Background

Previous research has established that some informal caregivers (relatives/friends) of people with visual impairment (PVI) may require support themselves. However, there is limited understanding of how healthcare services and sight charities in the UK currently support caregivers. This study was therefore conducted to explore what support, information, and advice healthcare and charity professionals (HCCPs) currently provide for caregivers, and which additional support HCCPs would recommend in order to benefit caregivers.

Methods

HCCPs filled out an online survey, distributed among UK-based professional bodies and charity partners. Of 104 individuals who consented to participate, 68 (65%) HCCPs completed the survey in September–November 2019. Participants responded to Likert-type questions about how they interact with and support caregivers of PVI. Thirty-eight (56%) participants provided responses to open-ended questions about improving support for caregivers; qualitative analysis was conducted using the Framework Method.

Results

The survey showed that caregiver support activities most commonly undertaken related to onward signposting (90% (95% CI: 82–97%) of participants), or providing information about low vision aids and adaptations (85% (95% CI: 77–94%)), compared to activities focused on broader caregiver wellbeing. In open-ended responses, HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system. They recommended improving coordination and accessibility of information, as well as provision of emotional support and tangible assistance such as respite care and financial support.

Conclusions

The study suggests that HCCPs perceive significant unmet needs among caregivers of PVI, and would welcome further resources, information, and training to support caregivers.

中文翻译：

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视力障碍者的照护者接受和需要哪些支持？英国医疗保健和慈善专业人士观点的探索性研究

背景

先前的研究已经确定，视力障碍者 (PVI) 的一些非正式照顾者（亲戚/朋友）可能需要自己的支持。然而，对于英国的医疗保健服务和视力慈善机构目前如何支持护理人员的了解有限。因此，本研究旨在探讨医疗保健和慈善专业人员 (HCCP) 目前为护理人员提供哪些支持、信息和建议，以及 HCCP 会推荐哪些额外支持以使护理人员受益。

方法

HCCP 填写了一项在线调查，该调查分布在英国的专业机构和慈善合作伙伴之间。在同意参与的 104 名个人中，68 名 (65%) 的 HCCP 在 2019 年 9 月至 11 月完成了调查。参与者回答了李克特类型的问题，即他们如何与 PVI 的照顾者互动和支持他们。38 名 (56%) 参与者回答了有关改善对护理人员支持的开放式问题；使用框架方法进行定性分析。

结果

调查显示，最常开展的护理人员支持活动与前行路标相关（90%（95% CI：82-97%）的参与者），或提供有关低视力辅助和适应的信息（85%（95% CI：77- 94%))，与关注更广泛的照顾者福祉的活动相比。在开放式回复中，HCCP 强调了护理人员在应对资源不足和复杂的系统时所面临的困难。他们建议改善信息的协调和可访问性，以及提供情感支持和有形援助，例如暂托护理和经济支持。

结论

该研究表明，HCCP 认为 PVI 护理人员存在大量未满足的需求，并欢迎提供更多资源、信息和培训来支持护理人员。