Seeing the Invisible Resiliency (STIR): Chronic Autoimmune Conditions and Post-Secondary Education Experiences in Young Adulthood

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-07-11 DOI:10.1111/hex.70332

Samantha A. Morin, Angelina Horta, Katelyn Greer, Parveen Priya Rai, Haley Gross, Raegan Reiter, Ingrid Nielssen, Marcia Bruce, Kim Giroux, Deborah A. Marshall

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Abstract

Introduction

Young adults with chronic autoimmune conditions face unique and often overlooked challenges in post-secondary education due to the invisible and unpredictable nature of these conditions. This patient-led qualitative study aims to further understand the experiences of young adults living with chronic autoimmune conditions while attending or considering attending post-secondary education.

Methods

The study followed the three-phase Patient and Community Engagement Research (PaCER) approach, a participatory framework that trains individuals with lived experience to lead all stages of research. In the first stage (SET), the protocol was co-designed with three external patient-partners. Study participants included young adults (18–35 years) with a chronic autoimmune condition for > 1 year who considered attending or attended a Canadian post-secondary school within the last 5 years and were recruited through social media. Data were collected (COLLECT) via focus group and interviews and then analysed using thematic and narrative analysis. Findings were shared back with study participants (REFLECT) for refinement and to inform recommendations.

Results

Ten young adults participated, and eight key themes were identified. Themes included the wide-ranging impacts of disease management, the value of peer and family support, protective and risk factors for success, limited awareness and education around chronic conditions, and sometimes-unconscious burden of navigating invisible conditions. Participants also reflected on their resilience and the shifting accessibility landscape during Covid-19, and offered detailed feedback on current gaps and needed support. Their recommendations underscored ongoing institutional shortcomings and the need for systemic change.

Conclusion

Our findings indicate that young adults living with chronic autoimmune conditions are not having their needs sufficiently met while navigating the post-secondary education system. It is imperative that changes and feedback provided by students with lived experience are implemented to ensure an accessible post-secondary education experience.

Patient or Public Contribution

Seven PaCER researchers, who identify as young adults with lived experience of chronic conditions, led the study design, data collection, analysis and manuscript preparation. This study was also co-designed with three external patient-partners who also identify as young adults with chronic conditions.

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看到看不见的弹性（STIR）：慢性自身免疫性疾病和青年的中学后教育经历

由于慢性自身免疫性疾病的不可见性和不可预测性，患有慢性自身免疫性疾病的年轻人在中学后教育中面临着独特且经常被忽视的挑战。这项以患者为主导的定性研究旨在进一步了解患有慢性自身免疫性疾病的年轻人在接受或考虑接受高等教育时的经历。方法本研究采用患者和社区参与研究（PaCER）三阶段方法，这是一种参与式框架，旨在培养具有实际经验的个人领导所有阶段的研究。在第一阶段（SET），该方案与三个外部患者合作伙伴共同设计。研究参与者包括患有慢性自身免疫性疾病1年的年轻人（18-35岁），他们在过去5年内考虑参加或参加过加拿大的高等教育，并通过社交媒体招募。通过焦点小组和访谈收集数据，然后使用主题和叙事分析进行分析。研究结果与研究参与者（REFLECT）分享，以进行改进并提供建议。结果10名年轻人参与，确定了8个关键主题。主题包括疾病管理的广泛影响、同伴和家庭支持的价值、成功的保护和风险因素、对慢性病的有限认识和教育，以及有时无意识地应对无形疾病的负担。与会者还反思了他们在2019冠状病毒病期间的韧性和不断变化的可及性格局，并就当前的差距和所需的支持提供了详细反馈。他们的建议强调了目前的体制缺陷和进行系统性改革的必要性。结论：我们的研究结果表明，患有慢性自身免疫性疾病的年轻人在接受高等教育时，他们的需求没有得到充分满足。有生活经验的学生提供的改变和反馈是必要的，以确保获得高等教育体验。7名PaCER研究人员，他们被认为是有慢性疾病生活经历的年轻人，领导了研究的设计、数据收集、分析和手稿准备。该研究还与三位外部患者合作设计，他们也被认为是患有慢性疾病的年轻成年人。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.