Archive for category Caregivers

[WEB PAGE] Caregiver Health – MedlinePlus

Caregiver Health

Also called: Caring for the caregiver

What is a caregiver?

caregiver gives care to someone who needs help taking care of themselves. The person who needs help may be a child, an adult, or an older adult. They may need help because of an injury, chronic illness, or disability.

Some caregivers are informal caregivers. They are usually family members or friends. Other caregivers are paid professionals. Caregivers may give care at home or in a hospital or other health care setting. Sometimes they are caregiving from a distance. The types of tasks that caregivers do may include

  • Helping with daily tasks like bathing, eating, or taking medicine
  • Arranging activities and medical care
  • Making health and financial decisions

How does caregiving affect the caregiver?

Caregiving can be rewarding. It may help to strengthen connections to a loved one. You may feel fulfillment from helping someone else. But caregiving may also be stressful and sometimes even overwhelming. Caregiving may involve meeting complex demands without any training or help. You may also be working and have children or others to care for. To meet all of the demands, you might be putting your own needs and feelings aside. But that’s not good for your long-term health. But you need to make sure that you are also taking care of yourself.

What is caregiver stress?

Many caregivers are affected by caregiver stress. This is the stress that comes from the emotional and physical strain of caregiving. The signs include

  • Feeling overwhelmed
  • Feeling alone, isolated, or deserted by others
  • Sleeping too much or too little
  • Gaining or losing a lot of weight
  • Feeling tired most of the time
  • Losing interest in activities you used to enjoy
  • Becoming easily irritated or angered
  • Feeling worried or sad often
  • Having headaches or body aches often
  • Turning to unhealthy behaviors like smoking or drinking too much alcohol

How can caregiver stress affect my health?

Long-term caregiver stress may put you at risk for many different health problems. Some of these problems can be serious. They include

What can I do to prevent or relieve caregiver stress?

Taking steps to prevent or relieve caregiver stress may help prevent health problems. Remember that if you feel better, you can take better care of your loved one. It will also be easier to focus on the rewards of caregiving. Some ways to help yourself include

  • Learning better ways to help your loved one. For examples, hospitals offer classes that can teach you how to care for someone with an injury or illness.
  • Finding caregiving resources in your community to help you. Many communities have adult daycare services or respite services. Using one of these can give you a break from your caregiving duties.
  • Asking for and accepting help. Make a list of ways others can help you. Let helpers choose what they would like to do. For instance, someone might sit with the person you care for while you do an errand. Someone else might pick up groceries for you.
  • Joining a support group for caregivers. A support group can allow you to share stories, pick up caregiving tips, and get support from others who face the same challenges as you do.
  • Being organized to make caregiving more manageable. Make to-do lists and set a daily routine.
  • Staying in touch with family and friends. It’s important for you to have emotional support.
  • Taking care of your own health. Try to find time to be physically active on most days of the week, choose healthy foods, and get enough sleep. Make sure that you keep up with your medical care such as regular checkups and screenings.
  • Considering taking a break from your job, if you also work and are feeling overwhelmed. Under the federal Family and Medical Leave Act, eligible employees can take up to 12 weeks of unpaid leave per year to care for relatives. Check with your human resources office about your options.

Dept. of Health and Human Services Office on Women’s Health

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via Caregiver Health: MedlinePlus

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[BLOG POST] Home After a Stroke: Bathing Can Be Exhausting

Bathing Can Be Exhausting

As an OT I did not know how tiring a.m. care is because I never watched a stroke survivor do one task after.  Here is why bathing leaves me feeling refreshed instead of exhausted and frustrated.

Washing.  I do not struggle to soap up a washcloth one-handed or chase a bar of soap after I drop it.  I pour shower gel on a nylon poof and knead it a few times to get it soapy.  To wash my sound arm, I use a gross grasp in my affected hand to hold the nylon poof.  I do not struggle to wring out a washcloth one-handed.  I hang the nylon poof on a suction-cup hook, hose it down, and let it air dry.  I use shampoo suds to wash my face.
I press down on the nylon poof that is resting on my thighs to squeeze out suds so my sound hand can soap up my crotch.  Before I could hold the shower hose with my hemiplegic hand,
I used my forearm to press the shower hose against my stomach to rinse my crotch.  Water runs downhill.  This freed my sound hand to deal with the nooks and crannies.  If my husband was alive I would still want to bathe this private part of my body.

Drying.  My towel rack is next to the shower so I can reach it while sitting on my shower chair.  I drape the towel over one shoulder while I dry my arms and trunk.  When I get out of the shower I stand to dry my crotch with the towel draped over my shoulder.  My shoulder carries the weight of the towel so it is easy for my sound hand to manipulate the free end.  I never hold up my affected leg to dry it.  I don a terrycloth bathrobe which dries my buttocks and thighs and I let my calves air dry while I brush my teeth and comb my hair.

Dressing.  For the 1st year after my stroke, dressing was easier if I rested after bathing.  I laid on the bed in my bathrobe with a towel under my wet hair and listened to music on the radio.  homeafterstroke.blogspot.com

via Home After a Stroke: Bathing Can Be Exhausting

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[Abstract] Caregiver-Delivered Stroke Rehabilitation in Rural China

Abstract

Background and Purpose- Stroke disability is a major health burden in rural China where rehabilitation services are inadequate. We aimed to determine the effectiveness of a novel nurse-led, caregiver-delivered model of stroke rehabilitation in rural China.

Methods- A multicenter prospective, randomized open, blinded outcome assessed, controlled trial was conducted in 3 rural county hospitals in China: Zhangwu, Liaoning Province (Northeast); Qingtongxia, Ningxia Hui Autonomous Region (Northwest); and Dianjiang, Chongqing Municipality (Southwest). Adult patients (age 18-79 years) with residual disability (Barthel Index score ≤80/100) after a recent acute stroke were randomized to a new service model or usual care. The new intervention was multifaceted and was based on a task-shifting / training-the-trainers model, supported by a custom-designed smartphone application, where patients and caregivers received evidence-based in-hospital education and stroke rehabilitation training (focus on mobility, self-care, and toileting), delivered by trained nurses before hospital discharge, and 3 postdischarge support telephone calls. Outcome assessments were undertaken before hospital discharge and at 3 and 6 months. Primary outcome was physical functioning (Barthel Index scores) at 6 months, assessed by research staff blind to treatment allocation, adjusted for baseline covariates in an intention-to-treat analysis. Secondary outcomes included measures of mobility, health-related quality of life, mood, and caregiver burden. The study included a process evaluation that assessed intervention fidelity.

Results- From November 2014 to December 2016, 246 stroke patients were randomized to intervention (n=118) or control (n=128) groups. There was no statistically significant difference in adjusted 6-month Barthel Index scores between groups (70.1 versus 74.1, mean difference, -4.0 [95% CI, -10.0 to 2.9]), nor any differences across the other outcome measures. Process evaluation interviews revealed that the intervention was desirable and positively accepted by nurses, caregivers, and patients but was considered too complex despite efforts to simplify materials for the rural context. Key strategies identified for future studies included the use of community health workers, smartphone application enhancement, and simpler and more frequent training for nurses, caregivers, and patients.

Conclusions- A novel nurse-led, digital supported, caregiver-delivered stroke rehabilitation program did not improve patient physical functioning after stroke in rural China. Further stroke rehabilitation research suitable for resource-poor settings is required, with several components being suggested through stakeholder interviews in our study. Clinical Trial Registration- URL: https://www.clinicaltrials.gov . Unique identifier: NCT02247921.

via Caregiver-Delivered Stroke Rehabilitation in Rural China – PubMed

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[BLOG POST] Top tips for dating after receiving a traumatic brain injury – Jumbledbrain

Dating after receiving a traumatic brain injury

Guest Post: Top Tips For Dating After Receiving A Traumatic Brain Injury

Brandon Leuangpaseuth is a freelance copywriter from San Diego, CA. Brandon is an avid traveler, book enthusiast and loves animals. He loves exploring new places and going on long walks on the beach. You can connect with him on LinkedIn @ bleuangpaseuth.

Today he wants to share with you his personal experience of dating after receiving a traumatic brain injury, including his top tips for how to successfully settle down with the right person.

 


In 2015, I was hit by a car and I received a severe traumatic brain injury. A brain injury that left me without the ability to remember what I had done the day prior, constant fatigue, and the need to sleep more than usual. I have openly written and shared my journey to recovery since the incident on Jumbled Brain’s blog… From my struggles to graduating from college while dealing with the detrimental effects of my brain injury to struggling to work a full-time job (but finding a great career that worked with my TBI!) to coping with the everyday changes, my brain injury has had on my life.

Now, the next strenuous chapter I face while living with a brain injury is…dating (honestly, dating without a brain injury was already hard enough!) Dating with a brain injury opens up a slew of other obstacles that make it even more arduous. In this article, I want to spread how I learned to cope with the new obstacles my brain injury has had on my dating life.

The Importance of Communication

My doctor once told me a brain injury is only invisible to the outside world if I did not tell people about my head injury. What he meant by that other people will not know I suffer some negative effects from an unseen disability, unless I inform them of it.  It can definitely be a tough conversation to have. At first, I struggled with telling people about my brain injury because I was ashamed and I wanted nothing more than to be normal. As time passed, I’ve come to terms with my head injury.

