Susan Browne

'Getting through' not 'going under': A qualitative study of gender and spousal support after diagnosis with colorectal cancer

Many studies have found that people with cancer value family support. Feminist work suggests that women carry most responsibility for practical and emotional support in families, but few qualitative cancer studies explicitly incorporate a gender perspective. We undertook secondary analysis of in-depth interviews with 33 married or cohabiting respondents with colorectal cancer in the UK to compare men and womens accounts of ‘spousal’ support. Both men and women described the vital role that their partners played in providing emotional and practical support. Mutual support and reciprocity were also key features of narratives; both men and women reported controlling their emotions to protect spouses and preserve ‘normal’ household routines. Traditional gender roles had some influence; some women organised ‘cover’ for domestic work and childcare when they were ill, while some men focused on making sure that their families were financially secure and partners were ‘protected’ from the effects of their stomas. Our findings illustrate the complexity of gendered constructions and performances of ‘care’ and contribute to debates about gender and emotional labour.

Modifiable and fixed factors predicting quality of life in people with colorectal cancer

Background:People with colorectal cancer have impaired quality of life (QoL). We investigated what factors were most highly associated with it.Methods:Four hundred and ninety-six people with colorectal cancer completed questionnaires about QoL, functioning, symptoms, co-morbidity, cognitions and personal and social factors. Disease, treatment and co-morbidity data were abstracted from case notes. Multiple linear regression identified modifiable and unmodifiable factors independently predictive of global quality of life (EORTC-QLQ-C30).Results:Of unmodifiable factors, female sex (P<0.001), more self-reported co-morbidities (P=0.006) and metastases at diagnosis (P=0.036) significantly predicted poorer QoL, but explained little of the variability in the model (R2=0.064). Adding modifiable factors, poorer role (P<0.001) and social functioning (P=0.003), fatigue (P=0.001), dyspnoea (P=0.001), anorexia (P<0.001), depression (P<0.001) and worse perceived consequences (P=0.013) improved the model fit considerably (R2=0.574). Omitting functioning subscales resulted in recent diagnosis (P=0.002), lower perceived personal control (P=0.020) and travel difficulties (P<0.001) becoming significant predictors.Conclusion:Most factors affecting QoL are modifiable, especially symptoms (fatigue, anorexia, dyspnoea) and depression. Beliefs about illness are also important. Unmodifiable factors, including metastatic (or unstaged) disease at diagnosis, have less impact. There appears to be potential for interventions to improve QoL in patients with colorectal cancer.

Pharmacological modification of glutamate neurotoxicity in vivo

The ability of five agents (dizocilpine [MK-801], 2,3-dihydroxy-6-nitro-7-sulfamoyl-benzo(F)-quinoxaline [NBQX], enadoline [CI-977], L-nitroarginine methyl ester [L-NAME] and BW 1003c87) with well defined, distinct pharmacological profiles and with established anti-ischemic efficacy, to modify neuronal damage has been examined in a simple in vivo model of glutamate excitotoxicity. Cortical lesions were produced in physiologically-monitored halothane-anesthetised rats by reverse dialysis of glutamate. The volume of the lesion was quantified histologically by image analysis of approximately 20 sections taken at 200 microm intervals throughout the lesion. The AMPA and NMDA receptor antagonists (NBQX and MK-801) and the inhibitor of nitric oxide synthase (L-NAME) significantly reduced the lesion volume by a similar extent (by approximately 30% from vehicle). Two agents (the kappa opioid agonist, CI-977 and the sodium channel blocker, BW 1003c87) which putatively inhibit the release of endogenous glutamate presynaptically, had dissimilar effects on lesion size. CI-977 failed to alter the amount of damage produced by exogenous glutamate, whereas BW 1003c87 reduced the lesion size by approximately 50%. Using this model, the neuroprotective effects of anti-ischemic drugs can be explored in vivo, uncomplicated in contrast to experimental ischemia by reduced oxygen delivery, drug effects on tissue blood flow and compromised energy generation. In consequence, additional mechanistic insight into anti-ischemic drug action in vivo can be obtained.

