Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse,...
Transcript of Cystic Fibrosis and nursing - CF-Europe · Cystic Fibrosis and nursing Kristine Colpaert CF Nurse,...
![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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/1.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/2.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/3.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/4.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/5.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/6.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/7.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/8.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/9.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/10.jpg)
(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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/11.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/12.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/13.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/14.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/15.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/16.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/17.jpg)
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](https://reader033.fdocuments.net/reader033/viewer/2022060217/5f06462f7e708231d4172ba8/html5/thumbnails/18.jpg)
IS MULTI TASKING .... with TLC
(Tender Loving Care)
CF nursing...
Ευχαριστούµε