Genetic Testing and Post-Testing Decision Making among <Emphasis Type="Italic">BRCA</Emphasis>-Positive Mutation Women: A Psychosocial Approach

Through an analysis of an online survey of women who tested positive for the BRCA genetic mutation for breast cancer, this research uses a social constructionist and feminist standpoint lens to understand the decision-making process that leads BRCA-positive women to choose genetic testing. Additionally, this research examines how they socially construct and understand their risk for developing breast cancer, as well as which treatment options they undergo post-testing. BRCA-positive women re-frame their statistical medical risk for developing cancer and their post-testing treatment choices through a broad psychosocial context of engagement that also includes their social networks. Important psychosocial factors drive women’s medical decisions, such as individual feelings of guilt and vulnerability, and the degree of perceived social support. Women who felt guilty and fearful that they might pass the BRCA gene to their children were more likely to undergo risk reducing surgery. Women with at least one daughter and women without children were more inclined toward the risk reducing surgery compared to those with only sons. These psychosocial factors and social network engagements serve as a “nexus of decision making” that does not, for the most part, mirror the medical assessments of statistical odds for hereditary cancer development, nor the specific treatment protocols outlined by the medical establishment.     

The Influence of Attentional Style and Risk Perceptions on Intentions to Undergo Prophylactic Oophorectomy Among First-Degree Relatives

This study examined the predictors of women's intentions to undergo prophylactic oophorectomy. Eighty female first-degree relatives (FDRs) of ovarian cancer patients completed a measure of attentional style upon enrollment into a Family Risk Assessment Program. Following participation, measures of cancer risk perceptions, perceived benefits and costs of surgery, and intentions to undergo preventive surgery were obtained. Hierarchical regression analyses indicated that a high monitoring attentional style, as well as greater perceived risk of ovarian cancer and greater perceived benefits of the procedure, was associated with greater intentions to undergo prophylactic oophorectomy. In addition, a significant interaction between attentional style and perceived risk revealed that high monitors who felt at increased risk for ovarian cancer were less inclined to undergo surgery, whereas low monitors who perceived themselves to be at increased risk were more inclined to undergo surgery. The implications of the results for the design of counseling interventions are discussed.     

Have You Ever Googled a Patient or Been Friended by a Patient? Social Media Intersects the Practice of Genetic Counseling

Patients and healthcare providers are becoming increasingly connected via social media, bringing new opportunities and challenges. Direct connection can occur between patients and providers using online tools such as Facebook and LinkedIn. In addition, providers can gather information about patients using a search engine such as Google, referred to as patient-targeted Googling (PTG). An online 54-item survey was used to gain information on (1) how and to what extent genetic counseling students and genetic counselors connect directly with patients via social media sites, and (2) gather information on providers using PTG. Four hundred genetic counseling students and genetic counselors participated in the survey. The majority of respondents (88.9%; n?=?344/387) find it is never or rarely acceptable to interact with current patients via social media sites; however, 27.7% (n?=?110/397) have visited a patient’s social media site. Gathering information for patient care was the most commonly reported reason (76.8%; n?=?43/56). Thirty-three percent (n?=?130/394) have considered searching online or actually searched online for information about a patient. Curiosity was the most common reason (92.7%; n?=?114/123); although, respondents also used PTG to obtain contact information and to prepare for patient sessions. Our study supports the need for development and dissemination of professional guidelines to serve as a valuable resource for practicing genetic counselors and genetic counseling training programs.     

Genetic Counselors’ Perceived Responsibilities Regarding Reproductive Issues for Patients at Risk for Huntington Disease

Research indicates that health care professionals’ attitudes may affect patients’ decisions regarding prenatal Huntington Disease testing, but few studies have sampled genetic counselors. In this qualitative study, genetic counselors described their experiences counseling individuals at risk for HD regarding reproductive decision-making. Five major research questions were investigated: 1) What are genetic counselor responsibilities? 2) What issues arise for patients and counselors? 3) How do counselors reconcile prenatal testing with presymptomatic testing? 4) To what extent are counselors’ initial expectations of at-risk patients’ beliefs and behaviors met? and 5) What advice would counselors offer to novice practitioners about working with this patient population? Fifteen genetic counselors experienced in counseling individuals at risk for HD participated in a semi-structured phone interview that yielded several themes. For example, participants identified their primary responsibility as information provision; less prevalent were psychosocial support and facilitating decision making. The most common ethical challenge was testing prenatally for HD which also results in presymptomatic testing of minors. Participants were divided about how directive to be in response to this ethical issue and about termination of a gene positive pregnancy.     

