1611P - Family carers’ experiences with brain metastases: A longitudinal qualitative study

Background

Living with brain metastasis (BM) causes distress for patients and family carers. Patients report a wide range of physical, social and psychological problems that affect daily life for them and their families. Despite the high prevalence of BM, little is known about the experiences of family carers. This qualitative study explores how family carers of BM patients perceive the information and communication about diagnosis, the health care services provided, and how their lives are affected by the BM.

Methods

This was a prospective qualitative study with individual semi-structured interviews. Participants were interviewed three times; shortly after the BM diagnosis, and then after two and four months. A total of 40 interviews with 18 adult family carers (13 spouses, 2 adult children, 2 siblings) were conducted. Transcripts were analysed using a reflexive thematic analysis. A trajectory matrix was developed for the longitudinal design, searching for overarching themes over time as well as changes in the themes identified.

Results

For many family carers the BM diagnosis was experienced as particularly frightening, given that the metastases were located in the brain. Family carers felt that they lived in a rapidly changing, chaotic and unpredictable situation. They reported working nonstop to coordinate family life, the patient’s health care follow-up, and to maintain a sort of normality in daily life. The situation affected their relationship with the patient, especially daily life activities and communication. The need for information was extensive among most family carers. They emphasized a need for more information about treatment and prognosis to be able to plan for the future. This information need remained high through all interviews.

Conclusions

Being a family carer of a patient with BM implies extensive practical, emotional and psychosocial challenges. The need for continuous information is particularly high, and health care providers should tailor their information to the individual recipient. Palliative care, with a person-centred approach and systematic follow up of the needs of family carers, should be introduced in an early stage.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Oslo University Hospital.

Funding

The Norwegian Cancer Society Pink Ribbon and The Norwegian South-East Health Trust.

Disclosure

All authors have declared no conflicts of interest.