Developing genetic counselling services in an underdeveloped healthcare setting

From Springer Nature via Jisc Publications RouterHistory: received 2021-05-07, accepted 2021-07-30, registration 2021-08-03, pub-electronic 2021-09-20, online 2021-09-20, pub-print 2021-10Publication status: PublishedAbstract: Genetic counselling services are well established in North America, Western Europe and Australia. In other regions, genetic counselling services are still emerging. Where this is the case, an in-depth understanding of the main stakeholders’ needs, challenges and opportunities will inform the changes and innovations required to bring genetic counselling closer to the community. The present study explored the needs and challenges of patients, family members and professionals with a view to setting up a cancer genetic counselling service in Romania. In order to get a comprehensive outlook, key stakeholders were interviewed using data source triangulation method. Thirty-four semi-structured interviews were conducted (13 patients, 11 family members and 10 professionals). Thematic analysis was used to explore and identify needs, barriers and opportunities in emerging cancer genetic counselling services. Three major themes were identified: (1) the “Needs” theme mainly focuses on various types of support that participants mentioned wanting: psychosocial, peer and additional support; (2) the “Challenges” theme includes aspects related to limited access to healthcare, lack of integrated services and pressure on the families; (3) the “Hopes” theme highlights the wish for integrated healthcare and an empathic rapport with healthcare providers. Our findings highlighted the main needs, challenges and hopes the patients, family members and professionals have and provides the groundwork for setting up cancer genetic counselling services