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Markella Boudioni,1 Susan McLaren,2 Graham Lister2 1NIHR Imperial Biomedical Research Centre & Patient Experience Research Centre, Imperial College London, 2Institute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UK Background: Comparison of patient empowerment (PE) policies in European countries can provide evidence for improvement and reform across different health systems. It may also influence patient and public involvement, patient experience, preference, and adherence.Objective: The objective of this study was to compare PE within national policies, systems, and structures in England and Greece for achieving integrated people-centered health services.Methods: We performed a critical search and review of policy and legislation papers in English and Greek languages. This included 1) general health policy and systems papers, 2) PE, patient and/or public involvement or patients’ rights policy and legislation (1990–2015), and 3) comparative or discussion papers for England and/or Greece.Results: A total of 102 papers on PE policies, systems, and structures were identified initially; 80 papers were included, in which 46 were policy, legislative, and discussion papers about England, 21 were policy, legislation, and discussion papers about Greece, and 13 were comparative or discussion papers including both the countries. In England, National Health Service policies emphasized patient-centered services, involvement, and empowerment, with recent focus on patients’ rights; while in Greece, they emphasized patients’ rights and quality of services, with recent mentions on empowerment. The health ombudsman is a very important organization across countries; however, it may be more powerful in Greece, because of the nonexistence of local mediating bodies. Micro-structures at trusts/hospitals are comparable, but legislation gives more power to the local structures in Greece.Conclusion: PE policies and systems have been developed and expressed differently in these countries. However, PE similarities, comparable dimensions and mechanisms, were identified. For both the countries, comparative research and these findings could be beneficial in building connections and relationships, contributing to wider European and international developments on PE, involvement, and patients’ rights and further impact on patient preferences and adherence. Keywords: patient empowerment, patient involvement, patients’ rights, England, Greece, national health policies

Markella Boudioni,1 Nina Hallett,2 Cristina Lora,2 Wendy Couchman2 1Patient Experience Research Centre (PERC) and NIHR Imperial Biomedical Research Centre (BRC), Imperial College London, 2Faculty of Health and Social Care, London South Bank University, London, UK Purpose: This article presents the emotional journey and experience of powerlessness of integrated care service users and carers. Materials and methods: The experiences of seven integrated care service users and carers affected by complex conditions in a London borough were captured as video stories. The integrated care service coordinated a system of health and social care: primary care, community matrons, social workers, and the voluntary sector. The service was designed to respond to identified cases of high-risk individuals with long-term, multiple, and age-related conditions needing preventive interventions. The video stories were analyzed by researchers in collaboration with service users using a visual thematic qualitative approach. This report is part of an independent analysis of the integrated care service evaluation that used the experience-based codesign model. Results: The findings are presented in the respective contexts of people with complex conditions and their carers. The overwhelming feelings and emotions of both were loss of control and power throughout their emotional journey, with family carers adopting a protective attitude toward the patients. Their experience of powerlessness was variable throughout their emotional journey. They were affected more strongly when in need of extra help and support and while they were undergoing the process of receiving extra services. When they were receiving help and support outside and within hospitals, some participants were empowered, gaining skills and knowledge by being provided with the mechanisms to cope with their condition at present and in the future. Conclusion: Feelings of powerlessness were very common among integrated care service users and their carers. Powerless/empowerment has been poorly investigated to date. Visual methods and collaborative visual analysis with service users have proved to be powerful methods too, but have been rarely reported. Keywords: visual methods, collaborative research, patients, complex conditions, UK