I made it a point to tell everyone who I dated after the car accident about my brain injury. I want to let my partner know what they were getting into before they started to date me. That I do have a lingering invisible disability that would impact the relationship. I’ve had some partners that said it was not a big deal until they had to deal with some of the issues I faced when dealing with a brain injury.

I have to let them know that I can be quite forgetful and I get horrific TBI exhaustions that make me take an enormous amount of naps throughout a day. Sometimes I can’t drive for long hours or stay out too late because my body would get too fatigued and I would need to sleep.

After I communicated with my partner, they would understand that I needed a nap whenever I got brain fog.

Being honest with my partner about some of the hurdles I face and that the effects it would have on the relationship have been extremely helpful. Telling my partner ahead of time some situations where the effects of my brain injury would come into play has helped my partner understand me better.

Dealing With the Dreaded Fatigue and Brain Fog

Fatigue is the absolute biggest issue I face. Hands down it is the worst part of my brain injury. My partner would get mad at me when I would fall asleep watching a movie in every theater date we had or when I would say I could not stay out any longer because I was getting some serious brain fog. Of course, I want to spend time or being out late nights with my partner…but it is just harder with a brain injury. I would get pretty sad when I had to tell my partner that I can’t stay out late on some date nights because I was too tired.

The best solution for me was to plan ahead of time. I’m a freelance writer so I would write in the mornings and take my naps throughout the day if I had a big date that night or an outing. I would also pack some bottles of black teas to keep with me in case I needed to stay awake.

I would also make sure to use ride-sharing applications on some night outs because I know I’d be too exhausted to drive later.

I can’t stress it enough that preparation is key when you are dating with a brain injury.

Being Confident in Myself

Right after I received the brain injury, I had a lot of confidence issues. I used to pride myself on being a pretty academic and intelligent guy, but when I could not even remember what I did the day prior and I had difficulty forming cogent thoughts…I started to second guess that belief.

Thoughts of “who would date somebody with a TBI” started to pop into my head…

I felt like damaged goods.

–and my own thoughts and how I felt about myself flowed out into my dating life. People around me can sense my lack of confidence whenever I interacted with them.

If I didn’t even want to date myself, who would want to date me…

So, the first step was rebuilding some confidence in myself. I started to routinely hit the gym, cleaned up my diet and really worked on reframing how I thought about my brain injury. I realized that if someone didn’t completely accept me for who I was, a guy with a brain injury, why would I want to date that person? I had to learn how to be loved for who I was and accept all parts of me. If a girl was not interested in dating me because of my disability, then it was her loss! With this mindset, I started to be more confident with myself in my dating life.

Here’s to Dating With A Brain Injury

If you have a brain injury and you are struggling with dating, hang in there. Hopefully, my tips can make it a little bit easier to dating someone when you have a brain injury. Being honest with your partner, being prepared for dates and reframing how you think about your brain injury can go a long way.

I wish you the best of luck on your dating journey and I hope you stay safe!

via Guest post: Top tips for dating after receiving a traumatic brain injury | Jumbledbrain

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[WEB PAGE] Physical Therapy at Home – Gorbel Rehab – Videos

Physical Therapy at Home

As rehab professionals around the world work to address patient needs during the COVID-19 pandemic, Gorbel is actively taking steps to improve efforts in delivering therapy during these difficult times. The Gorbel team of physical therapists have created a library of home exercise program videos for those patients who are now unable to receive therapy with the frequency or duration in which they normally would have. The current video categories are Strength, Range of Motion, Balance, and Caregiver Training. Each category has a ‘Playlist’ that includes multiple videos. We will continue to add categories and new videos in our commitment to assist your efforts to advance your patient’s recovery.

Stay safe, healthy and thank you for all you do.
Brian Reh, CEO Gorbel®

 

Physical Therapy Videos

Balance Videos Playlist  /  Caregiver Videos Playlist  /  Range of Motion Videos Playlist  /  Strength Videos Playlist

Balance Videos Playlist

Caregiver Videos Playlist

Range of Motion Videos Playlist

Strength Videos Playlist

 

Physical Therapist Bio

Matthew KlockMatthew Klock PT,DPT I am a licensed physical therapist in New York State and the Northeast Account Manager for Gorbel® Rehabilitation. Before joining Gorbel® I worked for Ochsner Health System in New Orleans, LA as the Supervisor of the Ochsner Sports Medicine Clinic. My passions include sports and orthopedics as well as new and emerging technologies. I believe that physical therapists should serve their patients by applying their wealth of knowledge in rehabilitation and pair it with the most cutting edge technologies to get the most out of every treatment.

 

Ramiro MaldonadoRamiro Maldonado PT, DPT I am a licensed Physical Therapist in New York State as well as the Clinical Business Development Specialist for Gorbel Rehabilitation. During my ten years as a clinician, my clinical interests lead me to specialize in vestibular and neuromuscular impairment, and I have completed the vestibular competency at Emory University. My passion now lies in helping patients and therapists by increasing awareness of rehabilitation technology and how it can improve patient outcomes. You can find out more about the products I represent, innovations in physical therapy, and me at TheBalancePT.com or follow me on Twitter or Instagram @RamiroDPT. Thank you!! 

Heidi ShenkHeidi Shenk, PT I am a licensed Physical Therapist in the states of Ohio and Indiana as well as the Account Manager for the Great Lakes Region of Gorbel Rehabilitation. I am a graduate of the Doisy College of Health Sciences at St Louis University. During my twenty-seven years as a clinician, my clinical interests led me to specialize in occupational medicine, outpatient orthopedics and in women’s health. My lifelong interest in technology and in improving therapist safety and patient outcomes has led to a passion in increasing awareness of rehabilitation technology and how it can improve patient care.

via Physical Therapy at Home | Gorbel Rehab

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[WEB SITE] Coronavirus: A Practical Guide If You’re Disabled | Covid-19

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The outbreak of the Covid-19 (a coronavirus) in the UK means a rocky and uncertain time for many of us, particularly if you have a long-term health condition or disability. To ensure you have the right information to help stay healthy and happy – and avoid being overwhelmed by the unrelenting news – we’ve collated practical advice you can rely on. We’ll be updating it as things progress.

Last update: 6 pm Sunday 29th March.

Disability Horizons is a community magazine built to enable our readers to connect with each other and offer support. This has never been more important than now.

The Disability Horizons team and wider community are here to offer support, advice and a listening ear. None of us are alone. Join us on DHorizons Tribe to connect with others.

How coronavirus spreads and what you can do to minimise it

Covid-19 (part of the coronavirus family, along with SARS) is a new virus, so there isn’t yet a full picture of how it spreads. However, it’s believed that to be transmitted through droplets, say from someone coughing or sneezing.

Research is being done around the world to understand how long these droplets can remain on surfaces and in the air.

Studies published by the New England Journal of Medicine and the New Institute of Health demonstrate that the virus could survive for up to three days on plastic and stainless-steel surfaces, 24 hours on cardboard and three hours in the air.

This is why it’s particularly important for everyone to do the following:

  • Wash your hands regularly for at least 20 seconds (the time it takes to sing happy birthday twice) using soap and water or hand sanitiser if you’re out – the NHS video below shows how to do this properly.
  • Do not touch your eyes, nose or mouth if your hands are not clean, particularly if you’re not at home.
  • Cough or sneeze into a tissue and throw it away or, if a tissue isn’t available, do it into your upper sleeve/elbow.
  • Keep away from anyone who is unwell and displaying the symptoms of Covid-19 – they should also self-isolate (more on this below).
  • Keep 2 metres (6 feet) apart from people when out and about or if someone in your house is unwell.
  • Don’t visit your GP in person but instead get over-the-phone appointments.

These measures are called ‘social distancing’ and apply to everyone. If you’re in a ‘high risk’ group (more on this below), they are even more important.

Coronavirus lockdown

On 23rd March Prime Minister Boris Johnson announced that these measures are now mandatory and that everyone should stay at home where possible.

People should only leave their homes to:

  • travel to and from work if they absolutely cannot work from home
  • shop for essentials, such as food and medicine – these should be as infrequent as possible
  • to exercise once a day but to keep your distance from others you don’t live with
  • to fulfil any medical need, or to provide care or to help a vulnerable person.

All stores selling non-essentials will be closed – see more on this below. It is also now compulsory that people limit their interaction with others, even family and friends, and avoid gatherings, pubs, restaurants, leisure centres and similar venues. Any meetings of more than two people will be disbanded.

If anyone is seen breaking these measures, the police have the power to fine people.

If you’re in the ‘extremely vulnerable’ group (see more on this below) and need help self-isolating, register on the government website for support: gov.uk/coronavirus-extremely-vulnerable. You may be able to get help if you’re in a ‘high risk’ group too.

Using carers/PAs during the coronavirus outbreak

If you use carers/PAs, ask them to wash their hands thoroughly when they enter your home and regularly when performing tasks for you.

