Learning from the experiences of cancer patients and their carers

UK cancer policy aims to improve the quality of cancer services and enhance the experience of people affected by cancer. A recognised barrier to improving services is healthcare professionals’ lack of insight into patients’ and carers’ experiences; this article reports on the process of integrating these into a cancer education programme for nursing students. The cancer academic team identified patients and carers to help co-produce the programme. Students had an opportunity to listen to patients’ and carers’ stories and to learn from – rather than about – patients. Small-group work enabled patients, carers and students to explore the cancer experience in a safe and supportive setting. Working collaboratively with people affected by cancer ensured that the focus was on their experience, placing it at the core of the cancer education programme

What happens before, during and after crisis for someone with dementia living at home: a systematic review

Background People living with dementia often experience crisis. Home treatment of crisis is an alternative to hospital admission that can have better outcomes. This systematic review is about people with dementia living at home and in crisis. It identifies modifiable factors in the crisis process that may facilitate crisis resolution. Methods The protocol is registered on PROSPERO. A systematic search of MEDLINE, EMBASE, CINAHL, AHMED, PsycINFO, Cochrane Library and references of retrieved publications, identified empirical research in English language and date range January 2000 to February 2019. Two researchers independently screened abstracts, selected publications and extracted data using a framework based on published guidelines. This is a report of the analysis and narrative synthesis. Results The search identified 2755 titles and abstracts, 76 were selected for full-text examination and 13 agreed for inclusion. The included studies evidence that: for a person with dementia, crisis is a process that begins with a problem judged to put them or others at risk of harm. It leads to decision and action to treat this risk, thus resolve the crisis. Such crisis can be predicted or unpredicted and progress quickly or slowly. Medical treatment, community resources and psychosocial support of personal resources, decision making, relationships and social networks, are all modifiable factors that can treat the risk of harm during crisis. Carers’ and professionals’ knowledge and skills in dementia care are likely to play a key role in crisis resolution in the home. Conclusion There has been limited investigation of the process and management of crisis at home for people living with dementia. The results of this review provide a foundation for future research. There is no consensus on critical components of home treatment to facilitate crisis resolution. However, education in dementia care for carers and professionals is likely to prove essential to successful home treatment

Assistance at mealtimes in hospital settings and rehabilitation units for older adults from the perspective of patients, families and healthcare professionals: a mixed methods systematic review protocol

REVIEW QUESTION / OBJECTIVES The review question is: assistance at mealtimes for older adults in hospital settings and rehabilitation units: what goes on, what works and what do patients, families and healthcare professionals think about it? The specific objectives are: To determine the effectiveness of meal time assistance initiatives for improving nutritional intake and nutritional status for older adult patients in hospital settings and rehabilitation units To identify and explore the perceptions and experiences of older adult patients and those involved with their care with regard to assistance at mealtimes in hospital settings and rehabilitation units This mixed methods review seeks to develop an aggregated synthesis of quantitative and qualitative data on assistance at mealtimes for older adults in hospital settings and rehabilitation units in order to derive conclusions and recommendations useful for clinical practice and policy decision making

What is important for student nurses to know about cancer treatment and care: a qualitative study of student nurses’ and stakeholder perspectives

Aims and Objectives To explore the views of student nurses’ and stakeholders of what is important for student nurses to know about cancer treatment and care. Background Worldwide, the number of people living with cancer is increasing because the population is aging and effective cancer treatments are prolonging survival. All nurses need knowledge, skills, confidence and competence to support people living with cancer. Education is an important tool in preparing a nursing workforce that can support people affected by cancer. Design A descriptive, explorative qualitative design. Methods Semi-structured interviews with 12 student nurses and 7 stakeholders were conducted in 2014 (a sub-group of participants in a mixed-methods study investigating an innovation in undergraduate cancer education and reported elsewhere.) The interviews were audiotaped, transcribed and analysed using content analysis. Results Two key findings emerged: the benefits of learning from people affected by cancer and knowledge deficits. Students valued the opportunity to meet people affected by cancer away from a clinical environment. It gave them the opportunity to gain skills and confidence, in providing information and psycho-educational support, in a safe and facilitated context. Students and stakeholders reported blended learning (lectures and engaging with both cancer clinicians and people affected by cancer) important for developing confidence and competence in cancer care. However, at the end of their education students identified knowledge deficits in relation to; cancer screening, common cancers, treatment side effects and supporting people who have been given “bad news”. Conclusions Collaborative working with people affected by cancer and educationalists has allowed the patient and carer experience to be placed at the centre of the undergraduate cancer education. Relevance to clinical practice This research reveals the potential importance of the co-production of undergraduate nurse cancer education, if nurses are to understand and improve the experience of people living with cancer and beyond. This article is protected by copyright. All rights reserved

