Exploring Parents' Experiences and Needs During Disclosure of a Cerebral Palsy Diagnosis of Their Young Child: A Scoping Review.

BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the child. Parental mental health outcomes are known to be affected by the process of disclosure of a diagnosis. In this study, we aimed to synthesize the current knowledge about parents' experiences and needs regarding communication during the disclosure of the diagnosis of their child with (or at risk of) CP. METHODS: A scoping review following the methodological steps outlined by the Joanna Briggs Institute was performed using PubMed, Embase, CINAHL and PsycINFO. We qualitatively explored parent-reported experiences and needs across included studies, using thematic analysis. RESULTS: A total of 19 studies were included. Six themes were identified, three in relation to experiences (i.e., preceding experiences and feelings, perceptions of the disclosure and emotional impact) and three in relation to needs (i.e., transparency in information, supportive attitude and having a say). Despite high variability across studies regarding parental needs, most studies reported the need for (i) honest and clear information, (ii) good communication skills amongst professionals and (iii) emotional and practical support after diagnosis. CONCLUSIONS: Our findings suggest that parents' experiences and needs in the period when their child's diagnosis of (high risk of) CP is communicated are highly variable, due to an interplay of personal and contextual factors. To facilitate good communication during disclosure, it is crucial that health care professionals assess and understand this complex process and consider parents' needs for open communication and autonomy in the process. Therefore, professionals need to attune to parents' needs and their individual preferences regarding conversations about their child with (or at risk of) CP.

The views of cancer patients of Turkish, Moroccan, Surinamese, and Dutch-Caribbean descent on diagnosis, treatment and prognosis: A systematic literature review.

BACKGROUND: The number of international migrants is increasing worldwide. The four major non-western ethnic groups in the Netherlands are Turkish, Moroccan, Surinamese, and Dutch-Caribbean. This review examined the scientific literature on the views of cancer patients from these four ethnic groups on cancer diagnosis, treatment, and prognosis. METHODS: A systematic literature review was conducted using the databases EMBASE, Medline Web of Science, and Cochrane Central Register. Studies with patients who were of Turkish, Moroccan, Surinamese, and Dutch-Caribbean descent were included. Both qualitative and quantitative studies were included, and thematic analysis was performed. The methodological quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: Thirteen studies were conducted in Turkey on Turkish cancer patients, while three were conducted in the Netherlands on Turkish and Moroccan cancer patients. Four themes emerged from the included studies: disclosure of diagnosis, communication, information provision, and decision-making. The majority of cancer patients in Turkey wanted information regarding their diagnosis and treatment. However, disclosure of a cancer diagnosis was rarely discussed with cancer patients in Turkey, whereas in the Netherlands it was provided directly. Family members in both the host and native countries had a strong influence on communication and decision-making. No literature on this topic for Surinamese or Dutch-Caribbean cancer patients was found. CONCLUSION: Although major ethnic groups live in host countries, there is a lack of knowledge on optimal communication and information disclosure on cancer to patients and their families. POLICY SUMMARY: Further research into the views of ethnic groups on how to communicate about cancer is essential to ensuring that every patient receives optimal care and treatment.

Interactions Between the Police and the Autistic Community in Australia: Experiences and Perspectives of Autistic Adults and Parents/Carers.

This study aimed to describe the experiences of autistic people who had interacted with police in Australia in the previous 5 years. Fifty autistic adults and 61 parent/carers completed a questionnaire and 30 participants took part in an interview. Participants were most commonly interacting with police in the context of seeking assistance or as victims of crime. Autistic adults were largely unsatisfied with their interactions and reluctant to disclose their autism. Parent/carers reported significantly higher satisfaction than autistic adults and incidents involving children were rated more highly than those involving adults. Suggestions for improved interactions included increased autism awareness amongst police and use of appropriate accommodations. Areas for future research in relation to the evaluation of police training is discussed.

Perspectives of adults with Klinefelter syndrome, unaffected adolescent males, and parents of affected children toward diagnosis disclosure: a Thai experience.