As coronavirus can live on surfaces for some time, carers should clean surfaces they have touched, such as door handles and worktops, before they leave.

They should also ideally wear personal protective equipment (PPE) when doing things that bring them in close contact with you, such as bathing and changing.

PPE means disposable plastic gloves, a plastic apron, fluid repellent surgical mask and eye protection when there is a risk of splashing.

These, along with waste from cleaning surfaces they have touched, should be put in a rubbish bag after use and left for 72 hours away from anything else before being thrown into the normal bin.

If you use carers through the council or company, ask them about providing PPE. However, we have heard of instances of stock running low.

If you employ carers yourself, you may need to purchase it yourself or see if your carer can. Make sure that if you shop online for these you use a reputable retailer.

It might also be worth calling your local GP, district nurse, healthcare worker or council to find out if they can help with this.

If they are displaying any symptoms, they shouldn’t come to work and should self-isolate at home – see more on this below.

If possible, it would be worth having a list of back-up staff who you can call on if one of our carers becomes unwell. If this isn’t an option, or you would like more advice on this, contact your local council for more information.

You and your carers can find more advice on how to work in these circumstances on the Carers UK and government websites.

Coronavirus ‘high risk’ groups

Words 'look out for each other with distance' in chalk on a blackboard

Some people’s bodies may find it harder to fight Covid-19 and recover.

This includes those with a long-term health condition, weakened immune system and older people over 70 (the World Health Organisation suggests 60+).

The government has listed the following conditions or situations as ones that would put someone in an ‘extremely vulnerable group‘:

Coronavirus vulnerable groups

  • Solid organ transplant recipients (treatment for end-stage organ failure of the kidney, liver, pancreas, heart, and lung).
  • People with specific cancers:
    • people with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • people having immunotherapy or other continuing antibody treatments for cancer
    • people having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
    • people who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  • People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  • People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  • People on immunosuppression therapies sufficient to significantly increase the risk of infection.
  • Women who are pregnant with significant heart disease, congenital or acquired.

From Monday 23rd March 2020, the NHS will be contacting people who are in this ‘extremely vulnerable group’ with a recommendation to self-isolate for 12 weeks – scroll down for more on self-isolating.

The government website also lists some specific conditions, including disabilities, such as Parkinson’s disease, motor neurone disease and multiple sclerosis, that would also put someone at risk.

In these circumstances, the ‘social distance’ measures mentioned above are particularly important. In the coming weeks, more people may also be asked to fully self-isolate.

Coronavirus symptoms

Coronavirus affects people in different ways and the symptoms might be mild for some. But the main three symptoms people experience are:

  • a fever/high temperature (above 37.8°C)
  • dry cough
  • shortness of breath

Some also experience tiredness, muscle pain and a headache, similar to how you would with flu. Some people have also reported a loss of a sense of smell as a possible symptom.

Symptoms of coronavirus infographic

Coronavirus treatment and when to get help

There currently isn’t medication to help cure coronavirus, or a vaccine to guard against it. If you become ill, drink plenty of water (so that your urine is clear) and eat as healthily as possible. Take paracetamol as prescribed to help with some of your symptoms.

For now, until more research has been done, experts suggest using paracetamol over ibuprofen. However, if you are already taking ibuprofen or another non-steroidal anti-inflammatory (NSAID) on the advice of a doctor, do not stop taking it without checking first.

The NHS recommends that you seek help with your symptoms if:

  • you feel you cannot cope at home
  • your condition gets worse
  • your symptoms do not get better after 7 days.

Do not go to your GP, pharmacy or hospital as this will risk spreading the virus.

The NHS website has a coronavirus tool that can help you to decide what you should do next. If that doesn’t help, call 111 for more information.

If it is a medical emergency, for example the person is unconscious, call 999. Make them aware that it may or is likely to be someone with coronavirus.

Coronavirus quarantine rules

Drawings of stick people in houses self isolating

There are a few circumstances where the government has advised you to fully self-isolate, and not just ‘socially distance’.

  • If you have a new continuous cough and/or high temperature and live alone you should stay at home for 7 days from when you first display symptoms. This is regardless of whether you have had a test for coronavirus.

For clarity, a continuous cough means that you have started coughing repeatedly. It also relates to a dry cough.

  • If you live with others and one person has a new continuous cough and/or high temperature they should stay at home for 7 days, and anyone else in the house for 14 days from when they first display symptoms. This is regardless of whether they have had a test for coronavirus. If someone else in the house then gets these symptoms, the whole house should self-isolate again for 14 days from that point.
  • If you are in the ‘extremely vulnerable group‘ you will be asked to self-isolate for 12 weeks, regardless of whether you have symptoms. You should receive notice from the NHS or your GP, as a letter or call/text, but Sunday 29th March. You should self-isolate from the day you receive that.
  • If you’re in the ‘high-risk group’, as listed above, but not the ‘extremely vulnerable group’, you’re only being asked to ‘socially distance’ at the moment. This may, however, change in the coming weeks. You might want to consider self-isolating measures anyway.

You don’t need to inform the authorities, such as GP or NHS if you’re self-isolating. Also, because tests for coronavirus are being prioritised for those in hospital, the government isn’t currently testing those who self-isolate.

You can see more information about when to self-isolate on the government website, including an illustration to show the rules with self-isolation.

What to do in households where someone is ‘high risk’ or ‘extremely vulnerable’

If you are more at risk or live with someone who is and they are displaying symptoms, ideally see if they can stay elsewhere for the time period.

If that isn’t possible, consider getting them to stay in one room out of the way and use common areas they need to, such as the kitchen and bathroom, at separate times. If you are near each other at any point, try to keep 2 metres apart.

Use separate cutlery, towels (hand and bathing) and bathrooms where possible, and sleep in different rooms if you can.

Where you need to share an area, get them to clean surfaces they have touched after each use, such as handles on kitchen cupboards, work surfaces, taps and toilet flushes.

At the moment, if you’ve been asked to self-isolate for 12 weeks, the government is not requiring anyone else in your household to do the same. However, if you’re able to, you and your family might want to do that anyway.

If not, they should practise social distancing measures though, at home and when out. That includes avoiding gatherings and non-essential contact, staying 2 metres away from others and good hygiene.

It’s also recommended that you use separate areas of the house, utensils etc, as mentioned above.

There is more guidance on self-isolating for 12 weeks on the government website.

Coronavirus self-isolation: how to do it

If you or your family are self-isolating, you should stay at home at all times. No one should go to work, school or public areas. Do not use public transport or taxis either.

Many non-urgent hospital appointments are being postponed, but you may be able to have essential ones remotely.

Ideally, don’t even leave your house to buy essentials and groceries. Instead, plan ahead as much as possible.

If you can, shop or order medication online, or ask relatives or neighbours to do so for you, getting them to leave them outside.

Pharmacies are aiming to allow delivery of prescriptions though someone you nominate, a volunteer found by the pharmacy or the pharmacy itself. You can contact your local pharmacy to find out what the options are.

If you have carers or a local community group, it’s worth asking them whether they can support you too. If none of this is possible, a number of organisations and businesses are preparing to help with essentials.

But you can also visit gov.uk/coronavirus-extremely-vulnerable to register for the support that you need. This includes help with food, shopping deliveries and additional care you might need.

You can go out to exercise once a day, but, like with social distancing, ensure you or others in the household keep at a safe distance from others.

As physical fitness is incredibly important, particularly at the moment, it’s worth looking at what exercise you can also do at home.

Remember to keep the hygiene measures, such as washing your hands for 20 seconds – particularly if you have had to go out or have ordered something in – and cough or sneeze into a tissue.

More advice on the practicalities of self-isolating can be found on the government and NHS websites.

Back of hands between the fingers being washed

Your working rights and financial help with coronavirus

Everyone has been advised to work from home where possible, so employers should enable you to do so if you can. However, some businesses are now closing, putting some staff out of work.

Here we list a number of scenarios and what help is available.

If you are employed

  • You are employed but unwell with coronavirus or unable to work due to coronavirus, for example, because you have had to self-isolate or your job doesn’t allow you to work from home. In this situation, you will receive Statutory Sick Pay (SSP) from day one of your time off, assuming you’re usually entitled to SSP.

If you’re ill, you won’t need a sick note for the first 7 days, but your employer may ask for one afterwards. If they do, use the NHS 111 service instead of your GP.

If you’re self-isolating and your employer requires a letter, you can get a self-isolation note on the NHS website.

It’s also worth checking your contract as you may be entitled to more than SSP, particularly if you’re self-isolating or unable to work from home.

If you are self-employed

  • You are self-employed but have lost work due to coronavirus. If this is the case, you can get help through the Income Support Scheme of up to 80% of your trading profits.

To claim, you will need to have submitted your Self Assessment Tax return for 2018-2019, and traded in the year 2019-2020. You can’t apply online, but HMRC will be contacting those that are eligible.

Read the government’s full guide to the Income Support Scheme understand all of the stipulations.

If you are on other benefits

If you’re already getting ESA, your mandatory work search and work availability requirements will be removed while you are affected.

The government will not be conducting face-to-face assessments for sickness and disability benefits for three months from 17th March.

