Cancer Diagnosis: A Trauma for Patients and Doctors Alike

Gieseler, Frank; Gaertner, Lynn; Thaden, Elske; Theobald, Werner

doi:10.1634/theoncologist.2017-0478

Cited by 25 publications

(22 citation statements)

References 21 publications

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“…Prior studies of PLWH underscore the high levels of pre-diagnosis trauma in this population, the distress experienced during an encounter in which a diagnosis is received and the degree to which receiving a diagnosis can be a destabilizing force in people’s lives [ 30 , 31 ]. Studies from oncologic settings, where patients are also confronted with life-threatening diagnosis, suggest that whether the experience of receiving the diagnosis transforms into a trauma depends on factors including prior experience with the disease, prognosis, treatment options, existing support systems, and how the diagnosis is communicated [ 32 , 33 ]. Incorporating a trauma-informed approach during the peri-diagnosis period that addresses these factors could potentially facilitate successful initiation of and retention on ART.…”

Section: Discussionmentioning

confidence: 99%

How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda—A qualitative study

et al. 2021

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Introduction HIV treatment guidelines recommend that all people living with HIV (PLWH) initiate antiretroviral therapy (ART) as soon as possible after diagnosis (Treat All). As Treat All is more widely implemented, an increasing proportion of PLWH are likely to initiate ART when they are asymptomatic, and they may view the relative benefits and risks of ART differently than those initiating at more advanced disease stages. To date, patient perspectives of initiating care under Treat All in sub-Saharan Africa have not been well described. Methods From September 2018 to March 2019, we conducted individual, semi-structured, qualitative interviews with 37 patients receiving HIV care in two health centers in Kigali, Rwanda. Data were analyzed using a mixed deductive and inductive thematic analysis approach to describe perceived barriers to, facilitators of and acceptability of initiating and adhering to ART rapidly under Treat All. Results Of 37 participants, 27 were women and the median age was 31 years. Participants described feeling traumatized and overwhelmed by their HIV diagnosis, resulting in difficulty accepting their HIV status. Most were prescribed ART soon after diagnosis, yet fear of lifelong medication and severe side effects in the immediate period after initiating ART led to challenges adhering to therapy. Moreover, because many PLWH initiated ART while healthy, taking medications and attending appointments were visible signals of HIV status and highly stigmatizing. Nonetheless, many participants expressed enthusiasm for Treat All as a program that improved health as well as health equity. Conclusion For newly-diagnosed PLWH in Rwanda, initiating ART rapidly under Treat All presents logistical and emotional challenges despite the perceived benefits. Our findings suggest that optimizing early engagement in HIV care under Treat All requires early and ongoing intervention to reduce trauma and stigma, and promote both individual and community benefits of ART.

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Section: Discussionmentioning

confidence: 99%

How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda—A qualitative study

et al. 2021

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“…Studies show that vulnerable participants can find benefit from participating, even if it is a distressing experience 41,42 . There is an important question about psychological trauma being caused by catastrophic diagnosis, frightening medical treatments, and symptoms such as breathlessness , 32,43,44 which requires investigation in regard to mesothelioma.…”

Section: Discussionmentioning

confidence: 99%

What are the psychological effects of mesothelioma on patients and their carers? A scoping review

et al. 2020

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Objective: Despite recent advances in research, malignant mesothelioma remains an incurable and devastating disease, typically bringing shock and emotional distress to patients and carers. Little research has addressed the psychological impact on either group. This scoping review examines the current state of evidence on the psychological effects of mesothelioma on patients and carers, and identifies areas for further research. Methods: We searched PubMed, PsychINFO, CINAHL, the Cochrane Library and Web of Science for English-language peer-reviewed research articles published 1981 to 2019 reporting studies focussing on the psychological effects of mesothelioma on patients and carers. Following data extraction and quality appraisal, reflexive thematic analysis was used to identify themes. Results: Seventeen articles met the inclusion criteria. Carers' experiences were generally amalgamated with patients'. Three themes were developed. The Passing of Time included the importance of timing of interventions; delays in the medical journey; awareness of different time-phases in mesothelioma; and uncertainty/certainty. Dealing with Difficult Feelings reflected ubiquitous negative emotions, feelings about identity and states of being and associated coping strategies. Craving Good Communication covered issues related to sharing of information and to positive/negative aspects of communication. Conclusions: Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and interrelating psychological effects on patients and carers. These effects are both negative and positive. The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research. Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.

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“…6,7 One of the reasons for the complexity of patient/doctor talks especially with older patients is the multilayer situation of rational decision-making regarding the proposed therapy in a frightening situation in which a patient is facing a potentially deadly illness. 8,9 Family confidants and caregivers (CGs) play an important role in supporting their ill family members in many respects. Some of their major duties are managing the home and housekeeping and support in domestic chores including preparing and assisting with meals, dealing with mobility issues, arranging for transportation to medical care facilities, making medical appointments, managing prescription medication and also offering emotional support.…”

Section: Introductionmentioning

confidence: 99%

“…Good physician and patient communication was identified as one of the major contributing factors for adherence 6,7 . One of the reasons for the complexity of patient/doctor talks especially with older patients is the multilayer situation of rational decision‐making regarding the proposed therapy in a frightening situation in which a patient is facing a potentially deadly illness 8,9 …”

Section: Introductionmentioning

confidence: 99%

The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of “shared decision‐making”

Gieseler

Heidenreich²,

Schubert

et al. 2021

Health Science Reports

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Background and aims Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision‐making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient‐caregiver relationships. Methods We conducted semi‐structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi‐step coding method informed by Grounded Theory methodology toward characterizing patient‐caregiver relationships, the treatment decision‐making process, and the caregivers' role therein. Results In the majority of cases (86%), patients were being supported by caregivers. We categorized patient‐caregiver relationships in regards to the caregivers' involvement in the therapy decision‐making process. We found patient‐caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision‐making process. Yet, only in 38% of cases, a caregiver attended relevant patient‐physician‐consultations. Conclusion Depending on the nature of the patient‐caregiver relationship, the traditional concept of shared decision‐making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver‐involvement bears risks of over‐stepping elderly patients' wishes, thus violating patient autonomy.

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Cancer Diagnosis: A Trauma for Patients and Doctors Alike

Cited by 25 publications

References 21 publications

How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda—A qualitative study

How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda—A qualitative study

What are the psychological effects of mesothelioma on patients and their carers? A scoping review

The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of “shared decision‐making”

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