'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.

The relationship between adult attachment and coping with brain tumour: the mediating role of social support.

OBJECTIVE: A primary brain tumour diagnosis is known to elicit higher distress than other forms of cancer and is related to high depressive symptomatology. Using a cross-sectional design, the present study explored how individuals cope with this diagnosis using an attachment theory framework. Attachment anxiety and attachment avoidance were hypothesised to be positively related to helplessness/hopelessness, anxious preoccupation, and cognitive avoidance; and negatively related to fighting spirit and fatalism coping. We proposed perceived social support to play a mediating role in those associations. METHODS: Four hundred and eighty participants diagnosed with primary brain tumours completed the Mini-Mental Adjustment to Cancer Scale (Mini-MAC), the Experiences in Close Relationships Questionnaire-Revised (ECR-R), and the modified Medical Outcomes Study-Social Support Scale (mMOS-SSS) online. RESULTS: Lower perceived social support mediated the positive associations between both higher attachment anxiety and avoidance and higher helpless/hopeless coping. Attachment anxiety was also positively associated with anxious preoccupation. This relationship was not mediated by perceived social support. Cognitive avoidance was unrelated to both attachment dimensions and social support. CONCLUSIONS: The findings highlight that the differences in coping repertoire are associated with social relatedness factors, specifically attachment security and its relationship to perceived social support. Implications of the findings are discussed.

Negotiating parental accountability in the face of uncertainty for attention-deficit hyperactivity disorder.

Despite extensive research into attention-deficit hyperactivity disorder (ADHD), parents' constructions of their children's behaviors have received limited attention. This is particularly true outside North American contexts, where ADHD is less established historically. Our research demonstrates how United Kingdom parents made sense of ADHD and their own identities postdiagnosis. Using discourse analysis from interviews with 12 parents, we show that they drew from biological and social environmental repertoires when talking about their child's condition, paralleling repertoires found circulating in the United Kingdom media. However, in the context of parental narratives, both these repertoires were difficult for parents to support and involved problematic subject positions for parental accountability in the child's behavior. In this article we focus on the strategies parents used to negotiate these troublesome identities and construct accounts of moral and legitimate parenting in a context in which uncertainties surrounding ADHD existed and parenting was scrutinized.

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.