Markella Boudioni, Susan McLaren, Ruth Belling, Leslie WoodsInstitute for Leadership and Service Improvement, Faculty of Health and Social Care, London South Bank University, London, UKAim: To explore tuberculosis (TB) service users' experiences and satisfaction with care provision.Background: Thirty-nine percent of all new UK TB cases occur in London. Prevalence varies considerably between and within boroughs. Overall, research suggests inadequate control of London's TB transmission; TB has become a health care priority for all London Primary Care Trusts. Service users' experiences and satisfaction with care provision have not been explored adequately previously.Methods: A qualitative research design, using semi-structured face-to-face interviews was used. Ten service users, purposively selected in key risk groups across London, were interviewed. All interviews were digitally recorded with users' permission, transcribed verbatim, and analyzed thematically.Results: Participants were treated in local hospitals for 6–12 months. Treatment was administered by TB nurses to inpatients and outpatients receiving directly observed therapy in consultation with medical staff and home visits for complex cases. Two participants did not realize the importance of compliance. Overall, they were satisfied with many TB services' aspects, communication, and service organization. Early access, low suspicion index amongst some GPs, and restricted referral routes were identified as service barriers. Other improvement areas were information provision on drug side effects, diet, nutritional status, and a few health professionals' attitudes. The effects on people varied enormously from minimal impact to psychological shock; TB also affected social and personal aspects of their life. With regard to further support facilities, some positive views on managed accommodation by TB-aware professionals for those with accommodation problems were identified.Conclusion: This first in-depth study of TB service users' experiences across London offers valuable insights into service users' experiences, providing information and recommendations for a strategic framework for TB service organization and delivery. Overall, further research is needed; TB services – local, national, and international – need to be more closely aligned with service users' complex needs.Keywords: qualitative study, interviews, TB, service organization, services improvement

This paper describes clients' accounts of the benefits they derived from a short course of cancer counselling provided within a humanist framework. Three hundred and two clients who had attended at least one session of a short course of cancer counselling received an evaluation form, which incorporated both fixed-choice and open-ended questions. One hundred and forty two (47%) clients returned evaluation forms; those who had attended more sessions were significantly more likely to do so. Quantitative data were analysed using SPSS (Statistical Package for the Social Sciences) for Windows and qualitative data using a thematic approach. Almost all clients indicated that they felt they had benefited from counselling. Analysis of the open-ended questions identified nine main benefits of counselling and four key avenues or processes through which clients derived these benefits. Overall, counselling was seen as helping them to work through powerful thoughts and feelings and so to come to terms with cancer and to regain a sense of control in their lives. The benefits of a short course of counselling which clients identified reflect the aims of humanistic counselling which are not well captured by psychiatric assessments or most standard research instruments. In evaluating cancer counselling services, assessments which include these client-defined outcomes may provide a more sensitive way of gauging the value of counselling to a non-clinic population. [ABSTRACT FROM AUTHOR]

BOUDIONI M., MOSSMAN J., BOULTON M. & HARDY P. (2004) European Journal of Cancer Care 13, 6–10 Differences in enquiries to CancerBACUP information service by living arrangements The study's aim was to ascertain whether living alone is associated with the use of an independent cancer information service. An Enquirer Record Form is completed for every fifth enquirer to the service; two questions asking whether enquirers, patients, relatives/friends were living alone or with others where asked in association with the routine questions. A total of 552 callers were asked in a 5-week period, 77% of all callers in these categories. The main findings were: (1) the proportion of enquirers living alone was similar to the general population; (2) among enquirers, patients were more likely to live alone than relatives/friends; (3) requests differed by whether living alone and by type of enquirer, for example, significantly more people living with others requested emotional support than those living alone, and this contrast was most marked for patients than relatives/friends. This study, notwithstanding its limitations, highlights some of the differences in the use of a service and demonstrates the complexity of information and support seeking. [ABSTRACT FROM AUTHOR]

A retrospective comparison of cancer incidence data and, where relevant, population data with 16,955 first-time users (patients, relatives and friends) of a national cancer information service (CancerBACUP) during the period April 1995 to March 1996 is presented. The number of events observed was compared with the number of events expected, were the national rates of cancer incidence and population demographics apply. Standardized incidence ratios (SIRs) (observed - expected ratios) were used to indicate any differences. Statistically significant differences (P < 0.001) in the observed and expected sex, age and primary site distribution of patients enquired about were found. Statistically significant differences (P < 0.001) were also identified for the age, employment status, socioeconomic class and geographical location of first-time enquirers (patients, relatives and friends). Enquiries about brain, testis and breast cancers and non-Hodgkin's lymphoma (NHL) were substantially higher than expected; enquiries about bladder, lung, stomach and colorectal cancers were much lower than expected. As the service is provided via a freephone number, it is available to all, and users might be expected to be randomly distributed across the variables listed. The underlying reasons for the differences identified need to be investigated, and the role of information in the care of cancer patients should be formally evaluated. [ABSTRACT FROM AUTHOR]

