Parents' experiences of receiving their child's genetic diagnosis: a qualitative study to inform clinical genetics practice.

Little is currently known about how parents experience the medical genetics appointment at which their child receives a genetic diagnosis. We conducted semi-structured in-person interviews with 13 parents of 10 index children to explore their experience in the medical genetics appointment in which they received their child's genetic diagnosis. Guided by grounded theory, we used a constant comparative approach to data analysis. Transcribed interviews were coded and sorted, and thematic categories identified. Sixty-one and a half percent of parents experienced the diagnosis session as negative, 23% felt the experience was positive, and 15.5% were ambivalent. Receiving emotional support, an outline of the follow-up plans, and messages of hope and perspective during the session seemed to positively influence parents' experience, while feeling that their role was as a passive receiver of information and the use of difficult medical terminology negatively influenced parents' overall experience. Parental preparedness for the information, and the parents' emotional reaction to the diagnosis were also factors that influenced the parental experience. Few participants understood the role of the genetic counselor. Our results provide in-depth insight into the parental experience of the pediatric medical genetics diagnosis session. We propose a mechanism through which parental experience shapes their perception of the medical genetics session.

Cancer patients' experiences and preferences when receiving bad news: a qualitative study.

PURPOSE: Receiving a cancer diagnosis significantly impacts patients' lives, and how the bad news is delivered influences patients' trajectory, psychosocial adjustment and openness to psycho-oncological support. We explored how patients' experiences, reactions and preferences were when receiving the news and which optimization recommendations can be made. METHODS: We conducted an exploratory qualitative study with patients who enrolled in the new integrated cross-sectoral psycho-oncological care programme 'isPO', being enrolled 12 months post-diagnosis. Data on the main issue (i.e. perception of the moment when the diagnosis is received) were collected via telephone interviews that were fully audiotaped and transcribed. Two independent coders conducted inductive content analyses using MAXQDA. RESULTS: Out of 38 approached patients, 23 cancer patients with 13 different tumour entities participated. They had a mean age of 54.2 (SD 16.2); n = 17 (74%) were female. Three major themes with 14 corresponding subthemes emerged: (1) patients' experiences with the bad news delivery, including setting, mode, preparation and perceived needs; (2) patients' reactions to the bad news, such as shock, fear and helplessness, disbelief and denial, anger and feeling of injustice, thankfulness and depression; and (3) patients' receiving preferences, including psycho-oncological support, addressing informational needs, needs-driven comprehensive support and a competent multidisciplinary support team. CONCLUSIONS: The quality of bad news delivery and addressing patients' needs should be strongly considered by physicians. We recommend integrating patients' perspective on the quality management processes of breaking bad news. For providing needs-centred high-quality care, applying existing guidelines and acquiring patient-centred communication skills are central.

'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting.

OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations. METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative care in paediatric oncology. Data was collected using emotional touchpoint storytelling. The names (descriptors) given to the emotional experiences were linguistically classified. Explanations of their perceived origins were examined using applied thematic analysis. RESULTS: 26 descriptors were given, relating to bodily sensations, affective states, evaluations and cognitive conditions. Three themes were identified in the origins of these experiences - 'becoming aware', 'the changes' and 'being in this situation'. Parents described strong emotional displays during the consultation including physical collapse. These related to the internal process of 'becoming aware'. Three descriptors were given as originating from the clinicians and their delivery of the news - 'supported', 'included', 'trusting'. CONCLUSIONS: Recipients perceive their emotional experiences as mainly originating from the news itself, and perceived consequences of it, rather than its delivery. Strong emotional reactions during the interaction are not necessarily an indicator of ineffectual delivery. PRACTICE IMPLICATIONS: Findings offer a thematic framing that may support and deepen practitioners understanding of recipients' emotional reactions during bad news consultations.

Preferences and attitudes of the Saudi population toward receiving medical bad news: A primary study from Riyadh city.

BACKGROUND: Breaking bad news is one of the most stressful and difficult things a physician has to do. Good communication skills are required in order to ensure that bad news is delivered in a humane but effective way. OBJECTIVES: This study was designed to explore the preferences and attitude of the Saudi population toward receiving bad news. Second, it was to identify the associations between preferences, attitudes, and sociodemographic characteristics. MATERIALS AND METHODS: This was a cross-sectional study conducted during the month of April 2009 in Riyadh. Data were collected from 1013 adult Saudis. Stratified random sampling technique was used through a self-administered questionnaire. RESULTS: In this study, 474 (46.8%) were males and 539 (53.2%) were females. Almost two-third of the participants preferred to be the first to receive the bad news. A majority of the participants 695 (68.6%) preferred to be told the bad news at a private place, whereas, 441 (43.5%) preferred to be told by the head of the medical team. Moreover, almost half of the participants would like the one who breaks the bad news to remain with them to give them some more information about the disease. Significant associations were observed between participants' perception and attitude with age, marital status, gender, and education (P < 0.001), respectively. CONCLUSION: Factors such as marital status, age, and gender, and education play significant roles in how bad news is received. Understanding what is important in the process of breaking bad news may help in determining how best to perform this challenging task.