Finding the right kind of support: A study of carers of those with a primary malignant brain tumour.

Abstract

PURPOSE: Caring for someone with a primary malignant brain tumour is very demanding due to the dynamic situation involving changes to personality, short term memory loss and changes in family relationships. The purpose of this qualitative study is to examine the support needs of carers of those with a primary malignant brain tumour. METHODS & SAMPLE: 22 Carers who were currently caring for someone with a primary malignant brain tumour were recruited from one specialist cancer centre in the south east of England. The study took a grounded theory approach and data were analysed using the constant comparative method generating categories and themes that are grounded in the data. KEY RESULTS: A key concept that emerged from the data was: 'Connecting on the caring journey'. The themes that emerged from the key concept were: building helpful relationships; safe places and comfort zones; and threats to connecting. CONCLUSIONS: Many carers do find a great deal of support within the family and from their relationships with friends as well as from cancer and carer support groups. However this is by no means universal and many carers experience a lack of timely access to good quality supportive care services. For some carers supportive care services do not meet their expectations so they spend valuable time searching for the connections they need to continue to care combined with feeling frustrated and under pressure.

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