Leventhal's Common Sense Model Research Articles

Illness perceptions of people living with chronic heart failure and limited community disease management

AbstractAimTo explore the cognitive representations and emotional responses to living with chronic heart failure of people receiving limited community disease management.BackgroundIndividuals living with heart failure face self‐care and emotional challenges due to the overwhelming nature of adapting to lifestyle changes, particularly in subtropical areas.DesignQualitative descriptive. We applied Leventhal's Common Sense Model of Self‐Regulation as the framework for interviews and analyses.MethodsTwenty patients with chronic heart failure were interviewed during a hospital admission for exacerbation of their condition in a tertiary hospital in Thailand.ResultsAnalysis of the components of Leventhal's model of cognitive representations of illness revealed two themes relating to Illness Identity: (1) lack of knowledge of the diagnosis and how to recognise symptoms of the disease, and (2) recognition of symptoms of an exacerbation of CHF was based on past experience rather than education. These resulted in delays responding to cardiac instability and confusion about the intent of treatment. Participants recognised the chronicity of their disease but experienced it as an unrelenting cycle of relative stability and hospitalisations. Perceived Controllability was low. Two themes were: (1) Low perceived trust in the efficacy of medical treatment and lifestyle changes, and (2) Low perceived trust in their ability to comply with recommended lifestyle changes. The Consequences were significant emotional distress and high burden of disease. The two themes of emotional responses were (1) Frustration and hopelessness with the uncertainty and unpredictability of the disease, and (2) Sense of loss of independence, functional capacity and participation in life's activities.ConclusionChronically ill patients need support to understand their illness and make better treatment and lifestyle decisions. Improving patients' self‐efficacy to manage treatment and symptom fluctuations has the potential to improve their mental well‐being and minimise the impact of their condition on suffering and participation in employment and community.Implications for the Profession and/or Patient CareLeventhal's Common Sense Model of Self‐Regulation can be used to examine cognitive and emotional elements of illness perceptions, which link to individuals' ability to make informed decisions about disease management and influence health behaviours. Understanding illness perceptions underpins strategies for enhancing and sustaining self‐management behaviours.ImpactThe study findings accentuate the need to establish long‐term condition support programs in low‐middle income countries where the burden of heart failure is increasing exponentially.Reporting MethodThe Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to explicitly and comprehensively report our qualitative research.Patient or Public ContributionPatients contributed to the conduct of the study by participating in the data collection via face‐to‐face interviews.

Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of postural orthostatic tachycardia syndrome (POTS): An inductive approach.

Postural orthostatic tachycardia syndrome (POTS) is a debilitating and under-recognized condition of the autonomic nervous system. This study applied Leventhal's Common-Sense Model of Illness Representations to explore the journey to a diagnosis of POTS and to understand its relevance to poorly understood conditions which have common comorbidities. An inductive qualitative approach was used to explore the processes by which patients formulate explanations and management of symptoms within the search for a diagnostic label and to investigate illness identity in the context of existing diagnoses or multimorbidity. Participants (n = 29) for this nested qualitative study were recruited from a larger longitudinal study of people who had been newly referred to a specialist POTS service. Semi-structured interviews were conducted via video call. Three researchers coded and analysed data using Reflexive Thematic Analysis and elements of Grounded Theory. The analysis resulted in three overarching themes: 'Seeking physiological coherence and validation', 'Individual persistence', and 'Navigating the cumulative burden'. 'Accessibility and disparities of health care' was noted as a contextual factor. Receiving a POTS diagnosis was regarded by participants as providing legitimacy and increased access to treatment. Overall, delays in the diagnostic journey and the lack of a clear diagnosis impacted negatively on patients through increased uncertainty and a lack of clear guidance on how to manage symptoms. Findings also suggested there were great complexities in assigning symptoms to labels in the context of multimorbidity. Participants' stories highlighted the urgent need for better recognition of POTS so that the self-regulatory process can be initiated from the early stages of symptom detection.

