Short summary

The study is designed as a pre- and post-test comparative quasi experimental intervention study conducted by the Department of Neurosurgery, Odense University Hospital. Inclusion of patients started in November 2013. Patients and family are included consecutively.

Pre-test: All patients and their families are interviewed from the questionnaire 4 and 14 weeks after diagnosis. At the same time as the interviews the patient's demographic data and confounders are collected.

Post-test and intervention: Data collection takes place the same way as in the pre-test. After the first collection of data, the nurse intervention is performed as 3 supportive conversations, directed to create a context for change in the areas of cognitive, affective and behavioural functions.

Rationale

Each year about 250 patients in Denmark are diagnosed with glioblastoma. Without treatment the patients will die within 3-4 months. For patients treated with surgery, radiotherapy and chemotherapy the average survival is about 14 months. Nearly all patients have behavioural, emotional and intellectual difficulties. The quality of survival of these patients and their family is of major importance. When a person is diagnosed with glioblastoma not only the patient's life change the whole family is affected.

On the basis of a literature study the objective will be (in addition to the care and treatment that has already been initiated in patients with glioblastoma and their families):

• To have a structured response in the form of Family Focused Nursing, giving a positive effect on the patient and their family's health-related quality of life.
• To see if Family Focused Nursing with glioblastoma can promote family skills for change readiness and disease management. 

Family nursing is a nursing intervention developed by Family Nursing Unit, Calgary University, Canada. The intervention is performed as supportive conversations in an interactive process with the use of reflexive questions, active listening and identifying the families function, resources and problems

Description of the cohort

All patients with glioblastoma operated at the Department of Neurosurgery, Odense University Hospital in the period from November 2013 and until January 2016, who are 18 years old or more and have signed informed consent will be included in the study. Patients who do not understand or speak Danish and patients who do not give informed consent will not be included in the study.

Data and biological material

Information about the patient and the next of kin Health Related Quality of Life (HRQoF) are collected by using the questionnaire the WHO Quality of Life Questionnaire (WHOQOL - BREF).

Family function, change readiness and disease management are collected by using The Family Function Style Scale (FFSS) and Family Hardiness Index (FHI).

All patients and their families are interviewed from the questionnaire 4 and 14 weeks after diagnosis. At the same time as the interviews the patient's demographic data and confounders are collected.

Collaborating researchers and departments

Research Unit of Nursing, University of Southern Denmark

• Associate Professor Birte østergaard, PhD

Department of Neurosurgery, Odense University Hospital

• Clinical Associate Professor Frantz Rom Poulsen, MD, PhD
• Nurse Karin Lütgen, SD
• Nurse Inge Faarup