It includes Personal Independence Payment (PIP), those on ESA, some on Universal Credit, and recipients of Industrial Injuries Disablement Benefit. Payments of these will continue to be made until the assessment is possible.

Please be aware that scammers are taking advantage of this situation, so make sure you use reputable sources of information. Citizens Advice has tips on how to spot a coronavirus scam.

You can find out more information about what financial help there is by visiting the government and Citizens Advice websites.

If you’re not sure any of the above applies to you or you are concerned about paying bills, the Citizens Advice has a page dedicated to help if you can’t pay your bills.

Time off to look after children

As schools are now closed, you’ll need to look after your child at home, ensuring they stick to the new ‘social distancing’ rules. However, school support is available if you are a critical worker, such as a nurse, or your child needs specialist support.

Under current rules, you’re are allowed a ‘reasonable’ amount of time off to look after dependants in an emergency, such as your child being ill.

The length of time is decided by you and your employer, so speak to them as soon as possible about difficulties. Your employer also isn’t obliged to pay you for the time.

Coronavirus map and cases in your area

The BBC has a useful tool that helps you to see how many confirmed cases of coronavirus there are in your area.

The government website also has a map of coronavirus cases, where you can also view the counties in order of most affected.

What shops are closed due to coronavirus and what will stay open?

Any non-essential stores and places are now closed, such as clothing, technology and home retailers, hairdressers and places of worship.

Playground and outdoor gyms are closed, but parks will remain open for exercise, although people cannot gather in groups, even with their own family.

The only shops staying open are:

  • supermarkets and stores selling food, including market stalls
  • pharmacies and health shops
  • corner shops, such as newsagents and post offices
  • food outlets offering food delivery and takeaway services
  • petrol stations, garages and car rental businesses
  • bicycle shops
  • home and hardware shops
  • launderettes and dry cleaners
  • pet shops and veterinary services
  • banks.

Community centres can remain open, but only for the purpose of “hosting essential voluntary or public services” such as food banks or service for homeless people, the guidance says.

Food shopping during the coronavirus outbreak

To avoid issues with panic buying and supplies of essentials dwindling, a number of supermarkets have made changes.

At Sainsbury’s for the first hour of opening on a Thursday, only disabled people and those over 70 will be able to shop.

It has also said it’s prioritising these customers when it comes to online delivery slots and access to Click and Collect services.

Morrisons has set up a phone line for those who can’t order online and is launching ‘simple-to-order food packages‘ to help ensure people have essentials.

Tesco is now allowing shoppers to book more than one delivery slot at a time so that people can plan ahead.

In-store, older and ‘vulnerable’ people can shop alone from 9 am till 10 am in all but its Express stores. In addition, Tesco stores that currently open 24 hours will be reduced to 6 am to 10 pm to allow stores to replenish goods.

Marks and Spencers has set aside the first hour stores are open on Mondays and Thursdays for ‘vulnerable’ and older customers.

At Waitrose, the first hour of opening will be dedicated to older and ‘vulnerable’ people. It has also said that it’s looking to offer its services remotely.

Co-op stores across the UK now have a shopping hour for ‘vulnerable customers’, carers and NHS workers from 8 am to 9 am Monday to Saturday and from 10 am to 11 am on Sundays.

Most of the big supermarkets are now only allowing a certain number of customers into stores at once so that they can social distance. Those waiting outside are being told to stand two metres apart.

All the supermarkets have placed restrictions on how many items people can buy at once, in-store and online, where applicable.

If you have a disability or long-term health condition that isn’t obvious, we recommend getting a sunflower lanyard to wear. The lanyards are recognised by many of the major supermarkets and are a sign to supermarket staff that you have a hidden disability.

Get support and advice

We’re going to be running regular virtual meetups in our closed DHorizons Tribe Facebook group so that you can connect with others, share tips, get advice and support each other.

Our second will be this Friday 27th March at 12pm. We’ll be discussing how to self-isolate, sharing tips and experiences.

We will also continue to bring you our usual positive, entertaining and interesting articles as a welcome break from the negativity.

Further reading on coronavirus

via Coronavirus: A Practical Guide If You’re Disabled | Covid-19

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[BLOG POST] If I Get Covid-19 It Might Be Ableism – Not the Virus – That Kills Me

Like millions of people around the world right now, I am extremely concerned about COVID-19 — the new-to-humans viral strain in the coronavirus family that affects the lungs and respiratory system. As someone at high risk due to my physical disability, cerebral palsy, I am afraid of being infected, and I worry about my parents and other older relatives too. But there is something I fear more. I am terrified of dying from COVID-19 not because my death is inevitable, but because my life may not be viewed as worth saving.

“That would never happen,” you might think. Surely people with disabilities have some kind of protection under the law against being denied life-saving treatment? Unfortunately, at this very moment, states are putting triage policies in place in case there is a shortage of ventilators and other equipment that would allow doctors to ration and deny care based factors including the patient’s age and medical history.

Our country is at risk of mirroring Italy, where such decisions are already being made and people with disabilities and elders dying when they might have lived if they had access to a ventilator. On March 24, New York Governor Andrew Cuomo said in a news conference that his state has 7,000 ventilators but needs 30,000 more. “You pick the 26,000 people who are going to die because you only sent 400 ventilators,” he told the Federal Emergency Management Agency.

States already have pandemic resource allocation policies in place that deprioritize disabled lives. In Washington state, rationing guidance distributed by the Department of Health includes a provision that triage teams can transfer COVID-19 hospital patients with “loss of reserves in energy, physical ability, cognition and general health” to outpatient or palliative care. This describes the majority of people with physical and/or intellectual disabilities, or could be interpreted as applying to us. In Alabama’s policy from 2010, people with severe or profound intellectual disabilities are listed as “unlikely candidates for ventilator support.” Tennessee’s 2016 protocol called for people with “advanced untreatable neuromuscular disease” such as multiple sclerosis and spinal muscular atrophy to be excluded from critical care. And in a particularly disturbing set of guidelines from 2015, the New York State Department of Health said hospitals could take away ventilators owned by people who require them to live if they check into the hospital during a scarce resource situation.

Would you go to the hospital if you knew they could steal the ventilator you use to breathe every day, effectively murdering you? How would you feel knowing your son with an intellectual disability is an “unlikely candidate” for a ventilator if he gets sick? How would you feel knowing that if your relatives who spent spring break on the beach brought the disease back to your small town, you might be denied life-saving treatment because you have a neurological condition and use a wheelchair? These are the reasons people like me aren’t sleeping at night. (Really. It’s almost 5 a.m. as I write this.)

As a person with cerebral palsy, I fear I will be judged based on my use of a wheelchair and limited mobility in my arms and legs. While I do not believe a person’s value depends on how much they contribute to society economically, far too many others do, including some doctors. I fear a doctor may view me as “useless,” without knowing about my job or travel blogging or advocacy. And I’m even more afraid for other people with disabilities — those who use ventilators or BiPAP daily, who can’t work at all because of their health, who are isolated in nursing homes, who live in extreme poverty, who are people of color or otherwise marginalized in multiple ways. They matter too. We all deserve equal access to care, regardless of our disabilities.

These rationing policies are a symptom of the deep ableism ingrained in the medical profession. People with disabilities are often seen as less worthy of care, less valuable as human beings. Of course, many individual doctors and nurses on the front lines of this pandemic are heroes, working for days at a time without proper protective equipment to save the lives of all their patients, regardless of disability, chronic illness or age. But if the system itself does not protect people with disabilities and chronic illnesses, some of us will pay the ultimate price at the hands of those who do not see our value.

I know tens of thousands of other people with disabilities and chronic illnesses are having the same fears right now. What can we do? The situation feels almost hopeless, but it’s not. First, there is some good news — disability rights organizations are mounting legal challenges against these rationing policies, arguing that they violate the Americans With Disabilities Act and other federal laws. Disability Rights Washington, The Arc of the United States, and Self Advocates in Leadership have filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights about Washington’s discriminatory ventilator allocation policies. Hopefully, action will be taken before lives are needlessly lost.

If you or someone you care about is at risk of death due to discriminatory rationing policies, the Disability Demands website makes it easy to tweet about this issue and others affecting people with disabilities during the pandemic. You can also contact elected officials in your state about your concerns. Ask them to issue guidance prohibiting discrimination based on disability when allocating treatment resources for the coronavirus. Research the triage guidelines for your state so you can point out specific problems and also be prepared to advocate in case you or a loved one becomes ill.

Take the time right now to write down the types of care you would or would not want to receive if you must be hospitalized due to COVID-19. Write something that is clear and factual, but that also humanizes you, so it will be harder for doctors to deny the care you need. If we make it clear, in writing, that we want to live, but they allow us to die when we could’ve been saved, in the long run, society can be held responsible for this preventable tragedy. I feel so strongly about this, I have decided to share what I want doctors to know about me. If I end up in the hospital and unable to speak for myself, please make sure they read it. And please write your own, and share it below if you wish.

Dear Doctor,

My name is Karin Willison. I have cerebral palsy and use a power wheelchair, but I am otherwise fairly healthy. If I must be hospitalized due to COVID-19, I want all necessary measures to be taken to save me, including non-invasive ventilation or ventilation with intubation.

