The experiences and support needs of people living at home with an enteral tube: a qualitative interview study.

BACKGROUND: The number of people with an enteral tube (ET) living at home is increasing globally and services to support them to manage this complex and life-changing intervention vary across regions. The present study aimed to gain an understanding of the experiences of people living at home with an ET and their carers, as well as to explore their views of supporting services and ET-related hospital admissions. METHODS: A qualitative inductive descriptive design was employed. Semi-structured, face-to-face interviews with a purposive sample of people with an ET living at home and carers were undertaken. Interviews were transcribed, initial codes were assigned for salient constructs, and these were then grouped and developed into themes and sub-themes. RESULTS: Nineteen people with ETs and 15 carers of people with ETs were interviewed. Five themes were generated: home better than hospital, feelings about the tube, living with the tube, help when you need it and cost for health service. Participants indicated the ET significantly influenced daily life. Participants described becoming used to coping with the ET at home over time and developing strategies to manage problems, avoid hospital admission and reduce resource waste. Variation in supporting services was described. CONCLUSIONS: People with ETs and their carers need considerable support from knowledgeable, responsive healthcare practitioners during the weeks following initial placement of the ET. Twenty-four hour services to support people with ETs should be designed in partnership with the aim of reducing burden, negative experience, waste and hospital admissions. National frameworks for home enteral nutrition could set the standard for support for people with ETs.

Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

OBJECTIVE: To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. METHOD: Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. RESULTS: The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. CONCLUSIONS: The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

Improving Stroke Caregiver Readiness for Transition From Inpatient Rehabilitation to Home.

Purpose: As the population ages, older adults are more often living with functional limitations from chronic illnesses, such as stroke, and require assistance. Because stroke occurs suddenly, many stroke family caregivers in the United States are unprepared to assume caregiving responsibilities post-discharge. Research is limited on how family members become ready to assume the caregiving role. In this study, we developed a theoretical model for improving stroke caregiver readiness and identifying gaps in caregiver preparation. Design and Methods: We interviewed 40 stroke family caregivers caring for 33 stroke survivors during inpatient rehabilitation and within 6 months post-discharge for this grounded theory study. Data were analyzed using dimensional analysis and constant comparative techniques. Results: Caregivers identified critical areas where they felt unprepared to assume the caregiving role after discharge from inpatient rehabilitation. Steps to improve preparation include (a) conducting a risk assessment of the patient and caregiver; (b) identifying and prioritizing gaps between the patient's needs and caregiver's commitment and capacity; and (c) developing a plan for improving caregiver readiness. Implications: The model presented provides a family-centered approach for identifying needs and facilitating caregiver preparation. Given recent focus on improving care coordination, care transitions, and patient-centered care to help improve patient safety and reduce readmissions in this population, this research provides a new approach to enhance these outcomes among stroke survivors with family caregivers.

The networks of care surrounding cancer palliative care patients.

OBJECTIVES: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. METHOD: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was 'involved in their care' and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). RESULTS: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9-45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. CONCLUSIONS: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Informing future research priorities into the psychological and social problems faced by cancer survivors: a rapid review and synthesis of the literature.

PURPOSE: To establish what is known regarding the psychological and social problems faced by adult cancer survivors (people who are living with and beyond a diagnosis of cancer) and identify areas future research should address. METHOD: A rapid search of published literature reviews held in electronic data bases was under taken. Inclusion and exclusion criteria, and removal of duplicated papers, reduced the initial number of papers from 4051 to 38. Twenty-two review papers were excluded on grounds of quality and 16 review papers were selected for appraisal. RESULTS: The psychological and social problems for cancer survivors are identified as depression, anxiety, distress, fear of recurrence, social support/function, relationships and impact on family, and quality of life. A substantial minority of people surviving cancer experience depression, anxiety, and distress or fear associated with recurrence or follow up. There is some indication that social support is positively associated with better outcomes. Quality of life for survivors of cancer appears generally good for most people, but an important minority experience a reduction in quality of life, especially those with more advanced disease and reduced social and economic resources. The majority of research knowledge is based on women with breast cancer. The longer term implications of cancer survival have not been adequately explored. CONCLUSIONS: Focussing well designed research in the identified areas where less is already known about the psychological and social impact of cancer survival is likely to have the greatest impact on the wellbeing of people surviving cancer.

Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review.

BACKGROUND: Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development. METHODS: Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies. RESULTS: The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation. INTERPRETATION: There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings that have the potential to make a major impact on patient well-being in a 5-year time scale.

The physical and practical problems experienced by cancer survivors: a rapid review and synthesis of the literature.

