Exploring experiences of reasonable adjustments in cancer care among patients with disabilities and their carers: A focus group study in South West England

IF 2 Q3 HEALTH POLICY & SERVICES

Journal of Cancer Policy Pub Date : 2025-09-18 DOI:10.1016/j.jcpo.2025.100641

Selin Siviş , Andrew Turner , Hannah Little , Shamim Kholwadia , Ruth Hendy , Fiona Spence , Gifty Markey , Jon Banks

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Abstract

Background

The UK Equality Act 2010 mandates equal access to healthcare for people with disabilities. For those with disabilities who have also been diagnosed with cancer, addressing these needs is complex and multifaceted. Whilst existing research has primarily focused on reasonable adjustments for individuals with learning disabilities or autism, this study broadens the scope to include physical disabilities, cognitive or sensory impairments, and mental health conditions.

Aim

This study aimed qualitatively explore and understand the experiences of individuals with disabilities requiring reasonable adjustments, who have direct or indirect exposure to cancer treatment within the cancer care setting, as well as the experiences of their carers.

Methods

Qualitative study based on seven focus groups with 44 participants who have direct or indirect experience of cancer treatment and experience of one or more of a range of conditions that may require reasonable adjustments. Thematic analysis was used inductively to explore patterns.

Results

Participants described various care pathway adjustments but also noted their limited effectiveness. The main concern was a lack of alignment with individual needs. Three key areas for improvement emerged: (1) communication and coordination (e.g., clearer signposting, longer appointments, better understanding of needs); (2) support for family and carers (e.g., tailored adjustments for caregivers, clearer explanations); and (3) adherence to compassion and empathy (e.g., avoiding jargon, using accessible language, and ensuring patients feel heard).

Conclusion

Reasonable adjustments are necessary but not sufficient for equitable care. Participants emphasised the need for an integrated approach to individual needs to ensure adjustments are both accessible and effective.

Policy summary

An integrated understanding of individuals’ and their family carers’ needs should underpin approaches to reasonable adjustments by healthcare providers. A first step to achieving this is to develop training for healthcare professionals to encompass a broader understanding of reasonable adjustments beyond legal categories.

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残障患者及其照护者在癌症照护中合理调整的经验探讨：英格兰西南部的焦点小组研究。

背景：2010年《联合王国平等法》规定残疾人享有平等的医疗保健机会。对于那些同时被诊断患有癌症的残疾人来说，解决这些需求是复杂和多方面的。虽然现有的研究主要集中在对有学习障碍或自闭症的个体进行合理调整，但这项研究扩大了范围，包括身体残疾、认知或感觉障碍以及精神健康状况。目的：本研究旨在定性地探索和了解在癌症护理环境中直接或间接接受癌症治疗的需要合理调整的残疾个体的经历，以及他们的照顾者的经历。方法：定性研究基于7个焦点小组的44名参与者，他们有直接或间接的癌症治疗经验，并经历了一种或多种可能需要合理调整的条件。主题分析采用归纳分析的方法来探索模式。结果：参与者描述了各种护理路径调整，但也注意到其有限的有效性。主要的担忧是缺乏与个人需求的一致性。出现了三个需要改进的关键领域：(1)沟通和协调（例如，更清楚的指示、更长的预约、更好地了解需要）；(2)对家庭和照顾者的支持（例如，为照顾者量身定制调整，更清晰的解释）；(3)坚持同情和同理心（例如，避免行话，使用通俗易懂的语言，并确保患者感到被倾听）。结论：合理的调整是必要的，但不足以实现公平护理。与会者强调需要对个人需求采取综合办法，以确保调整既容易获得又有效。政策总结：对个人及其家庭照顾者需求的综合理解应该是医疗保健提供者进行合理调整的基础。实现这一目标的第一步是为医疗保健专业人员开展培训，使其对法律类别之外的合理调整有更广泛的理解。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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