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澳大利亚头颈癌患者支持小组的可及性与特征

Availability and Characteristics of Support Groups for People With Head and Neck Cancer in Australia.

作者信息

Sharman Ashleigh R, Peng Yuan, Venchiarutti Rebecca L

机构信息

Department of Head and Neck Surgery, Chris O'Brien Lifehouse, Sydney, New South Wales, Australia.

Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia.

出版信息

Asia Pac J Clin Oncol. 2025 Aug;21(4):415-424. doi: 10.1111/ajco.14158. Epub 2025 Mar 10.

Abstract

AIM

Support groups are an effective way to improve quality of life (QoL) in cancer patients. Targeted support groups for head and neck cancer (HNC) can also help patients address specific treatment and survivorship challenges. The aim of this study is to understand the characteristics of existing HNC support groups in the Australian setting and identify any gaps in service provision.

METHODS

Existing HNC support groups were identified through an online search and their online information was assessed by adopting the perspective of a person with HNC. Support groups were considered eligible for this study if they were based in Australia and served HNC patients, their caregivers, friends, or family members.

RESULTS

Of the 26 support groups identified in the online search, more than half were based in major cities (n = 16) with three support groups across inner regional areas and three across outer regional areas. There were no support groups identified in remote areas of Australia. Most support groups took place in-person (n = 18) across a variety of physical settings, including hospitals (n = 10) and community spaces (n = 7). Topics frequently covered included: Education and information, sharing experiences and socializing, treatment and side effects, wellness and well-being, and carer support.

CONCLUSIONS

There is a need for HNC support groups outside of metropolitan areas, particularly in remote Australia. We must therefore identify means of supporting current and future groups in providing and promoting their valuable service to HNC patients across all locales.

摘要

目的

支持小组是提高癌症患者生活质量的有效方式。针对头颈癌(HNC)的定向支持小组也可帮助患者应对特定的治疗及生存挑战。本研究旨在了解澳大利亚现有头颈癌支持小组的特点,并找出服务提供方面的差距。

方法

通过在线搜索确定现有的头颈癌支持小组,并从一名头颈癌患者的角度评估其在线信息。如果支持小组位于澳大利亚且服务于头颈癌患者、其护理人员、朋友或家庭成员,则被认为符合本研究的条件。

结果

在在线搜索中确定的26个支持小组中,超过一半位于大城市(n = 16),三个在内陆地区,三个在外围地区。在澳大利亚偏远地区未发现支持小组。大多数支持小组以面对面的形式(n = 18)在各种场所进行,包括医院(n = 10)和社区空间(n = 7)。经常涉及的主题包括:教育与信息、分享经验与社交、治疗与副作用、健康与幸福以及护理人员支持。

结论

在大都市地区以外,尤其是在澳大利亚偏远地区,对头颈癌支持小组有需求。因此,我们必须确定支持现有和未来小组的方法,以便为各地的头颈癌患者提供并推广其有价值的服务。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5398/12206286/3428b9023840/AJCO-21-415-g003.jpg

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