Browsing by Person "Zanotto, Anna"

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“It Is Kind of Invisible Work”: Lived Experiences of Informal Caregivers of People with a Brain Tumor
(Elsevier, 2025-06-11) Zanotto, Anna; McVittie, Chris; Goodall, Karen; Ellison, Marion
Objectives Primary brain tumor presents symptoms related to both cancer and neurological condition. Due to unique characteristics and related care demands, neuro-oncology family caregivers experience different challenges compared to family members of other cancer survivors. The purpose of this study was to understand the informal caregivers’ lived experiences of coping, support needs, and changes in relationships while caring for family member or friend with a brain tumor. Methods In-depth interviews were conducted with 10 informal caregivers of people diagnosed with a primary brain tumor. The mean age of participants was 45 years (range 19-68 years), and 90% of participants were female (n = 9). Time since diagnosis of the family member ranged from 1 month to 13 years (mean = 4 years). Interviews were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. Results Five interrelated themes were identified following the analysis: (1) Exhaustion and all-consuming role, (2) experiencing rupture and loss, (3) togetherness and isolation, (4) navigating healthcare and lack of support, and (5) anticipating grief. There was an overarching sense of loneliness, loss on multiple levels, and feeling invisible in their caregiving role. Conclusion Neuro-oncology caregiving was described as an extremely challenging and lonely experience. The current findings support calls for healthcare services redesign which would provide family-based cancer care. Implications for Nursing Practice Findings highlight the importance of involving informal caregivers of persons with a brain tumor in the treatment process and their important role be acknowledged.
‘Make Them Wonder How You Are Still Smiling’: The Lived Experience of Coping with a Brain Tumour
(SAGE Publications, 2023-04-07) Zanotto, Anna; Goodall, Karen; Ellison, Marion; McVittie, Chris
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 lowgrade 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 semistructured 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. Among the aspects which facilitated positive coping were: 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.
“My Family Assumed I Was Going to Fight It”: Experiences of Social Support & Relationships After a Brain Tumor Diagnosis
(AOTA Press, 2023-07-26) Zanotto, Anna; McVittie, Chris; Ellison, Marion; Goodall, Karen
Date Presented 04/20/2023 The study explored the perceptions of social support and relationships after a primary brain tumor diagnosis. It was found that seeking support was associated with costs, and individuals did not always ask for it when needed. Primary Author and Speaker: Anna Zanotto Contributing Authors: Chris McVittie, Marion Ellison, Karen Goodall
Perceptions of social support and relationships while living with a brain tumour: a qualitative study
(Informa UK Limited, 2023-07-22) Zanotto, Anna; Goodall, Karen; Ellison, Marion; McVittie, Chris
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.