Golubović Špela, Simin Dragana, Vuković Vladimir, Demirović Semra, Milutinović Dragana
Department of Special Education and Rehabilitation, Faculty of Medicine, University of Novi Sad, 21000 Novi Sad, Serbia.
Department of Nursing, Faculty of Medicine, University of Novi Sad, 21000 Novi Sad, Serbia.
Healthcare (Basel). 2024 Dec 6;12(23):2463. doi: 10.3390/healthcare12232463.
Cancer prevention is a crucial public health strategy, with 30-50% of cancers being preventable through early screening and lifestyle modifications. However, people with intellectual disabilities (PWID) face significant barriers to cancer prevention services, leading to delayed diagnoses and poorer outcomes. Family caregivers play a key role in bridging the healthcare access gaps for PWID, but there is limited research exploring their perspectives on cancer prevention. This study examined the needs, challenges, and strategies family caregivers employ in cancer prevention for PWID, framed within Bronfenbrenner's ecological systems theory. A mixed methods sequential explanatory design was used. Quantitative data were collected through a structured questionnaire from 41 caregivers of PWID, followed by qualitative semi-structured interviews with 15 caregivers to explore the quantitative findings further. Data were analysed using descriptive statistics, chi-square tests, and thematic content analysis. The study revealed that 75.6% of caregivers had not received information about cancer prevention for PWID, and 63.4% did not regularly coordinate cancer screenings. Barriers identified included a lack of accessible information, logistical challenges, and emotional strain. However, 80.5% of caregivers expressed a need for additional training to support their roles in cancer prevention. Qualitative findings highlighted four key themes: promoting a healthy lifestyle, access to healthcare services, health literacy, and psychosocial support. The findings emphasise the need for tailored cancer prevention strategies and educational resources for caregivers of PWID. Addressing these gaps requires systemic changes in healthcare practices, better coordination of services, and enhanced support for caregivers to reduce the barriers to cancer prevention for PWID.
癌症预防是一项至关重要的公共卫生策略，30%-50%的癌症可通过早期筛查和生活方式改变得以预防。然而，智障人士在获得癌症预防服务方面面临重大障碍，导致诊断延迟和预后较差。家庭照顾者在弥合智障人士医疗服务获取差距方面发挥着关键作用，但探索他们对癌症预防看法的研究有限。本研究以布朗芬布伦纳的生态系统理论为框架，考察了家庭照顾者在智障人士癌症预防中所采用的需求、挑战和策略。研究采用了混合方法序列解释性设计。通过结构化问卷收集了41名智障人士照顾者的定量数据，随后对15名照顾者进行了定性半结构化访谈，以进一步探究定量研究结果。使用描述性统计、卡方检验和主题内容分析对数据进行了分析。研究发现，75.6%的照顾者未收到有关智障人士癌症预防的信息，63.4%的照顾者未定期协调癌症筛查。所确定的障碍包括缺乏可获取的信息、后勤挑战和情感压力。然而，80.5%的照顾者表示需要额外培训以支持他们在癌症预防中的角色。定性研究结果突出了四个关键主题：促进健康生活方式、获得医疗服务、健康素养和心理社会支持。研究结果强调需要为智障人士照顾者制定量身定制的癌症预防策略和教育资源。解决这些差距需要医疗实践中的系统性变革、更好的服务协调以及对照顾者的更多支持，以减少智障人士癌症预防的障碍。
