A malignant brain tumour often includes cognitive impairment. This affects both patients and families. Compared to other cancer patients, studies show that they are significantly in more need of social support and help for everyday activities. A network focused approach offering individual network meetings with and for young people with cancer has shown to facilitate the involvement of a supportive social network around the patient and the family, which can assist them in keeping their world together.
A participatory action research design was employed to develop and implement a researched based service that would promote and encourage a supportive social network for patients with primary brain tumours and their families. Patients and close relatives preferences and attitudes towards an offer of a network meeting were explored. The study involved parallel processes of individual interviews with patients and usually their spouses, focus group interview and group sessions of co-operative inquiry, education and interaction between the researcher and a group of ten clinical nurses.
Based on the findings the individual network meeting for patients with brain tumours has been shaped to fit their needs and wishes and are now fully implemented in the clinic. A group of nurses has been trained in planning and leading network meetings and acts as implementation agents. Early presentation of individualised network meetings is welcomed as an opportunity and accepted by about 40% of the patients and relatives. Data from the study are currently being analysed for publication.
Network meetings are highly valued by patients and their social network who have experienced a meeting. The interactive approach in action research has supported the implementation of the complex service - a service which has potential in other nursing areas. The presentation will focus on preparing and conducting network meetings and findings will be highlighted.
Clinical trial identification
Legal entity responsible for the study
Professor Charlotte Delmar, Section for Nursing. HEALTH. Aarhus University. Denmark. Matron Morten Keller, Department of Oncology, Aarhus University Hospital, Denmark.
Has not received any funding.
The author has declared no conflicts of interest.