Mutation Carriers' Perspectives on Lynch Syndrome; self-concept and lived experiences.

Lynch syndrome is a hereditary cancer syndrome that predisposes to several types of cancer, including colorectal cancer, endometrial cancer and ovarian cancer. Genetic testing for Lynch syndrome has been available since the mid-1990’s, which implies that an increasing number of individuals live with knowledge of a high risk of cancer. Most individuals affected by Lynch syndrome experience increased levels of e.g. anxiety and distress after having learnt about a disease-predisposing mutation. In the majority of the individuals, the scores return to normal within 12 months. A smaller subset reports remaining high scores, which may indicate a need for psychosocial support. Global measures of may have a limited possibility to capture the psychological and social issues specifically associated with genetic testing and life at increased risk of cancer. This motivates our evaluation and application of more specific instruments related to the psychological impact from Lynch syndrome and our study of perspectives among healthy individuals at increased risk.In study I, we evaluated the structure of the Lynch syndrome self-concept scale and its performance in three Lynch syndrome populations. The findings support the basic structure of the scale and its applicability in western populations.Study II provides the first extended use of the Lynch syndrome self-concept scale through data collection from the entire Danish Lynch syndrome cohort. The results suggest that mutation carriers adapt well to the situation, though a subset reports adverse scores with a higher impact on self-concept. In study III, sense of coherence (SOC) was assessed in individuals with Lynch syndrome and the data were correlated to self-concept. SOC scores in mutation carriers were similar to those in a general population. In the majority (76%), SOC and self-concept were in accordance. Discrepant subsets were identified, which likely reflects different aspects of finding life at increased risk difficult. Adverse scores on both scales, i.e. a low SOC and a high impact on self-concept, were reported by 10% of the individuals. In study IV, the lived experiences among healthy mutation carriers in Lynch syndrome families were explored. The findings suggest that living with a high risk of cancer constitutes an act of balance, in which personal interpretation and family experiences combined with knowledge, contribute to how the individuals approach life at increased risk of cancer

Balancing Life with an Increased Risk of Cancer:Lived Experiences in Healthy Individuals with Lynch Syndrome

Possibilities to undergo predictive genetic testing for cancer have expanded, which implies that an increasing number of healthy individuals will learn about cancer predisposition. Knowledge about how an increased risk of disease influences life in a long-term perspective is largely unknown, which led us to explore lived experiences in healthy mutation carriers with Lynch syndrome. Individual interviews were subjected to descriptive phenomenological analysis. Four constitutions, namely, family context, interpretation and transformation, approach to risk and balancing life at risk were identified and formed the essence of the phenomenon "living with knowledge about risk." Family context influences how experiences and knowledge are interpreted and transformed into thoughts and feelings, which relates to how risk is approached and handled. The constitutions influence each other in a dynamic relationship and create a balancing act between anxiety and worry and feelings of being safe and in control

Sense of coherence and self-concept in Lynch syndrome

OBJECTIVE: Most individuals who learn about hereditary cancer manage well, but identification of subgroups who find this knowledge burdening would allow psychosocial intervention. The objective of the study was to assess sense of coherence (SOC) in individuals with Lynch syndrome with comparison to a general population and correlation to self-concept. METHODS: A total of 345 individuals with Lynch syndrome completed the 13-item SOC scale and the 20-item Lynch syndrome self-concept scale. SOC scores were compared to a general Danish population and were correlated to self-concept estimates in individuals with Lynch syndrome. Characteristics of subgroups with adverse scores were described. RESULTS: Individuals with Lynch syndrome reported SOC scores similar to the general population. SOC and self-concept correlated well with a correlation coefficient of −0.51. Subsets with convergent and divergent scores, which may reflect different effects from knowledge about hereditary cancer, were identified. CONCLUSION: Individuals with Lynch syndrome report SOC scores similar to the general population. SOC and self-concept correlate well but allow identification of subset who report adverse outcome and may be relevant for targeted intervention

Stuck in tradition‐A qualitative study on barriers for implementation of evidence‐based nutritional care perceived by nursing staff

Aims and objectives: To explore the barriers for nutritional care as perceived by nursing staff at an acute orthopaedic ward, aiming to implement evidence-based nutritional care. Background: Previous studies indicate that nurses recognise nutritional care as important, but interventions are often lacking. These studies show that a range of barriers influence the attempt to optimise nutritional care. Before the implementation of evidence-based nutritional care, we examined barriers for nutritional care among the nursing staff. Design: Qualitative study. Methods: Four focus groups with thirteen members of the nursing staff were interviewed between October 2013-June 2014. The interview guide was designed according to the Theoretical Domains Framework. The interviews were analysed using qualitative content analysis. Results: Three main categories emerged: lacking common practice, failing to initiate treatment and struggling with existing resources. The nursing staff was lacking both knowledge and common practice regarding nutritional care. They felt they protected patient autonomy by accepting patient's reluctance to eat or getting a feeding tube. The lack of nutritional focus from doctors decreased the nursing staffs focus leading to nonoptimal nutritional treatment. Competing priorities, physical setting and limited nutritional supplements were believed to hinder nutritional care. Conclusion: The results suggest that nutritional care is in a transitional state from experience- to evidence-based practice. Barriers for nutritional care are grounded in lack of knowledge among nursing staff and insufficient collaboration between nursing staff and the doctors. There is a need for nutritional education for the nursing staff and better support from the organisation to help nursing staff provide evidence-based nutritional care. Relevance to clinical practice: This study contributes with valuable knowledge before the implementation of evidence-based nutritional care. The study provides an understanding of barriers for nutritional care and presents explanations to why nutritional care has failed to become an integrated part of the daily treatment and care