Development and preliminary testing of the psychosocial adjustment to hereditary diseases scale

Background: The presence of Lynch syndrome (LS) can bring a lifetime of uncertainty to an entire family as members adjust to living with a high lifetime cancer risk. The research base on how individuals and families adjust to genetic-linked diseases following predictive genetic testing has increased our understanding of short-term impacts but gaps continue to exist in knowledge of important factors that facilitate or impede long-term adjustment. The failure of existing scales to detect psychosocial adjustment challenges in this population has led researchers to question the adequate sensitivity of these instruments. Furthermore, we have limited insight into the role of the family in promoting adjustment. Methods: The purpose of this study was to develop and initially validate the Psychosocial Adjustment to Hereditary Diseases (PAHD) scale. This scale consists of two subscales, the Burden of Knowing (BK) and Family Connectedness (FC). Items for the two subscales were generated from a qualitative data base and tested in a sample of 243 participants from families with LS. Results: The Multitrait/Multi-Item Analysis Program-Revised (MAP-R) was used to evaluate the psychometric properties of the PAHD. The findings support the convergent and discriminant validity of the subscales. Construct validity was confirmed by factor analysis and Cronbach’s alpha supported a strong internal consistency for BK (0.83) and FC (0.84). Conclusion: Preliminary testing suggests that the PAHD is a psychometrically sound scale capable of assessing psychosocial adjustment. We conclude that the PAHD may be a valuable monitoring tool to identify individuals and families who may require therapeutic interventions

Politicising Masculinities: Beyond the Personal

A diverse mix of people came together in Dakar, Senegal from 13-19 October 2007, to debate issues of men, gender and power: unconventional practical academics, open-minded policymakers, reflective practitioners and activists. It was a unique gathering and offered a unique opportunity – to inform and inspire a greater engagement by men in the struggle for gender justice and broader social change. The symposium was borne out of a realization that much of the most innovative work on men and masculinities has worked at the level of the personal, such as seeking to transform men’s sexual behaviour, violence against women and relations of fatherhood. The HIV epidemic has forced an open space for greater acknowledgement of the fluidity and diversity of men’s sexual and social identities. But relatively little of the innovative thinking and practice that has taken place in relation to these issues has been carried into other areas of development work. Masculine privilege remains unproblematised in mainstream development; and within gender and development the ‘men as problem, women as victim’ discourse continues to hold sway. Both rest on essentialisms that are rarely brought into question. At the same time, work on men and masculinities in development has arguably failed to engage sufficiently with core equity issues, whether in terms of equal pay and leave entitlements, representation in politics, parental rights and benefits, or domestic work, to change the institutions that sustain inequitable gender and sex orders. Amidst recognition that HIV prevention needs to go beyond individual behaviour change and that male violence is also a structural issue, the organisers felt it was time to move the debate beyond the personal to address questions of power and politics.Swedish International Development Cooperation Agency (Sida), the Norwegian Ministry of Foreign Affairs, the United Nations Population Fund (UNFPA), the Joint United Nations Programme on HIV/AIDS (UNAIDS), the UK Department for International Development (DFID), the Swiss Agency for Development and Cooperation (SDC) and the Ford Foundatio

Communication about hereditary cancer risk to offspring: a systematic review of children's perspective

Abstract Objective: The present review describes how children experience hereditary cancer risk communication within the family. Methods: Searches for studies between 1990 and 2020 on PubMed and EBSCO were undertaken, and 15 studies met the inclusion criteria, following Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. The findings informed: (1) how, when and what is discussed about hereditary cancer risk in the family; (2) how does family communication about hereditary cancer risk impact children on psychosocial and behavioral outcomes; (3) what are the child's preferences regarding hereditary cancer risk communication within the family. Results: Disclosure is done mostly by both parents, or mothers only, which is in accordance with the children's preferences. Children value open communication about cancer risk with their parents, although they report experiences of fear, surprise, feeling unhappy, and concern about the increased risk of cancer. Regardless of the method of disclosure, children may be particularly sensitive to their parent's emotional state at the time of disclosure, and they learn from their parents' experiences the potential implications of cancer risk. Children also report that it would be helpful to learn more about genetic cancer syndromes via written materials, and/or meet a genetic counselor. Conclusions: Children rely on their parents as the primary models of the hereditary cancer experience. Therefore, parents play a central role in the psychological adjustment of children. Findings point to the relevance of family‐centered care in hereditary cancer risk that targets not only the mutation carrier individually but also their children and partners

Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

The psychological impact of an unfavorable genetic test result for counselees at risk for hereditary cancer seems to be limited: only 10-20 % of counselees have psychological problems after testing positive for a known familial mutation. The objective of this study was to find prognostic factors that can predict which counselees are most likely to develop psychological problems after presymptomatic genetic testing. Counselees with a 50 % risk of BRCA1/2 or Lynch syndrome completed questionnaires at three time-points: after receiving a written invitation for a genetic counseling intake (T1), 2-3 days after receiving their DNA test result (T2), and 4-6 weeks later (T3). The psychological impact of the genetic test result was examined shortly and 4-6 weeks after learning their test result. Subsequently, the influence of various potentially prognostic factors on psychological impact were examined in the whole group. Data from 165 counselees were analyzed. Counselees with an unfavorable outcome did not have more emotional distress, but showed significantly more cancer worries 4-6 weeks after learning their test result. Prognostic factors for cancer worries after genetic testing were pre-existing cancer worries, being single, a high risk perception of getting cancer, and an unfavorable test result. Emotional distress was best predicted by pre-existing cancer worries and pre-existing emotional distress. The psychological impact of an unfavorable genetic test result appears considerable if it is measured as "worries about cancer." Genetic counselors should provide additional guidance to counselees with many cancer worries, emotional distress, a high risk perception or a weak social network