Chinese Oral Cancer Patients' Pain Beliefs: An Application of Leventhal's Common-Sense Model

BackgroundPatients' pain beliefs are the main obstacle to effective pain management. Assessing and correcting negative perceptions is important for improving pain intensity and quality of life of patients with cancer pain. AimsTo explore pain beliefs among oral cancer patients using the Common-Sense Model of Self-Regulation as a theoretical framework. The primary components of the model, cognitive representations, emotional representations, and coping responses, were examined. DesignA qualitative method was used. Settings Participants/Subjects MethodsSemi-structured, qualitative, in-depth interviews were conducted with patients newly diagnosed with oral cancer in a tertiary care hospital. The interviews were analyzed using thematic analysis. ResultsInterviews with 15 patients revealed that the pain beliefs of patients with oral cancer included three themes: pain cognitive representations of oral cancer, pain emotional representations of oral cancer, and pain coping responses. ConclusionsNegative pain beliefs are common among oral cancer patients. This novel application of the self-regulatory model demonstrates that it can be used to capture the key pain beliefs (i.e., cognitions, emotions, and coping responses) of oral cancer patients within a single, unifying framework.

Illness perceptions of occupational hand eczema in German patients based on the common-sense model of self-regulation: A qualitative study.

Occupational skin diseases (OSD) in the form of hand eczema (HE) are a common work-related disease. Illness perceptions as presented in Leventhal's Common-Sense Model (CSM) are important for patients' self-management of diseases. Understanding these illness perceptions is essential for patient communicating. No quantitative or qualitative studies which investigated subjective illness perceptions in patients with occupational HE utilized the CSM as theoretical framework. The Objective of this study is to investigate illness perceptions of patients with occupational hand eczema (HE) using the CSM. We applied an exploratory qualitative approach and conducted purposive sampling. Thirty-six patients with occupational HE were interviewed using an interview guide based on the dimensions of the CSM, including coherence and emotional representation. All participants participated in a three-week inpatient program at a clinic specialized on occupational dermatology. One interview had to be excluded before analysis, since one participant's diagnosis was retrospectively changed from ICD to tinea and hence did not match the inclusion criteria. Thirty-five interviews were transcribed verbatim and analyzed. Data was analyzed deductively and inductively using qualitative text analysis. MAXQDA 2018 (Verbi, Berlin, Germany), a software for qualitative data analysis, was applied for coding and summarizing of results. All dimensions of the CSM were explored for occupational HE. Several sub-categories could be identified. Participants named a variety of causes in different areas (e. g. external irritants and other hazardous factors, psycho-social factors, allergies, having a 'bad immune system' or lifestyle). The great impact of the disease on the participants' life is shown by the wide range of consequences reported, affecting all areas of life (i. e. psychological, physical, occupational, private). Considering coherence, an ambivalence between comprehensibility and non-comprehensibility of the disease is apparent. The complexity of illness perceptions presented in this paper is relevant for those involved in HE patient education and counseling, e. g, health educators, dermatologists, and, occupational physicians. Future research might further investigate specific aspects of illness perceptions in patients with occupational HE, especially considering the complexity of coherence and overlapping dimensions (i. e. emotional representation and psychological consequences).

Barriers and enablers to help-seeking behaviour for mental health reasons among community dwelling older adults with anxiety: Mixed-methods systematic review

• There is no one model that can depict the complexity of help-seeking behaviour. • Help-seeking is affected by contextual, interpersonal and individual factors. • Help-seeking represents a dynamic self-regulatory system. • Individual need factors play an important role in help-seeking. • Coherence between representations of illness, actions, immediate and higher-order goals is important. Despite their high prevalence and negative consequences, anxiety disorders in older adults remain underdiagnosed and undertreated, creating an ‘anxiety treatment gap’. To address this treatment gap, it is essential to identify barriers and enablers to help-seeking behaviour among this population. This mixed-methods systematic review used Andersen's Model and Leventhal's’ Common Sense Model (CSM) in a “best-fit” framework synthesis to explore barriers and enablers to help-seeking behaviour for mental health reasons among older adults with anxiety. A comprehensive search of six databases, last updated on 6 April 2022, led to the inclusion of thirteen records published 2011-2022. Quantitative data were synthesised using Andersen's Model, summarised using vote counting based on direction of effect, and focused mainly on factors at the individual level. Qualitative synthesis generated an extended conceptual model which includes a priori themes derived from Andersen's Model and Leventhal's CSM and new themes identified via inductive analysis. The role of individual need factors on help-seeking behaviour was corroborated by both quantitative and qualitative evidence. The overarching theme is ‘coherence’ as a multilevel concept. It was not possible to aggregate effect estimates extracted from quantitative records. The internal validity of the review is affected by scant evidence, quality of the qualitative records and lack of triangulation of evidence. There is no one model that can depict the complexity of help-seeking behaviour among older adults with anxiety. A better understanding of the role of need factors and the multi-level concept of ‘coherence’ on help-seeking behaviour is required. Conceptual Model representing the elements, phases and processes underlying illness-seeking behaviour among older adults with anxiety (print in colour)

Psychological processes in adapting to dementia: Illness representations among the IDEAL cohort.

