How can healthcare respond to the psychosocial needs and preferences of individuals with hereditary cancer syndromes? A qualitative study
| Autor: | Eliana Silva, Pedro Gomes, Paula M. Matos, Eunice R. Silva, João Silva, Catarina Brandão, Fernando Castro, Célia M. D. Sales |
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| Rok vydání: | 2022 |
| Předmět: | |
| DOI: | 10.5281/zenodo.5825527 |
| Popis: | Hereditary cancer syndromes are caused by inherited mutations that increase the risk of developing certain types of cancer. Mutation carriers for these syndromes usually have a long-term risk management process, which requires a responsive healthcare system. Nevertheless, there are few studies about the mutation carriers’ subjective experiences of care. The purposes of this qualitative study were to describe the individuals’ experiences of care and to identify their perceived psychosocial needs and preferences to improve healthcare responsiveness. We performed 13 interviews with individuals with one of the following hereditary cancer syndromes: Hereditary Breast and Ovarian Cancer Syndrome, Lynch Syndrome, Hereditary Diffuse Gastric Cancer Syndrome, or Familial Adenomatous Polyposis. The protocol interview was developed in collaboration with users with the first-hand experience of increased genetic risk of cancer and healthcare professionals. Four main themes emerged from the individuals’ reported experiences: (1) quality of clinical information; (2) clinical relationship; (3) psychological support, and (4) healthcare organization processes. For each theme, participants described their needs and preferences, the reasons behind, their feelings and behaviors concerning the unmet needs, and their attempts to address their concerns. To the best of our knowledge, this study was the first to provide insights into the psychosocial needs and preferences of individuals with several hereditary cancer syndromes along with cancer risk assessment, genetic counseling, and follow-up surveillance. Practice implications are discussed for improving aspects of care for these individuals that require long-term clinical surveillance. This work was funded by European COMPETE2020 (POCI-01-0145-FEDER-030980) and by Portuguese National funds FCT - Fundação para a Ciência e a Tecnologia, I.P (PTDC/PSI-ESP/30980/2017). |
| Databáze: | OpenAIRE |
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