Sense of Coherence (SOC) in Christian Orthodox Monks and Nuns in Greece

This paper aims to investigate the stress management skills of Christian Orthodox monks and nuns, as measured by Antonovsky’s scale sense of coherence (SOC). A case–control study was designed to test the hypotheses whether monks and nuns have higher SOC than secular people. The study population consisted of 193 individuals, 96 monks and nuns (study group) and 97 secular men and women (control group). SOC score was higher in monks and nuns as compared to the secular population (p = 0.002), men as compared to women (p = 0.012) and persons of older age (p = 0.004) as compared to younger individuals.     

Utilization of Genetic Testing for <Emphasis Type="Italic">RET</Emphasis> Mutations in Patients with Medullary Thyroid Carcinoma: a Single-Center Experience

Medullary thyroid carcinoma (MTC) is often due to the hereditary condition multiple endocrine neoplasia type 2 (MEN2) and it is standard of care to offer genetic testing to all diagnosed patients. This study used the Kaiser Permanente integrated medical record system to identify patients at risk for MEN2, assess adherence to clinical practice guidelines, and offer genetic counseling and testing. A query of the electronic medical records system identified patients with MTC. All patients with MTC who had not had RET gene testing, as well as patients who had positive RET gene testing, but had not yet had genetic counseling, were contacted and offered a genetics consultation. The query identified 142 patients with MTC. Fifty-six (40%) of those patients had not had the RET testing that all endocrine professional groups recommend. Forty-nine patients were eligible for the outreach, and, from this, 14 patients were scheduled for genetic counseling. Of the 94 individuals at our institution who had RET genetic testing, 25 (27%) were positive for a mutation. Of the 82 apparently sporadic cases, 13 (16%) carried a RET mutation. A family history of endocrine cancer and younger age at diagnosis significantly increased the risk carrying a RET mutation. However, approximately half of RET-positive patients did not have a significant family history of cancer and one-third were over age 50 at diagnosis. This study concludes that a significant proportion of patients with MTC are not receiving standard of care genetic testing and reinforces previous research that sporadic-appearing cases of MTC are often, in fact, hereditary.     

A Longitudinal Investigation of Posttraumatic Growth in Adult Patients Undergoing Treatment for Acute Leukemia

An acute leukemia diagnosis can be an extremely stressful experience for most patients. Posttraumatic growth (PTG) is positive psychological change experienced following a struggle with highly challenging life circumstances. The current study is the first longitudinal investigation of predictors of PTG and distress in adult acute leukemia patients undergoing induction chemotherapy. Findings suggest that these patients report PTG, and levels of PTG appear to increase over the weeks following leukemia diagnosis and induction chemotherapy. Variables associated with higher total PTG scores over time included greater number of days from baseline, younger age, and greater challenge to core beliefs. Variables associated with higher distress included greater number of days from baseline, greater perceived cancer threat, higher symptom severity, and lower spiritual well-being. Results underscore the critical role that examination of one’s core beliefs may play in the development of PTG over time.     

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified: control, striving for normality and acceptance of PKU as a continuum. Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent’s experiences. Clinical implications and suggestions for further research are discussed.     

Psychosocial factors in heart surgery: presurgical vulnerability and postsurgical recovery

OBJECTIVE: Distress and low perceived social support were examined as indicators of psychosocial vulnerability in patients about to undergo heart surgery. Design: A total of 550 study patients underwent heart surgeries, including bypass grafting and valve procedures. Psychosocial interviews were conducted about five days before surgery, and biomedical data were obtained from hospital records. MAIN OUTCOME MEASURES: Sociodemographic, personality, religious, and biomedical factors were evaluated as predictors of psychosocial vulnerability, and all five sets of variables were evaluated as contributors to hospital length of stay (LOS). RESULTS: Patients scoring higher on one or more indicator of presurgical psychosocial vulnerability were younger, more likely to be female, less likely to be married, less well educated, lower in dispositional optimism, higher in trait anger, and lower in religiousness. Older age, depression, low support, and low trait anger each showed an independent, prospective association with greater LOS, and several other predictors had prospective relationships with LOS that were statistically mediated by depression or perceived support. CONCLUSION: Evidence that multiple psychosocial factors may influence adaptation to heart surgery has implications for understanding and ameliorating presurgical distress and for improving postsurgical recovery.     