How people understand and adapt to living with dementia may influence well-being. Leventhal’s Common Sense Model (CSM) of Self-Regulation provides a theoretical basis for exploring this process. We used cross-sectional and longitudinal data from 1,109 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort. We elicited dementia representations (DRs) using the Representations and Adjustment to Dementia Index (RADIX), a validated measure based on the CSM, identified groups sharing distinct DR profiles, and explored predictors of group membership and associations with well-being, and whether problem-focused coping played a mediating role in these associations. We identified four DR classes: people who see the condition as a disease and adopt a diagnostic label; people who see the condition as a disease but refer to symptoms rather than a diagnostic label; those who see the condition as part of aging; and those who are unsure how to make sense of the condition. A fifth group did not acknowledge any difficulties. “Disease” representations were associated with better cognition and younger age, while “aging” and “no problem” representations were associated with better mood and well-being. The association with well-being remained stable over 24 months. There was limited partial support for a mediating role of problem-focused coping. Variations in DRs may reflect individual differences in the psychological processes involved in adjusting to dementia. DRs provide a framework for personalizing and tailoring both communications about dementia and interventions aimed at supporting people in coping with dementia. There is a need to debate what constitutes a positive DR and how its development might be encouraged.

Mediating Effect of Illness Perception on Psychological Distress in Patients With Newly Diagnosed Gastric Cancer: Based on the Common-Sense Model of Self-regulation.

A cancer diagnosis is a life-threatening event, but studies on psychological distress in patients with cancer after diagnosis are relatively limited, particularly those in early-stage cancer. On the basis of Leventhal's common-sense model of self-regulation, this study examined the mediating effects of illness perception on psychological distress and identified the factors influencing illness perception in patients with newly diagnosed gastric cancer. A cross-sectional survey was conducted, and a mediation analysis was performed to determine the role of illness perception in the relationship between social support, the presence of physical symptoms, satisfaction with patient education, and psychological distress. Participants were 184 patients with recently diagnosed early gastric cancer who are waiting for surgery in a tertiary hospital in Seoul, Korea. The population had a moderate level of psychological distress. Social support, physical symptoms, and satisfaction with patient education significantly influenced illness perception (β = -0.14, P = .048; β = 0.18, P = .015; β = -0.17, P = .019, respectively), and illness perception had a full mediation effect between these 3 variables and psychological distress (β = 0.66, P < .001). Healthcare providers need to focus on patients' psychological distress following a diagnosis of cancer because this distress could be easily overlooked in clinical settings, even in patients with early-stage cancer. Healthcare providers might alleviate patients' psychological distress by improving unrealistic illness perceptions, alleviating physical symptoms, and providing clear and sufficient patient education in patients with cancer after diagnosis.

The common-sense model and mental illness outcomes: A meta-analysis.

Psychotherapists can improve their patients' outcomes during and after therapy by improving patients' self-management. Patients who do not effectively manage their mental illness generally have worse outcomes. Leventhal's Common-Sense Model of Self-Regulation theorizes that patients' perceptions of their illness (illness representations) guide their self-management, influencing health outcomes. The present study quantified the relations between illness representations, self-management and outcomes for mental illnesses. We conducted a meta-analysis and included articles if they reported (1) on adults with mental illnesses and (2) the correlation between mental illness representations and mental illness outcomes. Twenty-five articles were included which represented 28 independent samples. The pattern of correlations among illness representations (identity, consequences, timeline, control, coherence and emotional representations), self-management strategies (attendance, engagement and adherence to treatment) and mental illness outcomes (symptom severity and quality of life) was consistent with analyses from previous studies of mental and physical illnesses. The results found threat-related illness representations mostly had a large relationship with worse mental illness outcomes and self-management. Protective illness representations had a small-to-large relationship with better mental illness outcomes and self-management. The results suggest patients' perceptions of their mental illness may be a critical indicator of their mental illness outcomes, including symptom severity and quality of life. This theory-driven meta-analysis supports calls for the inclusion of illness representations in psychotherapy for mental illness.

