that they are being clear while not “talking down” to these patients by establishing rapport. They need to make sure that they are speaking directly to the patient—as opposed to a family member or caregiver—when possible. It is also important to avoid talking to an adult as if he or she is a child. Nurses should take time to assess the patient’s understanding and to validate their own perceptions to make sure they are understanding the patient. Nurses are encouraged to use the “teach-back” method to ask the patient to repeat the information back to them.

What are the most important concepts that nurses should keep in mind when communicating with these patients?

It is important for nurses to give patients with developmental disabilities exact instructions and explain what they are doing in sequence. Try to eliminate distractions where possible, by meeting in a private, quiet room.

Nurses should also avoid asking abstract questions, and instead be direct. For example, ask “Are you tired?” instead of “How do you feel?”

If the patient uses a communication device that you are not familiar with and the patient cannot show you how to use it, ask the caregiver to do so.

Let patients know they can bring a favorite item they like to have with them in order to help regulate sensory stimuli.

What should nurses never do while communicating with these patients?

Nurses should never shout; speak slowly, in a normal tone of voice.

Nurses should never assume that their body language and facial expressions will be understood. Respect differences in communication style. For example, many patients with autism spectrum disorder prefer avoiding eye contact.

Nurses should never touch a patient without telling them when and where before doing so. Act out or demonstrate actions for patients who prefer non-verbal communication.

What else is important for our readers to know about communicating with patients with developmental disabilities?

People with developmental disabilities deserve the best possible care from health care providers, including preventive health measures and appropriate management of health conditions. By being knowledgeable on how to effectively communicate with patients who have developmental disabilities, and practicing different communication strategies, nurses can become more confident, and provide patient-centered care. Through thoughtful communication and collaboration with caregivers, family, and the interprofessional team, nurses can help achieve the goal of optimal care—and optimal outcomes.

Nurses are only one segment of the interprofessional team, but they are frequently the strongest patient advocate. At the end of the day, working as a team, advocating for patients, providing information and education in the patient’s preferred communication style, and collaborating with caregivers and family members, can help nurses end the stigma of caring for patients with developmental disabilities and achieve the goal of optimal care and outcomes.

Vaping: What You Need to Know

Vaping: What You Need to Know

When vaping first began, many smokers saw it as a godsend: if they couldn’t quit, they could take up vaping, which wasn’t as toxic as smoking.

Or so they thought.

Karen Goldschmidt, PhD, MSN, RN, CNE, Associate Clinical Professor and Department Chair RN-BSN Degree Completion Program, College of Nursing and Health Professions at Drexel University, says, “E-cigarettes were introduced to the market in 2006-2007 as a lower-risk alternative for adults who smoke tobacco and as an aid in smoking cessation. At the time, because e-cigarettes were not considered tobacco products they were not regulated by the Food and Drug Administration.”

In fact, it seems that vaping is causing more problems—and ones that health care providers don’t yet fully understand. “In the last several weeks, hundreds of possible vaping-related illnesses and 18 deaths have been reported. The number of cases has been increasing at an alarming rate. Symptoms of the mysterious illness include shortness of breath, fever, fatigue, and vomiting. Some patients have experienced respiratory failure, ending up in the intensive care unit or on a ventilator,” explains Goldschmidt.

Unfortunately, Goldschmidt states that U.S. youth are the ones who use e-cigarettes the most. And it’s serious. “Today the U.S. faces a public health crisis of epidemic proportions. The use of e-cigarettes among teens has the potential to create another generation addicted to nicotine. Both youth and young adults identify flavors as a primary reason for e-cigarette use. Today there are over 7,000 flavors available. Advertising is another factor,” she says. “Exposure to e-cigarette vapor condensate is toxic to lung cells and shows similar cellular changes to chronic smokers and people with chronic obstructive pulmonary disease (COPD). The exposure increases the risk of infection and chronic lung disease.”