PURPOSE: A rapid and comprehensive review to identify what is known and not known about the physical and practical problems faced by adult cancer survivors. METHODS: A systematic literature review process was used. This focused on published reviews to enable a fast but rigorous identification of both the gaps and well-researched areas within survivorship. RESULTS: The search identified 5121 reviews, of which 42 were screened and 9 met the quality and inclusion criteria. The majority of papers focused on physical well being (n = 6) with the remaining papers focusing on practical well being (employment and finance). The quality of the reviews varied (ranging from weak to good). Gaps identified include sexual function, lower-limb lymphoedema, peripheral neuropathy, bladder and GI problems, hormonal sequelae, older cancer survivors, work impact of cancer and context-specific unmet supportive care needs. The review found a lack of standardised nomenclature for survivorship and methodological limitations. CONCLUSIONS: Four main gaps in knowledge relating to the practical and physical problems associated with cancer survivorship have been identified. These are key symptoms, unmet supportive care needs, employment and older cancer survivors, and should be addressed by future research and systematic literature reviews. Work is also needed to address the nomenclature of survivorship and to improve the methodology of research into cancer survivors (including standardised measures, theoretical frameworks, longitudinal design, inclusion of older survivors and age-matched controls for comparison). The review highlighted the need for better research within the identified areas in order to improve the experiences of cancer survivors.

Report from the EPAA workshop: in vitro ADME in safety testing used by EPAA industry sectors.

There are now numerous in vitro and in silico ADME alternatives to in vivo assays but how do different industries incorporate them into their decision tree approaches for risk assessment, bearing in mind that the chemicals tested are intended for widely varying purposes? The extent of the use of animal tests is mainly driven by regulations or by the lack of a suitable in vitro model. Therefore, what considerations are needed for alternative models and how can they be improved so that they can be used as part of the risk assessment process? To address these issues, the European Partnership for Alternative Approaches to Animal Testing (EPAA) working group on prioritization, promotion and implementation of the 3Rs research held a workshop in November, 2008 in Duesseldorf, Germany. Participants included different industry sectors such as pharmaceuticals, cosmetics, industrial- and agro-chemicals. This report describes the outcome of the discussions and recommendations (a) to reduce the number of animals used for determining the ADME properties of chemicals and (b) for considerations and actions regarding in vitro and in silico assays. These included: standardisation and promotion of in vitro assays so that they may become accepted by regulators; increased availability of industry in vivo kinetic data for a central database to increase the power of in silico predictions; expansion of the applicability domains of in vitro and in silico tools (which are not necessarily more applicable or even exclusive to one particular sector) and continued collaborations between regulators, academia and industry. A recommended immediate course of action was to establish an expert panel of users, developers and regulators to define the testing scope of models for different chemical classes. It was agreed by all participants that improvement and harmonization of alternative approaches is needed for all sectors and this will most effectively be achieved by stakeholders from different sectors sharing data.

Counseling and testing TB patients for HIV: evaluation of three implementation models in Kinshasa, Congo.

SETTING: Kinshasa, Democratic Republic of Congo. OBJECTIVES: To evaluate the implementation of three models of provider-initiated HIV counseling and testing (CT) for tuberculosis (TB) patients. METHODS: HIV CT was offered to all TB patients aged > or =18 months registered for treatment at three project clinics between August 2004 and June 2005. HIV CT was performed at the TB clinic, the health center or the freestanding voluntary counseling and testing (VCT) center. HIV-infected patients received cotrimoxazole prophylaxis. RESULTS: Uptake of HIV CT was high (95-98%) when performed at the TB clinic or primary health care center, but significantly lower (68.5%) among patients referred to a free-standing VCT center. The overall HIV prevalence among the 1088 patients tested for HIV was 18.8%. HIV was associated with female sex (aOR 1.91), recurrent TB (aOR 2.74), extra-pulmonary TB (aOR 1.97) and age. CONCLUSIONS: Implementation of provider-initiated routine HIV CT by the TB nurse or health care worker at the primary health care center results in a higher uptake compared to referral of patients with TB to freestanding VCT clinics. Provider-initiated HIV CT is only a first step and needs to be linked to access to HIV care, support and treatment.

Patient and provider perspectives on implementation models of HIV counseling and testing for patients with TB.

