The Experiences of Family Caregivers in Response to a Dementia Diagnosis Disclosure

Background: Dementia is a serious disease that can lead to disability because it impacts the individual’s memory, cognition, behavior, and capacity to perform activities of daily living. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of family caregivers, based on their perspectives, are often unknown. The primary aim of this study was to explore the experiences of family caregivers in response to a dementia diagnosis disclosure and analyze the care needs of caregivers.Methods: A qualitative study conducted in accordance with COREQ guidelines. The grounded theory approach was undertaken in 20 family caregivers of patients with dementia, who were selected using purposive sampling. Data were analysed using the constant comparative method.Results: Diagnostic disclosure: Start the long road of care challenges was identified as the core category of this study, which was defined as describing the experiences of family caregivers of patients with dementia after first being informed of the patients’ diagnosis, which activates their willpower to progress against the disease. Five major categories describing the experiences of family caregivers following a dementia diagnosis was developed: ‘deciding to seek medical attention,’ ‘the moment of disclosure,’ ‘conveying information,’ ‘maintaining the patients’ functioning,’ and ‘receiving support and living well with dementia.’ Subcategories within each major category also emerged.Conclusions: Clear diagnostic disclosure is important for ensuring that positive developments can occur in response to disclosure. Healthcare professionals must develop strategies to prevent disclosure from triggering overreactive emotions from patients with cognitive impairments, assist them in understanding their illness in a tactful manner, and ensure that they understand how to cooperate in any subsequent care plans.

Borderline personality disorder, therapeutic privilege, integrated care: is it ethical to withhold a psychiatric diagnosis?

Once common, therapeutic privilege—the practice whereby a physician withholds diagnostic or prognostic information from a patient intending to protect the patient—is now generally seen as unethical. However, instances of therapeutic privilege are common in some areas of clinical psychiatry. We describe therapeutic privilege in the context of borderline personality disorder, discuss the implications of diagnostic non-disclosure on integrated care and offer recommendations to promote diagnostic disclosure for this patient population.

Understanding, Communication and Concerns Around Sexual Development Differences by Patients’ Perspectives

Introduction: The approach to Differences of Sexual Development (DSD) patients is complex. It involves discussion on karyotype, gonads, genital phenotypes, hormonal treatment, genitoplasty, sexual activity and fertility. A satisfactory understanding by the patients optimize the follow up and the acceptance of the condition. Objective/Methods: To analyze the understanding of DSD patients about their condition, the doubts and concerns, the barriers to communication and repercussion in gender, sexual orientation and relationships in a cohort of patients followed at a reference center, through a semi directed interview. Results: 57 patients were interviewed. The mean ages were 36.5y. Around 90% of all patients concluded at least the high school. Only 50% of all patients knew the condition’s name and how they were affected by it. Still 92% knew the treatment. 63% of the patients presented doubts, mainly related to diagnosis. The median level of satisfaction about the condition understanding (on a scale from 1 to 5) was 4. Most of the patients were first informed by doctors (65%) or mothers (27%). The mean age of diagnostic disclosure was 13 y among patients with atypical genitalia. However, 67% of them preferred be first informed in childhood. Around communication, 60% of them reported no dialogue at home about the condition, 82% feel uncomfortable in talking to other people and 57% experienced negative comments related to DSD. Only four 46,XY DSD presented gender dysphoria: 3 with partial gonadal dysgenesis (who were admitted at the reference service after genitoplasty) and one 5-α-reductase 2 deficiency. About affective relationships, 42% of the patients were single and 70% had already experienced sexual activity. The mean age at first sexual activity was 22y. 72% considered that condition influences negatively on relationships because the stigma, the genitalia appearance, the insecurity in sexual intercourse and fertility. The concern related to stigma was higher among patients with atypical genitalia. The patients’ self-evaluation (scale from 0 to 10) about their condition understanding improved after the interview: 6 to 8.9 (p<0.01). Conclusion: There is lack of knowledge about DSD among patients even treated in a referral center. The atypical genitalia arouses curiosity and stigma. Educational acts for patients, health team and community are needed to make DSD conditions popular, to improve the understanding and communication and to decrease the stigma.

The Etiology of Infertility Affects Fertility Quality of Life of Males Undergoing Fertility Workup and Treatment

This panel study explored the effects of male, female, mixed, or idiopathic factor of infertility on the fertility quality of life (FertiQoL) in involuntarily childless males undergoing fertility workup for the first time. A convenience sample of 255 married males (age range = 22–51 years, mean = 30.24 years), 254 (99.6%) of whom suffered from primary infertility were assessed (1) at the baseline, before their initial fertility evaluation (T1); (2) before their second andrological appointment, 2–3 months after diagnostic disclosure (T2); and (3) before subsequent treatment-related/ follow-up appointments (T3, T4). The timing of psychological assessment was strictly related to andrological appointments and routine medical procedures. Respondents completed Emotional, Mind–Body, Relational, and Social subscales of the Polish version of FertiQoL and a baseline demographic survey. The research demonstrated that the FertiQoL scores across the Emotional, Mind–Body, and Relational subscales markedly decreased after the diagnostic disclosure, particularly in the subgroups with male and concurrent male and female factor. Social subscale scores in all subgroups remained stable after the diagnostic disclosure (at T2) but significantly decreased in the follow-up (at T3 and T4). Significant differences in FertiQoL scores associated with respondents’ infertility factor could be demonstrated at each time point. The study identifies the FertiQoL in unintentionally childless males is significantly affected by their factor of infertility and evolves across the pathway of treatment-related/follow-up appointments.

Autistic adults’ experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes

Autistic individuals often struggle to find and maintain employment. This may be because many workplaces are not suited to autistic individuals’ needs. Among other difficulties, many autistic employees experience distracting or disruptive sensory environments, lack of flexibility in work hours, and unclear communication from colleagues. One possible way of mitigating these difficulties is for employees to disclose their diagnosis at work. While disclosure may increase understanding and acceptance from colleagues, it can also lead to discrimination and stigma in the workplace. Research has shown that disclosure outcomes are often mixed, but it is unclear what factors are associated with either positive or negative outcomes of disclosure for autistic people. This study aimed to identify these factors and explore the reasons why autistic employees choose to disclose or to keep their diagnosis private. Semi-structured interviews were conducted with 24 clinically-diagnosed autistic adults (12 male and 12 female) who were currently, or had been, employed in the UK (mean age = 45.7 years). Through thematic analysis, we identified three main themes under experiences of disclosure: 1) A preference for keeping my diagnosis private; 2) The importance of disclosure in the workplace; and 3) Disclosure has mixed outcomes. We also identified three factors associated with disclosure outcomes: understanding of autism, adaptations, and organisational culture. These results have implications for improving inclusive practices on both the individual and organisational level to ensure more positive disclosure experiences for autistic employees.