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Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium

Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

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Page 1: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Cystic Fibrosis and nursing

Kristine Colpaert

CF Nurse, UZ Leuven Belgium

Page 2: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

CF AND NURSING

Teamwork

Education and knowledge

Tasks

Long term care for children and adults with CF

Page 3: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Disease

progression

Severe psychosocial

impact

Multidisciplinary team

TEAMWORK

Cystic Fibrosis ( CF) = Complex disease

Page 4: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

CF patient

Doctor

Nurse

Physio-therapist

Psycho-logist

Social worker

Dietician

Secretary

TEAMWORK IN CARE

Page 5: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Cystic Fibrosis / course of disease

Genetics

Medication

Physiotherapy

Nutrition

Pathogens / infection controle

Additional diagnoses ( diabetes –osteoporosis)

New insights / developments in CF care

EDUCATION - KNOWLEDGE

Page 6: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Outpatient clinic

vital signs, bloodtests, pulmonary function tests, chest x – ray etc

Hospitalisationdiagnosis, exacerbation, pre –transplantinvestigation ...

at hospitalisation: plan for discharge, home iv therapy

Post – clinic patient reviewPatient contact by mail/ phone e.g. change in therapy, additional tests

Support, counseling and refering to other teammembers / healthcare workers

TASKS: PREPARE AND EXECUTE

Page 7: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

LONGTERM CARE

Diagnosis

Information about CF

Introducing team to patient / parents

Nebulizer - use of / maintenance

Hygiene

Medication - indication, how to take and preserve

Page 8: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Continuous care

Support in understanding CF and how to insert therapy in

daily life

Adherence

Coping with CF diagnosis

……

Page 9: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Dependency of parentsFarewell to pediatrician

Future?

Self care & independency

Other hospital / CF team

Pride & satisfactionCare specific for CF -adult

Transition from pediatric to adult care

Page 10: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

(YOUNG)-ADULT CARE

Sexuality – Fertility – Pregnancy

Additional Diagnosis

Increasing disease severity

Transplantation

End of life

Page 11: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

CongenitalBilateral

Absence of Vas Deferens

Obstructiveazoospermia

98%

�Stress�Malnutrition

� Tough mucus�Irregular or anovulatory

menstrual cycle

Less fertile? ? %

Sexuality & Fertility

Page 12: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Health care professionals should initiate discussions

with patients and their parents /partners

Provide information during early adolescence

Repeat information over time, perhaps at set stages

within child/adolescents development

Parents need help to fulfill their role to inform and

educate their children

Possible misconceptions need permanent attention, e.g.

men mixing up infertility and impotence

Page 13: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Fertility and Pregnancy

Male:

Treatment female

partner

Female:

• Medical condition

• Invasive treatment

• Risk to mother and child

• CF inheritance

• Burden on healthy partner when caring for ill parent

• Ethical aspects of sever illness / untimely death of CF parent

• Child caring for ill parent

• ICSI IntraCytoplasmic Sperm Injection

Page 14: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Additional diagnosis – Diabetes

Screening from age 12

30% of CF adults

Diagnosis - a shock

Poor adherence to insulin

Diet measures

Page 15: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Increasing disease severity

Increasing daily therapy / burden

School / work

Friends and family life

Anxiety

Adaptation to restricted possibilities

Future?

Page 16: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

Transplantation

Increasing illness severity: infections , complications

Choice of the patient

Preparing for transplantation: time to transplantation, anxiety, life after, financiel aspects

After: rehabilitation, medication, hygiene, nutrition, fear for infection / rejection.

Page 17: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

End of life

Not delay talk with patient and family about possibilities and

expectations

Importance of good communication among healthcareworkers

Respect for patients’ choice

Organising comfort care

Care for bereaved relatives

Page 18: Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse, UZ Leuven Belgium. CF AND NURSING Teamwork Education and knowledge Tasks Long term

IS MULTI TASKING .... with TLC

(Tender Loving Care)

CF nursing...

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