A qualitative study exploring the views, attitudes and beliefs of patients and health professionals towards exercise intervention for people who are surgically treated for lung cancer.

Surgical removal remains the best curative option for patients diagnosed with early-stage lung cancer. However, it is also associated with significant morbidity and reduced quality of life. Interventions to improve patient outcomes are required. This study aimed to explore the views, attitudes and beliefs of key stakeholders on exercise intervention for people who are surgically treated for lung cancer to inform the development of future interventions. Focus groups and individual interviews were carried out at two Scottish sites. The study was guided by the Health Action Process Approach behaviour change model. A total of 23 (12 patients and 11 health professionals) participated in the study. The data analysis resulted in three main themes: attitudes and beliefs, external factors and intervention design. The results highlighted certain key elements that should be included in an exercise intervention, such as the need for supervised sessions, an element of individualisation and the perceived social benefits of exercising with others. This study emphasises the importance of including key stakeholders in the development of complex interventions such as exercise and provides important information for the development of future exercise intervention trials for people who are surgically treated for lung cancer.

The symptom phenotype of oncology outpatients remains relatively stable from prior to through 1 week following chemotherapy.

Some oncology outpatients experience a higher number of and more severe symptoms during chemotherapy (CTX). However, little is known about whether this high risk phenotype persists over time. Latent transition analysis (LTA) was used to examine the probability that patients remained in the same symptom class when assessed prior to the administration of and following their next dose of CTX. For the patients whose class membership remained consistent, differences in demographic and clinical characteristics, and quality of life (QOL) were evaluated. The Memorial Symptom Assessment Scale (MSAS) was used to evaluate symptom burden. LTA was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of the MSAS symptoms. Of the 906 patients evaluated, 83.9% were classified in the same symptom occurrence class at both assessments. Of these 760 patients, 25.0% were classified as Low-Low, 44.1% as Moderate-Moderate and 30.9% as High-High. Compared to the Low-Low class, the other two classes were younger, more likely to be women and to report child care responsibilities, and had a lower functional status and a higher comorbidity scores. The two higher classes reported lower QOL scores. The use of LTA could assist clinicians to identify higher risk patients and initiate more aggressive interventions.

The supportive care needs of carers of people affected by cancer stationed in British Forces Germany.

Carers are central to the effective support of people affected by cancer. Little is known however about the specific support needs of carers of military personnel. This study aimed to determine the supportive care needs of unpaid carers within British Forces (including military/civilian personnel, their families and dependent adults) currently stationed in Germany. Qualitative semi-structured interviews were conducted with seven carers (six men and one woman) in three British army garrisons across Germany, to identify core aspects of the experience of caregiving in this environment. Analysis of interviews with carers was based on qualitative thematic and content analysis. Three key themes were identified: (1) impact on carers of their partners being diagnosed with cancer; (2) provision of support; and (3) challenges to accessing and obtaining support. Central issues pivot around the context of working and living in the armed forces and a lack of supportive care infrastructure. While drawing on a small sample size, this study nonetheless identifies that carers of people with cancer within the armed forces, who are stationed in Germany require a specialised and contextually specific set of services to address their supportive care needs.

Children's understanding of cancer and views on health-related behaviour: a 'draw and write' study.

BACKGROUND: Few studies have explored young children's understanding of cancer and health-related behaviours yet this is essential to develop health promotion initiatives that build on young children's current knowledge levels and awareness. METHOD: An exploratory descriptive design using the 'draw and write' technique was used to investigate children's views of cancer and health behaviours. The sample included 195 children aged eight to 11 years from five schools in deprived, affluent and rural locations in Scotland. RESULTS: When asked about cancer children demonstrated a good level of awareness by responding with text and drawings about the what they understood cancer to be; types of cancer; causes of cancer; what happens to people who have cancer; their personal experience of cancer and the emotions they associated with cancer. Older children, and children attending affluent schools, have more defined ideas about the causes of cancer and awareness of broader issues such as the risk of passive smoking or the potential impact on the family. Factors such as alcohol and illegal drugs were only reported by children attending schools in deprived locations. Children demonstrated considerable knowledge about healthy and unhealthy lifestyle behaviours; however, it is not clear whether this knowledge translates into their behaviours or the choices offered within their home environment. CONCLUSIONS: Children view cancer in a negative way from an early age, even without personal experience. There is a need to demystify cancer in terms of its causes, how to recognize it, how it is treated and to publicize improved survival rates. There is a need for targeted and developmentally appropriate approaches to be taken to health education in schools, with an awareness of the influence of the media on children's information. Strategies should take into consideration the socio-economic and cultural contexts of children's lives which influence their choices and behaviours.