Risk-Reduction Surgery Decisions in High-Risk Women Seen for Genetic Counseling

Women at greatest risk for hereditary breast and ovarian cancer may consider prophylactic removal of breasts or ovaries as a risk-reduction measure. This report describes uptake of risk-reduction mastectomy (RRM), risk-reduction oophorectomy (RRO), and related factors in 62 high-risk women who received genetic counseling. Seven (11%) participants underwent RRM and 13 (21%) underwent RRO. Of these women, 37% did not have BRCA testing, suggesting other factors influence decisions to undergo surgery. Women who had indicated (pre-genetic counseling) their intent not to have surgery chose not to have surgery. Information received during genetic counseling that women perceived as being most important for influencing risk-reduction surgery decisions was BRCA test result (positive or negative), followed by discussion of family cancer history. Reasons for indecision about risk-reduction surgery included genetic testing results, concerns about surgery, timing in life, and early menopause. The findings enhance our understanding of information that is helpful to women considering this surgery.     

Patients’ Views of Treatment-Focused Genetic Testing (TFGT): Some Lessons for the Mainstreaming of <Emphasis Type="Italic">BRCA1</Emphasis> and <Emphasis Type="Italic">BRCA2</Emphasis> Testing

This paper explores patients’ views and experiences of undergoing treatment-focused BRCA1 and BRCA2 genetic testing (TFGT), either offered following triaging to clinical genetics (breast cancer) or as part of a mainstreamed care pathway in oncology (ovarian cancer). Drawing on 26 in-depth interviews with patients with breast or ovarian cancer who had undergone TFGT, this retrospective study examines patients’ views of genetic testing at this point in their care pathway, focusing on issues, such as initial response to the offer of testing, motivations for undergoing testing, and views on care pathways. Patients were amenable to the incorporation of TFGT at an early stage in their cancer care irrespective of (any) prior anticipation of having a genetic test or family history. While patients were glad to have been offered TFGT as part of their care, some questioned the logic of the test’s timing in relation to their cancer treatment. Crucially, patients appeared unable to disentangle the treatment role of TFGT from its preventative function for self and other family members, suggesting that some may undergo TFGT to obtain information for others rather than for self.     

“I Don’t Want to Be an Ostrich”: Managing Mothers’ Uncertainty during BRCA1/2 Genetic Counseling

Families who face genetic disease risk must learn how to grapple with complicated uncertainties about their health and future on a long-term basis. Women who undergo BRCA 1/2 genetic testing describe uncertainty related to personal risk as well as their loved ones’, particularly daughters’, risk. The genetic counseling setting is a prime opportunity for practitioners to help mothers manage uncertainty in the moment but also once they leave a session. Uncertainty Management Theory (UMT) helps to illuminate the various types of uncertainty women encounter and the important role of communication in uncertainty management. Informed by UMT, we conducted a thematic analysis of 16 genetic counseling sessions between practitioners and mothers at risk for, or carriers of, a BRCA1/2 mutation. Five themes emerged that represent communication strategies used to manage uncertainty: 1) addresses myths, misunderstandings, or misconceptions; 2) introduces uncertainty related to science; 3) encourages information seeking or sharing about family medical history; 4) reaffirms or validates previous behavior or decisions; and 5) minimizes the probability of personal risk or family members’ risk. Findings illustrate the critical role of genetic counseling for families in managing emotionally challenging risk-related uncertainty. The analysis may prove beneficial to not only genetic counseling practice but generations of families at high risk for cancer who must learn strategic approaches to managing a complex web of uncertainty that can challenge them for a lifetime.     

Heart Rate Recovery After Exercise in Outpatients with Coronary Heart Disease: Role of Depressive Symptoms and Positive Affect

Heart rate recovery after 1 min of exercise cessation (HRR-1) is an important prognostic factor in patients with cardiovascular disease (CVD). We aimed to further elucidate the association between HRR-1 and known psychosocial risk factors in patients referred for comprehensive cardiac rehabilitation. We examined 521 patients with coronary heart disease in the first week of an outpatient cardiac rehabilitation program. Depressive and anxiety symptoms were measured with the Hospital Anxiety and Depression Scale, and positive (PA) and negative affect were rated with the Global Mood Scale. Depressive symptoms showed a significant inverse relationship with HRR-1 (p?<?.05), controlling for sociodemographic and medical covariates, whereas anxiety symptoms did not show a significant association. PA made a significant contribution to HRR-1 as well (p?<?.05). Our findings suggest an independent association between HRR-1 and psychosocial risk factors of CVD.     

