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Truth-telling and Turner Syndrome: The Importance of Diagnostic Disclosure« Back to Volume 22, Issue 2, June 2006 - Table of Contents Noting the paradigm shift away from a paternalistic model of healthcare toward one favoring patient autonomy, shared decision-making, and open disclosure of health-related information, Sutton and colleagues were surprised to find that a significant number of participants in their qualitative study of social, psychological, and medical concerns of individuals with Turner syndrome (TS), spontaneously reported that some aspects of their condition had been kept secret from them. Participants consisted of 97 girls and women with TS and 21 parents. Demographic and other background characteristics included: age range 7 to 59 years; mean age at diagnosis 12.8 years; mean adult height 4’9”; 26% had been treated with growth hormone; 84% of those between ages 20 and 59 had an undergraduate or graduate degree. Of those 18 years or older, 32% were married and 15% were divorced. Six women had children, 5 through adoption and 1 through in vitro fertilization. Participants were asked open-ended questions in the context of a 60 to 90-minute semi-structured in-person interview. Although the study was not originally intended to focus on non-disclosure/secret-keeping, researchers found that secret-keeping concerns were common; a secondary analysis was performed in which transcripts were reanalyzed and coded for secret-keeping and family health communication factors. Secret-keeping was defined as “all or part of the TS diagnosis deliberately withheld from the participant.” Thirty of 97 participants with TS spontaneously mentioned that secrets about their diagnosis were kept from them by their parents and healthcare professionals (HCPs); parents were identified as being responsible for the lack of disclosure in 13 of 30 cases. In 15 of 30 cases, information about infertility was withheld; 11 did not know they had a chromosomal condition; 3 did not know the clinical term for their condition; 1 reported she was not told about potential difficulties with sexual intercourse despite requests for information on this topic. Three parents of children with TS (ages 7, 10, and 13 years) reported they had not yet informed their daughters of fertility problems. Participants described the effects of secret-keeping unfavorably, noting that they learned of their diagnoses unexpectedly (eg, overhearing others’ conversations or from comments by HCPs who assumed the girl/woman already knew about her diagnosis). Twelve of 17 who commented on their reactions to discovering that a secret about their health had been kept from them reported feeling angry or upset; others felt their family betrayed them; still others lost trust in their families. Reasons given for parental secret-keeping included: feeling they were not fully informed about their daughter’s condition and ill-equipped to handle questions from their daughter, needing time to adjust to their daughter’s diagnosis before telling her, and wanting to “protect” their daughter from “the heartbreak of infertility” and associated stigma. Many participants (47 of 97) rated disclosures by HCPs negatively; those from whom secrets were kept rated disclosures by HCPs more negatively than those who did not mention secrets were kept. Based on their findings, Sutton and colleagues concluded that failure to disclose health information to patients is problematic. They offered 10 very useful guidelines regarding disclosure, including: discuss with parents how feedback from testing is to be conveyed to their children and during diagnostic testing, discuss with patients and parents how much information they would like to know. Editor’s CommentWhile it is preferred that research is designed to test a priori hypothesis, the reanalysis in this study of spontaneous reports of problems engendered by secrets raises important points. The magnitude of the problem is suggested by the fact that these investigators did not specifically ask about situations of secret-keeping; reports of its occurrence in this study are therefore likely an underestimate of its incidence. Sutton and colleagues’ recommendations regarding disclosure stemmed from participant remarks during the interviews and a literature review. They offer sensible and practical suggestions toward preventing psychosocial problems through disclosure. To the extent that the findings of this study can be replicated in an independent sample employing an assessment protocol that more directly examines the issue of secret-keeping, then their implications most likely extend far beyond TS. Attempts to “protect” the child can backfire when patients learn on their own or from a stranger. Individuals with disorders of sex development (ie, intersexuality) report that the shroud of secrecy surrounding their condition was harder to adjust to than the medical features of the condition and its treatment.1,2 The sense of “betrayal” by HCPs and family members can also reduce their value as sources of information and support. The gravity of this issue for individuals with chronic conditions requiring lifelong medical care underscores the importance of having a team member who is experienced in emotional reactions to “bad news” and equipped to educate the parents on strategies toward informing the child.3 Such disclosure involves not only the factual information about the medical condition but also the social and emotional implications. Given current constraints on the time of physicians and insurmountable barriers associated with reimbursement for such counseling of families and patients, it is more important than ever that a team approach be adopted in which a qualified mental health specialist is an integral member. This team member would be available to parents and to the child to provide on-going support to address inevitable questions and concerns and to provide the parents with the skills to deliver developmentally appropriate education to the child regarding his/her condition and treatment. David E. Sandberg, PhD References - (linked to
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Volume 24 Number 1
May 2008
www.GGHjournal.com
ISSN 1932-9032
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