‘I’m not complaining because I’m alive’: Barriers to the emergence of a discourse of cancer-related fatigue

Pertl, Maria; Quigley, Jean; Hevey, David

doi:10.1080/08870446.2013.839792

Cited by 39 publications

(63 citation statements)

References 45 publications

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“…As Deimling, Bowman, and Wagner (2007) note, "even among those who are likely to survive cancer, the expectations created by the survivorship orientation risks creating a 'blame the victim' situation where individuals feel overly responsible for their own survival" (p. 764), a situation that may be aggravated in the event of recurrence. Indeed, existing narratives of cancer as a "battle" to be fought and conquered are laced with notions of personal responsibility and victory, suggesting that those who lose this battle have somehow fallen short and are undeserving of the title of "survivor" (Pertl, Quigley, & Hevey, 2014;cf. Stoller, 2004).…”

Section: Meanings and Discourses Of Breast Cancer Survivorshipmentioning

confidence: 99%

“…Indeed, dominant discourses are not accepted uniformly and uncritically : Wilkinson and Kitzinger (2000) found several areas of resistance to the expectation of optimism in their study with breast cancer patients, while Sinding and Gray (2005) detailed how participants in their project consistently challenged several assumptions about survivors, most notably the expectation for positive self-transformation. In a study on cancerrelated fatigue among survivors (Pertl et al, 2014), participants often rejected the depiction of a cancer survivor as a "strong and positive individual who has battled and prevailed rather than someone who . .…”

Section: Meanings and Discourses Of Breast Cancer Survivorshipmentioning

confidence: 99%

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Meanings of Breast Cancer Survivorship Among Members of Ethnically-Identified Support Groups

Dyer

Coreil

2017

hcs

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Research on both cancer survivorship and support needs has been limited in its attention to survivors from culturally-diverse communities. This study examined the perspectives of members and leaders of ethnically-identified breast cancer support groups regarding the meanings and expectations attached to survivorship. Semi-structured interviews were conducted with 38 African American and Latina survivors in Central Florida. Participant narratives invoked themes of spiritual renewal and deepening religious faith, and deemphasized individual responsibility for personal change. Participants emphasized the importance of shared cultural identity in shaping the survivor experience, and some Latina women drew parallels between survivorship and the challenges of migration to a new country. An unwavering display of optimism was held to be paramount. These themes are interpreted within the framework of the interplay between dominant societal discourses of survivorship and locally-constructed meanings. Findings underscore the importance for healthcare providers to be cognizant and respectful of diverse perspectives on illness.

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Section: Meanings and Discourses Of Breast Cancer Survivorshipmentioning

confidence: 99%

Section: Meanings and Discourses Of Breast Cancer Survivorshipmentioning

confidence: 99%

Meanings of Breast Cancer Survivorship Among Members of Ethnically-Identified Support Groups

Dyer

Coreil

2017

hcs

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“…Individuals with fatigue report that a ‘medicalised’ self-identity is unavailable to them, in contrast to those impaired due to medically- and socially- legitimated illnesses [14]. The ‘invisible’ nature of fatigue may lead others to discredit patients’ illness experiences [15] and those with CrF have described a lack of understanding from family, friends and health professionals [16].…”

Section: Introductionmentioning

confidence: 99%

“…Illness representations may be guided by current and prior awareness of symptoms, or by social messages from perceived significant others or authoritative sources [28]. Processing of information occurs in three stages: representation, coping, and appraisal [14]. …”

Section: Introductionmentioning

confidence: 99%

“…Reviews of the literature have not reported on a trial that has used the SRM as a theoretical framework underpinning research into CrF in cancer survivors [36, 37]. Pertl et al [14] carried out a thematic discourse analysis on the ‘additional comments’ left by 73 fatigued cancer patients and survivors as part of a questionnaire study on CrF. However, it may be the case that the questionnaire primed comments on related topics.…”

Section: Introductionmentioning

confidence: 99%

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Cancer-related fatigue in post-treatment cancer survivors: application of the common sense model of illness representations

et al. 2016

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BackgroundCancer-related fatigue (CrF) is a common and disruptive symptom that may be experienced during and after cancer. Research into the subjective experience of fatigue in this group is required. The common sense model of self-regulation of health and illness (SRM) addresses personal beliefs or mental representations—whether medically sound or unsubstantiated— that a person holds about a health issue. The current study assesses if the SRM could be used as a theoretical framework for organizing the experiences of people with CrF, with a view to identifying methods to address fatigue in cancer survivors.MethodFour focus groups were held with a total of 18 cancer survivors who reported they experienced ‘significant fatigue or reduced energy.’ A thematic analysis was conducted within the framework of the SRM.ResultsFindings were aligned with the SRM, with participants discussing fatigue with reference to representation, coping, and appraisal of symptoms. In particular, the wider social context of CrF was frequently addressed. Perceived inadequacies in support available to those with lingering fatigue after the completion of cancer treatment were highlighted by the participants.ConclusionThis study explored the subjective experience of fatigue after cancer using the SRM. CrF should be approached as a complex psychosocial issue and considered from the patient perspective to facilitate better understanding and management of symptoms. The SRM is an applicable framework for identifying modifiable factors that could lead to improved coping with CrF in post-treatment cancer survivors.

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Cancer patients’ experiences with immune checkpoint modulators: A qualitative study

Ala‐Leppilampi

Baker

McKillop³

et al. 2020

Cancer Medicine

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Background: Minimal qualitative data exist on the experiences of cancer patients treated with immune checkpoint inhibitors or costimulatory antibodies.Understanding the day to day experiences of patients being treated with immune checkpoint modulators, and how these relate to their health-related quality of life, can inform future research and lead to better clinical decision-making and care. We report here the first in depth qualitative study to consider patients' diverse and complex experiences with immune checkpoint modulators, with a focus on side effects and how these impact daily life. Methods: This single-center qualitative study was based on focus groups and semistructured interviews. Patients who were being treated or who had been treated with immune checkpoint modulators within the last year for a range of cancer diagnoses were recruited. Interpretive description informed our inductive, iterative approach to analysis. Results: Eight themes were identified, characterizing the complexity of these patients' lived experiences: major categories of side effects experienced and how they impacted patient well-being; the heterogeneous nature of side effects experienced; living with uncertainty; reframing the meaning and severity of SEs; focus on survival, hope, and being positive; acceptance and adaptation; feeling supported; and faith in medical innovation. Throughout their accounts, participants highlighted the profound impact that immune checkpoint modulators had on their daily lives. Conclusion: This is the first in-depth qualitative study into patient accounts of their experiences of treatment with immune checkpoint modulators, related side effects, and how it impacted their daily lives. This research is an integral initial step in developing an instrument that will assess treatment-related side effects in patients treated with this form of therapy. |ALA-LEPPILAMPI Et AL. K E Y W O R D Scostimulatory antibodies, Health-related quality of life, immune checkpoint inhibitors, immunotherapy, patient experiences

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‘I’m not complaining because I’m alive’: Barriers to the emergence of a discourse of cancer-related fatigue

Abstract: 'Additional comments' are a rich source of data that can give insight into issues facing patients. Beyond the lack of recognition, support and interventions available for CRF, broader discourses of health, illness and cancer hamper communication regarding this side effect.

Cited by 39 publications

References 45 publications

Meanings of Breast Cancer Survivorship Among Members of Ethnically-Identified Support Groups

Meanings of Breast Cancer Survivorship Among Members of Ethnically-Identified Support Groups

Cancer-related fatigue in post-treatment cancer survivors: application of the common sense model of illness representations

Cancer patients’ experiences with immune checkpoint modulators: A qualitative study

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