Patient and Family Education (Psycho education) Windsor, November 19 th 2009

Transcription

1 Patient and Family Education (Psycho education) Windsor, November 19 th 2009 Anita Waldmann, Myeloma Euronet 2009

2 Every cancer diagnosis produces fears for patients and relatives fear of dying fear of pain Shock of Diagnoses fear of being handicapped fear of loosing social life fear of loosing their jobs fear of loosing autonomy Brian Fies. Mom's cancer 2

3 Lack of knowledge / misunderstanding Producing uncertainness musing Cartoon Aerzte-Zeitung 3

4 Family members want to be included 4

5 Searching for Information Internet Patient support groups (local) Meetings Seminars Networks 5

6 First Questions What does this disease mean? Is there any hope to survive? Is our doctor the right one? Where are the specialists? What kind of treatments are available? What will change for our daily life? How can we live without thinking every day of it? Can I get cured? 6

7 I filled more and more folders with information about several theories, medications, therapies, trials, studies and tests Many facts of disease It became much more difficult than I thought to find the right information Brian Fies. Mom's cancer 7

8 It didn t take long time and I did escape because I was afraid to lose my mind No end Getting confused by all the different information Many options of therapy Each weekend another seminar. Each month a new GURU. In each talk the promise of the newest truth about THE cure Brian Fies. Mom's cancer 8

9 Patients and Relatives must cherish a hope by their treating physicians, nurses, e.g.. through a patient support group by own experiences of other patients / relatives mindful, emphatic listening qualified information about disease, treatment options, ongoing trials, coping with side effects, coping with social problems professional psycho social support by monthly meetings, patient- & family seminars, brochures e.g. 9

10 Patients and Relatives must cherish a hope by their treating physicians, nurses, e.g.. through a patient support group by own experiences of other patients / relatives mindful, emphatic listening qualified information about disease, treatment options, ongoing trials, coping with side effects, coping with social problems professional psycho social support by monthly meetings, patient- & family seminars, brochures e.g. 3. Freiburger Patienten- & Angehörigen Forum THEMEN: Aktuelle Entwicklungen, Erkenntnisse und Therapieoptionen in der Behandlung von Lymphomen, Leukämien und Multiplem Myelom 17. Oktober :00 bis 17:00 Uhr Max-Weber-Schule (Berufliche Schulen) Fehrenbachallee 14, Freiburg/Brsg. Wissenschaftliche Leitung: Prof. Dr. Monika Engelhardt Foto: Karl-Heinz Raach Programmanforderung / Anmeldung: Leukämiehilfe RHEIN-MAIN e.v. Tel.: / Fax: , buero@lhrm.de 10

11 Never give up hope is essential for living Brian Fies. Mom's cancer 11

12 HOPE Everybody hopes there is a cure There will be a treatment for this disease Either by first line-treatment or by development of new drugs Nobody really wants their loved ones to be part of experimental trials Most people think they are like guinea-pigs but many would participate in clinical trials if they promised a chance of surviving the cancer 12

13 Sometimes it is difficult to make understand that even a very promising therapy still has to prove effectiveness for some kinds of diseases particular criteria have to be met for the use of certain kinds of therapy newly developed studies are not always as successful as expected today almost every cancer can be recognized by their own molecular structures 13

14 Important fundamentals Many therapy options must be available Best therapy decision must be made together with doctors, patients and family There are no generally accepted therapy Aim is cure or long term remission Careful consideration to use therapy options sequentially Openness for all possible therapy options Avoiding unnecessary toxicity / side effects 14

15 Change of relationships between Partners between friends, colleagues, neighbors to parents, children, siblings 15

16 Good and bad days like in general life Brian Fies. Mom's cancer 16

17 Patient and relatives are often not on the same path Sensitivity and eruptions of unusual emotions are normal on both sides impotence, angriness, reproaches, and aggressions Encouraging relatives and patients to have open conversations with all involved players Telling unusual symptoms immediately Not hiding information about it 17

18 Relatives and Partner Relatives/Partners are having own burdens! fears often not recognized overwhelmed because they want to spare the patient need of help to cope with problems! Especially for children of cancer patients Help is urgent needed! 18

19 Relatives/Partner & Patients financial problems change of position, vital parts change of needs Life threatening situation according the necessity facing new tasks e.g. Care Patients Partners taking over responsibility being supportive Threat of social Identity and self-confidence Loss of physical integrity Loss of Autonomy Loss of Activity Social Isolation Stigmatization being a burden threat of probable loss 19

20 Advocating for better treatment, care, support Unit for the Pre-Authorisation Evaluation of Medicines for Human Use Post-Authorisation Unit 20

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22 All cartoons of this book Mom s Cancer 22