Experiences and perspectives of suffering in cancer: A qualitative systematic review

Iskandar, Ayuk Cucuk; Rochmawati, Erna; Wiechula, Rick

doi:10.1016/j.ejon.2021.102041

Cited by 14 publications

(6 citation statements)

References 41 publications

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“…This is commensurate with previous work in head and neck cancer, which identified sub-groups of patients across the survivorship trajectory, including those who viewed their diagnosis in the past tense and had ‘psychologically left their illness behind' (Isaksson et al, 2016). In a qualitative systematic review, however, Iskandar et al (2021) found that patients with cancer often experienced physical and psychological difficulties at all stages of the cancer trajectory. Indeed, our group of participants was a median of 3 years since diagnosis and it may be that this time trajectory reflects the distress experienced at diagnosis had resolved.…”

Section: Discussionmentioning

confidence: 99%

‘I Had It. I Don’t Think I Have It…But I Do Feel It Will Come Back Somewhere’: A Qualitative Investigation of the Experience of People With Non-Muscle Invasive Bladder Cancer

et al. 2023

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Very little is known about the impact of living with non-muscle invasive bladder cancer (NMIBC). NMIBC patients’ experiences of their illness–in terms of their perceptions, coping strategies and psychological wellbeing–were explored. This study describes an interpretative phenomenological analysis (IPA) of individuals’ accounts of living with NMIBC while on routine surveillance for cancer recurrence. Ten individuals took part in face-to-face semi-structured interviews. Three superordinate themes were derived from the data. The first theme, Being Diagnosed and Treated for NMIBC, concerned the observation that participants considered the physical implications, timeline and practicalities of their illness of primary importance and focused less on its psychological aspects. The second theme, Grappling with the Illness, outlined the impact of the doctor–patient relationship. The final theme, ‘I don’t treat it as a problem. I treat it as an issue’, delineated how participants managed difficult emotions in the context of the illness. Findings from this study demonstrated that participants generally found effective ways to cope with their illness and experience of ongoing surveillance, though delay of emotional responses was common. Clinical implications for healthcare professionals are outlined including the importance of high-quality communication with the urology team.

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Section: Discussionmentioning

confidence: 99%

‘I Had It. I Don’t Think I Have It…But I Do Feel It Will Come Back Somewhere’: A Qualitative Investigation of the Experience of People With Non-Muscle Invasive Bladder Cancer

et al. 2023

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“…Given that FCR was identified as the main problem for Louise, our data nicely illustrate the complexity of the lived cancer experience (Iskandar et al, 2021), impacting different areas of life (personal, professional, family), for a long period of time, and connecting to past experiences and to the prospect of future life. Cancer experience thus often includes a succession of multiple stressful and potentially traumatic events, namely diagnosis, treatment and post-treatment/survivorship stages (Cordova et al, 2017), which may be exacerbated by precancer psychological vulnerabilities (Connolly, 2016).…”

Section: Phase 4: Consolidation: Maintenance or Endingmentioning

confidence: 65%

Developing an emotion‐focused therapy model for fear of cancer recurrence: A case‐level task analysis

Almeida

Elliott

Silva

et al. 2023

Couns and Psychother Res

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Fear of cancer recurrence (FCR) involves anxiety about the possible return or progression of the disease. It is common among people surviving cancer, covering a range of adaptive and maladaptive responses including clinical presentations of FCR, for which different psychological interventions have been developed, most within the cognitive‐behavioural paradigm. Recently, emotion‐focused therapy (EFT) has been proposed as an alternative and has been the subject of research focusing on the cancer population and cancer‐related issues, including FCR. In this study, we looked closely at a successful case from a larger exploratory study, carrying out a discovery‐phase task analysis aimed at identifying the main components of EFT–FCR. We found that this approach generally followed the usual structure of an EFT intervention, with four distinct phases. However, we identified some specific secondary processes (e.g., hypervigilance and catastrophising) and clarified the nature of the core pain in this presentation as existential (e.g., fear of dying).

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“…Indeed, systematic review of studies conducted on the lived experience of patients and/or caregivers indicate these generally being underpinned by interpretative tradition and either thematic or phenomenological analysis. 15 Thematic analysis offers great flexibility as a method and is particularly useful for as a first step. Additionally, constant comparison can facilitate detection of patterns of commonalities of experience across the dataset, adding rigor to the analytic process.…”

Section: A Value Of Qualitative Approaches In Understanding Lived Exp...mentioning

confidence: 99%

Understanding the Value of Alleviating Health-Related Suffering and Palliative Care Centered in Lived Experience: The SAVE Toolkit

Bhadelia,

Greaves,

Doubova

et al. 2023

Preprint

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Health-related suffering generated by life-limiting or life-threatening conditions is a complex phenomenon inextricably linked with human experience. Most of this suffering can be ameliorated with access to quality palliative care that is not available in most parts of the world, especially low-resource settings. Some exploration of the definitional boundaries of and needs pertaining to health-related suffering suggests that patients and families assign importance to the compassionate and supportive aspects of palliative care. However, the value of alleviating health-related suffering to patients and caregivers has not been systematically studied and limited to high-income contexts. Comprehensive evidence can support the overall investment case for expanding access to palliative care worldwide. The SAVE (Suffering Alleviation and the Value of Experiential knowledge) Toolkit provides a protocol and qualitative instrument to examine the value assigned to suffering alleviation based on lived experience. Informed by literature reviews, deliberation of a global expert group on limitations of quantitative measurement of suffering, and piloting in two countries – Barbados and Mexico – the SAVE Toolkit can contribute to a body of evidence that is anchored by experiential knowledge of the illness trajectory to advance people-centered health policy and systems research. The Toolkit, a part of broader work in follow-up to the Lancet Commission on Global Access to Palliative Care and Pain Relief, incorporates guidance on qualitative evidence generation and its importance to understanding lived experience. Finally, implications for health systems responsiveness and high-value healthcare are discussed alongside opportunities for future research.

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Experiences and perspectives of suffering in cancer: A qualitative systematic review

Cited by 14 publications

References 41 publications

‘I Had It. I Don’t Think I Have It…But I Do Feel It Will Come Back Somewhere’: A Qualitative Investigation of the Experience of People With Non-Muscle Invasive Bladder Cancer

‘I Had It. I Don’t Think I Have It…But I Do Feel It Will Come Back Somewhere’: A Qualitative Investigation of the Experience of People With Non-Muscle Invasive Bladder Cancer

Developing an emotion‐focused therapy model for fear of cancer recurrence: A case‐level task analysis

Understanding the Value of Alleviating Health-Related Suffering and Palliative Care Centered in Lived Experience: The SAVE Toolkit

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