'Quite an awkward situation to be in': perceptions of patients, carers and health and social care professionals of the supportive cancer care in British military personnel stationed in Germany.

GOALS OF WORK: This paper reports findings from a study which identified the nature and volume of supportive care received by British military services personnel and their dependents who experience cancer and are based in Germany. The objectives were to (1) identify any gaps in the provision of supportive care, (2) determine the potential for additional supportive care services (local or remote), and (3) identify any educational or development issues for DMWS personnel. MATERIALS AND METHODS: Interviews and focus groups were conducted with people with cancer (n = 7), informal carers (n = 6), British health care professionals employed by British Forces in Germany (n = 8), German health care professionals (n = 3), senior military personnel (n = 6) and army support personnel (n = 5). Analysis of the data was thematic and focused on accounts of care related to core issue identified in the UK's National Institute of Health and Clinical Excellence (NICE) guidelines (24). MAIN RESULTS: The paper explores the difficulties which British military personnel experience in their cancer care. The shortfalls in best practice are discussed in the framework of NICE guidelines focusing on communication, information, psychosocial care and coordination of care/inter-agency working. Significant gaps in the supportive care service provision are apparent CONCLUSIONS: The limited assessment and discussion of patients' supportive care needs suggests key areas for service improvement for providers both within the British Military in Germany, and in the services provided by German organisations. These findings highlight issues that should be considered by those providing supportive care for marginalised patient groups, such as patients and carers from different cultures.

Evaluation of a mobile phone-based, advanced symptom management system (ASyMS) in the management of chemotherapy-related toxicity.

OBJECTIVES: To evaluate the impact of a mobile phone-based, remote monitoring, advanced symptom management system (ASyMS) on the incidence, severity and distress of six chemotherapy-related symptoms (nausea, vomiting, fatigue, mucositis, hand-foot syndrome and diarrhoea) in patients with lung, breast or colorectal cancer. DESIGN: A two group (intervention and control) by five time points (baseline, pre-cycle 2, pre-cycle 3, pre-cycle 4 and pre-cycle 5) randomised controlled trial. SETTING: Seven clinical sites in the UK; five specialist cancer centres and two local district hospitals. PARTICIPANTS: One hundred and twelve people with breast, lung or colorectal cancer receiving outpatient chemotherapy. INTERVENTIONS: A mobile phone-based, remote monitoring, advanced symptom management system (ASyMS). MAIN OUTCOME MEASURES: Chemotherapy-related morbidity of six common chemotherapy-related symptoms (nausea, vomiting, fatigue, mucositis, hand-foot syndrome and diarrhoea). RESULTS: There were significantly higher reports of fatigue in the control group compared to the intervention group (odds ratio = 2.29, 95%CI = 1.04 to 5.05, P = 0.040) and reports of hand-foot syndrome were on average lower in the control group (odds ratio control/intervention = 0.39, 95%CI = 0.17 to 0.92, P = 0.031). CONCLUSION: The study demonstrates that ASyMS can support the management of symptoms in patients with lung, breast and colorectal cancer receiving chemotherapy.

Prioritization of future research topics for children's hospice care by its key stakeholders: a Delphi study.

