Advocating for carers: a qualitative study exploring the needs of UK carers of patients with an acoustic neuroma

Gilchrist, Katie; Vindrola‐Padros, Cecilia

doi:10.1332/239788221x16432145729095

Cited by 3 publications

(3 citation statements)

References 45 publications

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“…People felt they lacked information regarding their diagnosis and symptoms. This is consistent with previous literature that also identified deficits in disseminating information on AN (Pritchard et al 2004;Gilchrist and Vindrola-Padros 2022). Participants spoke about how a lack of information left them feeling surprised by some of the symptoms they experienced or underprepared for their impact (Cornwell et al 2012).…”

Section: Dissemination Of Informationsupporting

confidence: 86%

“…Thirdly, there is a need for greater access to services by increasing the awareness of available allied health and peer supports and increasing referrals from physicians. These suggestions are in line with previous research on AN that suggests the need for practical information and emotional support (Pritchard et al 2004;Brooker et al 2009;Gilchrist and Vindrola-Padros 2022). Future research should measure the success of implementation strategies to identify which strategies offer the greatest benefits.…”

Section: Future Recommendationssupporting

confidence: 80%

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Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Ben-Harosh,

Barker-Collo,

Nowacka

et al. 2024

Brain I.

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Background Acoustic neuromas (ANs) are consistently associated with decreased quality of life (QOL) related to the physical and psychosocial impacts of symptoms experienced from the tumour and its treatment. This study explored patient-reported experiences of ANs in New Zealand, with a focus on the impact on QOL and the provision of information, support and services. Methods A mixed methods approach was taken, conducting an online community survey that included the Penn Acoustic Neuroma Quality of Life Scale (N = 52). Those who indicated interest were offered semi-structured interviews after the survey (N = 17), which were analysed using content analysis. Results A negative impact on QOL was found, highlighting five key themes in the experiences of people: (1) ongoing physical, social and psychological impacts; (2) information and support from the medical system; (3) autonomy and decision-making; (4) the importance of peer support; and (5) remaining positive – life goes on. Conclusions Our findings indicate areas for improvement that may benefit people’s healthcare experience and QOL. Both quantitative and qualitative results identified gaps associated with person-centred care and the need for information, education, emotional support and access to services. Recommendations include a need for more information (verbal and written) during all stages of diagnosis and treatment, shared decision-making and increased access to allied health, including psychological services and support groups.

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Section: Dissemination Of Informationsupporting

confidence: 86%

Section: Future Recommendationssupporting

confidence: 80%

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Ben-Harosh,

Barker-Collo,

Nowacka

et al. 2024

Brain I.

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“…La base del tratamiento es la resección microquirúrgica, con la meta de lograr la resección exitosa del tumor. Aunque en la actualidad, ha sido sustituida cada vez más por la radiocirugía estereotáctica (Gilchrist et al,2022).…”

Section: ▪ Tratamiento Conservadorunclassified

Fundamentos novedosos de diagnóstico y tratamiento del neurinoma acústico

Núñez

Morejón

2023

Ciencia Latina

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Introducción: el neuroma acústico es una tumoración de origen benigno que surgen de las células de Schwann. Se caracterizan por rodear la rama del nervio vestibulococlear y su crecimiento es lento dirigido hacia el ángulo pontocerebeloso; dependiendo de su tamaño y las áreas que se vean involucradas surgirán las manifestaciones clínicas, así los pacientes tendrán al inicio pérdida auditiva unilateral. Sus métodos diagnósticos son la tomografía y resonancia magnética que ayudaran a caracterizar la lesión y la clasificación de Koos será decisivo para optar por un tratamiento. Objetivo: Describir el diagnóstico y tratamiento del Neurinoma acústico para desarrollar enfoques de calidad en el manejo de los pacientes. Metodología: la presente investigación se trató de una revisión bibliográfica sistémica que abarco el diagnóstico y tratamiento del Neurinoma acústico, para lo cual se usaron los descriptores en ciencias de la salud, tanto en español como en inglés; posteriormente se usaron plataformas de medicina basa en la evidencia, junto con la revisión de 38 fuentes bibliográficas para abarcar completamente con los objetivos propuestos. Conclusiones: sigue siendo un reto el resguardar el control de la labor neurológica, dado los tratamientos invasivos por los que se debe optar, por esa razón se debe desarrollar nuevas técnicas menos invasivas que mejoren tanto el pronóstico como el nivel de vida de estos pacientes.

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Editorial

Yeandle

2022

International Journal of Care and Caring

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Advocating for carers: a qualitative study exploring the needs of UK carers of patients with an acoustic neuroma

Cited by 3 publications

References 45 publications

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Quality of life and broader experiences of those with acoustic neuroma: a mixed methods approach

Fundamentos novedosos de diagnóstico y tratamiento del neurinoma acústico

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