As nurses, you can try to help these patients by encouraging them to quit vaping, as just this kind of intervention could make a difference. According to Goldschmidt, “Studies have shown that receiving counseling regarding tobacco use has been linked with 47 percent better odds of an attempt at quitting smoking within the year. Unfortunately, only a third of adolescents’ report being asked about tobacco use by their provider.”

There are also other steps you can take to help your patients. “I recommend that nurses, nurse practitioners, and physicians screen patients for vaping/e-cigarette-use and educate patients about the risks of using these products. It’s not enough to just ask if people they smoke, drink, or use drugs. E-cigarettes and vaping are seen by people as being completely different, and many are misinformed—thinking that they are safer than smoking,” explains Goldschmidt. “Health professionals need to change their language to keep up with substance use/device use. For instance, Vaping is different than e-cigarettes and ‘Juuling.’”

Goldschmidt suggests that you give support, education, and resources to help your patients who are vaping. “Of course any nurse working with a patient with a substance use disorder needs to be aware that it is just that—that patients are most likely addicted to the Nicotine or THC and a plan of care must include caring for a patient who may decide to continue to use or helping the patient through withdrawal. Education is the key. In the end the patient needs to be ready to give up the substance,” she says. “Providing support and resources for the patient to eliminate vaping/e-cigarettes any substance is very important. I would suggest the Truth Initiative and SmokefreeTXT for Teens as resources to help teens or adults quit e-cigarettes.

“See the CDC website for the most up to date statistics. Also, the FDA, as these products may soon be regulated. Some states have already banned flavored e-cigarettes.”

School Days: Successfully Transitioning from Clinician to Scholar

School Days: Successfully Transitioning from Clinician to Scholar

Many nurses are pursuing advanced education. Expanding knowledge is always a good thing—for them, for their employers, for their patients, and for their careers. But what happens if you’re going back to school while you’re also working full-time and raising a family? Perhaps it’s challenging, but it’s definitely doable. These nurses have done it and have tips to help you do it too.

When Catherine Burger, BSN, MSOL, RN, NEA-BC, was asked by her employer to return to school to earn her bachelor’s degree in order to remain in an executive leadership position, you might say that it wasn’t the perfect time. “I was working over 60 hours per week as a nursing leader for a complicated department; we had five kids at home—all with multiple sports and commitments—ranging in age from 1 to 17 years old,” recalls Burger, a media specialist and contributor for www.registerednursing.org. “There is no perfect time to start back to college.”

But Burger and many others made it work, and you can too.

Do Your Homework Before You’re Doing Your Homework

Before you jump right into a program to earn another degree, Simendea Clark, DNP, RN, president of Chamberlain University’s Chicago campus, says that you need to do some homework. “If you’re thinking about going back to school, do your homework first. Everyone has a different set of circumstances, so it’s crucial to research programs and schools that best fit your needs. Many schools offer online modalities that allow you to take some or all of your coursework from the comfort of your home, saving you travel time to and from school,” says Clark.

Be sure that the educational program you select is something that you love—not just something that will bring in the bucks. “The key for those who want to advance their education is to make sure it is something that drives your passion for nursing,” says Adam Kless, MSN, MBA, RN, NEA-BC, vice president of clinical operations for Avant Healthcare Professionals. “Selecting an educational path for mere money will leave one hollow and disappointed in the long run.”

If it will help you, see if you can spread out your coursework. “I chose to take two classes per semester, including the summers. That helped me stay full-time in the graduate program,” says Valerie C. Sauda, PhD, MSN, RN-BC, MGSF, an assistant professor at Husson University’s School of Nursing. “Although it lengthened my study a little, it definitely helped me maintain the work/life balance. I also feel that I learned the material more thoroughly and was more engaged in the classroom and online group activities. A shorter program may not always be best for learning and life. Enjoy the journey!”

Tell Your Family and Your Boss

Now you’ve found the perfect program for you. What’s next? Your best bet is to tell the people closest to you: your family and your boss.