The Delphi process, widely used in health research to seek consensus on key issues amongst large stakeholder groups, was adopted to allow families, hospice staff/volunteers and linked professionals to identify and prioritize future research priorities for children's hospice care. In the qualitative Round 1, interviews with families (n = 5), linked professionals (n = 18) and focus groups with hospice staff and volunteers (n = 44) led to the generation of 56 research topics categorised within 14 broad themes. To give a larger number of stakeholders (n = 621) (including families n = 293; hospice staff/volunteers n = 216 and professionals n = 112) the opportunity to rate the importance of each research topic and seek group consensus on the future research priorities for children's hospice care, subsequent Rounds 2 and 3 involved the use of postal questionnaires. Response rates to questionnaires were 44% in Round 2 (274/621) and 83% in Round 3 (204/247). Participants prioritized research topics relating to 1) hospice and respite care needs of young people (aged 16 +), 2) pain and symptom management and 3) bereavement and end-of-life care. There was wide acknowledgement by those took part in the process of the difficulty in rating the topics, and emphasis on the fact that all of the topics raised during the project are of high importance and merit further research. The current salient issues perceived by key stakeholders as being the research priorities for children's hospice care were identified. Addressing these priority topics for research would further contribute to the development of a much needed evidence base in children's hospice and palliative care research and optimise the delivery of children's hospice services that are underpinned by valid and robust research.

Patients' perceptions and experiences of using a mobile phone-based advanced symptom management system (ASyMS) to monitor and manage chemotherapy related toxicity.

Chemotherapy forms a core component of treatment for the majority patients with cancer. Recent changes in cancer services mean patients frequently receive such treatment as outpatients and are often required to manage side effects at home without direct support from oncology health professionals. Information technology continues to develop to support patients in the community; this study evaluated the impact of a mobile phone-based advanced symptom management system (ASyMS) on chemotherapy related toxicity in patients with lung, breast or colorectal cancer. One hundred and twelve patients were randomized from seven clinical sites across the UK; 56 patients used the mobile phone to record their symptoms, sending their reports directly to the nurses at their clinical site; 56 control group patients received standard care. Health professionals were alerted about any severe or life-threatening symptoms through the development of a chemotherapy symptom risk model. Patients' perceptions of ASyMS were evaluated pre and post participation. Patients reported many benefits of using ASyMS including improved communication with health professionals, improvements in the management of their symptoms, and feeling reassured their symptoms were being monitored while at home. ASyMS has the potential to positively impact on the management of symptoms in patients receiving chemotherapy treatment.

Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care.

The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.

Researching experiences of terminal cancer: a systematic review of methodological issues and approaches.

The objectives of this review were to assess the methods and approaches applied to end-of-life cancer research based on papers focusing on approaches or methodological issues related to seeking the views of people affected by terminal cancer. A comprehensive search of 10 databases (January 1980-February 2004) was undertaken. References were screened, quality assessed and data extracted by two reviewers. Analysis followed a meta-narrative approach. Fifteen papers were included. They discussed 'traditional' approaches, such as focus groups, interviews, surveys, as well as innovative approaches allied to the arts. They reveal that mixed methods are gaining popularity. The emotional demands placed on researchers and the ethical issues involved in this research area were also discussed. We concluded that researchers should embrace innovative approaches from other areas of social science, such as the use of arts-based techniques. This may facilitate recruitment of the hard-to-reach groups and engage with experiences that may be otherwise difficult to verbalize. Although researching the needs of the dying carries challenges, these are not the exclusive domain of the cancer field. This study reveals that diverse methods, from research-based drama to postal questionnaires, can enhance end-of-life research. However, this review reveals the need for more methodological work to be undertaken and disseminated.

Nurse's perceptions and experiences of using of a mobile-phone-based Advanced Symptom Management System (ASyMS) to monitor and manage chemotherapy-related toxicity.

Many people diagnosed with cancer will receive chemotherapy as a core component of their care. Recent changes in the delivery of cancer services mean that patients frequently receive care on an out-patient basis and are therefore often required to manage related side effects at home without direct support from oncology health professionals. The use of information and communications technology may be seen as a means of supporting patients receiving chemotherapy in the home care setting. This mixed methods study, reports on the perceptions of nurses (n=35) who participated in a randomised controlled trial of a mobile phone based, Advanced Symptom Management System (ASyMS), in the management of chemotherapy-related toxicity in patients with breast, lung and colorectal cancer. Nurses' perceptions of ASyMS were evaluated at the start and the end of the study. Overall, they could see the benefits of ASyMS in the remote monitoring of chemotherapy toxicity and its role in facilitating early intervention and subsequent management, demonstrating the potential utility of the system within clinical practice.