Rehabilitation in People Living with Glioblastoma: A Narrative Review of the Literature.

Glioblastoma is the most common primary malignant brain tumor. While preliminary data point to the positive effects of rehabilitation for patients with glioblastoma, there are unique challenges for clinicians working with this population, including limited life expectancy and/or rapid neurological deterioration. The aim of this article is to review the literature on rehabilitation of adults with glioblastoma, including the feasibility of interventions, their effectiveness, as well as the current clinical practice. The reviewed literature suggests that rehabilitation has been found beneficial for improving the functional prognosis and quality of life of adults with glioblastoma and is desired by patients. We summarize the qualitative evidence regarding healthcare professionals' and patients' perspectives on the use of supportive care services. We conclude there is a need for the design of effective rehabilitation programs for patients with glioblastoma, as well as for the development of glioblastoma-specific clinical guidelines for rehabilitation practitioners.

Perceptions of social support and relationships while living with a brain tumour: a qualitative study.

OBJECTIVE: Having a brain tumour can disrupt social roles and networks. Despite growing evidence on the significance of social support in adjustment to chronic illness, research rarely focuses on the role of relationships when coping with a brain tumour. The current study sought to explore individuals' experiences of social support, and the dynamics within their social relationships, following a diagnosis of a brain tumour. METHODS: Interpretative Phenomenological Analysis (IPA) was used as a methodological framework. Participants were 12 individuals (83% female) aged 29-54 years diagnosed with primary brain tumour (83% low grade), on average 3.5 years post-diagnosis. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using IPA. RESULTS: Five themes were identified: Coping together in the family; Being concerned about others; Giving and receiving support; Needing to share the experience; and Negotiating independence. The results highlighted that the illness affected a whole network of closest relationships, and that coping was not an individual task. CONCLUSION: Coping with the condition was deeply socially embedded. There was a cost associated with seeking support and participants did not always ask for it, in order not to burden the caregivers. Talking to others with similar diagnoses provided a sense of validation and belonging.

'Make Them Wonder How You Are Still Smiling': The Lived Experience of Coping With a Brain Tumour.

A brain tumour can be a life-threatening illness and cause unique symptoms compared to other types of cancer, such as cognitive or language deficits, or changes in personality. It is an exceptionally distressing diagnosis which can affect quality of life, even for those with a low-grade tumour or many years after the diagnosis. This study sought to gain an in-depth understanding of the lived experience of adjustment to living with a brain tumour. Twelve individuals (83% female) with a primary brain tumour (83% low-grade) took part in the study. Participants were aged 29-54 years, on average 43 months following the diagnosis, and were recruited through the charitable support organisations in the United Kingdom. In-depth semi-structured interviews were conducted, transcribed verbatim, and analysed using interpretative phenomenological analysis (IPA). Six inter-related themes were identified: making sense of the diagnosis, seeking empowerment, feeling appreciative, taking charge of coping, learning to accept, and negotiating a new normality. Notions of empowerment, gratitude, and acceptance throughout the illness journey were prominent in the participants' narratives. Receiving sufficient information and initiating treatment were important in negotiation of control. The results highlighted what facilitates and hinders adaptive coping. Aspects which facilitated positive coping were as follows: trust in clinician, feeling in control, feeling grateful, or accepting. Participants on a 'watch and wait' approach, while feeling appreciative, perceived the lack of treatment as difficult and frustrating. Implications for patient-clinician communication are discussed, particularly for patients on a 'watch and wait' who might need additional support in adjusting.