Your family probably already knew that you were looking into an advanced degree, but if they didn’t, be sure to tell them. You may need their support and the best way of getting this is to be honest and transparent. “Have conversations with the key stakeholders in your life—your current boss, your spouse, and your children. Creating ways for them to give you critical feedback in the moment can save a lot of heartache later. When you are under a lot of stress, it can be difficult to maintain a good communication feedback loop,” says Melissa McClung, MS, LPC, a professional career advisor and owner of LBD Careers, LLC. “Setting this up in advance can preserve your important relationships when there are inevitable conflicts.”

There are many reasons why it’s crucial to tell your boss. “Getting your boss involved will allow you to successfully incorporate your education into your work life by scheduling around class, providing you extra learning opportunities while at work, or benefit from finding a mentor at work who is already doing what you desire to do,” says Kless.

“At the outset, you may need to negotiate with your employer for some flexibility with your work schedule,” explains Divina Grossman, PhD, RN, APRN, FAAN, president and chief academic officer at the University of St. Augustine for Health Sciences. “Solicit the support of your supervisor or mentor at work so that you can have more flexibility in your schedule so you can prioritize your classes, clinicals, or to write papers and projects.”

Grossman says that when you tell your boss, you may also be able to streamline your schoolwork by having “your course requirements, such as term papers or special projects, be about topics or issues that you are dealing with at work. This way, you are not only meeting the requirements for your advanced degree, but also are resolving issues in the work setting through your research and projects. Your supervisor will be thrilled to know that you are doing research-based practical work that advances them and you.”

Plan Your Schedule, But Be Flexible

When Sauda was earning her PhD in nursing/education, she planned daily, weekly, and monthly schedules. “I prioritized time for family, time for work, and time for myself, while ensuring that I blocked out time for study and research during the school year. I had to ‘give up’ a few things, including binge-watching TV, checking my social media multiple times a day, and participating in nursing groups as a volunteer,” she says. “Creating and sticking to a daily schedule is crucial for success in an advanced degree program.”

Terri Bogue, MSN, RN, PCNS-BC, a consultant to hospitals and health care through her company, Thor Projects, LLC, planned her time as well when she returned to school. “I scheduled time to study after family dinner and on weekends. I knew that my degree would open doors and opportunities that would benefit my family as well as myself. This knowledge helped me to keep focused on my goal,” she says.

“It’s also helpful to set reminders for assignments and tests on your phone’s calendar as soon as you learn about them. Review your calendar at the beginning of each week and mark down pockets of time when you will study and do the same for spending time with your family,” says Clark.

Besides having a schedule, it’s also important to be flexible. Because, let’s face it, life happens. “The most important thing to remember about balance is that it is constantly about reevaluating and making changes,” says McClung. “I suggest developing a systematic way to check in with your priorities to ensure that you are prepared to flex when you need to. For example, this can be as simple as using a planner and scheduling out time for the important things: work and school obviously, but also family time, meal planning and preparation, exercise, and household chores.”

Have Some Space

Setting up a particular area in your home can help when it comes to doing your schoolwork. “Create a study space that helps you focus. For me, it was one corner of our dining room where I had a small bookcase for my textbooks, all the study materials I needed, and good computer access,” says Sauda. “I also set up a corner in my office at work to house my short assignment work that I could complete during breaks. Whatever you decide, do what works for you and make it a pleasant experience. You’ll accomplish more in the available time that you have.”

Bogue says that she would also set aside both time and a consistent place in her room to study. That helped her to balance it all.

“It is important to have a quiet place to study and complete coursework. A private, dedicated space will allow you to get work done, free from distractions. It is also important to get an early start on assignments, give yourself extra time to complete tasks, and seek help if needed,” says Clark.

Ask for Support

All our sources say that having a support network is crucial when you work and are going back to school. Your network can be family, friends, or even colleagues.