I am a graduate of Stanford University and also have a master’s degree. I live in my own home and I work as an editor and writer at The Mighty, a site for people with health conditions to share our experiences. I love being part of this community and advocating for others. In my spare time, I road trip around the country and blog about traveling with a disability. I have a loving father and stepmother, many loyal friends and four beautiful dogs.

I am a human being. I have value. I am not expendable, and I will fight with everything I have to survive the coronavirus and any other health challenge that may be thrown my way. Do NOT judge me as less worthy of a ventilator or other treatment because I use a wheelchair. I will not sign a DNR, because I want to live. I have a fulfilling life and I’ve got lots more living to do. So please advocate for me, give me the care I need, and I will do whatever it takes to win the battle for my life.

I refuse to be silent when the lives of so many people in my community are at risk. Please join me in speaking out against discriminatory rationing so we can stop these policies before lives are lost.

Concerned about coronavirus? Stay safe using the tips from these articles:

via COVID-19 Hospital Rationing Policies Endanger People With Disabilities | The Mighty

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[BLOG POST] Interventions For Behavioral Problems After Brain Injury – BrainLine

by Carrie Beatty, CBIS, ResCare Premier
Interventions For Behavioral Problems After Brain Injury

Introduction

Behavior change is difficult for any individual to accomplish. The process, however, can be infinitely more difficult for those who suffer from a traumatic brain injury (TBI) due to physical, cognitive, and emotional impairments associated with an injury. Successful reintegration into the community and return to activities of choice is often dependent on the individual’s ability to modify maladaptive behaviors that may result from the injury. Behavioral challenges that frequently require intervention following brain injury include aggression, disinhibition, difficulty relating to others, and a host of other behaviors.

A total reversal of behavioral problems after a brain injury may not be possible. A more realistic goal is to modify behaviors. There are several interventions available to assist with the modification of those behaviors that negatively effect goal achievement, successful community reintegration, or quality of life for individuals with TBI. The intent of this article is to describe and provide examples of current options for therapeutic intervention and examine their effectiveness for individuals with TBI.

Proactive Measures

There are a number of steps that can be taken proactively to set the stage in developing effective plans for behavior change.

Developing Trusting Relationships

It is important to build a trusting relationship with an individual who has had a brain injury. Much of what occurs during rehabilitation is based on trust that the individuals providing services understand what is important to the person receiving services. There must be trust that the recommendations providers make and activities they encourage, are designed to help the individual achieve his/her goals.

Trust is developed through honest, caring, and consistent interactions. It is important to be realistic with the individual. You cannot promise to ‘make him/her better.’ We, as family members or professionals, do not have all the answers to the individual’s problems. We may be most helpful by providing a comfortable, nonjudgmental atmosphere in which the individual can discuss his/her concerns and preferences, even if the concerns and the accompanying behaviors do not appear to be logical. The knowledge gained from such discussions is invaluable when developing behavior plans or carrying out treatment.

The importance of relationships in behavior change goes beyond relationships between professionals and a person with brain injury. Following a brain injury, an individual may feel isolated and depressed (Denmark & Gemeinhardt, 2002). Success in coping with or adapting to changes after injury, as well as in modifying maladaptive behaviors, is highly dependent upon the feedback and support an individual receives from his/her social network. A supportive network may include professionals, family, old friends, new friends, and persons who have had similar experiences.

Understanding the Behavior

Developing adaptive behavior first requires recognizing what may be contributing to the problematic behavior. Triggers, antecedents, and precipitating factors are terms describing that which precedes the behavior. Triggers to acting-out behavior may be internal or external (Caraulia & Steiger, 1997). Examples of internal causes of behavioral problems can be fatigue, hunger, lowered self-esteem, etc. External triggers may include a frustrating task, interaction with certain individuals, change in structure/ routine, increased level of stimulation, etc. In addition to understanding what may trigger maladaptive behavior, it is important to understand what occurs following the behavior that may serve to reinforce and hence maintain the behavior. For example, if a given behavior consistently results in a rewarding experience such as increased attention, the frequency of the behavior will most likely increase. Modification of antecedents and consequences to change behavior is discussed in more detail under the heading Behavior Therapy.

Recognizing and Responding to Precursors

Individuals often provide non-verbal and verbal signs prior to displaying the behavior of concern. A person’s change in behavior can represent a negative internal state. There may be signs of anxiety such as pacing and fidgeting. The face may become flushed; he/she may have difficulty maintaining eye contact or may display decreased attention to a task. An individual may also exhibit verbal signs, such as muttering to him/herself or increasing the volume of speech. Clearly, it is important to be aware of sudden, often subtle, changes in behavior (both non-verbal and verbal) in order to effectively intervene. Intervening early in the sequence of behavioral escalation is one of the most effective strategies for behavior change.

General Guidelines

In order to select the most appropriate intervention for modifying behavior during rehabilitation, the following guidelines, outlined by White, Seckinger, Doyle, and Strauss (1997), need to be considered:

  • Include the individual with TBI when developing a strategy. If a plan is developed without client input, it is not likely to be effective.
  • Prioritize the functional needs of the individual. Consider his/her strengths and weaknesses.
  • Analyze the tasks required for goal achievement. Individuals have more success if they can incorporate what they have already learned and know.
  • Consider the learning style. Individuals can learn from written information, oral information, or a combination of both. Ensure the intervention is compatible with the learning style of the individual.
  • Consider the individual’s willingness to participate in the therapy or strategy.
  • Ensure that the strategy is practical. Time and funding constraints, family concerns, and environment limitations (i.e., in-patient vs. day-patient) should be considered.

Therapeutic Interventions

Several different approaches have been used to modify behavioral problems in individuals with TBI, some with more success than others. Most of the therapeutic intervention strategies were developed originally for individuals with learning disabilities, emotional dyscontrol, and psychiatric disorders. Studies have shown that with some adjustments or combination of approaches, these intervention strategies can benefit individuals with TBI (Alderman, 2003). However, most researchers agree that additional studies should be conducted to better measure the effectiveness of therapeutic interventions that have been adapted for use with persons with TBI (Denmark & Gemeinhardt, 2002; Kinney, 2001; Manchester & Wood, 2001; Schlund & Pace, 1999).

Insight Oriented Psychotherapy

Insight oriented psychotherapy can be defined as a process to gain more awareness and insight into our thoughts, feelings, and behaviors (Pologe, 2001). Theoretically, the more awareness one has of thoughts, feelings, and behaviors, the more one is able to change them. Therefore, insight oriented psychotherapy guides an individual to gain this awareness in order to change behavioral patterns. This type of therapy requires the individual to attend to task, maintain thought process, recall what is occurring (or occurred) during therapy, use reason, and develop insight. Considering these requirements, it is understandable that individuals with TBI, who may have problems with attention, memory, thought organization, or abstract processing, may not benefit from insight oriented psychotherapy. For this reason, Wood and Worthington (2002) concluded that insight oriented psychotherapy could only be implemented with individuals who have suffered mild or moderate debilitating effects.

For individuals with traumatic brain injuries who do not have severe cognitive deficits, insight oriented psychotherapy may be very beneficial. Prigatano (1986) suggested that a goal of psychotherapy for individuals with TBI should be to increase understanding of what has happened, the injury, and its effects. It should also help the person develop strategies for acceptance of injury, achieve self-acceptance, be realistic, and adjust to role and relationship changes. Finally, the process may be used to increase social appropriateness and develop behavioral strategies. Insight oriented psychotherapy for individuals with TBI is often conducted in a group in the rehabilitation setting. The group setting adds opportunities for feedback from peers that may enhance insight. Group therapy may not be productive, however, for individuals who are unable to filter out external stimuli and selectively attend to the task at hand, for those who become overly stimulated in a group setting, or for those who easily become frustrated or aggressive (Bennett & Raymond, 1997).

Cognitive Behavioral Therapy

Cognitive behavioral therapy is a specific form of psychotherapy that is concerned with how people’s behavior is shaped by their interpretation and perception of their experience (Alderman, 2003). It aims at assisting the individual in understanding the link between beliefs, thoughts, feelings, and behavior. That is, there is often a belief (realistic or not; adaptive or maladaptive) that underlies one’s thoughts and results in a pattern of behavior that is consistent with that belief. Needless to say, belief patterns that existed prior to the injury or those that are developed post-injury affect progress in rehabilitation.

In cognitive behavioral therapy, the individual is required to analyze maladaptive behavior in regard to any underlying beliefs that may be untrue, unrealistic, or counterproductive to meeting basic needs. The benefit of this approach is that one can alter behavior by changing beliefs or the way one thinks when it may not be possible to change the external situation (Albert Ellis Institute & Abrams, 2004). For example, a teenager may be suspended multiple times for fighting in school. She reveals to her counselor that she has the following belief: “the way to deal with hostility is to be hostile in return — an eye for an eye and a tooth for a tooth.” Her counselor suggests alternative beliefs that would alter her emotional response and help her to avoid fights in school. In this case, alternative beliefs might include, “ignoring or walking away from another person’s hostility keeps me out of trouble” or “being hostile in return doesn’t improve the situation in the long run.” The process requires that an individual take an active role in the application of techniques. Homework may be assigned so that techniques are practiced. Furthermore, the individual may be required to monitor his/her own behavioral responses (self-monitoring). This process builds awareness of behavioral patterns (including frequency, type of response, etc.), and leads to the individual taking more responsibility for altering his/her own behavior (Denmark & Gemeinhardt, 2002).