SETTING: TB clinics in Kinshasa, Democratic Republic of Congo. OBJECTIVES: To identify an acceptable approach to human immunodeficiency virus (HIV) counseling and testing (CT) for patients with tuberculosis (TB) from health care worker (HCWs) and patient perspectives. DESIGN: A qualitative evaluation was conducted of three models of routine provider-initiated HIV CT: off-site referral to a freestanding voluntary counseling and testing (VCT) center, on-site referral for HIV CT at the primary health care center to which the TB clinic belongs and HIV CT by the TB nurse. RESULTS: Incorporating HIV CT into routine TB care was supported by HCWs (96%) and patients (99%). The trusting patient-provider relationship was a primary reason why most HCWs (74%) and patients (68%) preferred the HIV CT by TB nurse model. Patients also cited continuity of care and potential optimisation of the management of HIV co-infected patients as reasons. Some patients and HCWs were concerned about confidentiality issues (HIV status documentation and privacy of counseling) and the potential difficulty of refusing routine HIV CT when it was offered by TB nurses. Some HCWs also expressed worry about the increased workload. CONCLUSION: Qualitative data provided insight into reasons for the high uptake observed of routine HIV CT offered by TB nurses and identified potential concerns when implementing this model.

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London.

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.

Eating soya improves human memory.

RATIONALE: Soya foods are rich in isoflavone phytoestrogens with weak agonist activity at oestrogen receptors. Oestrogen treatment has been found to improve memory in men awaiting gender reassignment and in post-menopausal women. OBJECTIVE: To examine the effects of supervised high versus low soya diets on attention, memory and frontal lobe function in young healthy adults of both sexes. METHODS: Student volunteers were randomly allocated to receive, under supervision, a high soya (100 mg total isoflavones/day) or a low soya (0.5 mg total isoflavones/day) diet for 10 weeks. They received a battery of cognitive tests at baseline and then after 10 weeks of diet. RESULTS: Those receiving the high soya diet showed significant improvements in short-term (immediate recall of prose and 4-s delayed matching to sample of patterns) and long-term memory (picture recall after 20 min) and in mental flexibility (rule shifting and reversal). These improvements were found in males and females. In a letter fluency test and in a test of planning (Stockings of Cambridge), the high soya diet improved performance only in females. There was no effect of diet on tests of attention or in a category generation task. Those on the high soya diet rated themselves as more restrained and, after the tests of memory and attention, they became less tense than did those on the control diet. CONCLUSIONS: Significant cognitive improvements can arise from a relatively brief dietary intervention, and the improvements from a high soya diet are not restricted to women or to verbal tasks.

Implications of social isolation during cancer treatment. The implications of residence away from home during cancer treatment on patients' experiences: a comparative study.

With the centralisation and specialisation of cancer services, patients may have to travel considerable distances and stay away from their homes during treatment. This paper describes a comparative study that sought to identify the effects on patients of receiving chemotherapy and/or radiotherapy away from their homes, families and social support networks. Eighty four cancer patients treated in Southampton (42 from Guernsey and 42 from Southampton) agreed to participate in a structured interview and a standardised measure of social support. There were few differences in terms of satisfaction with services between Guernsey patients who stayed away from home during treatment and Southampton patients who lived at home. Counter-intuitively, Guernsey patients perceived themselves to have better social support.

Written information given to patients and families by palliative care units: a national survey.

A national survey of written information given to patients and their families by pallative care units found that 64% of leaflets could be understood by only an estimated 40% of the British population. Many of the leaflets did not meet basic guidelines on legibility and readability.

Creating and maintaining 'optimism' in cancer care communication.

This study investigates nurse-patient communication in the cancer care context. Interviews with nurses and patients about their communication experiences and audio-recorded nurse-patient conversations were collected and analysed. A theme of 'optimism' largely manifesting as 'constructive realism' was one of four features identified by the qualitative analysis. The health professional has traditionally been viewed as the party with the power and control over conversation progression and topics. In particular, the superficial, positive and chatty nature of nurse-patient interaction has often been attributed to a lack of nurses' communication skills training. This research indicates that both patient and nurse are active in its construction and argues that the optimistic cheerful nature of nurse-patient interaction may be better viewed as a jointly produced institutional feature of cancer care. This paper illustrates and examines some of the ways this outcome was created and maintained by participants and discusses the implications of this.

The impact of travel on cancer patients' experiences of treatment: a literature review.

This literature review aims to identify the impact of travel on cancer patients' experiences of treatment. With centralization of cancer services, patients may have to travel considerable distances from their homes and families, to receive specialist cancer treatment. Centralization of cancer services may have advantages in terms of concentrating clinical expertise, enhancing the range of ancillary facilities and rationalising the provision of expensive specialist equipment, but it is not known to what extent patients are affected by additional travel and the prospect of separation from their social networks. A systematic literature search using MEDLINE, SSCI, SOCA and PSYCHLIT, identified 11 relevant studies from six countries. The review showed a paucity of research on the implications of receiving cancer treatment far from home. Most studies can be criticised on methodological grounds. The evidence that travel distance and difficulty increases psychological distress, and reduces compliance with treatment and take up of treatment is largely inconclusive. However, travel to cancer treatment is described as inconvenient and a practical hardship for many patients. It may be perceived, or experienced as, a barrier to treatment. Future studies should evaluate the impact of travel to treatment on quality of life and perceived social support.

