Studying the social construction of cancer-related fatigue experience: The heuristic value of Ethnoscience (original) (raw)
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BMC Cancer, 2016
Background: Cancer-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. Method: Four 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. Results: Findings 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. Conclusion: This 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.
How Patients Experience and Give Meaning to Their Cancer-related Fatigue?
International Journal of Social Science Studies, 2013
Fatigue is a common experience occurring in 70% to 100% of advanced cancer patients with a great impact on quality of life and survival. Despite the complexity of this phenomenon, fatigue’s psychosocial dimensions are still not well understood. The aim of this study was to deepen how Italian patients perceive and give meaning to their cancer-related fatigue through the analysis of their language. The study was designed using ethnoscience, an approach that allows to explore how meaning is conveyed through language. We interviewed 16 cancer patients with different level of fatigue (5 mild, 5 moderate, 6 severe). The data analysis showed that fatigue affected three experiential dimensions (mind, body and interpersonal relationships) which are characterized by different symptomatic manifestations depending on the level of fatigue. Patients’ causal attributions also varied across levels of fatigue: patients with mild and moderate fatigue attributed their fatigue to psychological and contextual causes, whereas patients with severe fatigue attributed their fatigue to physical and medical causes. As fatigue affects multiple areas of patients' lives, this study suggests the importance of holistic treatments with a multidisciplinary approach able to support patient engagement and activation in their healthcare. This study also shows the importance of considering patients' causal attributions about fatigue, as these appeared to play a role in how patients managed fatigue. Finally, our data highlighted the importance of using a shared language when speaking with patients about fatigue as this may help patients to feel more understood and supported, thus also improving their quality of life and engagement in their care & cure process. Keywords: Cancer fatigue, Ethnoscience, psyco-oncology, patient engagement, qualitative research
Acta Oncologica, 2020
Objectives: The common sense model provides a theoretical framework for understanding substantial fatigue among (haematological) cancer survivors based on their illness perceptions. We therefore examined the associations between modifiable illness perceptions and substantial fatigue while controlling for sociodemographic, clinical, and psychological factors (symptoms of depression and anxiety) among haematological cancer survivors. Methods: Data from the population-based PROFILES registry were used. Survivors diagnosed between 1999 and 2013 with Hodgkin lymphoma (N ¼ 164), non-Hodgkin lymphoma (N ¼ 655) and chronic lymphocytic leukaemia (N ¼ 174) were included. Survivors completed the Brief Illness Perception Questionnaire (B-IPQ), the Fatigue Assessment Scale (FAS), and Hospital Anxiety and Depression Scale (HADS). Multivariable logistic regressions analyses were performed for the total group and three haematological cancers separately relating illness perceptions to substantial fatigue (>21 FAS). Results: Haematological cancer survivors with illness perceptions that represent more negative consequences (consequences, OR ¼ 1.27; 95%CI ¼ 1.13-1.42); attribute more symptoms to their illness (identity, OR ¼ 1.29; 95%CI ¼ 1.17-1.43); and have a poorer illness understanding (coherence, 1.13; 1.04-1.22) were more often substantially fatigued. For the remaining five illness perceptions, no significant association was found. Non-Hodgkin lymphoma survivors who reported a poor illness understanding (coherence, OR ¼ 1.35; 95% CI ¼ 1.06-1.72) and chronic lymphocytic leukaemia survivors who reported that treatment can control (OR ¼ 1.25; 95%CI ¼ 1.01-1.55) the illness experienced more often substantial fatigue. Conclusion: Those who experience more consequences of their disease, attribute more symptoms to their illness, and have a poorer illness understanding, have a higher risk to experience substantial levels of fatigue even years after diagnosis. Psychological interventions changing these illness perceptions may be beneficial in reducing fatigue among haematological cancer survivors.
Fatigue is a common experience occurring in 70% to 100% of advanced cancer patients with a great impact on quality of life and survival. Despite the complexity of this phenomenon, fatigue's psychosocial dimensions are still not well understood. The aim of this study was to deepen how Italian patients perceive and give meaning to their cancer-related fatigue through the analysis of their language. The study was designed using ethnoscience, an approach that allows to explore how meaning is conveyed through language. We interviewed 16 cancer patients with different level of fatigue (5 mild, 5 moderate, 6 severe). The data analysis showed that fatigue affected three experiential dimensions (mind, body and interpersonal relationships) which are characterized by different symptomatic manifestations depending on the level of fatigue. Patients' causal attributions also varied across levels of fatigue: patients with mild and moderate fatigue attributed their fatigue to psychological ...