Effectiveness of cognitive behavioral therapy with individuals who have a TBI is dependent upon the individual’s level of cognitive functioning. For example, the following personal characteristics are required to participate in Rational Emotive Behavioral Therapy (REBT) which is a form of cognitive behavioral therapy: self-direction, good ability to tolerate frustration, flexibility, acceptance of uncertainty, self-acceptance, nonutopianism (accepting the fact that one will never achieve a utopian or ideal existence), and ability to take responsibility for one’s own emotional disturbances (Ellis & Dryden, 1997). Additionally, in REBT self-defeating thoughts and feelings are openly challenged. Discussion in either individual or group settings can be quite direct and demanding. Consequently, it has been suggested that a more flexible protocol of REBT be implemented for individuals with TBI. It should be more collaborative, less directive, and more flexible. In this sense, the therapist might adapt to the needs of the individual rather than the individual adapting to the REBT (Kinney, 2001). Manchester and Wood (2001) advocate that if REBT or another form of psychotherapy is used with persons with brain injury that the sessions be highly structured, repetitive, and include role play. They suggest that through procedural learning (repetition and structure), the likelihood will increase that cognitive behavioral therapy will be successful.

Behavior Therapy

The goal of behavior therapy is to manipulate the person’s environmental antecedents (that which consistently precedes a behavior) and consequences (that which follows or results from the behavior) in order to decrease the likelihood of maladaptive behaviors occurring and increase more positive, adaptive behaviors (Denmark & Gemeinhardt, 2002). Typically, individuals who are not appropriate for insight oriented psychotherapy or cognitive behavioral therapy are able to benefit from behavior therapy. Behavior therapy is currently accepted as an effective intervention for modifying behavior following TBI. For example, there is evidence suggesting that if behavior therapy intervention is properly implemented to meet the needs of the individual, outbursts significantly decrease in a group home setting for individuals with TBI (Denmark & Gemeinhardt, 2002). Traditionally, behavior therapy has focused on modification of maladaptive behaviors. However, it has also been effective in helping individuals to relearn other skills such as self-care, budgeting, etc.

Terms and Concepts in Behavior Therapy

Identifying and modifying antecedents

As mentioned previously, analyzing the environment for antecedents to problem behavior and adapting the environment in which the behavioral problems occur can be critical in decreasing the severity and frequency of the behavior. For instance, an outburst could be preceded by a lot of noise, too many people in the room, too many demands, or simply fatigue or hunger (Ponsford, 1995). In the initial stages of working with an individual with TBI and assessing reasons for undesirable behaviors, consider the environment’s comfort and pleasantness, level of stimulation, and adequacy in terms of privacy. Consider cultural issues that may contribute to behavioral problems. For instance, most Europeans prefer to bathe rather than shower. Attempting to impose a change in these cultural practices may, in fact, cause an undesirable behavior to occur. External expectations that do not take these issues into account may become a source of frustration for the individual and can contribute to behavioral problems.

Fluharty and Glassman (2001) examined the use of antecedent control to improve outcome for an individual with frontal lobe injury and intolerance for auditory and tactile stimuli. The individual suffered from profound memory, reasoning, and insight deficits. Therefore, traditional behavior modification using reinforcement and consequences was unsuccessful. The individual was unable to recall what behavior resulted in reward or consequence and had limited ability to understand the effects of his behavior. The treatment team made changes to the environment by eliminating noise and touch, which had previously served as triggers for problem behaviors. These changes were effective in reducing the problem behaviors. Clearly, understanding antecedents is a very important factor in the process of changing behavior.

Identifying and modifying consequences

Consequences serve to encourage or discourage a specific behavior or behavioral pattern. For example, others’ reaction to an unwanted behavior may impact the individual’s response resulting in the escalation (or de-escalation) of the behavior. This is referred to as an integrated experience — both individuals’ behavior and attitude affect each other (Caraulia & Steiger, 1997). Individuals who display maladaptive behaviors are the most challenging to rehabilitate and may be excluded from rehabilitation settings because staff members lack the skills to respond effectively. If participating in a program that does not specialize in the treatment of maladaptive behavior, there is a natural tendency for staff to intensify interactions with the individual during the crisis situation (or when maladaptive behavior is exhibited) and to provide less attention to the individual when he/she is not displaying the maladaptive behaviors. The attention paid to the maladaptive behavior becomes a rewarding or reinforcing consequence. According to Alderman (2003), a benefit of using behavior therapy techniques is that staff members are required to attend to the individual when he/she is displaying desired, productive behaviors, reversing the tendency to attend to undesirable behaviors.

Positive reinforcement

Positive reinforcement refers to the use of rewards, privileges, incentives, attention, and praise to increase a desired behavior. When positive things happen following a behavior, the behavior is likely to increase.

Negative reinforcement

Negative reinforcement refers to the removal of noxious stimuli in order to increase desired behavior. For example, when inappropriate or aggressive behavior successfully stops the continuation of an unpleasant or physically taxing physical therapy session (unpleasant stimuli), the inappropriate or aggressive behavior is likely to occur in the future (Braunling-McMorrow, Niemann, & Savage, 1998).

Punishment

Punishment consists of unpleasant consequences following undesirable behavior. When behavior leads to a negative consequence (punishment), it is less likely to occur (Braunling-McMorrow, et al., 1998). It should be noted that punishment is consistently found to be less effective than positive reinforcement for creating and maintaining behavioral change. When the threat of the punisher has been removed, the behavior may resume.

Differential reinforcement

Differential reinforcement refers to a variety of positive reinforcement strategies and is one of the most widely used concepts in behavior therapy. The primary focus of differential reinforcement is to positively reinforce a desirable behavior that will replace the undesirable behavior. Four categories of differential reinforcement are defined below with an example as described in the American Academy for the Certification of Brain Injury Specialists (AACBIS) Training Manual for Certified Brain Injury Specialists (Braunling-McMorrow et al., 1998).

  • Differential Reinforcement of Other Behavior (DRO) – In using DRO, the individual receives a reward for specified periods of time in which there has been no occurrence of the undesirable behavior. For example, someone who has a verbal outburst twice per hour would receive a reward for each 30-minute interval in which no verbal outbursts occur.
  • Differential Reinforcement of Incompatible Behavior (DRI) — In DRI, a behavior that is incompatible with the undesirable behavior is identified and reinforced. For example, if one touches others repetitively when asked not to do so, an incompatible behavior would be keeping one’s hands in one’s pockets. The individual would receive positive reinforcement when engaging in the incompatible behavior.
  • Differential Reinforcement of Alternative Behavior (DRA) — DRA involves identifying an alternative behavior that is not necessarily incompatible with the target behavior and reinforcing it. For example, if one is overly talkative during vocational activities, an alternative behavior (e.g., remaining on task) is reinforced, while the undesirable behavior (e.g., talking) is ignored.
  • Differential Reinforcement of Low-Rate Behavior (DRL) — DRL involves the reinforcement of the reduction of undesirable behavior. For example, if someone displays 20 verbal outbursts per day, it is unrealistic to implement a plan that requires zero verbal outbursts to earn reinforcement. Rather, implementing a plan in which a lower frequency of the undesirable behavior, (i.e., displaying no more then 15 verbal outbursts per day), is more realistic. When the individual displays a lower rate of an unwanted behavior, reinforcement is provided.

Individual Behavior Plans

Reinforcement systems may be combined to develop an individual behavior plan. Individual behavior plans are detailed plans that include strategies and interventions designed to address specific issues that are impeding an individual’s progress toward goals. The plan takes into account the individual’s strengths and weaknesses and individual learning style. Since precision and consistency of application is important for learning to occur and for new behavioral patterns to develop, scripts are incorporated into the plan. A script is a set of written instructions that direct individuals working with the person with brain injury on how to respond to certain behaviors or situations. A behavior plan addresses antecedents and consequences. It defines a way of responding that teaches, elicits, and reinforces adaptive behavior, minimizes reinforcement of maladaptive behavior, and ensures the safety of the individual. Prompts, cues, instructions, and gestures are used to elicit the desirable behavior that is subsequently reinforced. Verbal instructions, visual cues (pictures), physical guidance (hand-overhand), and modeling can be used to facilitate learning (Wood, 2001). Verbal mediation is another method used to elicit adaptive behavior. Verbal mediation is used when the precursors of maladaptive behavior become evident. Mediation is used to evoke thoughts (why am I feeling this way?) and problem solving (alternatives in dealing with the problem situation). In the area of non-violent crisis intervention, Caraulia and Steiger (1997) developed a verbal mediation strategy that is called CPI COPING. COPING stands for: recognition of lack of “control” which prompts the following sequence: “orient” the person to the facts, identify “patterns” of behavior, “investigate” alternatives to the behavior, “negotiate” using a behavioral or incentive plan, and “give” back empowerment. While its development was not geared specifically to individuals with TBI, several of the steps have been useful when practicing verbal mediation with individuals with TBI. When prompting or verbal mediation elicits adaptive behavior, the behavior is reinforced.