“Surrounding myself with people who were not in the program, but who cared and encouraged me either in person or via email, made all the difference—especially when I went through those difficult courses or when I felt like I couldn’t do it all. It’s the network that made a huge difference,” says Sauda.

Grossman takes it one step further. “You cannot be all things to all people. If you are usually the designated parent for carpool, can your spouse or a friend or neighbor help you out? I learned as a parent that if I can involve other parents in a way that we can help each other, both of us can be successful,” she says. “For example, I can do the morning pick-ups, and they can do the afternoons so that I could attend my classes and do my writing. If I am in charge of cooking meals at home, can I cook in bulk on weekends and freeze the meals or can my spouse help with the cooking?”

If you still need more help, Grossman says, think about hiring someone occasionally to clean or get your kids to help so that your work is reduced.

“Keep your lines of communication open to ask for help when needed and to keep instructors, your boss, and your family informed of any last-minute changes in schedule or areas where you need help,” recommends Clark.

Don’t limit your network to just family, friends, and coworkers. “I was scared when I took my first doctoral class. I had been out of school for over 15 years, and I was afraid that I couldn’t do the work. What I learned quickly was to ask for help, use the learning resources available online and at the campus, and develop a relationship with the faculty. As a faculty member myself, I can tell you that faculty want to help you reach your advanced education goals. They want you to be successful. Asking for help can really make a difference,” says Sauda. “One of my best experiences was in doing a literature search for a paper. I was not getting the articles that I needed to complete the paper, so I finally reached out to the university librarian. Within an hour, I had more than 20 articles that I was able to look at with her support. Not only did it save me time, but I learned the value of a librarian and library services when doing my research.”

Be Good to Yourself

To balance work, school, and life, self-care is essential. “Be patient and compassionate with yourself—this is hard work,” says Bogue.

McClung says that you have to make sure that the other areas of your life are good. To succeed, you have to make sure that you also take care of your health, relationships, and anything else that is important to you.

“Eat well, exercise by taking a walk before or after completing an assignment or after dinner with your family, and make sure to get proper rest,” advises Clark.

Grossman adds that, if you’re a parent, you keep tabs on any guilt feelings—and be easy on yourself. “Do not feel guilty about not being there when you can’t be and having your spouse or relative take over for you. This period is time-limited—not forever,” she says. “When my daughter ran track and field, they knew I could not be there for all the meets, but I could be present for some of them. I could do more on weekends than during the week because of my work and graduate school schedule.”

Totally Worth It

While this time may be difficult, it will also be memorable and fun. “The most important strategy for success is our attitude. Give yourself time to adjust to your new role as a graduate student. Like anything new, you will get the hang of it in time. Above all, make the most out of it, and enjoy the experience,” says Grossman.

Clark says to stay focused on both short- and long-term goals. “Be patient with yourself as you ease into becoming a student again.”

“The challenge and personal growth that came with pursuing an advanced degree helped me find my focus for future research and teaching,” says Sauda. “Always remember that the journey to advanced degrees is worth it!”

Hope Force International—Helping Others in the Face of Disaster

Hope Force International—Helping Others in the Face of Disaster

Natural disasters are scary, devastating, and sometimes fatal. There are many organizations that jump in to help when disasters occur, and Hope Force International is one of them. Tina Busby, FNP, RN, works for a group of Federally Qualified Community Health Centers, called NOAH-Neighborhood Outreach Access to Healthcare, part of Honor Health, a larger medical system in the greater Phoenix area, made up of multiple medical group practices and multiple hospitals.

She and her husband also volunteer with Hope Force International, a Christian-based disaster relief organization that, as Busby says, “works nationally and internationally to provide disaster services as well as services to help communities rebuild after disaster. It uses volunteers, both professionals and nonprofessionals, from multiple nations.”

Busby answered questions about her work with the organization.

Tina Busby in NepalHow did you become involved with Hope Force International (HFI)?