AMPA receptor antagonists and local cerebral glucose utilization in the rat

Local cerebral glucose utilization was examined using [14C]2-deoxyglucose autoradiography following systemic administration of the AMPA antagonists 2,3-dihydroxy-6-nitro-7-sulfamoyl-benzo(F)quinoxaline (NBQX) and 6-(2-(1H-tetrazol-5-yl)ethyl)decahydroisoquinoline-3-carboxy lic acid (LY-293558) in conscious rats. Both NBQX (10, 30 and 100 mg/kg) and LY-293558 (10, 30 and 100 mg/kg) produced marked, anatomically widespread, dose-dependent reductions in glucose utilization throughout the brain. In none of the 50 regions investigated were elevations in glucose use observed at any dose of either agent. The reductions in glucose use were accompanied by sedation, suppression of spontaneous behaviour, and respiratory depression after NBQX (30 and 100 mg/kg) and LY-293558 (30 and 100 mg/kg) administration. The greatest reductions in glucose use after NBQX or LY-293558 occurred in primary auditory regions, limbic structures (particularly hippocampal regions and cingulate cortex), neocortex and some thalamic nuclei. However, a small number of regions were found to be insensitive to either NBQX or LY-293558, most notably the superior colliculus superficial layer which failed to display significant alterations in glucose use following any concentration of either AMPA antagonist. The anatomical pattern of altered glucose use was essentially similar following either agent although the cerebral cortex, thalamus and auditory regions were more sensitive to LY-293558 and subcortical regions more sensitive to NBQX. The anatomical pattern of glucose use alterations after AMPA receptor antagonists differs from that described previously for competitive and non-competitive NMDA receptor antagonists.

Patient, Carer and Professional Perspectives on Barriers and Facilitators to Quality Care in Advanced Heart Failure

Background Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care. Methods Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework. Findings Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom. Conclusions Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms.

Delivering Digital Health and Well-Being at Scale: Lessons Learned during the Implementation of the dallas Program in the United Kingdom

Abstract Objective To identify implementation lessons from the United Kingdom Delivering Assisted Living Lifestyles at Scale (dallas) program—a large-scale, national technology program that aims to deliver a broad range of digital services and products to the public to promote health and well-being. Materials and Methods Prospective, longitudinal qualitative research study investigating implementation processes. Qualitative data collected includes semi-structured e-Health Implementation Toolkit–led interviews at baseline/mid-point ( n = 38), quarterly evaluation, quarterly technical and barrier and solutions reports, observational logs, quarterly evaluation alignment interviews with project leads, observational data collected during meetings, and ethnographic data from dallas events ( n > 200 distinct pieces of qualitative data). Data analysis was guided by Normalization Process Theory, a sociological theory that aids conceptualization of implementation issues in complex healthcare settings. Results Five key challenges were identified: 1) The challenge of establishing and maintaining large heterogeneous, multi-agency partnerships to deliver new models of healthcare; 2) The need for resilience in the face of barriers and set-backs including the backdrop of continually changing external environments; 3) The inherent tension between embracing innovative co-design and achieving delivery at pace and at scale ; 4) The effects of branding and marketing issues in consumer healthcare settings; and 5) The challenge of interoperability and information governance, when commercial proprietary models are dominant. Conclusions The magnitude and ambition of the dallas program provides a unique opportunity to investigate the macro level implementation challenges faced when designing and delivering digital health and wellness services at scale. Flexibility, adaptability, and resilience are key implementation facilitators when shifting to new digitally enabled models of care.

Predictors of anxiety and depression in people with colorectal cancer

BackgroundPeople living with colorectal cancer are at risk of anxiety and depression. We investigated what factors were most highly associated with these.MethodsFour hundred and ninety-six people with colorectal cancer completed the Hospital Anxiety and Depression Scale (HADS). Data on functioning, symptoms, illness perceptions and social difficulties were collected by questionnaire. Case-note-identified disease, treatment and co-morbidity data were recorded. Multiple logistic regression identified factors independently predictive of anxiety and depression caseness.ResultsSelf-reported history of anxiety/depression predicted anxiety but not depression caseness. Depression caseness predicted anxiety caseness (p = 0.043), as did poorer self-reported cognitive functioning (p = 0.001), dyspnoea (p = 0.015) or diarrhoea (p = 0.021), reporting a high negative life and emotional impact (p < 0.001) and having difficulties with finance (p = 0.007). Having neo-adjuvant radiotherapy increased the odds of depression caseness (p = 0.007), as did poorer physical (p = 0.007), cognitive (p < 0.001) and social (p < 0.001) functioning, having constipation (p = 0.011), reporting a high negative life and emotional impact (p < 0.001), having difficulties with personal care (p = 0.022) and communicating with others (p = 0.014).ConclusionLevels of anxiety caseness were similar to those of non-clinical samples, but depression caseness was higher, particularly in those who had received neo-adjuvant radiotherapy. Most factors associated with possible or probable depression may be modified with appropriate intervention.