Objective: Young patients who undergo heart transplantation (HTx) in their early childhood or adolescence are confronted with typical developmental problems affecting their adjustment to HTx. This study aims at evaluating patients' health related quality of life (HRQOL), integration at work, partnerships, family and social environment and determining noncompliance. The sample consists of 38 patients (19 females, 19 males) who were transplanted between age 1 and 17 and are now between 16 and 34 years (mean: 22.6 y). Methods: Patients received the Short-Form Health Survey (SF-36), Giessen Complaints List (GBB), Questionnaire for Social Support (F-SozU), Medication Experience Scale for Immunosuppressants (MESI), and Health Questionnaire for Children and Young People (KIDSCREEN). Further assessment was done by semistructured interviews directed at psychosocial outcome, compliance, relationship to family and peer-group and integration into the work environment. Results and Conclusions: The young heart transplant recipients showed a significantly reduced HRQOL (SF-36) in all psychological (p=.004) and somatic domains (p=.001). In the KIDCSREEN, patients emphasized a very close and satisfying relationship with their parents and pronounced overall social support. They felt well accepted at school or at work (FSozU). In contrast, almost 50% reported some reduced adherence and 29% are to be seen as a high risk group for nonadherence (MESI), simultaneously characterized by poor physical and mental status. Contradictory to the tests, in the interviews patients described considerable problems regarding school and work. In particular, patients who showed reduced compliance also reported marginal social support and trouble in accepting the new organ associated with emotional insecurity.
Psychology & Health, 2005
This longitudinal study examined the extent to which illness representations and disease indicators predict physical and psychological outcomes in patients with rheumatoid arthritis. Baseline data was collected on 75 women attending an out-patient clinic in the west of Ireland. Data was available for a final study sample of 52 at two-year follow-up. Disease status was assessed by physician ratings of joint involvement and laboratory indices of erythrocyte sedimentation rate and c-reactive protein. The Illness Perception Questionnaire and the Arthritis Impact Measurement Scale were administered during a semi-structured interview held at yearly intervals over a three-year period. In hierarchical regression analyses the illness representations accounted for 17-33% of the variance in measures of physical function, pain, depression and anxiety. All relationships were in the expected direction. Disease status explained 10-15% of the variance in illness related aspects of physical function and pain and predicted pain over time. Illness perceptions outweighed the impact of medical disease status on concurrent physical and psychological adjustment. Interventions based on understanding and modifying illness representations may prove useful in facilitating patient well-being.
Navigating severe chronic cancer-related fatigue: an interpretative phenomenological analysis
Psychology & Health
Objective: This article presents a phenomenological study on the embodied experiences of patients with Chronic Cancer-Related Fatigue (CCRF), aiming to better understand this complex phenomenon. Design: Data collection consisted of individual interviews with 25 participants who suffered from severe CCRF for at least three months after cancer treatment was finished. Main outcome measures: Against the theoretical background of philosophical phenomenology, we explored embodied experiences, incorporated temporal and spatial aspects of living with CCRF. We applied interpretative phenomenological analysis (IPA) to analyze the transcripts of the interviews. Results: Using IPA, we identified four themes on how chronic fatigue is experienced post-cancer: (1) Worn out; (2) Diminishment of one's 'I can'; (3) Invisibility; and (4) Regaining one's 'I can'. Conclusion: For clinical practice, these results imply that professionals could focus more on the role of the body and limitations of one's 'I can' when treating CCRF. By studying these embodied CCRF experiences in individual patients, future research could help personalize and optimize treatment.
Supportive Care in Cancer
Purpose The growing group of patients who suffer from chronic cancer-related fatigue (CCRF) after cancer have helpful and less helpful ways of responding to this long-lasting and disruptive problem. This qualitative study aimed to gain insight in essential elements of how patients respond to CCRF, with a focus on helpful responses to facilitate adaptation. Methods We conducted semi-structured interviews with a purposive sample of 25 participants who experienced severe CCRF for at least 3 months. Participants were recruited via media, patient associations, meetings, and health professionals until data saturation was attained. We used a topic guide with open-ended questions about lived experiences. Interpretative phenomenological analysis (IPA) was used for analysis of the transcripts. Results We identified five interrelated themes of how patients respond to CCRF: (1) discovering physical and emotional boundaries; (2) communicating support needs; (3) reorganizing and planning activiti...
Journal of Occupational Rehabilitation, 2008
Introduction: Musculoskeletal disorders are among the main causes of short-and long-term disability. Aim: Identify the methods for assessing multidimensional components of illness representations. Methods: An electronic literature search (French, English) from 1980 to the present was conducted in medical, paramedical and social science databases using predetermined key words. After screening titles and abstracts based on a specific set of criteria, sixty-four articles were reviewed. Results: Qualitative approaches for assessing illness representation were found mainly in the fields of anthropology and sociology and were based on the explanatory models of illness. The interviews reviewed were: the Short Explanatory Model Interview, the Explanatory Model of Illness Catalogue and the McGill Illness Narrative Interview. Quantitative approaches were found in the health psychology field and used the following self-administered questionnaires: the Survey of Pain Attitudes, the Pain Beliefs and Perceptions Inventory, the Pain Beliefs Questionnaire, the Fear-Avoidance Beliefs Questionnaire, the Implicit Model of Illness Questionnaire, the Illness Perception Questionnaire, including its derivatives, and the Illness Cognition Questionnaire. Conclusion: This review shows the actual use and existence of multiple interviews and questionnaires in assessing multidimensional illness representations. All have been used and/or tested in a medical context but none have been tested in a work disability context. Further research will be needed to determine their suitability for use in a work disability context.