Dataset Information

Decision making and experiences of young adults undergoing presymptomatic genetic testing for familial cancer: a longitudinal grounded theory study.

ABSTRACT: Enabling informed choice is an essential component of care when offering young adults presymptomatic testing for a genetic condition. A systematic review on this topic revealed that many young adults grew up with little information regarding their genetic risk and that parents had applied pressure to them during the testing decision-making process. However, none of the studies retrieved were conducted in South European countries. To address this gap, we undertook a qualitative study based on grounded theory to explore the psychosocial implications of presymptomatic testing for hereditary cancer in Italian young adults aged 18-30 years. Interviews were conducted on three occasions: 1 month before counselling, and 2 weeks and 6 months after results. Data were coded and grouped under themes. A total of 42 interviews were conducted. Four themes emerged: knowledge, genetic counselling process, decision making and dealing with test results. Although participants grew up with little or no information about their genetic risk, none expressed regret at having the test at a young age. Pre-test counselling was appreciated as a source of information, rather than support for decision making. Decisions were often made autonomously and sometimes conflicted with parents' wishes. Participants reported no changes in health behaviours after testing. This evidence highlights the need for a comprehensive, longitudinal counselling process with appropriate timing and setting, which supports 'parent-to-offspring' risk communication first and decision making by young adults about presymptomatic testing and risk management afterwards. In conclusion, it is clear that counselling approaches for presymptomatic testing may require modification both for young adults and their parents.

SUBMITTER: Godino L

PROVIDER: S-EPMC5839040 | biostudies-literature | 2018 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Decision making and experiences of young adults undergoing presymptomatic genetic testing for familial cancer: a longitudinal grounded theory study.

Godino Lea L Jackson Leigh L Turchetti Daniela D Hennessy Catherine C Skirton Heather H

European journal of human genetics : EJHG 20171121 1

Enabling informed choice is an essential component of care when offering young adults presymptomatic testing for a genetic condition. A systematic review on this topic revealed that many young adults grew up with little information regarding their genetic risk and that parents had applied pressure to them during the testing decision-making process. However, none of the studies retrieved were conducted in South European countries. To address this gap, we undertook a qualitative study based on gro ...[more]

PMID: 29162934

Similar Datasets

Project description:BackgroundMenarche, the first menstruation, is a significant developmental milestone for females. In Papua New Guinea (PNG), menarche is an important socio-cultural event marking transition from girlhood to womanhood. PNG is a culturally and linguistically diverse nation, with wide-ranging socio-cultural beliefs and practices around menarche. This study explored post-menarcheal women's understanding about body changes and menarche, preparation for menarche, and related cultural beliefs and practices at menarche.MethodsA constructivist grounded theory study was conducted with 98 female participants who originated from four PNG provinces: Eastern Highlands Province; East Sepik Province; Milne Bay Province; and National Capital District. The participants were purposively and theoretically sampled, with 10 focus group discussions and six individual interviews conducted using a semi-structured interview guide for data collection. Focus group discussions and interviews were voice recorded and transcribed. Data were inductively analyzed using initial, intermediate and advanced coding, memos and constant comparative methods to develop a theoretical model that explains women's experiences at menarche. Interview participants also identified actions required to improve future experiences of girls at menarche in PNG.ResultsA grounded theory comprising the core category of 'Making of a Strong Woman' and four interconnecting categories ('Having Baby Sense'; 'Beginning of Learning'; 'Intensifying Learning'; and 'Achieving Womanhood') was constructed. 'Urban' and 'Rural' represented both geographical and socio-cultural intervening conditions that influence the experiences of girls at menarche. Experiences of young women at menarche were rooted in socio-cultural beliefs and practices. Women reported being physically and emotionally distressed and unprepared at onset of menarche. Mothers were considered important support, however, their ability to adequately prepare their daughters is limited by shame and secrecy. Despite these limitations, cultural practices at menarche provided an opportunity for intensive preparation of girls for womanhood.ConclusionLimited pre-menarcheal awareness of the meaning of body changes and menarche of girls was linked to culture of shame and secrecy about open discussion on sexuality. However, traditional cultural practices provide an opportunity for collective support and focused learning for girls. Findings from this study have implications for broader sexual and reproductive health education programs in addressing menstrual health and hygiene in PNG, and the Pacific.

Project description:IntroductionThe participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research.MethodsWe used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels.ResultsThe GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research.ConclusionsThe key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social environments and research support.

Dataset Information

Decision making and experiences of young adults undergoing presymptomatic genetic testing for familial cancer: a longitudinal grounded theory study.

Publications

Decision making and experiences of young adults undergoing presymptomatic genetic testing for familial cancer: a longitudinal grounded theory study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets