Responses to a cancer diagnosis: a qualitative patient-centred interview study

Kirby, Emma; Kenny, Katherine; Broom, Alexander F.; Oliffe, John L.; Lewis, Sophie; Wyld, David; Yates, Patsy; Parker, Rhiannon; Lwin, Zarnie

doi:10.1007/s00520-019-04796-z

Cited by 15 publications

(10 citation statements)

References 42 publications

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“…In some cases, parents claimed their emotions compromised their ability to comprehend the diagnosis. This study finding is consistent with the literature that showed that more than half of parent participants experience an emotional reaction during the disclosure process, which plays a role in hindering comprehension (Kessel, Roth, Moody, & Levy, 2013; Kirby et al, ; Klein et al, ; Morse, ).…”

Section: Discussionsupporting

confidence: 92%

“…Some parents expressed a sense of validation because the diagnosis has been a long time coming, and they felt relieved as their own perspectives about their child's development was validated by the team of professionals. This finding concurs and contributes to research conducted by Kirby et al () who showed that some cancer patient's valued validation provided by a diagnosis, as it ended patient's doubt.…”

Section: Discussionsupporting

confidence: 90%

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Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

Pearson

Wagner

Schmidt

2020

Child

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Background Full parental understanding of a child's diagnosis of a developmental disability is critical to be able to ensure the best health outcome for their child. Yet factors that parents perceived as influencing their comprehension during the final diagnostic meeting have not been well identified. Method This study used a qualitative interpretive description approach. Seventeen parents were interviewed who received a child's developmental diagnosis from one of the clinical multidisciplinary teams located in northern British Columbia. The interviews focused on the factors that played a role in facilitating or impeding the parents' understanding of their child's diagnosis, and on the identification of factors that influenced the way in which the child's clinical recommendations were pursued. Results Two overarching themes with nine subthemes emerged from parents' reported experiences of receiving their child's developmental diagnosis. The themes and subthemes included (a) clinical encounter (including the subthemes structural considerations, professional diversity and new insights, questions regarding the assessment process, and validation) and (b) manner of the delivery of the diagnosis (emotional impact, impact on parenting practices, professionalism, professional language, and quantity of information). Conclusions Parents' accounts established and clarified the positive and negative parental determinants that aided or challenged their ability to understand their child's developmental diagnosis during the final clinical interaction with the multidisciplinary team.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 90%

Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

Pearson

Wagner

Schmidt

2020

Child

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“…According to a recent interview study, the diagnosis of cancer may come absolutely unexpected and as a shock, but also may appear incidental, may be perceived as a confirmation of previously unexplained symptoms, or assessed rather promptly relative to other critical life events. 40 Equally, receiving the diagnosis of depression is not always a relief, as it was associated with non-acceptance in around one-quarter of more than 10,000 young adults surveyed. 41 Therefore, subsequent studies should take the individual appraisal of one's own physical or psychological disorder more into account when evaluating video scenarios.…”

Section: Discussionmentioning

confidence: 99%

Communicating the diagnosis of cancer or depression: Results of a randomized controlled online study using video vignettes

et al. 2021

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Cancer may be associated with notable impairments of health-related quality of life, psychological distress and depression. 1,2 Thus, cancer and mental health are interrelated. Consultation, specifically in oncology, is associated with many challenges, such as communicating the diagnosis and defining an adequate point in time for discussing psychosocial aspects. 3 Disclosing a mental disorder may be just as challenging for practitioners due to, for instance, not knowing patients' information needs or lacking the strategies to discuss a diagnosis. 4 Thus, not discussing a mental disorder

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“…A study of terminally ill cancer patients also found different preferences for truthful communication of bad prognosis, varying from wanting the full truth, to a desired truth, this corresponding to different coping strategies [26]. Kirby found that patients' response to a cancer diagnosis is not only shaped by the physician delivering the information, but also by patient factors when receiving information [27]. How information on diagnosis was received was influenced by the patient's own social and life context: often shocking, sometimes surprising, in some confirming a suspicion and in others not only experienced as bad due to their life context.…”

Section: Discussionmentioning

confidence: 99%

“Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis

Malmström

Åkesson

Milos

et al. 2020

Support Care Cancer

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Purpose Glioma patients have poor prognosis. The amount of detail of disease-related information patients wish to receive is not known. The aim of this study was to explore glioma patients’ experiences and preferences regarding receiving information on diagnosis and prognosis. Methods Semi-structured interviews were performed with patients diagnosed with glioma. The interviews were analysed by qualitative content analysis without predefined categories by two independent coders. Results Ten women and 15 men, with newly diagnosed grade II–IV glioma, age 25–76 years, were interviewed. Participants’ experience on diagnosis communication was either indirect, meaning they found out their diagnosis unintentionally, e.g., from their electronic health record (EHR) instead of from their doctor, this causing anxiety and feelings of abandonment, insufficiently tailored: lacking in many aspects or individualised and compassionate. Participants generally wanted to know “the truth” about diagnosis and prognosis, but what they meant varied; some desired full honest information to allow for autonomous choices, others preferred general information without details, and some wanted no bad news at all, only positive information. Participants disclosed vulnerability after receiving their diagnosis, being cast into the unknown. They expressed a need for better everyday practical information to help create some control. Supportive staff could reduce participants’ distress. Conclusion There is a need to further develop and implement individually tailored information to glioma patients, both in consultations and patient-accessed EHR systems, which should have safe guards for sensitive information. Not all patients want to know it all, one size does not fit all.

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Responses to a cancer diagnosis: a qualitative patient-centred interview study

Cited by 15 publications

References 42 publications

Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

Parental perspective: Factors that played a role in facilitating or impeding the parents' understanding of their child's developmental diagnostic assessment

Communicating the diagnosis of cancer or depression: Results of a randomized controlled online study using video vignettes

“Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis

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