Lautenbach Denise M, Hiraki Susan, Campion MaryAnn W, Austin Jehannine C
Masters Program in Genetic Counseling, Boston University School of Medicine, Boston, MA, USA.
J Genet Couns. 2012 Aug;21(4):564-72. doi: 10.1007/s10897-011-9420-7. Epub 2011 Nov 17.
To facilitate the development of a therapeutic alliance in genetic counseling, it is important that the counselor understands how families might perceive the condition that constitutes the reason for the referral. Through training and professional practice, genetic counselors develop a thorough understanding of families' perceptions of the conditions that are common indications for genetic counseling. But, for referral indications that are less frequent, like serious mental illnesses, genetic counselors may feel less confident in their understanding of the family's experience, or in their ability to provide psychosocial support when serious mental illness is reported in a family history. This may impede the establishment of a therapeutic alliance. As research shows that most referrals for genetic counseling related to serious mental illness are for female first-degree family members of affected individuals, we sought to explore how this group perceives serious mental illness. To provide a frame of reference with which genetic counselors may be more familiar, we explored how women perceived serious mental illness compared to other common complex disorders in their family. We conducted semi-structured interviews with women who had a child with a serious mental illness (schizophrenia, schizoaffective disorder, bipolar disorder) and a first-degree relative with another common complex disorder (diabetes, heart disease, cancer). Interviews were transcribed and subjected to thematic analysis. Saturation was reached when nine women had participated. Serious mental illness was perceived as being more severe and as having a greater impact on the family than diabetes, heart disease, or cancer. Themes identified included guilt, stigma, and loss. Some of the most important issues that contribute to mothers' perceptions that serious mental illness is more severe than other common complex disorders could be effectively addressed in genetic counseling. Developing a heightened awareness of how family members experience a relative's mental illness may help genetic counselors to be better able to provide psychosocial support to this group, whether serious mental illness constitutes the primary reason for referral or appears in the family history during counseling for a different referral reason.
为促进遗传咨询中治疗联盟的发展，遗传咨询师了解家庭对构成转诊原因的疾病的认知方式非常重要。通过培训和专业实践，遗传咨询师对家庭对常见遗传咨询指征疾病的认知有了深入了解。但是，对于诸如严重精神疾病等不太常见的转诊指征，遗传咨询师可能对自己理解家庭经历的能力缺乏信心，或者在家族病史中报告有严重精神疾病时，对自己提供心理社会支持的能力缺乏信心。这可能会阻碍治疗联盟的建立。由于研究表明，大多数与严重精神疾病相关的遗传咨询转诊是针对受影响个体的女性一级家庭成员，我们试图探讨这一群体如何看待严重精神疾病。为了提供一个遗传咨询师可能更熟悉的参照框架，我们探讨了女性如何将严重精神疾病与家庭中的其他常见复杂疾病进行比较。我们对有患有严重精神疾病（精神分裂症、分裂情感性障碍、双相情感障碍）孩子且有患有另一种常见复杂疾病（糖尿病、心脏病、癌症）的一级亲属的女性进行了半结构式访谈。访谈内容被转录并进行了主题分析。当有九名女性参与时达到了饱和状态。与糖尿病、心脏病或癌症相比，严重精神疾病被认为更严重，对家庭的影响更大。确定的主题包括内疚、耻辱和失落。在遗传咨询中，可以有效解决一些导致母亲认为严重精神疾病比其他常见复杂疾病更严重的最重要问题。提高对家庭成员如何经历亲属精神疾病的认识，可能有助于遗传咨询师更好地为这一群体提供心理社会支持，无论严重精神疾病是转诊的主要原因，还是在因不同转诊原因进行咨询时出现在家族病史中。