Identifying treatment burden as an important concept for end of life care in those with advanced heart failure.

Purpose of reviewThe concept of treatment burden is receiving increasing attention and this review seeks to show that treatment burden is an important issue for end-of-life care in those with advanced heart failure. Recent findingsReview of the qualitative literature on patient experience of end-stage heart failure since the year 2000, including 2012, suggests that treatment burden, the work that patients have to do to manage their condition, is a readily identifiable concept in advanced heart failure. Treatment burden relates to four main areas of work, namely: coherence (sense making work) which refers to the work of developing an understanding of the illness (including its implications), treatment and management; appraisal, which refers to the work of judging, monitoring and adjusting treatments; relationship work which describes the effort put into engaging with others for support; and enacting work, that is the effort put into operationalizing treatments, which includes activities such as taking medications, attending appointments, enduring side effects of treatments and dealing with communication difficulties. SummaryTreatment burden has the potential to be an important barometer of quality of care from the patient perspective in advanced heart failure.

A qualitative exploration of the role of primary care in supporting colorectal cancer patients

PurposeTo explore experiences and support needs of people with colorectal cancer, with a focus on identifying opportunities for primary care interventions.MethodsWe conducted a new qualitative analysis of an existing dataset, comprising semi-structured interview transcripts from 39 people with colorectal cancer from across the UK, interviewed in 2001–2002 for www.healthtalkonline.org. Then, we conducted semi-structured interviews with 30 people with colorectal cancer from North East Scotland and Glasgow in 2009 and analysed these new data to explore themes and challenge hypotheses that emerged from the Healthtalkonline data.ResultsFormal sources of support, including that from primary care, were valued by those who received them, but provision was described as sporadic both in 2002 and in 2009. However, more of the 2009 participants gave descriptions of specialist nurse and community nurse involvement, and telephone contact from general practitioners, which were welcomed. Improvements in meeting information needs, particularly on the issues of diet and sex, were identified by 2009. A recurring issue reported by patients was the distress experienced by their own friends and family; some patients found themselves having to provide, rather than receive, emotional support at this difficult time.ConclusionsThere have been improvements in support for people with colorectal cancer since 2002, with more specialist and community nurse involvement, and telephone contact from general practitioners, but provision remains piecemeal. Patients would benefit if their families received support, and primary care may be in a good position to provide this. A proactive approach from general practitioners in the post-discharge period is valued.

The cerebral metabolic effects of manipulating glutamatergic systems within the basal forebrain in conscious rats

N‐methyl‐d‐aspartate (NMDA) and non‐NMDA receptor‐mediated manipulations of the cortical cholinergic input arising from the basal forebrain differentially affect cognitive function. We used [14C]‐2‐deoxyglucose autoradiography in conscious rats to map the effects of excitatory amino acid agonist infusions into the nucleus basalis magnocellularis (NBM) on cerebral functional activity, as reflected by local rates of glucose utilization. Acute stimulation of NBM neurones by local infusion of α‐amino‐3‐hydroxy‐5‐methyl‐4‐isoxazolepropionic acid (AMPA), 15 min before glucose use measurement, resulted in glucose use reductions in nine cortical regions innervated by NBM efferents including prefrontal, frontal, sensorimotor and cingulate cortices. NMDA infusions altered glucose use in two cortical areas. Both AMPA and NMDA markedly increased glucose use in the striatum and globus pallidus, with concomitant perturbations in striato‐pallidal projection targets including the substantia nigra, entopeduncular nucleus, subthalamic nucleus and lateral habenular nucleus. In contrast, the GABAA agonist muscimol did not affect glucose use in the NBM or neocortical regions, but induced glucose use increases in several subcortical nuclei including the substantia nigra and entopeduncular nucleus.