Psychological factors influencing emotional reactions to gestational trophoblastic disease: The role of coping mechanisms and illness perception

Referring to Leventhal's common-sense model, this observational cross-sectional study aimed at investigating the relationship between illness mental representations, coping mechanisms and psychological distress in a sample of women with gestational trophoblastic disease (GTD). Thirty-eight women diagnosed with GTD (18 with hydatidiform mole; 20 with gestational trophoblastic neoplasia) were asked to complete the Illness Perception Questionnaire-Revised, the Coping Orientation to the Problems Experienced, the State-Trait Anxiety Inventory-Form Y and the Beck Depression Inventory-Short Form. Demographic and clinical information was collected through a self-report questionnaire. The sample did not report significant symptomatic distress in relation to GTD. Correlation analysis showed that the Emotional representations subscale of the Illness Perception Questionnaire-Revised was significantly associated with both state anxiety and depression; avoidant coping significantly and positively correlated with anxiety and depression, as well as with illness emotional representations. Mediation analysis revealed significant indirect effects of avoidant coping on both anxiety and depression through the mediation of emotional representations. Avoidant coping could lead women to develop emotional representations of illness characterised by negative affects, which in turn enhance distress levels. Results underline the importance to promote adaptive coping strategies, along with accurate illness perceptions, to foster better psychological adjustment to GTD.

Self‐concept and health anxiety relate to psychological outcomes for BRCA1/2 carriers

Leventhal's common sense model of self-regulation highlights how specific beliefs about illness influence psychological outcomes. Little is known on how such beliefs relate to BRCA1/2 adjustment. Furthermore, beliefs about one's self-concept may be relevant to genetic conditions and may relate to psychological wellbeing. One-hundred and eighteen female BRCA1/2 carriers from an Irish University Hospital completed questionnaires for this cross-sectional study. Outcomes measured were state anxiety and physical and mental health-related quality of life (HRQOL). Explanatory variables included sociodemographics, health anxiety, illness perceptions, coping and self-concept. Hierarchical multiple regression analyses were conducted. Then, 44% of participants had clinically significant state anxiety and 12% had clinically significant health anxiety. Vulnerability, stigma, mastery and health anxiety explained 42% of the variance in state anxiety. Previous mental health difficulty, vulnerability, stigma, mastery and health anxiety explained 40% of the variance in mental HRQOL. Dysfunctional coping strategies were strongly related to the physical functioning aspect of quality of life. BRCA-specific beliefs related to self and health anxiety are important factors to consider in the adjustment to BRCA1/2 confirmation.

Examining Predictors of Fear of Cancer Recurrence Using Leventhal's Commonsense Model: Distinct Implications for Oncology Nurses.

Fear of cancer recurrence (FCR) is a common concern for survivors. Oncology nurses have a unique opportunity to identify survivors at increased risk of heightened FCR. Understanding predictors of FCR would be useful for this purpose; however, results about FCR predictors are inconsistent. To examine empirically inconsistent predictors of FCR as guided by Leventhal's Commonsense Model. A cross-sectional survey design was used to assess FCR, sociodemographic and clinical characteristics, and characteristics of the self (self-esteem and generalized expectancies) among cancer survivors. Structural equation modeling was used to examine predictors of FCR. Among 1001 participants, the mean time since diagnosis was 9.07 years, and most were diagnosed with breast cancer (65.93%). The strongest predictor of higher FCR was belief that knowing someone with a recurrence affects one's own level of FCR, although knowing someone with a recurrence actually predicted lower FCR. Other significant predictors of higher FCR were having 1 or more symptoms attributed to cancer, lower self-esteem, younger age, female gender, lower pessimism, longer time since diagnosis, and active follow-up at the survivorship clinic. Cancer survivors' perceptions are among an important series of variables that may predict higher levels of FCR. Oncology nurses are uniquely situated to identify the subset of cancer survivors with levels of FCR requiring professional intervention. Oncology nurses can use the predictors indicated in this study to identify survivors with greatest need for coping with FCR to facilitate expedient intervention and/or referral to psychosocial providers.

