The education engagement, coping and well-being of teenagers with cancer

Introduction: Every year approximately 2000 teenagers are diagnosed with cancer in the U.K. alone (Brierley et al. 2009). Being diagnosed with cancer during this important developmental stage has been described as a “double penalty” for young people, as they adapt to their changing developmental situations alongside the psychological and social impact of their cancer (Lombard et al. 2013). Many teenagers have been shown to desire continued engagement with their education after a diagnosis of cancer (Gibson et al. 2005), but how do they experience this and what factors are involved? Aims: There were three main aims of this thesis 1) to investigate the experiences of teenagers as they try to maintain engagement with their education following a diagnosis of cancer; 2) to produce an evidence base for the area of education engagement that was centred on the perspectives and experiences of teenagers with cancer; and 3) to provide evidence and recommendations for the future development of services to appropriately support teenagers with their education following a diagnosis of cancer. Methods: The main study recruited 12 teenagers (aged 13-16) to participate in interviews and complete questionnaires at 3 time-points over the 9 months following their diagnosis of cancer. Participants were asked to engage in a visual interview approach, where they provided images to represent their experiences, which were then used as a stimulus for discussion. Interviews were transcribed verbatim and qualitatively analysed using Interpretative Phenomenological Analysis. Findings: Participants experienced their ongoing engagement with education as a complex interaction of different versions of themselves moving through intersecting timelines related to education, treatment and adjustment to cancer. Underpinning their education experiences was a fluctuating desire to be treated normally alongside the often contradictory need for special consideration as a young person with cancer. Engagement with education was hindered by many factors including; telling others about their cancer, altered peer group dynamics, not feeling part of the school community and the perception of changes in themselves over time. Conclusion: Education is an important issue for young people, even in the context of a cancer diagnosis. School is an environment where changes caused by cancer to peer dynamics, appearance, mobility, ability, and a personal sense of self are brought into sharp focus. The work presented in this thesis has implications for future research, but more importantly for the way that services are designed and implemented to support young people with their education after a diagnosis of cancer

Patient and professional experiences of palliative care referral discussions from cancer services : a qualitative interview study

Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process

Exploring the perceived impact of social support on the health behaviours of people living with and beyond cancer during the COVID-19 pandemic: a qualitative study

Purpose: Social support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support was perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. / Methods: Semi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. / Results: Five themes developed. These were (1) Companionship and accountability as motivators for physical activity, (2) Social influences on alcohol consumption, (3) Instrumental support in food practices, (4) Informational support as important for behaviour change and (5) Validation of health behaviours from immediate social networks. / Conclusion: This study described how companionship, social influence, instrumental support, informational support and validation were perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.

BACKGROUND AND OBJECTIVES: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. METHODS: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review. RESULTS: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents. CONCLUSIONS: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.Jan Oyebode, Penny Wright, Simon Pini, Mike Horton, each declare that this work was supported by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). Grant title: HQLC Dementia Carers Instrument Development: DECIDE (MR/M025179/1) and that the grant is registered on the UK Research and Innovation Gateway: http://gtr.ukri.org/projects?ref=MR/M025179/1 . They also declare that they have received financial support for travel to meetings for the study, manuscript preparation or other purposes from the grant funder as part of the award only. In addition, Penny Wright has declared that she is the principal investigator and was the main applicant for the funding that was received from the MRC and NIHR, and Jan Oyebode has declared her position as a coinvestigator. The following authors have no conflicts of interest to declare: Emma Ingleson, Molly Megson, Linda Clare, Hareth Al-Janabi, Carol Brayne

A needs-led framework for understanding the impact of caring for a family member with dementia

YesApproximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study we propose that a needs-led approach can provide a useful, novel means of conceptualising the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. In this qualitative study we conducted 42 semi-structured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: ‘What need is being impacted here?’ in order to generate a needs-led framework for understanding. Nine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positives aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.Medical Research Council and the National Institute for Health Research (NIHR). Grant title: HQLC Dementia Carers Instrument Development: DECIDE (MR/M025179/1)Research Development Fund Publication Prize Award winner, August 2018

Dementia Carers Instrument Development (DECIDE) - Qualitative interview data

This dataset contains qualitative interview transcripts, obtained from 41 of 42 semi-structured interviews with a purposively diverse sample of primary carers aged ≥16 years, supporting a partner or family member who had a diagnosis of dementia and living in the community. Participants included 28 females, and 14 males (aged 31-83). The sample included 22 carers who were husband or wife of the person with dementia, and 20 who were daughters, sons, daughter-in-laws or granddaughters. Specific diagnoses of the person with dementia included Alzheimer's disease, vascular dementia, or other. Open questions were used to explore carers’ experiences, thoughts, and feelings related to challenging and rewarding experiences and events. Socratic questioning was employed, through asking carers to reflect on why particular experiences of care made them feel or think as they did. In this way, we aimed to uncover underlying needs that were impacted upon by the carer experience and generate nuanced contextualized accounts of how caring impacted on carers’ lives