Coping Functions of Prayer and Posttraumatic Growth

Research on prayer and posttraumatic growth (PTG) indicates that those who pray report more PTG. Research is beginning to identify which types of prayer may be operating in this relationship. We sought to identify specific prayer functions related to PTG while considering differences due to the types of trauma experienced. Participants were trauma survivors from diverse, Midwestern Christian churches (N = 327). Participants completed questionnaires assessing trauma history, prayer coping functions, and PTG. Multiple linear regression analyses found that praying for calm and focus was independently related to higher levels of PTG. When considering all variables in the model, the relationship between prayer for calm and focus and PTG was not significant for those whose most significant trauma was interpersonal in nature, but significant for those with noninterpersonal trauma.     

Perceived Social Support Mediates the Relations Between Parental Attachment and Posttraumatic Growth and Resilience in Adolescents Following the Yancheng Tornado

Previous studies have shown that parental attachment is associated with higher levels of posttraumatic growth (PTG) and resilience in individuals who have experienced traumatic events. The present study investigated perceived social support as one pathway in which parental attachment is related to PTG and resilience among Chinese adolescents who have experienced trauma by considering the role of perceived social support. Participants were 443 Chinese adolescents who had experienced a severe tornado a year prior to this study. The results showed that our model fitted the data well [χ²/df = 2.847, comparative fit index (CFI) = 0.970, TLI = 0.963, root mean square error of approximation (RMSEA) (90% CI) = 0.065 (0.056–0.073)] and revealed that perceived social support partially mediated the relationship between parental attachment, and PTG and resilience. The clinical implications and limitations of our research, and recommendations for future research are discussed in this paper.     

Development of the Diabetes Self-Care Efficacy Scale

The present study elaborates the conceptualization and process of development of a scale for assessing diabetes self-care efficacy (DSCE) in patients of diabetes, type 1 and type 2. Health maintenance in chronic illness as diabetes is dependent on performing several key self-care behaviours. The present study discusses two parts—Part I elaborates the qualitative exploration of the research construct through semi-structured interview of diabetic patients. It included 25 diabetic patients, Type-I (n?=?5) and Type-II (n?=?20). Part II discusses the quantitative research methods. The sample consisted of 233 diabetic patients, Type-1 (n?=?39) and Type-2 (n?=?194), who were randomly selected from diabetes and endocrine outpatient department (OPD) of a hospital in, Kolkata, India. Following an exploratory approach employing Principal Component Analysis (PCA), three components were yielded that accounted for approximately 60% of explained variance. Cronbach’s alpha was established at 0.89 indicating satisfactory internal reliability. The components were identified as component 1, “Beliefs about physical exercise regimen” (BPE), component 2, “Beliefs about food and insulin administration and medication recommendations” (FMR) and component 3, “Beliefs about learning and following from others” (LFO). To test the obtained factor structure of the proposed DSCE scale, a confirmatory analysis was performed to help validate the 3-factor, 15-item DSCE scale. The scale is first one of its kind to be proposed and developed in an Indian diabetes context and can prove useful in other settings. Study findings have implications for use in hospital setup and for development of intervention programs in dealing with diabetes patient population.     

Systemic Family Therapy Competences in Child and Adolescent Mental Health Care

This article is based on a doctoral research project aiming to identify a comprehensive and detailed outline of the systemic therapist competences in child and adolescent mental health care in Norway. Because of the growing demands to offer specialized services within child and adolescent mental health care, I intended the identified competences to target the psychosocial difficulties that are categorized as associated abnormal psychosocial situations (axis 5) in the multiaxial diagnostic system (WHO, Multiaxial classification of child and adolescent psychiatric disorders. The ICD-10 classification of mental and behavioural disorders in children and adolescents. Cambridge University Press, Cambridge, 1996). The project is based on twelve qualitative in-depth interviews with six experienced systemic family therapists, and fieldwork observations of the therapists (participants) in practice. The qualitative methodology is based on Grounded Theory and five overarching categories were identified through the analysis: (1): the importance of ethical and contextual awareness in systemic therapy; (2) the systemic therapist’s stance; (3) therapeutic processes; (4) therapeutic practices; and (5) session-specific features. Challenges, such as limiting the systemic approach to five overarching competences, are discussed alongside this strengths and limitations of the study. The detailed outline of systemic therapist competences is intended to offer a framework for delivering flexible, yet specialized systemic therapy in the context of child and adolescent mental health care. This research may therefore facilitate a “bridge-building process” between mental health’s biomedical focus and postmodern systemic ideas.