Patients' Illness Perceptions of Type 2 Diabetes: A Scoping Review.

People's personal perceptions, or illness representations, of type 2 diabetes can act as barriers to successful self-management. Understanding patients' subjective perceptions of type 2 diabetes can aid the design of evidence-based care and appropriate educational programmes. This scoping review provides a narrative account of previous knowledge of patients' illness representations of type 2 diabetes. Quantitative and qualitative studies that explored patients' illness representations of type 2 diabetes, as defined by Leventhal's Common Sense Model, were included. Thirty four studies were identified for this review, but only 14 studies were carried out in a general population of people with diabetes. Illness representations varied across study populations. While it is clear that the perceptions of ethnic minorities and marginalised groups are embedded in their historical and cultural backgrounds, it is also important to understand the views of the wider population. The review highlights the need for self-management interventions to reflect the target population's representations of type 2 diabetes in order to inform interventions and clinical practice.

Illness perceptions as predictors of psychological distress among head and neck cancer survivors: a longitudinal study.

Leventhal's commonsense model implies illness perceptions influence illness outcomes. This study examined illness perceptions among head and neck cancer survivors, and whether these predicted subsequent psychological distress. A total of 124 survivors of head and neck cancer (87% nasopharyngeal carcinoma; NPC) completed measures of psychological distress (Hospital Anxiety and Depression Scale; HADS), illness perceptions (Brief Illness Perception Questionnaire; B-IPQ), dispositional optimism (revised Chinese version of the Life Orientation Test; C-LOT-R), and clinical and demographic data approximately12.9 months after diagnosis (T1). Six months later (T2) psychological distress (HADS) was again measured. Adjusted multivariate analyses tested whether illness perceptions predicted T2 HADS scores. Illness perception dimensions were significantly intercorrelated (0.01-0.68), explaining 8.0% of anxiety and 4.8% of depression symptom variability at T2. After adjustment for T1 distress, illness identity (β = 0.270, P < .01) and sex identification as a woman (β = 0.275, P < .01) predicted T2 anxiety symptoms while illness identity (β = 0.195, P < .05), unemployment (β = 0.195, P < .05), and pessimism (β = -0.227, P < .01) predicted T2 depression symptoms. Perceived illness identity predicted psychological distress, accounting for modest levels of distress variance. Unresolved symptoms may exacerbate distress.

Towards the validation of a new, blended theoretical model of fear of cancer recurrence.

Fear of cancer recurrence (FCR) is defined as "fear, worry, or concern about cancer returning or progressing". To date, only the seminal model proposed by Lee-Jones and colleagues has been partially validated, so additional model testing is critical to inform intervention efforts. The purpose of this study is to examine the validity of a blended model of FCR that integrates Leventhal's Common Sense Model, Mishel's Uncertainty in Illness Theory, and cognitive theories of worry. Participants (n=106) were women diagnosed with stage I to III breast or gynecological cancer who were enrolled in a Randomized Controlled Trial of a group cognitive-existential intervention for FCR. We report data from standardized questionnaires (Fear of Cancer Recurrence Inventory-Severity and Triggers subscales; Illness Uncertainty Scale; perceived risk of recurrence; Intolerance of Uncertainty Scale; Why do people Worry about Health questionnaire; Reassurance-seeking Behaviors subscale of the Health Anxiety Questionnaire, and the Reassurance Questionnaire) that participants completed before randomization. Path analyses were used to test the model. Following the addition of four paths, the model showed an excellent fit (χ2=13.39, P=0.20; comparative fit index=0.99; root mean square error of approximation=0.06). Triggers, perceived risk of recurrence, and illness uncertainty predicted FCR. FCR was associated with maladaptive coping. Positive beliefs about worrying and intolerance of uncertainty did not predict FCR but led to more maladaptive coping. These results provide support for a blended FCR model.

Making Sense of Low Back Pain and Pain-Related Fear.