An innovation in curriculum content and delivery of cancer education within undergraduate nurse training in the UK. What impact does this have on the knowledge, attitudes and confidence in delivering cancer care?

Purpose: This was an evaluation of an innovation in curriculum content and delivery within undergraduate nursing education in the UK. Its purpose was to investigate the effect on knowledge, attitudes and confidence in delivering cancer care. Methods: The study design was a pre-test post-test survey design with a comparison group. Participants were two cohorts of undergraduate nursing students (nintervention ¼ 84, ncomparison ¼ 91). The intervention cohort were exposed to a new 3.5 day programme of cancer education, coproduced with patients, carers and health professionals, which focused on cancer as a life changing long-term condition. The comparison cohort had been exposed to a 2 day programme produced by a lecturer. Results: Following exposure to the new model for the delivery of undergraduate nurse cancer education, the intervention cohort demonstrated good overall knowledge of the impact of cancer, more positive attitudes towards cancer treatment and more confidence in their ability to deliver cancer care. Attitudes were more positive and confidence in ability to support cancer patients at all stages of the cancer journey were greater than in the comparison group. Insights gained into the cancer patient and carer perspectives were highly valued. Conclusions: This study has found that a new model for the delivery of cancer education focusing on survivorship and delivered in partnership with patients, carers and clinicians, may improve knowledge, attitudes and confidence in the delivery of cancer care. Further work is now needed, using a more robust experimental design, to investigate the generalisability of the results to other education programs

Holistic multimodal care for patients with cancer cachexia and their family caregivers

Patients with cancer cachexia frequently suffer from physical symptoms and psychological symptoms of illness, which can lead to emotional distress in patients and family caregivers. Although there is no standard care to manage cancer cachexia despite its high prevalence and negative impact on quality of life in patients and family caregivers, there is accumulating evidence showing the importance of holistic multimodal care for cancer cachexia. However, there is no agreement on the essential components of holistic multimodal care. Therefore, the aims of this review are to give an overview of what is known about the holistic multimodal care and to suggest the composition of a multidisciplinary team to achieve holistic interventions. Holistic multimodal care for cancer cachexia is defined as an approach that addresses physical health through medical, pharmacological, nutritional, and rehabilitative interventions as well as psychological, emotional, and social well-being issues according to the needs of patients and family caregivers. Moreover, an ideal multidisciplinary team is proposed to achieve holistic interventions based on patient- and family-centered care. However, the development of educational programs on cancer cachexia for both clinicians and patients and family caregivers is needed. Furthermore, measurements to assess the benefits of holistic multimodal care also need to be established

Effectiveness of mindfulness-based stress reduction in mood, breast- and endocrine-related quality of life, and well-being in stage 0 to III breast cancer : a randomized, controlled trial

Purpose To assess the effectiveness of mindfulness-based stress reduction (MBSR) for mood, breast- and endocrine-specific quality of life, and well-being after hospital treatment in women with stage 0 to III breast cancer. Patients and Methods A randomized, wait-listed, controlled trial was carried out in 229 women after surgery, chemotherapy, and radiotherapy for breast cancer. Patients were randomly assigned to the 8-week MBSR program or standard care. Profile of Mood States (POMS; primary outcome), Functional Assessment of Cancer Therapy–Breast (FACT-B), Functional Assessment of Cancer Therapy–Endocrine Symptoms (FACT-ES) scales and the WHO five-item well-being questionnaire (WHO-5) evaluated mood, quality of life, and well-being at weeks 0, 8, and 12. For each outcome measure, a repeated-measures analysis of variance model, which incorporated week 0 measurements as a covariate, was used to compare treatment groups at 8 and 12 weeks. Results There were statistically significant improvements in outcome in the experimental group compared with control group at both 8 and 12 weeks (except as indicated) for POMS total mood disturbance (and its subscales of anxiety, depression [8 weeks only], anger [12 weeks only], vigor, fatigue, and confusion [8 weeks only]), FACT-B, FACT-ES, (and Functional Assessment of Cancer Therapy subscales of physical, social [8 weeks only], emotional, and functional well-being), and WHO-5. Conclusion MSBR improved mood, breast- and endocrine-related quality of life, and well-being more effectively than standard care in women with stage 0 to III breast cancer, and these results persisted at three months. To our knowledge, this study provided novel evidence that MBSR can help alleviate long-term emotional and physical adverse effects of medical treatments, including endocrine treatments. MBSR is recommended to support survivors of breast cancer

