A Systematized review of experiences of individuals in Arnett’s emerging adulthood stage who live with or are at‐risk for genetic conditions

Abstract

Emerging adulthood, a distinct developmental period between ages 18 and 29 years, comprises five features: identity exploration, experimentation/possibilities, negativity/instability regarding one's outlook, self-focus, and feeling in-between adolescence and adulthood. A growing literature examines the impact of genetic conditions on individuals who chronologically fit the emerging adulthood period. This systematized literature review uses the emerging adulthood theory to determine whether individuals living with or at-risk for a genetic condition experience the features of this period as well as similarities and differences between these two groups. A literature search yielded 1,303 peer-reviewed papers from the 17 years since emerging adulthood theory was published. Ten papers met inclusion criteria-five for those Living With a genetic condition (e.g., cystic fibrosis) and five for those At-Risk for a genetic condition (e.g., hereditary breast and ovarian cancer). Content analysis yielded themes consistent with the five emerging adulthood features for both individuals Living With and At-Risk for genetic conditions. Negativity/instability was most prevalent, and feeling in-between was least prevalent in both groups. Results further suggest unique challenges related to one's genetic conditions/risk with respect to independence (from family, healthcare providers), career/education, relationships/social life, family planning, and life perspective experiences. Salient differences were apparent between the groups in their experiences of the emerging adulthood features. For instance, Living With individuals reported challenges concerning their ongoing physical symptoms, whereas At-Risk individuals reported challenges regarding genetic testing decisions and anticipation of physical symptoms. Thus, emerging adults Living With and At-Risk for genetic conditions appear to experience the main emerging adulthood features, but they face unique challenges related to their genetic conditions/ risk. Understanding emerging adults' experiences can aid genetic counselors in addressing their specific concerns.

Self-Management of Long-Term Physical Conditions During Emerging Adulthood: A Systematic Review

“…The age of instability brings numerous life transitions, as emerging adults are transitioning to college or the workplace, moving out of home and expanding social and support networks (Wiebe et al, 2016). Previous research has found that during this period emerging adults have many competing priorities (Audulv et al, 2009) and those living with LTPC need to consider and be cautious of their social environment and balance it with their treatment regime (Shelley et al, 2020). The findings of this review highlight that emerging adults living with LTPC also have many life transitions and that these transitions and new schedules (e.g., college, work, moving out of home), can have a negative effect on the ability to carry out self-management tasks (e.g., taking medication, eating habits, rest and exercise) (Ersig, 2019;Johnson & Annesi, 2018;Saylor et al, 2019Saylor et al, , 2022.…”

“…Emerging adulthood is a period during which emerging adults are exploring and expanding their networks beyond the family (Hopmeyer et al, 2022; Wiebe et al, 2016). Previous research has highlighted that in addition to being important for the transition to adulthood, navigating shifting interpersonal influences and changes to support systems (e.g., familial support) is also important for the self-management of LTPC during emerging adulthood (Rasalingam et al, 2021; Shelley et al, 2020; Wentzell et al, 2020). This review provides support for this in highlighting the changes in support systems (e.g., college peers) and how relationships, especially family, can act either as a facilitator or as a barrier to self-management.…”

“…In terms of issues relevant to self-management, they found that changes to personal and professional support networks were a challenge for emerging adults and this contributed to diabetes distress. Shelley et al (2020) examined how emerging adults living with and at risk of genetic conditions experience the five features of emerging adulthood. They found five themes; independence, education/career/employment, relationships/social life, family planning and life perspective.…”

“…Three recent review papers on emerging adults living with LTPC have highlighted the importance of considering self-management within emerging adulthood (Rasalingam et al, 2021; Shelley et al, 2020; Wentzell et al, 2020), however, none focused solely on self-management. Wentzell et al, (2020) examined how challenges or transitions during emerging adulthood added to the understanding of diabetes distress.…”

Factors that influence the intent to pursue a master’s degree: evidence from Shandong Province, China

“…It is worth noting that, college students are in the exploration stage of their career (Super, 1980), and the uncertainty of identity exploration can easily lead to confusion and pressure (Shelley et al, 2020). Data from the 2022 White Paper on Learning and Development of Chinese College Students show that "confusion about the future" accounts for the largest proportion of the growing pain points of college students.…”