Synopsis Pain-related fear is implicated in the transition from acute to chronic low back pain and the persistence of disabling low back pain, making it a key target for physical therapy intervention. The current understanding of pain-related fear is that it is a psychopathological problem, whereby people who catastrophize about the meaning of pain become trapped in a vicious cycle of avoidance behavior, pain, and disability, as recognized in the fear-avoidance model. However, there is evidence that pain-related fear can also be seen as a common-sense response to deal with low back pain, for example, when one is told that one's back is vulnerable, degenerating, or damaged. In this instance, avoidance is a common-sense response to protect a "damaged" back. While the fear-avoidance model proposes that when someone first develops low back pain, the confrontation of normal activity in the absence of catastrophizing leads to recovery, the pathway to recovery for individuals trapped in the fear-avoidance cycle is less clear. Understanding pain-related fear from a common-sense perspective enables physical therapists to offer individuals with low back pain and high fear a pathway to recovery by altering how they make sense of their pain. Drawing on a body of published work exploring the lived experience of pain-related fear in people with low back pain, this clinical commentary illustrates how Leventhal's common-sense model may assist physical therapists to understand the broader sense-making processes involved in the fear-avoidance cycle, and how they can be altered to facilitate fear reduction by applying strategies established in the behavioral medicine literature. J Orthop Sports Phys Ther 2017;47(9):628-636. Epub 13 Jul 2017. doi:10.2519/jospt.2017.7434.

Characteristics and Correlates of Caregivers' Perceptions of Their Family Members' Memory Loss.

Understanding caregiver's perceptions of their family member's memory loss is a necessary step in planning nursing interventions to detect and address caregiver burden. The purpose of this study was to characterize caregivers' perceptions of their family members' memory loss and identify potential correlates within Leventhal's common sense model (CSM). This secondary analysis used baseline data from a larger randomized controlled trial. Patients with memory loss and their caregivers (N = 83 dyads) from the community were included. The adapted Brief Illness Perception Questionnaire (BIPQ) assessed caregivers' illness perceptions. Eight additional instruments measured correlates within the CSM. Responses were described; multiple linear regression was used to predict BIPQ dimension scores, and logistic regression was used to predict dichotomized BIPQ scores. Most caregivers were female, White, and spouses of the patients; they reported a range of perceptions on the nine BIPQ dimensions. Patients' cognitive function consistently emerged as a significant correlate of caregivers' illness perceptions, explaining the most variance in caregivers' perceived consequences, identity, and treatment control (p < .01). Caregivers' reactions to patients' behavioral symptoms and caregivers' trait anxiety were associated with perceived illness coherence (p < .01). Caregivers with higher severity of daily hassles and White caregivers perceived that their family members' memory loss would last longer (p < .001). Caregivers' perceptions of family members' memory loss varied; distinct dimensions of caregivers' illness perception were associated with a range of clinical and psychosocial factors. This exploratory study demonstrates the complexity of applying the CSM to caregivers of persons with memory loss.

Understanding Self-regulation Behaviors in South Asians With Coronary Artery Disease: A Mixed-Methods Study.

South Asians (SAs) have a well-documented risk for mortality related to coronary artery disease (CAD). However, there is a lack of evidence to guide the implementation and dissemination of primary and secondary interventions to control and deter progression of CAD in SAs. The aim of this study is to explore and describe self-regulation behaviors in SAs with CAD using Leventhal's Common Sense Model. In this mixed-methods study, quantitative data were collected using 3 survey questionnaires (demographics, Illness Perception Questionnaire-Revised, and Coping/Self-Regulation Behaviors). Before completing the surveys, a subset of the sample (n = 20) participated in individual face-to-face or telephone interviews. A total of 102 SAs were enrolled (age, 53.5 ± 9.98 years). On average, participants rated themselves high (63 ± 3.06) on negative perceptions. In addition, they discussed desi diet, stress, a lack of physical activity, ignoring symptoms, and kismet (fate) as the most important perceived causes of their CAD. Most of the participants modified their lifestyle after their CAD event. Participants expressed regret for not having changed their lifestyle earlier when they were experiencing early symptoms of their CAD. Findings from this study enhance the understanding of self-regulation behaviors of SAs with CAD. Ultimately, these findings will inform the development and implementation of targeted interventions that address culture-specific lifestyle modification for SAs with CAD.

