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Si us plau utilitzeu sempre aquest identificador per citar o enllaçar aquest document: https://hdl.handle.net/2445/215561
Living with Hereditary Cancer Syndromes: Bridging the knowledge gap for inclusive support and comprehensive follow-up
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[eng] BACKGROUND: Cancer is one of the leading causes of death worldwide. The most common cancers have a clear relationship with modifiable risk factors such as obesity, alcohol, and tobacco. But the biggest risk factor is having a hereditary cancer syndrome, which significantly increases the risk of cancer relative to the general population. In these individuals, more efforts are needed to decrease and control cancer risk. A personalised approach should consider all known risk factors, including lifestyles, rather than only focusing on early detection techniques. But lifestyles are not sufficiently addressed as a possible cancer risk reduction strategy.
Most behavioural interventions are short, focusing on diet and exercise and producing only short-term benefits that fail to promote broader health literacy or raise awareness of modifiable cancer risk factors. Healthcare professionals do not usually engage in interventions and education to increase health literacy around individual risk and possible actions to reduce it.
Nurses have a unique role in educating patients and their families/caregivers in cancer prevention and risk reduction strategies, which constitute a great opportunity to impact positively on people’s health and address cancer-related health literacy. However, nurses miss many valuable opportunities, as they are often unaware of proper risk assessment and risk communication strategies that could benefit patients. This need becomes more acute with hereditary cancer syndrome carriers, as cancer nurses perceive their knowledge around hereditary cancer syndromes as very low. Therefore, they need to acquire additional competencies, preferably within structured educational programmes based on the best evidence and most current professional guidance.
Numerous studies have looked at the attitudes and lifestyles of people affected by hereditary cancer syndromes, but there is little evidence of interventions focused on health promotion. Moreover, research shows that healthcare providers not working in genetics have knowledge gaps regarding cancer and genetics. While there are now ongoing projects to prepare and enhance cancer nurses’ knowledge on genetics and genomics, there are no current training programs available about cancer risk, whether inherited or acquired, or on communication and health promotion.
AIM: The overall aim of this doctoral thesis is to describe the needs of people living with
hereditary cancer syndromes and define cancer nurses’ educational needs for supporting them.
To this end, a set of OBJECTIVES were defined: (1) to identify which interventions are used to promote healthy lifestyles in people at risk of cancer, (2) to determine what knowledge is necessary for oncology nurses to understand and be able to help people with hereditary cancer syndromes understand their cancer risk and improve their health-related behaviours, and (3) to explore the experience of hereditary cancer syndrome carriers and their priorities and unmet needs during their diagnosis and follow-up.
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DÍEZ DE LOS RÍOS DE LA SERNA, Celia. Living with Hereditary Cancer Syndromes: Bridging the knowledge gap for inclusive support and comprehensive follow-up. [consulta: 2 de desembre de 2025]. [Disponible a: https://hdl.handle.net/2445/215561]