It s a stroke of genius

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1 It s a stroke of genius - network focused care and young people with cancer Dr. Pia Riis Olsen, Clinical Nurse Specialist, MSN, PhD., Post doc. Cancer and Inflammatory Center Department of Oncology

2 Teenagers and young adults with cancer are first and foremost young people who need to stay on track with their peers and their normal development despite months of arduous cancer treatment

3 Social support from their social network is a key to maintain this -and we health care professionals have a unique possibility to facilitate a supportive social network due to our knowledge and experience with other patients

4 Network focused care

5 Departmentof Oncology,, DK One of DK s largest cancer centers (6 centers/dk) A youth unit established year new young patients/yr in youth unit (age 15-22) Solid tumours Specialised in treatment of sarcomas A network focused approach to care

6 The youth corner of the living room A bedroom in our youth unit

7 Network Focused Nursing - a new concept Definition Nursing that implies an effort to mobilise the patient s social network and focuses on his/her relationship and interaction with this network. The aim is to encourage and enable the patient and his/her individual social network to maintain, establish and strengthen their relationships and secure social support during illness and rehabilitation A health promoting professional activity (Olsen 2009)

8 Background Strong social relations Morbidity, Risk of death from disease Recovery TYAs life - A complex psychosocial world Psychological and physical changes Transition/emerging young adult Vulnerable Dependant on a supportive social network

9 The social network Informal Family and friends Emotional relations Formal professional Case oriented relations The structure of social relations

10 Social support The positive function of a social network Instrumental support Emotional support Informational support Appraisal (House 1981, Due og Holstein 2003) Facilitating social support (Olsen 2009)

11 Corner stones of the network focused care A place in the hospital dedicated to TYAs Primary nurse and physician Multidisciplinary teamwork Parent-free-time Network meetings

12 Network meetings they are simply a stroke of genius! Ulrich, 20 years

13 At a network meeting

14 Network meeting agenda Information: disease, treatment, side-effects, follow-up, prognosis, how to act, etc. Everyday life and how to support: First of all a young person continue ordinary life Challenges for everyone in the network School, parties, friends, food, physical activity, conflicts that may arise, siblings etc. Questions and dialogs, humour and cosy atmosphere.

15 Frames of the network meeting No information is new to the patient and the significant others Communication matches the young person Young person s perspective The patient s two primary nurses lead the meeting Lasts 1½-2 hours

16

17

18 It was very good that the nurses told them, that though I look alright I may feel bad inside that it might not be visible how tired and worn out I feel but that they should keep calling me one day I may feel alright and go out for a beer or something with them Chris, 19 years

19 Quotations from participants I think it is good to be informed all together now I know a lot more than when I came. It has made a huge impression to meet all of you to see who is there for Peter and to get to know you nurses and doctors and know that you will take good care of him. It has broken the ice there is a lot of taboos about cancer now it is a lot easier to talk about it. These meetings are absolutely fantastic I have never experienced anything like it before I wish we had one when my mother was ill.

20 Thedifference Family centred care/family nursing Versus Network focused nursing

21 Lines of communication Nurses access to the social network Health professional network Young patient Private social network Nurse Significant others

22 Towards a theory of network focused nursing (Olsen 2009)

23 Creating a space for TYAs normal growth and development Sub-categories Sub-categories Tuning in Nurses TYAS and significant others Framing the situation Navigating towards the goal Bridging Keeping their world together Embracing the program Building strength Connecting people (Olsen, 2009)

24 FutureScandinavianresearch?

25 Thank you for your attention!

26 References Olsen, Pia Riis Towards a theory of network-focused nursing A grounded theory study of teenager and young adult cancer care. PhD Afhandling. Afdeling for Sygeplejevidenskab. Aarhus Universitet. Olsen PR & Harder I Keeping their world together. Meanings and actions created through network-focused nursing in teenager and young adult cancer care. CANCER NURSING, 32(6). Olsen PR & Harder I Network-focused nursing development of a new concept. Advances in Nursing Science, 33 (4). Olsen PR & Harder I Caring for teenagers and young adults with cancer: a grounded theory study of network-focused nursing, Eur.J.Oncol.Nurs., vol. 15, no. 2, pp Olsen PR & Bradbury-Jones C Using a knowledge utilization framework to explore how findings from one study can be applied to other nursing contexts. International Nursing Review. 60(3), pp Olsen PR. Netværksfokuseret sygepleje hjælper unge med kræft SYGEPLEJERSKEN ; pp ISSN: Grinyer A Young people living with cancer Implications for policy and practice. Open University Press, McGraw-Hill Education. England. Kelly D & Gibson F Cancer for Adolescents and Young Adults. Blackwell Publishing.

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