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Emotional support

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An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

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An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

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Caring for a loved one can be challenging, and it is important that you are supported too. With the right support, you can care for your loved one when they need it most.1


Support can come from many sources, for example from family, friends, religious organisations or carer support groups. You should always speak openly about your caring duties with those involved in the treatment of your loved one. They will be able to guide you towards resources and carer support groups which can help you to manage the day-to-day needs of looking after a loved one.

 

 

Where can I get support?


There are many sources of support that you can access. You can ask your loved ones treatment team to help you find resources or search online for support. For example, The British Lung Foundation (UK), Pulmonary Fibrosis Foundation (USA) and Lung Foundation Australia (Australia) can help you access emotional support in your local area. You may also be able to speak to local charities who support people in a caring role for somebody with a serious illness.

 

 

Family counselling for those providing care


A counsellor can help you learn to develop coping strategies for the emotional demands of being a carer. They can help you through the difficult emotional periods and work through any stress, anger, and guilt that can come with being a carer. You can ask your loved ones treatment team about getting support or search online to find  services available in your local area. 

 

 

Carer support groups


Carer support groups offer an opportunity to share your thoughts, ideas, and suggestions, and compare notes with others in a similar situation. They are a safe place to vent your feelings to help maintain your mental wellbeing.1

Older couple sharing a joke
Carer support groups

Carer support groups allow carers to share their feelings and help them stay strong and committed

An operation to replace a patient’s diseased lungs with lungs from a donor
View in glossary

The worsening of a disease/condition over time

View in glossary

A formal documentation when someone else is given the responsibility to manage your affairs and make certain decisions on your behalf

View in glossary

Refers to the lungs

View in glossary

A group of tests used to check how well the lungs take in and release air and how well they supply oxygen to the rest of the body14

View in glossary

A type of high blood pressure that affects the blood vessels to the lungs and the right side of the heart15

View in glossary

Therapy that provides relief from symptoms to help patients live more comfortably with their disease13

View in glossary

Administration of oxygen as a medical intervention11

View in glossary

A small plastic tube or prongs that fit in the nostrils to deliver supplementary oxygen11

View in glossary

Listening to and playing music as a therapy which aims to ease the symptoms of those living with IPF

View in glossary

A sleep disorder characterised by breathing that repeatedly stops and starts during sleep12

View in glossary

A specialist who helps someone recover or live with their symptoms more easily

View in glossary

A machine that removes other gases from the air to provide oxygen for oxygen therapy11

View in glossary

An education and exercise programme designed to improve the quality of life for people with lung conditions16

View in glossary

A physician specialised in lung problems (also known as a respirologist)

View in glossary

A product that gives protection against a specific infection

View in glossary

A test used to monitor oxygen levels in a patient’s blood, usually with a non-invasive sensor11

View in glossary

A breathing technique to help control breathlessness and reduce anxiety17

View in glossary

A disease that affects only a small percentage of the population

View in glossary

Something that is associated with an increased risk of disease or infection

View in glossary

A technique that helps to reduce stress and anxiety by helping to understand and manage your emotions

View in glossary

Therapies used alongside conventional treatments that help treat symptoms and may improve overall physical and mental wellbeing

View in glossary

A medical study that investigates how safe and effective a new therapy or technique is for treating a certain disease

View in glossary

A disease or condition that occurs at the same time as another disease or condition

View in glossary

A device to deliver compressed air to improve sleep in people with obstructive sleep apnoea6

View in glossary

A disease where a waxy substance (plaque) builds up inside the coronary arteries, which supply oxygen-rich blood to the heart muscle7

View in glossary

A type of chronic disease that typically worsens over time and is characterised by long-term breathing problems and poor airflow. Chronic bronchitis and emphysema are older terms used for COPD5

View in glossary

Refers to the heart, and blood vessels

View in glossary

A type of medication that aims to slow the scarring and stiffening of lungs to slow disease progression2

View in glossary

Tiny air sacs in the lungs where the exchange of oxygen and carbon dioxide to and from the blood takes place

View in glossary

A test that shows how well the lungs are working by measuring how much oxygen and carbon dioxide is in the blood. This test requires that a small volume of blood be drawn from the patient3

View in glossary

Techniques that involve breathing in a certain way to control breathlessness and strengthen your lungs

View in glossary

A procedure in which a bronchoscope (a medical instrument like a tube) is passed through the mouth or nose into the lung and fluid is squirted into a small part of the lung and then collected for examination4

View in glossary

A lung condition where the air sacs within the lungs (alveoli) become damaged5

View in glossary

Extreme weariness resulting from exertion or illness

View in glossary

Of unknown cause

View in glossary

Rapid and uncontrolled breathing

View in glossary

A disease where there is progressive scarring or thickening of the lungs without a known cause4

View in glossary

The surgical removal of cells or tissue samples from the lung for examination by a pathologist10

View in glossary

The lung tissue becomes thickened and stiff

View in glossary

A test that uses a type of X-ray that produces multiple, detailed images of areas inside the body4

View in glossary

A burning sensation in the chest, which can spread to the throat, along with a sour taste in the mouth

View in glossary

Where inflamed tissue is replaced with scar tissue, making it thicken and become stiffer4

View in glossary

A symptom where the ends of the fingers become wider and rounder8

View in glossary

A digestive disease where stomach acid moves up out of the stomach and irritates the lining of the food pipe (oesophagus)9

View in glossary

A physician specialising in the management of diseases of the digestive system

View in glossary

An event characterised by sudden, severe worsening of symptoms or an increase in disease severity1

View in glossary

Charities


Many charities can offer support to people who are providing caring duties for their loved one. Different charities will be available depending on your local area and services. Your loved one's treatment team may also be able to recommend charities in your area.


Charities focus on promoting health and providing support for those affected by various diseases, including those affecting the lungs. Many of them campaign for improvements in the level of care offered to people affected by chronic diseases and improving overall public awareness.


Charities are a great resource for promoting better understanding, as well as alleviating, treating and preventing disease. These charities can be useful for getting more information and guidance when providing the care of a loved one living with IPF.

Key Takeaways

  • Being a carer can be emotionally challenging, but also hugely rewarding

  • As well as looking after your loved one, you must also look after your own physical and mental wellbeing

  • Family, friends, carer support groups and charities can offer support to carers

Show references Hide references
  1. 1.

    Belkin A, et al. A qualitative study of informal caregivers' perspectives on the effects of idiopathic pulmonary fibrosis. BMJ Open Respir Res. 2014; 1: e000007

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It's very hard to explain a rare disease as IPF to your family and your friends because most people have never heard about it because it's so rare

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