Cystic Fibrosis

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  • Created by: Belle
  • Created on: 14-05-13 13:46
Definition of Cystic fibrosis
A disorder passed down through a family that causes thick, sticky, mucus to build up in the lungs, digestive tract and other areas of the body.
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Causes of cystic fiboris
A genetic mutation of the gene CFTR, caused by inheriting 2 recessive genes, both parents must be a carrier of the faulty gene, gene controls movement of water and salts in and out of cells therefore this cannot be controlled properly.
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Symptoms of cystic fibrosis
lining of lungs and intestines clogged up with mucus, persistant cough, recurrent chest infections, difficulty digesting food, causing poor weight gain and malnutrition, passing of large foul smelling motions.
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Progression of cystic fibrosis
Lung infections, leading to deterioration of respiratory system, reduced life expectancy to around 40, no cure.
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Physical impact of cystic fibrosis childhood
Tiredness due to waking early for treatment or appointments, caused by depression and anxiety, causing lack of sleep. Poor health due to low lung function having chest infections, breathing problems and coughing.
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Intellectual impacts of cystic fibrosis childhood
Regular hospital visits, missing time off school, falling behind, lacks opportunities in employment
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Emotional impacts of cystic fibrosis childhood
Lonliness as cant take part in everything their friends do, overprotective parents always wanting them to stay at home, tend to have slower growth than other peers leading them to feel inadequate and embarrassed as height and puberty develop later.
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Emotional impacts of cystic fibrosis 2 childhood
Missing time off school, lead to worries about future and wonder how they are going to be able to hold down a job, excessive sweating, leading to feeling embarrassed, lack of self-confidence.
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Social impacts of cystic fibrosis childhood
Over protective parents lead to social exclusion and isolation as they cant go out and wouldnt see friends as much, regular medication so parents may always want to keep and eye on the child.
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Financial impacts of cystic fibrosis childhood
High energy diet leads to high cost of food and extra products bought, high cost of travel to hospital for regular visits.
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Effects on family/carer of cystic fibrosis childhood
Parents may have to take time off work for hospital visits, putting pressure on job and income, providing high cost products to ensure the child is kept as well as possible including medication, vitamins, high calorie foods and physio equipment.
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Effect on family/carer of cystic fibrosis 2 childhood
May develop depression caused by stress and demand of looking after a child with CF, siblings may become independent as they learn that more attention is needed for child with CF, develop more understanding and needs of people who are ill/disabled.
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Physical impact of CF adulthood
Tiredness due to waking early for treatment or appointments, caused by depression and anxiety, causing lack of sleep. Poor health due to low lung function having chest infections, breathing problems and coughing.
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Intellectual impact of CF adulthood
Regular hospital visits, missing work, causing pressure on individual
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Emotional impact of CF adulthood
Knowing fertility may be harder and less likely to occur, leading to sadness and depression.
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Social impact of CF adulthood
Social exclusion and isolation as too tired to socialise or they need to be at home to take medication, lead to friends not inviting them out.
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Financial impact of CF adulthood
Low income from job as time off is needed and shorter hours as they tired sooner and cant work for long hours, high energy diet, leading to high cost of food and extra products, high cost of travel to hospital for visits.
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Effects on family/carer of CF adulthood
Stressed as they will worry about how they are doing without much support from themselves.
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Education barriers poor provision/access
Poor access to school with specialist equipment like high calorie food in canteen and appropriate sporting activites they can join in with, however the school may be far away to travel, specialties may be compromised.
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Employment barrier lack of opportunities due to discrimination
When looking for job, if employers know that you have CF, may not offer an interview due to knowing they have frequent days off.
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Employment barrier: lack of flexibility
People with CF have lack of flexibility due to frequent hospital appointments and develop frequent chest infections so have to have days off.
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Societal barrier: Resulting from ignorance, prejudice and discrimination
People with CF can be bullied by others and treated differently, causing them to not want to go out incase they are bullied or discriminated against.
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Societal barrier: Social exclusion
People may exclude others with CF as they may always have chest infections and cant go out so friends may stop asking, parents may not want the child to go out as they think its not safe, so they would be excluded from others.
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Societal barrier: Low expectations of ability
People in society think if you have a condition you cannot do some things others can like with CF people may think that they need help when walking up a flight of stairs as they think people with CF have problems exercising and with mobility.
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Societal barrier: societal expectations
People with CF may have expectations that a society has that individuals should conform to like having a job, however someone with CF may have had to leave their job due to being ill or having hospital visits.
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Economic barrier: Potential loss of earnings
People with CF could have loss of earnings as they may have to leave their job, causing them to be stressed and upset, leading to depression, making their illness worse.
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Economic barrier: Requirement for specialist support/equipment not provided by state
People with CF might need treatment not provided by the state such as a specialist, that is private, causing them to not receive treatment needed, developing further problems.
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Economic barriers: Lack of access to benefits
People with CF may have lack of access to benefits, finding it hard to access basic essential items.
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Economic barrier: Access to benefits
People with CF may have access to benefits if they had to leave their job due to the condition, helping them afford basic, essential things.
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Environmental barrier: Physical access to and within buildings
People with CF may have problems with physical access to building if suffering with bad chest infection, if building is far away, can cause issues getting there.
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Environmental barrier: Access to public and private transport
People with CF may have poor accessibility with services if suffering with chest infection and have hospital appointment that they have to get the bus for, may have difficulty getting to bus stop.
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Risks: Bullying
People with CF may experience bullying in schools as children find they are different as they are more vulnerable than others. Called rude names, teased or may miss time off and be behind other children so can be called stupid.
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Risks: Abuse
People with CF can receive verbal abuse from others discriminating against them, called rude names or be sarcastic towards them.