Abstract A55: Assessing the applicability of leventhal's common sense model of illness representation to explain african american prostate cancer survivors' disease experiences and disease Management Strategies

Abstract Background: Culture has a major influence on many aspects of health in general, and cancer prevention and control in particular. Culture influences the receptiveness of consensus and evidence-based risk reduction strategies across the continuum of care. Culture also provides men with templates for interacting with clinicians and the health care system. Over the past two decades, medical and public health practitioners have devoted a great deal of attention to understanding how African American culture influences the multi-level processes that create or maintain prostate cancer treatment disparities. The current study adds to this growing body of literature by exploring the usefulness of Leventhal's Common Sense Model (CSM) of Illness Representation to explain the content and structure of African American prostate cancer survivors' narratives of their disease process and disease management strategies. Narrative structure was evaluated using the five illness representation domains of the CSM (i.e., cause, control/cure, consequences, identity, and, timeline). Narrative content was explored using investigator created sub-themes representing each illness representation domain. Methods: A purposive sample of prostate cancer survivors was recruited via cancer registries, word-of-mouth and newspaper advertisements in New York and Georgia from 2013 to 2014. Survivors were eligible to participate if they were diagnosed with localized prostate cancer (T1 or T2), able to speak and understand English, and self-identified as African American. Each participant completed a semi-structured, in-depth interview with a graduate trained interviewer. All men provided written informed consent and received a $50 incentive for their participation. Each interview was audiotape recorded, transcribed verbatim by a professional transcriptionist and entered into MAXQDA12 software for data management and analysis. All transcribed interviews were coded independently by a three-member team until a minimum of 80% coding agreement was reached. Results: A total of 15 men completed in-depth interviews. All interviews lasted between 30 - 90 minutes. With regard to narrative structure, survivors provided descriptions characterizing all five of the illness representation domains. More survivors provided descriptions relating to causes and consequences, while fewer provided descriptions related to the timeline domain. With regard to coping, many interviewees reported that it was challenging to simultaneously develop a treatment care plan while managing their emotions. Most descriptions of the consequences centered around concerns men had related to treatment rather than having the disease. Several interviewees expressed concerns about limitations placed on their personal and social relationships as a result of treatment complications. With regard to emotional coping, men reported a variety of adaptive and maladaptive strategies including acceptance, avoidance, humor, religion, and shared decision-making with family members and significant others. Despite these concerns, most men were grateful to be alive and were optimistic about their prognosis. Conclusion: The results of this research suggest that the CSM can be used to explain African American prostate cancer survivors' experiences with treatment care planning and coping. Future research should elucidate culturally acceptable strategies to help men simultaneously develop treatment plans and deal with the emotional aspect of having this disease. Future research should also focus on identifying similarities and differences between African American and White survivors using the CSM to determine if unique or one-size-fits all interventions are sufficient. Citation Format: Jarrett Johnson, Sarbesh Pandeya, Ahmed Kabore, Levi Ross. Assessing the applicability of leventhal's common sense model of illness representation to explain african american prostate cancer survivors' disease experiences and disease Management Strategies. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A55.

Protocol for a cluster randomised trial of a communication skills intervention for physicians to facilitate survivorship transition in patients with lymphoma

IntroductionSurvivors of cancer often describe a sense of abandonment post-treatment, with heightened worry, uncertainty, fear of recurrence and limited understanding of what lies ahead. This study examines the efficacy of...

Mental Representations of Illness in Patients with Gestational Trophoblastic Disease: How Do Patients Perceive Their Condition?

BackgroundGestational Trophoblastic Disease comprises a group of benign and malignant disorders that derive from the placenta. Using Leventhal’s Common-Sense Model as a theoretical framework, this paper examines illness perception in women who have been diagnosed with this disease.MethodsThirty-one women diagnosed with Gestational Trophoblastic Disease in a hospital in Italy were asked to complete the Illness Perception Questionnaire-Revised to measure the following: illness Identity, illness opinions and causes of Gestational Trophoblastic Disease.ResultsHigh mean scores were observed in the Emotional representations and Treatment control subscales. A significant difference emerged between hydatidiform mole patients and those with gestational trophoblastic neoplasia on the Identity subscale. A significant correlation emerged between “time since diagnosis” and the Treatment control subscale.DiscussionThis study is the first to investigate illness perception in Gestational Trophoblastic Disease. From a clinical perspective the results highlight the need for multidisciplinary support programs to promote a more realistic illness perception.