Selin Siviş , Andrew Turner , Hannah Little , Shamim Kholwadia , Ruth Hendy , Fiona Spence , Gifty Markey , Jon Banks
{"title":"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。","authors":"Selin Siviş , Andrew Turner , Hannah Little , Shamim Kholwadia , Ruth Hendy , Fiona Spence , Gifty Markey , Jon Banks","doi":"10.1016/j.jcpo.2025.100641","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><div>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.</div></div><div><h3>Aim</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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).</div></div><div><h3>Conclusion</h3><div>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.</div></div><div><h3>Policy summary</h3><div>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.</div></div>","PeriodicalId":38212,"journal":{"name":"Journal of Cancer Policy","volume":"46 ","pages":"Article 100641"},"PeriodicalIF":2.0000,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Exploring experiences of reasonable adjustments in cancer care among patients with disabilities and their carers: A focus group study in South West England\",\"authors\":\"Selin Siviş , Andrew Turner , Hannah Little , Shamim Kholwadia , Ruth Hendy , Fiona Spence , Gifty Markey , Jon Banks\",\"doi\":\"10.1016/j.jcpo.2025.100641\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><div>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.</div></div><div><h3>Aim</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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).</div></div><div><h3>Conclusion</h3><div>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.</div></div><div><h3>Policy summary</h3><div>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.</div></div>\",\"PeriodicalId\":38212,\"journal\":{\"name\":\"Journal of Cancer Policy\",\"volume\":\"46 \",\"pages\":\"Article 100641\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-09-18\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Cancer Policy\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S2213538325000852\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH POLICY & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Cancer Policy","FirstCategoryId":"1085","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2213538325000852","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}
Exploring experiences of reasonable adjustments in cancer care among patients with disabilities and their carers: A focus group study in South West England
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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