Specific reinforcers or rewards must be identified for the individual for whom the plan is being developed. Remember, we are all unique in our preferences and what one person may find reinforcing or rewarding may not be reinforcing for another. To identify preferences for reinforcers, can ask the individual, ask family or friends, or simply observe the individual. Primary reinforcers include, but are not limited to, praise, encouragement, and attention. Secondary reinforcers such as tokens or points may be earned and traded in for special outings, increased time in certain activities or with preferred individuals, or desired purchases. Rewards may be provided each time the desired behavior occurs or at scheduled times such as at the end of the day. Cognitive factors may influence the schedule of reinforcement (ResCare Premier, 2002). For example, memory problems may interfere with the effectiveness of a reward program that involves a lengthy delay; the individual may not recall what they did or didn’t do to obtain the reward. Alternatively, rewards given too frequently may result in the individual becoming satiated. The frequency of delivery of reinforcers must be identified in the behavior plan.

One type of secondary reinforcement system used within rehabilitation settings is the “token economy.” Ponsford (1995) recommends that a psychologist supervise this type of system. The individual may receive tokens as reward for desired behavior; they may then exchange the tokens for certain material rewards. A set of rules is established outlining the behaviors desired, the frequency with which the tokens may be earned, and how they can be exchanged. Tokens can be given immediately or at specified time intervals. A specified time interval is effective if you are teaching the individual to remain on task or to sustain learned behavioral changes. Difficulties with this system have been noted by Ponsford (1995) who points out that some individuals with TBI find the system demeaning. Therefore, she suggests that a point system be implemented instead. The points are earned, similar to tokens; praise and encouragement is provided at the time that points are awarded. The point system is very effective for both individuals with TBI and staff members as it increases both parties’ awareness of the expected behavior. The system promotes consistency and provides the opportunity for social reinforcement. Both token and point systems provide a visual cue so the individual can monitor his/her progress and successes throughout the day. Incentive programs such as point or token systems are used successfully to encourage participation in rehabilitation activities and development of adaptive behavior.

In addition to incentive programs, incidental and structured feedback may be incorporated into a behavior plan. Incidental feedback involves providing a prescribed response at the time that the alternative, adaptive behavior is observed. Structured feedback is a review with the individual of recent events or activities that have occurred. An individual may not have insight into what happened and why. Structured feedback provides an opportunity to get the facts and to analyze elements of the intervention plan that may not be working. The process can be a learning opportunity, an opportunity to develop preventive strategies for the future, and can be helpful in developing self monitoring skills. The review may occur at intervals throughout the day (at lunch, dinner, etc.). Each interval’s activities or events are reviewed.

Schlund and Pace (1999) conducted a study to examine the benefit of systematic feedback to reduce maladaptive behaviors in three individuals with TBI. Their study concluded that the implementation of this feedback resulted in a reduction of both the variability and frequency of maladaptive behavior.

Summary of guidelines for an individual behavior plan

The following are guidelines for implementing a successful behavior plan (Alderman, Davies, Jones, & McDonnel, 1999; Braunling-McMorrow, 1998; Ponsford, 1995; ResCare Premier, 2002; Wood, 2001).

  • The individual with TBI should be included in the development, design, and implementation of the behavior plan. If the individual has input into the plan, it increases motivation to participate.
  • The behavior targeted for change should be identified and clearly defined.
  • The alternative behavior to be reinforced must be identified and clearly defined.
  • Scripts and directions for teaching and eliciting the adaptive behavior should be included.
  • Types and timing of reinforcement should be defined. The plan should be as positive as possible. The focus of a behavior change plan should be on teaching and rewarding desired behavior. Rehabilitation is a difficult process. Encouragement and praise should be given liberally for all attempts to complete the desired behavior.
  • It is a misconception that punishment or loss of privileges is the most effective response to undesirable behaviors. Punishment should be used only after all other interventions have been attempted and exhausted and when the maladaptive behavior is extreme, putting the person or those in his/her environment at risk. If this type of intervention is necessary, all stakeholders (family, rehabilitation providers, funders, case managers, etc.) must be in agreement in regard to the strategy used. The strategy is then used in conjunction with incentives for positive behaviors.
  • The plan should be a tool for teaching. Some individuals may display ‘avoidance’ and ‘escape’ behaviors. When a demand is initiated, individuals with TBI may respond by acting out in order to escape the task. However, being proactive and teaching alternative behaviors can help the individual to cope with the task. For example, identify the skills needed to complete the avoided task, teach the skills to the individual in small, manageable steps, develop an advance agreement to complete the avoided task at a specified time thereby giving the individual the ability to prepare for the task, and follow task completion with a positive reinforcer to increase the likelihood that the desirable response will occur.
  • The plan should be carried out in all contexts. Behavior does not happen in a vacuum, it is influenced by environmental factors and therefore can be displayed in the home, in the community, in the rehabilitation setting, etc. Consistency in implementing the program is critical for its success. Any inconsistencies may cause confusion and may indirectly reinforce the undesirable behavior. All individuals implementing the plan should receive training in all aspects of the plan.
  • The plan should include opportunities for feedback.
  • The frequency in which the desired and undesired behavior occurs should be documented. This process serves two purposes. First, tracking behavioral frequency provides feedback for the individual regarding his/her progress. Second, by tracking behavioral patterns, the effectiveness of the individual behavior plan can be evaluated and revised as needed. It may be necessary to adjust expectations if the desired behavior is too easy or too difficult or to adjust the frequency or type of rewards.

Relaxation Training

Relaxation training is used to reduce one’s experience of anger and tension (Denmark & Gemeinhardt, 2002). It is thought that an individual cannot exhibit both relaxation and anger/tension responses at one given time. Therefore, the individual learns relaxation strategies that he/she can implement when feelings of anger/tension emerge in daily life. Some examples of these techniques are progressive muscle relaxation (focused relaxation of each muscle group in the body — feet, legs, torso, etc.), guided imagery (visualizing relaxing, peaceful, or encouraging experiences), biofeedback (monitoring the relaxation response by using electrodes which monitor and provide feedback about the activity of a muscle), breathing exercises, and forms of meditation (Denmark & Gemeinhardt, 2002). It is useful to incorporate role-play into relaxation sessions. The individual practices initiating relaxation techniques while thinking about potential real-life situations. There is very little literature that evaluates outcomes for the use of relaxation therapy techniques for individuals with TBI. This technique, however, has been used with success for individuals with learning disabilities and for children (Denmark & Gemeinhardt, 2002).

Social Skills Training

Social skills training programs are implemented with individuals who lack interpersonal skills and the ability to effectively communicate their desires in a problem situation or conflict (Denmark & Gemeinhardt, 2002). This type of program is geared toward individuals with problems in social interactions and includes focus on the development of social skills, assertiveness, and problem solving techniques. Social skills acquisition includes teaching the individual how to listen and understand others. Assertiveness teaches the individual to express him/herself constructively rather than in a confrontational manner. Problem-solving techniques allow the individual to develop conflict resolution skills. For individuals with TBI, this type of training can be especially useful as many individuals have difficulty expressing themselves, which often results in frustration and maladaptive responses. Denmark and Gemeinhardt (2002) suggest that role modeling the problem situations in a safe environment is the most beneficial. The role-playing allows the individual to learn appropriate responses or strategies at his/her own rate. It also provides opportunities for repetition and rehearsal of skills. The individual is able to internalize the behavior which helps to circumvent cognitive deficits such as planning, sequencing, and comprehension.

Anger Management

Novaco (1975) introduced one of the first multi-component approaches to anger management. He used a combination of behavioral, relaxation, and assertiveness training during three phases of treatment. The three phases included: 1) cognitive preparation, 2) skill acquisition, and 3) application of training. Medd and Tate (2000) conducted a study with persons with brain injury using a variation of Novaco’s principles. They modified the training by outlining anger syndromes and common difficulties relevant to TBI and developed handouts summarizing the sessions. The program encouraged the participants to increase their awareness of emotional, behavioral and cognitive changes that occur when they become angry. The participants practiced relaxation techniques, self talk methods, and time outs. Medd and Tate (2000) concluded that this type of intervention was beneficial to the individuals in their study. However, they also recognized that the individuals in their study had a relatively high level of cognitive ability with only minimal memory impairments noted. They questioned the effectiveness of this type of approach with individuals who had more severe cognitive impairments.

Another multicomponent anger management program was developed by Deffenbacher (1995) and was called ideal treatment package. This included assessing the individual’s anger and then working at developing self-monitoring, stimulus and response control, relaxation, cognitive restructuring, and interpersonal skills (Denmark & Gemeinhardt, 2002). A study has not been conducted to date regarding the application of this program with individuals with TBI.

