This is what life with cancer looks like: exploring experiences of adolescent and young adults with cancer using two visual approaches

Introduction Talking about illness experience can be challenging for adolescents and young adults (AYAs) with cancer. Visual tools, in addition to spoken language, might make this easier, such as rich pictures and photovoice. We aimed to obtain a comprehensive view of the cancer experience of AYAs by using rich pictures and photovoice. Methods AYAs (18–35 years old) who had any type of cancer, or were in remission from cancer, were eligible. AYAs drew rich pictures about their experience of living with cancer and explained these during subsequent interviews. Some of the AYAs also participated in photovoice and spent two days with a photographer to make photos about their illness experience. Rich pictures and photos were first analyzed separately, using open coding, after which the identified themes were compared. Results Twelve AYAs made rich pictures (RPs), of whom seven also participated in photovoice. The two most predominant themes emerging from the data were struggles related to the future and defining one’s identity. The AYAs expressed concerns for the future related to relationships, education, and employment. Relating to defining one’s identity, many AYAs expressed that the cancer had a negative impact on their body- and self-image. The main themes were visible in the RPs as well as in the photovoice; however, subtle differences in sub-themes were found. Conclusions We found that cancer has an effect on many aspects of AYAs’ lives. Further research on how the identified themes play a role in the lives of AYAs with cancer is needed.

An auto-ethnographic reflection on the nature of nursing in the UK during the Covid-19 pandemic

In this article I discuss the effects on the patient experience of isolation nursing during the CoronaVirus Disease (COVID)-19 pandemic. An unintended consequence of isolation nursing has been to distance patients from nurses and emphasise the technical side of nursing while at the same time reducing the relational or affective potential of nursing. Such distanced forms of nursing normalise the distal patient in hospital. I consider ways in which this new form of distanced nursing has unwittingly contributed to the continued commodification of nursing care in the British NHS. Autoethnography is used to describe and reflect on the illness experience, the experiences of caregivers and the sociocultural organisation of health care. The findings discuss three areas of the illness experience: intimate nursing care; communication; the ‘distanced’ patient experience.

The Illness Experience of Veterans With Dementia: Perceived Measures Related to Depressive Symptoms

Recent work has examined how individuals with dementia (IWDs) experience their illness, although few studies have looked at IWDs who report heightened depressive symptoms, a key well-being outcome. Stressing the ability of IWDs to self-report and guided by the Stress Process Model for Individuals with Dementia, this study examined the relationships between depressive symptoms and various aspects of the illness experience including objective cognition, perceived memory difficulty, perceived functional difficulty, and dyadic relationship strain. The sample includes IWDs with mild to severe dementia who are veterans (N=69). Significant positive correlations emerged between depressive symptoms and several measures of the illness experience: perceived cognition (r=.48, p<.001), perceived function (r =.43, p<.001), and dyadic relationship strain (r=.32, p=.01). In contrast, objective cognition, measured by a modified version of the Blessed Orientation Memory Concentration test, was not significant (r =-.06, p=.63). A multiple regression found the total variance explained by all independent variables was 32% (R2=.32, F(4,68)=7.58, p<.001), with perceived memory difficulty (B=.26, p<.01) and dyadic relationship strain (B=.25, p=.04) accounting for unique and significant variance in depressive symptoms. A mediation analysis indicated perceived memory difficulty fully mediated the relationship between perceived functional difficulty and depressive symptoms. Findings highlight the importance of IWDs perceptions of their illness experience for psychosocial well-being outcomes, such as depressive symptoms. Findings add to the literature by showing the importance of IWDs perceptions of their illness and their impact on well-being outcomes. Results also demonstrate the utility and feasibility of including self-reported data from IWDs in research studies.

Digesting Stigma: Exploring the Illness Experience of New Zealanders with Irritable Bowel Syndrome (‘It’s just shitty’)

<p>This thesis is an anthropological exploration of Irritable Bowel Syndrome (IBS), and the first ethnographic study of people with IBS in New Zealand. It explores the illness experience of people with IBS and whether stigma plays a role within this experience. IBS is a gastrointestinal illness that affects 10-20% of New Zealand’s population. However, its aetiology is unknown, there is no cure, and the biomedical approach that informs its diagnosis and treatment is often incongruous with its lived experience. I posit that the illness experience of my participants and what is stigmatising for them must be understood not only in relation to its physical manifestations but also in relation to the biomedical and neoliberal influences that inform social expectations of the body and social participation. Further, participants experience their IBS simultaneously resisting and participating within these influences to make sense of and manage their illness in a way that aligns with their lived experiences. All work within this thesis is my own except where otherwise stated.</p>

Digesting Stigma: Exploring the Illness Experience of New Zealanders with Irritable Bowel Syndrome (‘It’s just shitty’)

<p>This thesis is an anthropological exploration of Irritable Bowel Syndrome (IBS), and the first ethnographic study of people with IBS in New Zealand. It explores the illness experience of people with IBS and whether stigma plays a role within this experience. IBS is a gastrointestinal illness that affects 10-20% of New Zealand’s population. However, its aetiology is unknown, there is no cure, and the biomedical approach that informs its diagnosis and treatment is often incongruous with its lived experience. I posit that the illness experience of my participants and what is stigmatising for them must be understood not only in relation to its physical manifestations but also in relation to the biomedical and neoliberal influences that inform social expectations of the body and social participation. Further, participants experience their IBS simultaneously resisting and participating within these influences to make sense of and manage their illness in a way that aligns with their lived experiences. All work within this thesis is my own except where otherwise stated.</p>

NCOG-39. EXPLORING PATIENT REPORTED OUTCOMES (PROS) ACROSS ETHNORACIAL GROUPS IN PRIMARY BRAIN TUMOR (PBT) PATIENTS: DIFFERENCES IN THE ILLNESS EXPERIENCE

SIGNIFICANCE AND AIMS Past research in PBT patients has demonstrated that minorities may have a survival advantage compared to Whites for high-grade tumors, though little is known about their illness experience given their underrepresentation in clinical trials. This study explored differences in PROs across race-ethnicity within a large PBT cohort describing associated burden and risk for minority populations where data is scarce. METHODS Demographic, clinical characteristics, MDASI-Brain Tumor, PROMIS Depression and Anxiety Short-Forms, and Neuro-QoL Cognitive Function were collected from the most recent timepoint for PBT patients enrolled on the Natural History Study. Descriptive statistics, one-way ANOVA, and linear regression were used to report results. RESULTS The sample included 562 PBT patients (58% male, median age = 50 [18-85]) comprised of 79% White, 6% African American (AA), 10% Hispanic, and 5% Asian patients per self-report. Most patients had a high-grade glioma (60%), with 28% on active treatment and 44% with good KPS (90-100). Among the most commonly reported moderate-severe symptoms were fatigue ( &gt; 40% in all groups), difficulty remembering (30-40% of Asians, AAs, and Whites), and disturbed sleep (44% in Asians, 29% in Hispanics), while hemiparesis was common only for AA patients (37%). There were no differences between groups with respect to symptom burden and interference, mood disturbance, or cognitive function. Race/ethnicity group was not predictive of overall symptom burden or interference, but for all groups, higher KPS predicted lower symptom and interference scores (p &lt; .001 and p = .004, respectively). CONCLUSION While some symptoms were common across ethnoracial groups, there were differences in symptom patterns, suggesting there may be other factors driving their illness experience. Future exploration of socioeconomic and cultural factors that might contribute to the symptom burden of minorities is warranted, which may allow development of targeted interventions to improve clinical outcomes in these groups.