Little is known about disclosure of diagnosis to males with Klinefelter syndrome (KS) diagnosed before birth or during childhood, especially in Asian context. Insufficient preparation for disclosure communication could lead to the child's depression, anxiety, or disrupted self-esteem. This is an interventional and qualitative interview study with a brief self-reported survey. The study consists of three phases. In phase I, adults with KS were asked about their experiences and viewpoints toward KS disclosure and diagnosis through individual interviews. In phase II, unaffected adolescent males were given information about KS and then asked to give hypothetical answers to a questionnaire followed by a group interview, as if they had KS. In phase III, parents of children with KS were asked to complete a questionnaire followed by a group interview which included a discussion about their disclosure plans and their concerns. The parents were provided information obtained from adults with KS and unaffected adolescent males, and were then interviewed again as a group. We found that the most hurtful issues were discovering their infertility from KS and late disclosure. From the perspective of unaffected adolescent males, early disclosure in early or mid-teens in a neutral, supportive, and relaxed manner, along with information on benefits of hormonal treatment, the assurance of biological sex as "male," and avoidance of some sensitive words are strongly recommended, as a way to promote self-confidence and positive coping with the diagnosis. After intervention, the parents reported more confidence and less anxiety about disclosing the diagnosis to their children, and indicated that they would disclose KS at an earlier age. For unaffected adolescent males, though it is a hypothetical scenario and their reaction may differ from affected adolescents, unaffected adolescent males' viewpoints on how they might react are more or less representative of cultural changes for the new generation, especially in the Asian context. In addition, their viewpoints influenced parents' decision and genetic counseling plans for the diagnosis disclosure of KS to their children. We propose a preliminary guideline for KS diagnosis disclosure.

Impact of the disclosure of diagnosis on posttraumatic stress and growth and quality of life in Chinese patients with hepatocellular carcinoma.

PURPOSE: To evaluate the impact of disclosure/nondisclosure of cancer diagnosis on patients' posttraumatic stress symptoms (PTSS), posttraumatic growth (PTG), and quality of life (QOL). METHODS: Patients with primary hepatocellular carcinoma (HCC) who were admitted for potentially curative treatments in a teaching hospital were recruited. Patients were interviewed at admission regarding their QOL and their attitude towards disclosure of diagnosis. They were interviewed again for QOL, PTSS, and PTG at discharge and at 1 month after discharge. RESULTS: There were 300 patients recruited, 88.3% of whom preferred disclosure of cancer diagnosis. In fact, 162 patients (54.0%) received disclosure of their cancer diagnosis before discharge (disclosed group). However, for the 138 patients whose diagnoses were concealed by their families (uninformed group), 116 patients (84.1%) had learned of their diagnosis of HCC independently within 1 month after discharge. Comparing the scores at 1 month after discharge with scores at discharge showed that the PTSS score significantly declined for patients in the disclosed group and the PTG score significantly decreased for the uninformed patients at 1 month after discharge (p < 0.001 for both comparisons). Additionally, compared with the uninformed group, patients in the disclosed group had lower scores for PTSS (p < 0.001), higher scores for PTG (p < 0.001), better emotional functioning (p < 0.001), and better global QOL (p = 0.006) at 1 month after discharge. CONCLUSIONS: Our findings indicate that concealing the diagnosis of cancer from patients is unlikely to succeed. Additionally, disclosure of diagnosis is beneficial for HCC patients in reducing PTSS and improving PTG and QOL.

A qualitative study on the attitudes of patients with gastrointestinal cancer toward being informed of the truth.

OBJECTIVE: The aim of this study is to investigate the attitudes of hospitalized patients with gastrointestinal cancer toward being informed of the truth and to provide references for informing patients of their gastrointestinal cancer diagnosis. METHODS: Nine patients with gastrointestinal cancer were selected for this study by using a purposive sampling technique from a general surgery ward in a tertiary-level general hospital in Zhejiang Province from June 2016 to October 2016. Semi-structured, in-depth interviews were conducted, and the descriptive phenomenological method (developed by Amedeo Giorgi) was used to analyze the interview data. RESULTS: Five themes were developed through reading, analysis, reflection, and classification of the data: Theme 1, guessing the diagnosis of gastrointestinal cancer before being informed of the truth; Theme 2, eagerness to know the diagnosis results; Theme 3, expectations related to beginning treatment for cancer; Theme 4, stress and anxiety during treatment; and Theme 5, providing patients with hope and optimism at the early diagnosis stage. CONCLUSION: Patients have a strong desire to survive and can confidently confront their gastrointestinal cancer diagnosis. Medical staff should carefully select the appropriate time to inform patients of their diagnosis by evaluating their attitudes toward being informed, thereby actively meeting patients' needs for information and treatment.

A revelação diagnóstica aos parceiros afetivo-sexuais por pessoas que vivem com HIV/AIDS: trabalhando com a dúvida e o segredo / Diagnostic disclosure to affective-sexual partners by people living with HIV/AIDS: dealing with doubt and secrecy

O presente estudo teve como tema os aspectos psicológicos que envolvem a revelação do diagnóstico às parcerias afetivo-sexuais, por pessoas que vivem com HIV/Aids. Como objetivo geral propôs-se compreender de que forma a revelação diagnóstica afeta os relacionamentos afetivo-sexuais desses indivíduos. Especificamente, buscou-se verificar quais são os sentimentos vivenciados pelas pessoas que vivem com HIV em relação à revelação de seu diagnóstico para parcerias afetivo-sexuais, bem como ampliar o escopo teórico-clínico a respeito do tema, de modo a contribuir teoricamente para a construção de projetos terapêuticos mais eficazes no atendimento aos usuários que apresentam dificuldade em relação à revelação diagnóstica. Realizou-se uma pesquisa qualitativa, onde foram entrevistadas pessoas que vivem com HIV, convidadas à reflexão a respeito dos sentimentos mobilizados frente à temática em questão. O medo da rejeição foi o sentimento mais frequente dentre os entrevistados motivado principalmente pelo preconceito existente quanto ao HIV/Aids.