My husband and I have known the founders of HFI, Jack and Cheri Minton, since 2000 while serving with them in another faith-based ministry, Mercy Ships International. Since their conception of HFI, we have both had a desire to be involved, and we were finally able to complete our training and become HFI reservists about 6 years ago.

How does volunteering work? Are you put on alert or called in at certain times? How are you able to get time off from work?

When there is a disaster, HFI sends out a text message followed by an email to all reservists putting them on standby for possible deployment and asking them to pray and assess whether it is the right time for them to go and serve.

Because I have always been a part of a medical team, I have more notice and have not served with HFI immediately after a disaster. For the last few years, I have been a part of medical teams returning to both Haiti and Nepal. These HFI teams work with local community partnerships to show the love of Christ and advance His name. Since completing my education as an NP, I have felt a strong call from the Lord, that my skills and talents are to be used for His glory. Thus, I have tried to work in situations that allow for enough flexibility in my schedule to be able to serve others in this way.

Because we have a large family that is spread out all over the nation, finding a NP position with enough time off for both is almost impossible, and so, for the last seven years I have worked in a Per Diem or On Call position. Basically, I have an irregular schedule, and I fill in the open provider slots in multiple clinics, so that I am able to have control over my schedule and time off.

What do you do as a volunteer with HFI? How many times have you worked as a volunteer?

As a volunteer with HFI, my role has been to be a medical provider on multiple medical teams in both Haiti and Nepal, where I’ve traveled three times each with HFI. I have wanted to also help in other capacities, such as immediately after a disaster such as the recent hurricanes in Texas, Puerto Rico, and now the Bahamas. But at this point in my life, my resources (time and funds) are limited, and I also have a part-time job to keep up.

What did you enjoy most about volunteering for HRI?

I enjoy the people, all created in the image of God, both my teammates and those we are serving. I love seeing God work in so many different ways. I love meeting and making new friends and having the opportunity to serve alongside old friends. Having the luxury of going back to the same communities over the last few years, I love seeing how people’s hearts are becoming more responsive to Him and the great love He has for them.

What have been your greatest challenges?

My greatest challenge currently is that my husband, also a nurse, hasn’t been able to travel with me the last few years, due to his work schedule. Keeping my work and personal schedule flexible enough to serve, along with having the financial resources to serve, are always challenges. Some of the travel, long flights, and exciting bus rides, can be challenging for me as well.

Tina Busby in Nepal 2017What have been your greatest rewards?

Some of my greatest rewards have been the bonding of teammates and feeling the pleasure of God. I often personalize Eric Liddell’s quote to read, God gave me a compassionate heart and made me a healer. When I serve the least of the least, whether that’s at home or abroad, I feel His pleasure.

What would you say to someone who was considering volunteering for Hope Force International?

I would say, attend a Reservist Training and then go as God leads you! If you’re a nurse, we could really use you! We’ve just had to recently cancel an upcoming medical team to Haiti because we did not have enough nurses able to go.

Once you go, your life will never be the same and you will be “spoiled for the ordinary!”

Mercy Ships: Volunteering to Treat the Forgotten Poor

Mercy Ships: Volunteering to Treat the Forgotten Poor

When nurses think about volunteering, they may imagine doing so somewhere in their own backyard. While all type of volunteering to help others is important and valuable, there are many different types—some may even take you across the world. Meggin Tallman RN, BSN, now a Pediatric Critical Care Nurse at Children’s Hospital of Alabama, has volunteered a number of times with Mercy Ships. She wants to spread the word about this amazing organization, so she answered our questions.

What is Mercy Ships?

Mercy Ships volunteer Nurse Meggin Tallman plays the Ukelele with a patient onboard the Africa Mercy.

Mercy Ships is an international faith-based organization bringing hope and healing to the world’s forgotten poor. As many as 5 billion people lack access to safe, affordable surgical and anesthesia services worldwide, and less than 6% of all operations are delivered to the world’s poorest countries. Marginalized populations continue to suffer due to a lack of trained health care providers, inadequate infrastructure, and disproportionate out-of-pocket healthcare costs.