Tungsten oxide mediated quasi-van der Waals Epitaxy of WS2 on Sapphire

Conventional epitaxy plays a crucial role in current state-of-the art semiconductor technology, as it provides a path for accurate control at the atomic scale of thin films and nanostructures, to be used as the building blocks in nanoelectronics, optoelectronics, sensors, etc. Four decades ago, the terms “van der Waals” (vdW) and “quasi-vdW (Q-vdW) epitaxy” were coined to explain the oriented growth of vdW layers on 2D and 3D substrates, respectively. The major difference with conventional epitaxy is the weaker interaction between the epi-layer and the epi-substrates. Indeed, research on Q-vdW epitaxial growth of transition metal dichalcogenides (TMDCs) has been intense, with oriented growth of atomically thin semiconductors on sapphire being one of the most studied systems. Nonetheless, there are some striking and not yet understood differences in the literature regarding the orientation registry between the epi-layers and epi-substrate and the interface chemistry. Here we study the growth of WS2 via a sequential exposure of the metal and the chalcogen precursors in a metal–organic chemical vapor deposition (MOCVD) system, introducing a metal-seeding step prior to the growth. The ability to control the delivery of the precursor made it possible to study the formation of a continuous and apparently ordered WO3 mono- or few-layer at the surface of a c-plane sapphire. Such an interfacial layer is shown to strongly influence the subsequent quasi-vdW epitaxial growth of the atomically thin semiconductor layers on sapphire. Hence, here we elucidate an epitaxial growth mechanism and demonstrate the robustness of the metal-seeding approach for the oriented formation of other TMDC layers. This work may enable the rational design of vdW and quasi-vdW epitaxial growth on different material systems

“What is my risk really?”: A qualitative exploration of preventive interventions among individuals at risk of rheumatoid arthritis

Objectives Intervention in the pre-arthritis phase of rheumatoid arthritis (RA) could prevent or delay the onset of disease. The primary aim of this study was to explore perspectives of being at-risk and potential preventive interventions among individuals at risk of developing RA, and identify factors influencing their engagement with prevention. A secondary aim, established during the analysis process, was to understand and compare different approaches to health-related behaviours related to preventing RA. Methods Anti-cyclic citrullinated peptide positive at-risk (CCP+ at-risk) individuals with musculoskeletal symptoms but no synovitis participated in semi-structured interviews. Data were analysed using reflexive thematic analysis, followed by a secondary ideal-type analysis. Results Nineteen CCP+ at-risk individuals (ten women; age range 35–70) participated. Three overarching themes were identified: i) being CCP+ at risk; ii) aiming to prevent RA; iii) influencers of engagement. Participants described distress related to symptoms and uncertainty about disease progression. Many participants had concerns about medication side effects. In contrast, most participants expressed willingness to make lifestyle changes with the aim of preventing RA. Engagement with preventive measures was influenced by symptom severity, personal risk level, comorbidities, experiences of taking other medications/supplements, knowledge of RA, risk factors and medications, and perceived effort. Three ‘types’ of participants were identified from the data: proactive preventers, change considerers, and fearful avoiders. Overall orientation to health behaviours also impacted on attitude towards preventing RA. Conclusion Findings could inform recruitment and retention in RA prevention research and promote uptake of preventive interventions in clinical practice

Nosology, epidemiology and pathogenesis of bipolar disorder: Recent approaches

Bipolar disorder is a highly prevalent, chronic and deteriorating mental illness that requires medical, psychological and social care for life. Realizing that bipolar disorder is more common than initially thought, the associated disability and the heterogeneity in their clinical presentation, has strengthened the research on this topic. Recent advances in the field of nosology, epidemiology and pathogenesis have begun to unravel some of the complexity of this disorder and have had a marked influence on the changes in the way they are beginning to diagnose a broad spectrum of bipolar disorders according to the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM 5)

Observational studies of depression in primary care: what do we know?

<p>Abstract</p> <p>Background</p> <p>We undertook a systematic review of observational studies of depression in primary care to determine 1) the nature and scope of the published studies 2) the methodological quality of the studies; 3) the identified recovery and risk factors for persistent depression and 3) the treatment and health service use patterns among patients.</p> <p>Methods</p> <p>Searches were conducted in MEDLINE, CINAHL and PsycINFO using combinations of topic and keywords, and Medical Subject Headings in MEDLINE, Headings in CINAHL and descriptors in PsycINFO. Searches were limited to adult populations and articles published in English during 1985–2006.</p> <p>Results</p> <p>40 articles from 17 observational cohort studies were identified, most were undertaken in the US or Europe. Studies varied widely in aims and methods making it difficult to meaningfully compare the results. Methodological limitations were common including: selection bias of patients and physicians; small sample sizes (range 35–108 patients at baseline and 20–59 patients at follow-up); and short follow-up times limiting the extent to which these studies can be used to inform our understanding of recovery and relapse among primary care patients with depression. Risk factors for the persistence of depression identified in this review were: severity and chronicity of the depressive episode, the presence of suicidal thoughts, antidepressant use, poorer self-reported quality of life, lower self-reported social support, experiencing key life events, lower education level and unemployment.</p> <p>Conclusion</p> <p>Despite the growing interest in depression being managed as a chronic illness, this review identified only 17 observational studies of depression in primary care, most of which have included small sample sizes and been relatively short-term. Future research should be large enough to investigate risk factors for chronicity and relapse, and should be conducted over a longer time frame.</p