Conclusion

In conclusion, several therapeutic approaches exist to assist individuals with brain injury to develop adaptive behaviors. At this time, there is not enough outcome data to dictate which therapy works best. The challenge for those who work with persons with brain injury is to find the intervention or combination of intervention strategies that works best for each individual. It is unlikely that one approach will ever be the ‘sole treatment’ for behavioral problems following brain injury. Unique individuals require unique and individualized treatment.

References

Albert Ellis Institute, & Abrams, M. (2004). Retrieved May 17, 2004, from Albert Ellis Institute Web site: http://www.rebt.org.

Alderman, N., Davies, J. A., Jones, C., & McDonnel, P. (1999). Reduction of severe behavior in acquired brain injury: Case studies illustrating clinical use of the OAS-MNR in the management of challenging behaviors. Brain Injury, 13(9), 669-704.

Alderman, N. (2003). Contemporary approaches to the management of irritability and aggression following traumatic brain injury. Neuropsychological Rehabilitation, 13(1/2), 211-240.

Bennet, T. L., & Raymond, M. J. (1997). Emotional consequences and psychotherapy for persons with traumatic brain-injury: Management of frustration and substance abuse. Journal of Head Trauma Rehabilitation, 13(6), 10-22.

Braunling-McMorrow, D., Niemann, G.W., & Savage, R. (Eds.). (1998). Training manual for the certified brain injury specialist (CBIS) (2nd ed.). Houston, TX: HDI Publishers.

Caraulia, A. P., & Steiger, L. K. (1997). Nonviolent crisis intervention: Learning to diffuse explosive behavior. WI: CPI Publishing.

Deffenbacher, J. L. (1995). Ideal treatment package for adults with anger disorders. In: H. Kassisnove (Ed.), Anger disorders: Definition, diagnosis, and treatment (151-172). Washington D.C.: Taylor & Francis.

Denmark, J., & Gemeinhardt, M. (2002). Anger and its management for survivors of acquired brain injury. Brain Injury, 16(2), 91-108.

Ellis, A., & Dryden, W. (1997). The practice of rational emotive behavior therapy (2nd ed.). New York: Springer.

Fluharty, G., & Glassman, N. (2001). Use of antecedent control to improve the outcome of rehabilitation for a client with frontal lobe injury and intolerance for auditory and tactile stimuli. Brain Injury, 15(11), 995-1002.

Kinney, A. (2001). Cognitive therapy and brain injury: Theoretical and clinical issues. Journal of Contemporary Psychotherapy, 31(2), 89-102.

Manchester, D. & Wood, R. L. (2001). Applying cognitive therapy in neuropsychological rehabilitation. In R. L. Wood & T. M. McMillan (Eds.), Neurobehavioral disability and social handicap following traumatic brain injury. Hove, England: Psychology Press.

Medd, J., & Tate, R. L. (2000). Evaluation of an anger management therapy programme following acquired brain injury: A preliminary study. Neuropsychological Rehabilitation, 10(2), 185-201.

Novaco, R. W. (1975). Anger Control. Lexington, KY: D.C. Health.

Pologe, B. (2001). About psychotherapy. Retrieved March, 2004, from http://www.aboutpsychotherapy.com.

Ponsford, J. (1995). Traumatic brain injury: Rehabilitation for everyday adaptive living. Hove, England: L. Erlbaum Associates.

Prigatano, G. P. (1986). Psychotherapy after brain injury. In G. P. Prigatano, D. J. Fordyce, H. K. Zeiner, J. R. Roeche, M. Pepping, & B .C. Woods (Eds.), Neuropsychological rehabilitation after brain injury. Baltimore: John Hopkins University Press.

ResCare Premier. (2002, June 19). Developing individual behavior plans [CO.Beh.401]. In Training, education, and mentoring system. St. Louis, MO: R. Estes (Ed.).

Schlund, M. W. & Pace, G. (1999). Relations between traumatic brain injury and environment: Feedback reduces maladaptive behavior exhibited by three persons with traumatic brain injury. Brain Injury, 13(11), 889-897.

White, S. M., Seckinger, S., Doyle, M., & Strauss, D. L. (1997). Compensatory strategies for people with traumatic brain injury. NeuroRehabilitation, 9, 205-212.

Wood, R. L. (2001). Neurobehavioral disorders: Their origin, nature and rehabilitation. Seminar provided at the meeting of the Ontario Brain Injury Association in conjuction with Brock University, St. Catharines, Ontario.

Wood, R. L., & Worthington, A. D. (2002). Neurobehavioral rehabilitation: a conceptual paradigm. In R. L. Wood & T. McMillan (Eds.), Neurobehavioral disability and social handicap following traumatic brain injury (107-132). Hove, England: Psychology Press.

Posted on BrainLine June 22, 2009.

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[WEB PAGE] True or False? Seven Common Myths About Brain Injury

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By Kellie Pokrifka, Member, Brain Injury Association of America Advisory Council

There is so much misinformation regarding brain injury floating around on the internet. Research in this field is progressing every day, and we frequently disprove old theories. It can be difficult to keep up with the latest research, so let’s take a few minutes to dispel some of the most common myths regarding brain injury.

Myth: You can always see brain injury on CT and MRI scans.

CT and MRI scans are looking for brain bleeds, skull fractures, and other acute trauma. Not all brain injuries, and especially not concussions, will appear on these scans. A clear CT or MRI does not eliminate the possibility that you have a brain injury.

Myth: Two years after brain injury, no further recovery can be made.

Many people assert that recovery from brain injury is only possible within the first year or two. We now know that is incorrect. Following the first nine months of recovery, time is no longer an indicator of recovery. What matters after this point is finding the proper therapies for your symptoms. Doing the right activities 50 years post-injury has the same chance of recovery as receiving proper treatment nine months out. Improvements in your recovery are always possible.

Myth: Concussions are not serious.

Concussion is a form of mild traumatic brain injury (TBI). “Getting your bell rung” or “seeing stars” are never things to ignore – they are signs of brain injury. Concussions are described as “mild” brain injury because they not usually life-threatening, but this does not mean they are not serious. While many people will fully recover after two weeks, a percentage of patients will have lifelong symptoms following a concussion.

Myth: Individuals with brain injury don’t think about suicide.

Unfortunately, suicide is not an uncommon occurrence after brain injury. Nearly one in five brain injury survivors admit to suicidal ideation, plans, or attempts in the five-year period following injury. In the general population, that statistic goes down to one in twenty-five. Extreme life changes and organic changes in the brain after TBI can increase the chances of suicide. Because of this increased risk, it is important for medical teams and loved ones to address this subject. Being open and honest about this tough conversation can save a life and help connect your loved one with proper resources. If you need help, you can call the suicide hotline at 1-800-273-8255.

Myth: Only athletes get concussions.

Concussions are not only a problem for athletes; concussions, like other TBIs, can happen anywhere, at any time, and to anyone. TBI is a common result of motor vehicle accidents, falls (particularly in elderly and child populations), military action or blast exposure, intimate partner violence, abuse, gunshot wounds, and other physical trauma.

Myth: If someone has sustained a concussion, you should wake them up every hour for the next day.

There is no need to keep someone awake for 24 hours after a concussion. Sleep is critical for brain injury recovery. If the person has been cleared by a professional for brain bleeds and acute trauma, restful sleep is safe and is crucial for recovery.

Myth: You should not be exposed to any stimulation that may trigger symptoms until you are completely recovered.

It used to be common practice to protect patients with brain injury by placing them in silent, dark rooms for weeks or months until symptoms subsided. However, the “rest and wait” approach is no longer an appropriate recovery plan and can actually worsen symptoms. Many experts even suggest light, controlled exercise within 72 hours of sustaining a concussion. As always, consult your doctor before making any changes to your recovery plan.

References

  1. “Brain Scans for Head Injuries.” Choosing Wisely, American Medical Society for Sports Medicine, 2018, www.choosingwisely.org/patient-resources/brain-scans-for-head-injuries/.
  2. Horn, Gordon & Lewis, Frank. (2013). Analysis of Post-Hospital Neurological Rehabilitation Outcomes. Journal of Head Trauma Rehabilitation. 28. E53-E54.
  3. Leddy, John J et al. “Exercise is Medicine for Concussion.” Current sports medicine reports vol. 17,8 (2018): 262-270. doi:10.1249/JSR.0000000000000505
  4. “Misconceptions about Sleep and Concussions.” ReThink Concussions, UPMC Life Changing Medicine, 2015, rethinkconcussions.upmc.com/concussion-sleep-myth.
  5. Schwartz-Lifshitz, Maya et al. “Can we really prevent suicide?” Current psychiatry reports vol. 14,6 (2012): 624-33. doi:10.1007/s11920-012-0318-3.
  6. Sports Medicine. “Concussion and Loss of Consciousness.” UPMC HealthBeat, 29 Aug. 2018, share.upmc.com/2015/04/concussion-and-loss-of-consciousness/.

This article originally appeared in Volume 14, Issue 1 of THE Challenge! published in 2020.

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[QUOTATION] A brain injury is like…

Η εικόνα ίσως περιέχει: πιθανό κείμενο που λέει "A brain injury is like rebuilding after natural disasters. There is a great deal of time, blood. sweat, tears and expense involved in our reconstruction process! Debbie Wilson"

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