How to involve cancer patients at the end of life as co-researchers

The importance of user involvement in the organisation and delivery of health services and the conduct of research has increased over recent decades. Involving people at the end of life in research remains an under-developed area of research activity. The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. Patients and carers, including two participants receiving palliative care services, collaborated in all aspects of the study as coresearchers. In this paper, we discuss the experience of working with co-researchers to collect data from two hospices. We will discuss practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research. Recommendations are made to facilitate successful collaboration with palliative care service users in end of life research. Palliative Medicine 2006; 20: 821 Á82

A randomised, feasibility trial of an Exercise and Nutrition-based Rehabilitation programme (ENeRgy) in people with cancer

From Wiley via Jisc Publications RouterErna Haraldsdottir - ORCID: 0000-0003-4891-0743 https://orcid.org/0000-0003-4891-0743Background: Despite rehabilitation being increasingly advocated for people living with incurable cancer, there is limited evidence supporting efficacy or component parts. The progressive decline in function and nutritional in this population would support an approach that targets these factors. This trial aimed to assess the feasibility of an exercise and nutrition based rehabilitation programme in people with incurable cancer. Methods: We randomized community dwelling adults with incurable cancer to either a personalized exercise and nutrition based programme (experimental arm) or standard care (control arm) for 8 weeks. Endpoints included feasibility, quality of life, physical activity (step count), and body weight. Qualitative and health economic analyses were also included. Results: Forty‐five patients were recruited (23 experimental arm, 22 control arm). There were 26 men (58%), and the median age was 78 years (IQR 69–84). At baseline, the median BMI was 26 kg/m2 (IQR: 22–29), and median weight loss in the previous 6 months was 5% (IQR: −12% to 0%). Adherence to the experimental arm was >80% in 16/21 (76%) patients. There was no statistically significant difference in the following between trial arms: step count − median % change from baseline to endpoint, per trial arm (experimental −18.5% [IQR: −61 to 65], control 5% [IQR: −32 to 50], P = 0.548); weight − median % change from baseline to endpoint, per trial arm (experimental 1%[IQR: −3 to 3], control −0.5% [IQR: −3 to 1], P = 0.184); overall quality of life − median % change from baseline to endpoint, per trial arm (experimental 0% [IQR: −20 to 19], control 0% [IQR: −23 to 33], P = 0.846). Qualitative findings observed themes of capability, opportunity, and motivation amongst patients in the experimental arm. The mean incremental cost of the experimental arm versus control was £‐319.51 [CI −7593.53 to 6581.91], suggesting the experimental arm was less costly. Conclusions: An exercise and nutritional rehabilitation intervention is feasible and has potential benefits for people with incurable cancer. A larger trial is now warranted to test the efficacy of this approach.12pubpub

Development of the EORTC QLQ-CAX24, a questionnaire for cancer patients with cachexia

Context Cachexia is commonly found in cancer patients and has profound consequences; yet there is only one questionnaire that examines the patient's perspective. Objective To report a rigorously developed module for patient self-reported impact of cancer cachexia. Methods Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, health-related quality of life (HRQOL) issues were generated from a literature review and interviews with patients in four countries. The issues were revised based on patient and health care professional (HCP) input. In Phase 2, questionnaire items were formulated and translated into the languages required for Phase 3, the pilot phase, in which patients from eight countries scored the relevance and importance of each item, and provided qualitative feedback. Results A total of 39 patients and 12 HCPs took part in Phase 1. The literature review produced 68 HRQOL issues, with 22 new issues arising from the patient interviews. After patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as a consequence of patient feedback. Conclusions The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, loss of control, and physical decline) and four single items