The main theme of this study was the psychological aspects that involve the disclosure of the diagnosis to affective-sexual partnerships, by people living with HIV/Aids. As a general goal, we aimed to understand how a diagnostic revelation affects people's affective-sexual relationships. Specifically, we sought to verify the feelings experienced by the people living with HIV regarding the disclosure of their diagnosis to affective- sexual partnerships, as well as to broaden the theoretical-clinical scope of the subject, in order to contribute theoretically to the development of more effective therapeutic projects to assist the users who present difficulty in relation to the diagnostic disclosure. A qualitative research was carried out, people living with HIV were interviewed, invited to reflect on the feelings mobilized in relation to the issue in question. The fear of rejection was the most frequent feeling among those interviewed motivated at least by the existing prejudice regarding HIV/Aids.

The biomarker-based diagnosis of Alzheimer's disease. 1-ethical and societal issues.

There is great interest in the use of biomarkers to assist in the timely identification of Alzheimer's disease (AD) in individuals with mild symptoms. However, the inclusion of AD biomarkers in clinical criteria poses socioethical challenges. The Geneva Task Force for the Roadmap of Alzheimer's Biomarkers was established to deliver a systematic strategic research agenda (aka roadmap) to promote efficient and effective validation of AD biomarkers and to foster their uptake in clinical practice. In this article, we summarize the workshop discussion of the Geneva Task Force "ethical and societal issues" working group, which comprised bioethicists, clinicians, health economists, and representatives of those affected by AD. The working group identified the following key issues that need to be included in the roadmap: improving access to services through timely diagnosis, the need for a diagnostic research protocol before moving to clinical routine, recruitment in diagnostic research protocols in the absence of effective therapy, respect for the autonomy of the individual with mild cognitive impairment in information and consent process and the right not to know biomarkers results, need for counseling programs, disclosure of the diagnosis in a structured environment and the involvement of family members, health policies including the individuals' views and the protection of their interests, and the economic costs for society.

Impact of disclosure of diagnosis and patient autonomy on quality of life and illness perceptions in Chinese patients with liver cancer.

OBJECTIVE: This prospective cohort study explored the impact of disclosure of diagnosis and patient autonomy on the health-related quality of life (HRQOL) and illness perceptions in Chinese patients with hepatocellular carcinoma (HCC). METHODS: Patients with HCC who were admitted for potentially curative treatments in a teaching hospital were recruited from August 2013 to July 2014. Patients were interviewed at admission regarding their HRQOL and their attitude towards disclosure of diagnosis. They were interviewed again regarding HRQOL and illness perceptions at discharge. RESULTS: There were 218 patients recruited; 57.8% of them were aware of their cancer diagnosis (disclosed group). For 63.8% of the participants, their desire for disclosure or nondisclosure was satisfied (autonomy-satisfied group). When comparing the patients in the disclosed group with the patients who were uninformed, the patients in the disclosed group had higher scores for global HRQOL at discharge (p = 0.013) and higher scores on understanding of their illness regarding illness perceptions (p = 0.022). When comparing the patients in the 'autonomy-satisfied' group with the patients whose desire for disclosure was not satisfied, the patients in the autonomy-satisfied group had better emotional functioning and better global HRQOL at discharge (p < 0.001 and p = 0.001, respectively). Additionally, the patients in the autonomy-satisfied group had higher scores for personal control (p = 0.009) and lower scores for emotional reaction (p = 0.007) regarding illness perceptions, even after controlling for other confounding factors. CONCLUSIONS: Our findings suggest that for patients with HCC who have undergone potentially curative treatment, physicians should satisfy patients' desires for autonomy regarding the disclosure of their diagnosis. Copyright © 2015 John Wiley & Sons, Ltd.

To tell or not to tell? Revealing the diagnosis in multiple sclerosis.

We review briefly (1) the history of patient-physician relationship and its evolution from a physician-centered to patient-centered model; (2) the impact of the McDonald Criteria for Multiple Sclerosis (MS); (3) why it is important to tell patients of their diagnosis; (4) how physicians should disclose the diagnosis to patients; (5) dealing with suspected MS; and (6) prognosis and treatment. For the majority of clinically definite MS patients we advocate disclosure, identify steps for physicians to communicate the diagnosis and propose a framework to follow when revealing a diagnosis of MS.