Emma McDougall, Sara Nordentoft, Sine Kjærgaard, Georgia K B Halkett, Anna K Nowak, Haryana M Dhillon, Lauren J Breen, Karin Piil
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引用次数: 0
Abstract
Objective: The primary objective of this research was to explore the rarely discussed, often unspoken, taboo thoughts and difficult emotions experienced by carers who support individuals with brain tumour related personality and behaviour changes. A secondary aim of this study was to examine coping strategies used by these carers.
Methods: A qualitative interview study was conducted with participants from Australia (n = 7) and Denmark (n = 6) (92% female, aged 42-68 years) who had been or were current carers for someone with a primary malignant brain tumour who was displaying personality changes. Semi-structured interviews were conducted. Using thematic analysis, key themes were identified.
Results: Four key themes related to carers' unspoken thoughts were identified: (1) Staying safe: "His aggression was just out of this world"; (2) Conflicting and complex emotions: "I love him for who he was"; (3) Wishing for the end with grief and relief and (4) Experiences of patient death and end of life treatment decisions. Carers described five coping strategies: (1) Commitment to care; (2) Life alongside carer role; (3) Acceptance of circumstances; (4) Self-silencing; and (5) Information seeking and safety planning.
Conclusions: The relentless nature of this disease and potential treatment side effects places an immense burden on carers that often is unspoken. The findings highlight the importance of healthcare professionals providing support for carers, in asking about their experience, and appropriate assessment and management of brain tumour related aggression. The results hold the potential to inform targeted interventions for the unique challenges faced by carers supporting someone with brain tumour related personality and behaviour changes.
期刊介绍：
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.
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