Glycolipid RC-552 induces delayed preconditioning-like effect via iNOS-dependent pathway in mice.

We recently demonstrated that monophosphoryl lipid A (MLA)-induced delayed cardioprotection is mediated by inducible nitric oxide synthase (iNOS) in mice. In the present study, we determined whether RC-552, a novel synthetic glycolipid related in chemical structure to MLA, could afford similar protection. Adult mice were pretreated with vehicle or RC-552 (350 microg/kg ip, n = 7 mice/group) 24 h before global ischemia and reperfusion in a Langendorff isolated, perfused heart model. A group of RC-552-treated mice received S-methylisothiourea (SMT), a selective inhibitor of iNOS (3 mg/kg ip), 30 min before heart perfusion. Myocardial infarct size was significantly reduced from 19.2 +/- 2.0% in vehicle to 8.2 +/- 2.9% in RC-552 group (P < 0.05). Treatment with SMT abolished RC-552-induced reduction in infarct size (20.0 +/- 3.9%). In addition, RC-552 failed to reduce infarct size in isolated hearts from iNOS knockout mice (27.1 +/- 2.8%) compared with that in hearts from control knockout mice without drug treatment (22.9 +/- 5.4%). Acute buffer perfusion with RC-552 (0.1, 1.0, or 2.5 microg/ml) for 8 min immediately before ischemia-reperfusion did not reduce infarct size significantly. We concluded that RC-552 induces delayed cardioprotection via an iNOS-dependent pathway.

Improving palliative care services: a pragmatic model for evaluating services and assessing unmet need.

Evaluating local palliative care services and identifying gaps in services for patients are crucial to the development of services which enable people to die at home in a well-supported environment. A review of the local strategy for providing respite and support services for palliative care patients and their carers was carried out in one area of south-east England. The review comprised four elements: identification of services available; interviews with provider 'stakeholders'; interviews with patients and carers; questionnaire survey of general practitioners and district nurses. The findings and outcome are described. It is suggested that this approach could be adopted by health authorities to form one part of a comprehensive system of needs assessment. Alternatively, it could be used by groups of providers to evaluate existing services and to identify potential improvements to services. Advantages and disadvantages of the approach for both commissioners of such reviews and those carrying them out are discussed.

'Someone to talk to' and 'pain control': what people expect from a specialist palliative care team.

This paper presents a qualitative analysis of a subsample of data from a larger investigation into general practitioner referrals to specialist palliative care services (SPCS). The aim was to identify the expectations and perceptions of patients with advanced cancer and their relatives. Twenty-nine individuals were interviewed (18 patients, 11 relatives). Qualitative analysis of the interview transcripts was undertaken using an approach based on interpretative phenomenological analysis. The results indicated that SPCS were perceived as providing psychosocial services, characterized as 'support' and 'someone to talk to'. SPCS were expected to have 'expertise in symptom control', particularly in relation to pain management. The study demonstrated that patients' and relatives' expectations of a referral to SPCS were of psychosocial support and symptom control. It is argued that the implications of this restricted view of SPCS may mean that other salient concerns are not raised by patients and relatives.

Myocardial ischemia/reperfusion injury in the inducible nitric oxide synthase knockout mice.

Inducible nitric oxide synthase (iNOS) plays an important role in the inflammatory process of certain major cardiac disorders including myocardial infarction and allograft rejection. However, the role of iNOS in acute myocardial ischemia has not been well defined. We determined the effects of genetically disruption of the intact iNOS system on cardiac tolerance to ischemia/reperfusion injury. Adult male wild-type (WT) and iNOS knockout (KO) B6,129 mice were subjected to 20 min global ischemia and 30 min reperfusion in a Langendorff isolated perfused heart model (37 degrees C, n = 10/each group). Ventricular contractile function, heart rate, coronary flow, and leakage of intracellular enzymes (CK and LDH) were not significantly different between the groups during pre-ischemia as well as reperfusion period (P > 0.05). Myocardial infarct size was also not significantly different between WT (20.2+/-2.0% of risk area) and KO mice (23.5+/-3.8%; Mean+/-SEM, P > 0.05). However, the post-ischemic heart rate was significantly preserved in KO as compared to WT (P < 0.05). We conclude that disruption of iNOS gene does not exacerbate ischemia/ reperfusion injury in the heart.