Mercy Ships programs offer holistic support to developing nations striving to make health care accessible for all. Since 1978, Mercy Ships has delivered services to more than 2.56 million direct beneficiaries. Mercy Ships owns and operates the Africa Mercy which is the world’s largest non-governmental hospital ship and is dedicated to the continent of Africa. Mercy Ships has an average of 1,000 volunteer crew, from up to 40 nations, serving onboard the Africa Mercy each year.

How did you get involved with Mercy Ships? Why did you decide to volunteer?

I had always had a dream to serve in developing countries upon completion of my nursing degree. I just really have a service heart, and I feel that I now have a set of skills that are desperately needed all over the world. If I am called to help and have the ability to, then how could I not volunteer?

As a new graduate, I got the opportunity to serve with the hospital I worked for, for a month in Zambia. Following that trip, I knew this was something I was uniquely called to do. When I got home, I really jumped into researching organizations doing medical missions on the continent of Africa, and when I discovered Mercy Ships, my mind was blown that they could do all the things that they do and help the amount of people they do. I instantly applied.

How long were you a volunteer? How did you get time off work?

My first service on the Africa Mercy was in Madagascar for just under four months and the second was just under three months in Cameroon. Those trips were somewhat easier to manage as I was a travel nurse at the time and could plan trips in between contracts. This last service with Mercy Ships was for six weeks in Guinea, and I, thankfully, have a boss who has a heart for missions as well. We were able to work together to help me take a leave of absence so I could fill a critical need the ship had for a pediatric ICU nurse.

What did you do with Mercy Ships? How many people did you help (estimate)?

On board the Africa Mercy I worked in D ward, which is the maxilla-facial ward, and my role was a pediatric ICU nurse. That being said, I treated kids and adults alike with ailments ranging from large tumors of the face and neck to cleft lips and palates to things as serious as neural tube defects.

In terms of how many people I specifically have helped, I don’t think that is calculable. Sure, I had my patients that I helped with medicines and wound dressings and those types things, but we also played games with patients and colored and sang songs. It’s just impossible to truly know the number of hearts and lives you affect both in the profession of nursing and just in life in general. That fact is even more so true on board the Africa Mercy, as it truly is a floating metal box of hope and healing…the patients aren’t the only people who leave the ship changed for the better.

What did you enjoy most about your experience?

Meggin Tallman, Ward Nurse (Paediatric ICU), with a patient on Deck 7.

I think if I had to choose one thing I liked most, it would be that we got to see the healing effects of love and compassion. All the interventions on the ship are surgical, so we have an instant gratification factor where the patient goes into the OR looking one way and comes out looking better. But many of these patients have endured terrible hurt and pain that surgery and medicine can’t fix. That’s where the games and songs and love come in. When you see that healing, you never forget it.

What were your greatest challenges?

I would say probably everyone who has ever served on board the Africa Mercy would say that the number one challenge is living in a tin box with 400 other people from 40 different nations. It is a challenging experience, but it grows on you.

What were your greatest rewards?

It is just such an honor to be able to be a part of the work of Mercy Ships and to play a small role in the life changes that take place on board the Africa Mercy.

What would you say to someone who was considering volunteering for Mercy Ships?

Do it! Not only will you be a part of changing people’s lives in a way that you could never have imagined, but you will come away changed too. I know it sounds crazy and scary and way too big for you–I’ve been there. But take the leap of faith; you won’t regret it.

Anything else?

My work overseas has made it evident that pursuing an advanced practice degree would make me that much more helpful in developing countries, which is why I am now earning my FNP at the University of North Alabama. Education is truly the greatest resource that you never have to worry about fitting in a duffle bag. I think that is an important thing to note when considering working in a low-resource setting.