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Risks: stress
People with CF may have stress if miss days off school, under pressure for catching up with work, also if have days off at work, they may become stressed about what their employer will say/do.
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Risks: self-harm
People with CF may self harm as having the illness may cause them to be unhappy, they can be bullied or socially excluded, therefore this may be the only way to ease themselves from it.
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Risks:isolation/social exclusion
People with CF can suffer from exclusion as people may discriminate against them for being different, they may not have any friends, can be bullied at school, making them not want to go, can be socially excluded due to chest infections, cant go out.
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Legislation: Equality act
Relevant for CF as protects people from being discriminated against and provides legal rights for people in different areas like employment and education. Ensures they arent discriminated against for having the illness, so receive same opportunities.
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Legislation: Care standards act
Aims to promote high standards of care, protects vulnerable people, reforms law relating to inspection of various care institutions. New system for regulating healthcare provision, including domiciliary etc. Helps CF receive highest standard of care.
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Legislation: Childrens act
Aims to ensure children are protected from harm, they are safe and cared for in schools/nurseries. Relevant for CF as helps to protect them in education, ensures they receive same education as others, protects from bullying.
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Policies/codes of practice: Child protection policy
Aims to provide children/young people appropriate safety and protection while in care of school/carer. Promotes good practice for children. Relevent for CF as if child was bullied/socially excluded, staff ensure they make other friends and not alone.
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Policies/code of practice: School bullying policy
Every school has anti-bullying policy, providing safety, protecting and that they are happy at school. Relevant for CF as if being bullied, school intervene and bullying is dealt with so that the child is happy and safe.
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Service provision: Mainstream provision
CF needs provision by mainstream schools if missed time off school and need to catch up. May be too overwhelming to attend lessons, can go to seperate unit or 1to1 with staff member. IEP, school pastoral system, liaise with parents and meetings.
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Practitioners: Physio
Helps a person with CF by providing exercises to help dislodge mucus from their chest. Linked to health sector, provided by state or private hospitals.
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Practitioners: Dietician
Helps a person with CF providing them a plan for high calorie diet due to having a poor digestive system. Part of health service, provided by state/private.
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Practitioners: GP
Help a person with CF by referring them to consultants or prescribing medication. Part of health service, provided by state or linked to private hospitals.
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Practitioners: Hospital consultant
Help person with CF by doing regular checks on their lungs and mucus build up. Part of health service, provided by state or some private hospitals.
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Practitioners: Social worker
Helps person with CF by assessing the needs of them at home. Provided by state, private or voluntary.
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Practitioners: Community nurse
Helps person with CF by promoting healthy lifestyle so provide them with healthy diet plan to suit them. Provided by state, in health care sector or privately.
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Psychological LQF: autonomy
People with CF should have autonomy as they should be allowed to make their own choices.
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Psychological LQF: Social contact
People with CF need social contact so they have a chance to be with and interact with others. Otherwise they could be isolated or withdrawn.
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Psychological LQF: occupation
People with CF need occupation so they have something interesting like a job/hobby to focus on and motivate them.
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Psychological LQF: Psychological security
People with CF need to feel safe and know they will be looked after and treated well, helps them to create trust with specialists and encourage them to make progress with treatment.
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Psychological LQF: Equitable treatment
People with CF need to be treated fairly according to their needs and not discriminated against.
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Psychological LQF: Confidentiality
People with CF need confidentiality, as in schools someone with it may not want others to know.
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Physical LQF: Freedom from pain
People with CF need to be free from pain as physio can help them with exercise to help remove mucus and help prevent chest infections.
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Physical LQF: Exercise
Its said to help improve condition.
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Physical LQF: Nutrition
Make sure they receive appropriate nutrition as they need high calorie diet due to having poor digestion system. Dietician should provide diet plan containing high calorie diet, so receive all essential nutrients and dont develop malnutrition.
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Physical LQF: Physical comfort
Often uncomfortable so physio can help keep them comfortable and dislodge mucus.
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Caring skills: Communication
Need specialists to communicate with them in order to provide them with the best treatment, like physio, to keep regular update of how patient is doing.
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Caring skills: Encouraging
Need encouraging when going to physio if they dont like going, praising them when going to school if they dont enjoy it due to being bullied.
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Caring skills: Creating trust
Need to create trust between them and specialist, like between them and dietician so that patient feels relaxed and knows they will be receiving the best treatment.
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Caring skills: Reducing negative feelings and behaviours
May need other to reduce their negative feelings and behaviours if they are distressed or feeling angry or upset due to having the illness.
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Caring skills: Gaining compliance
Necessary to get them to do exercises provided by physio, to ensure they make good progress.
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Caring skills: Distraction
Children with CF might need it when attending physio sessions so that they remain still.
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Caring skills: Modelling
May be essential for physio when informing patient of exercises, model them to patients so easier for them to understand and perfect.
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Caring skills: Showing approval
Family should show person with CF approval when completing challenge or activity to motivate them to carry on progressing. Like doing daily exercises, they would be motivated and encouraged to do them everyday.
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Other cards in this set

Card 2

Front

Causes of cystic fiboris

Back

A genetic mutation of the gene CFTR, caused by inheriting 2 recessive genes, both parents must be a carrier of the faulty gene, gene controls movement of water and salts in and out of cells therefore this cannot be controlled properly.

Card 3

Front

Symptoms of cystic fibrosis

Back

Preview of the front of card 3

Card 4

Front

Progression of cystic fibrosis

Back

Preview of the front of card 4

Card 5

Front

Physical impact of cystic fibrosis childhood

Back

Preview of the front of card 5
View more cards

Comments

Sam Morran

Report

A good resource with accurate details of the disease.  Good terminology included - always helps to raise grades.

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