Psychosocial Responses to being Identified as a Balanced Chromosomal Translocation Carrier: a Qualitative Investigation of Parents in Japan

Abstract

Undergoing chromosome analysis and receiving the results may have various psychosocial effects. To identify the impact on balanced translocation carriers identified through affected offspring, we conducted semi-structured interviews with eleven parents at Saitama Children's Medical Center. The results of the interviews were analyzed qualitatively by the KJ (Kawakita Jiro) method. Categories and subcategories of the various thoughts, emotions and responses experienced by balanced chromosomal translocation carriers were extracted. Participants' reactions were mixed, and appeared to be interrelated in some cases. Parents' reactions were sometimes ambivalent with regard to effects on reproductive issues and disclosure of test results. We recommend genetic counseling before and after carrier testing to help parents cope with the mixed and complex thoughts and feelings that arise upon being identified as a carrier.

“It was a lot Tougher than I Thought It would be”. A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier

“…In our study women also described the importance of informing their partners about the carrier status, and most of the women had experienced support from their partner in this regard. Positive support from a partner, as most of the participants in our study had, seems to be an important factor in mitigating negative feelings about carrier status (Kaneko et al 2015).…”

Exploring Attractiveness of the Basic Sciences for Female Physicians

“…Several Japanese qualitative studies have used this KJ method for analysis (Yamazaki et al 2010;Kaneko et al 2015). Briefly, we placed the respondents' descriptions onto cards, where the description on each card had only one meaning.…”

Ethical and professional challenges encountered by Japanese healthcare professionals who provide genetic counseling services

“…In Japan, there have been discussions about unfair treatment due to sharing of genetic information, such as social discrimination (Japan Times, 2017). Dealing with intrapersonal or individual feelings such as guilt, blame, stigma, or conflict is sometimes observed during genetic counseling (Clarke & Wallgren‐Pettersson, 2019; James, Hadley, Holtzman, & Winkelstein, 2006; Kaneko, Ohashi, Takamura, & Kawame, 2015). To deal with the emotional aspect of the patients’ and their family's response is one of the important roles played by genetic counseling professionals, and it is necessary to continue discussing challenges in dealing with the patients’ emotional responses.…”

“…Many anecdotes were included in the 'emotional responses' domain in this study. In a previous study, the challenges dealing with patients' issues, such as patients being blamed by family members or experiencing marital troubles, were noted (Veach et al, 2001 (Clarke & Wallgren-Pettersson, 2019;James, Hadley, Holtzman, & Winkelstein, 2006;Kaneko, Ohashi, Takamura, & Kawame, 2015). To deal with the emotional aspect of the patients' and their family's response is one of the important roles played by genetic counseling professionals, and it is necessary to continue discussing challenges in dealing with the patients' emotional responses.…”