Abstract Background London has the largest proportion of tuberculosis (TB) cases of any western European capital, with almost half of new cases drug-resistant. Prevalence varies considerably between and within boroughs with research suggesting inadequate control of TB transmission in London. Economic pressures may exacerbate the already considerable challenges for service organisation and delivery within this context. This paper presents selected findings from an evaluation of London’s TB services’ organisation, delivery, professional workforce and skill mix, intended to support development of a strategic framework for a pan-London TB service. These may also interest health service professionals and managers in TB services in the UK, other European cities and countries and in services currently delivered by multiple providers operating independently. Methods Objectives were: 1) To establish how London’s TB services are structured and delivered in relation to leadership, management, organisation and delivery, coordination, staffing and support; 2) To identify tools/models for calculating skill mix as a basis for identifying skill mix requirements in delivering TB services across London; 3) To inform a strategic framework for the delivery of a pan-London TB service, which may be applicable to other European cities. The multi-method service audit evaluation comprised documentary analysis, semi-structured interviews with TB service users (n = 10), lead TB health professionals and managers (n = 13) representing London’s five sectors and focus groups with TB nurses (n = 8) and non-London network professionals (n = 2). Results Findings showed TB services to be mainly hospital-based, with fewer community-based services. Documentary analysis and professionals’ interviews suggested difficulties with early access to services, low suspicion index amongst some GPs and restricted referral routes. Interviews indicated lack of managed accommodation for difficult to treat patients, professional workforce shortages, a need for strategic leadership, nurse-led clinics and structured career paths for TB nurses and few social care/outreach workers to support patients with complex needs. Conclusions This paper has identified key issues relating to London’s TB services’ organisation, delivery, professional workforce and skill mix. The majority of these present challenges which need to be addressed as part of the future development of a strategic framework for a pan-London TB service. More consistent strategic planning/co-ordination and sharing of best practice is needed, together with a review of pan-London TB workforce development strategy, encompassing changing professional roles, skills development needs and patient pathways. These findings may be relevant with the development of TB services in other European cities.

The COVID-19 pandemic challenged the NHS to make rapid adjustments to practice to ensure that patients could continue to access vital treatments while reducing the risk of infection. A roundtable discussion was convened, including professionals from cancer care delivery and those working in patient involvement, to discuss experiences during the pandemic and to offer recommendations for the safe transition and implementation of cancer care in the community setting.

Introduction: International health policies recognise patient empowerment, resulting in diverse empowerment models and systems. Research on organisational systems for implementing patient empowerment between countries or from organisational stakeholders' perspective, however, is limited. Aims and methodology: This paper explores and compares organisational systems and structures for patient empowerment implementation in six acute public hospitals in England and Greece (three in each country), their cross-case and cross-national similarities and differences. It uses a comparative, qualitative, explanatory embedded case study design. Semi-structured interviews with a representative sample of stakeholders (n = 33) and documentary sources (n = 79) were analysed with framework., Results: Two main patient empowerment themes were identified: (1) organisational leadership, systems, structures; (2) operational structures, services, mechanisms and activities. Generic organisational systems and structures for patient empowerment varied across-cases, but with common organisation of empowerment roles in England and common leadership in Greece. Operational structures, services and mechanisms supporting empowerment varied across-cases and cross-nationally, but with similarities in the main services., Conclusion: Implementation of patient empowerment was weaker in Greece than in England, attributable to differing approaches to strategic and operational leadership, limited development of strategies and influential organisational structures. Overall, patient empowerment is well-embedded in organisations with a highly visible patient empowerment profile; commitment to policies and strategy implementation at different levels; strategic and operational leadership investing in dedicated roles with clear authority for patient empowerment, influential empowerment structures and mechanisms.

Aim: To examine the uptake of religious rituals of the Greek Orthodox Church by relatives of patients in critical condition in Greece and to explore their symbolic representations and spiritual meanings., Background: Patients and their relatives want to be treated with respect and be supported for their beliefs, practices, customs and rituals. However nurses may not be ready to meet the spiritual needs of relatives of patients, while the health-related religious beliefs, practices and rituals of the Greek Orthodox Christian denomination have not been explored., Method: This study was part of a large study encompassing 19 interviews with 25 informants, relatives of patients in intensive care units of three large hospitals in Athens, Greece, between 2000 and 2005. In this paper data were derived from personal accounts of religious rituals given by six participants., Results: Relatives used a series of religious rituals, namely blessed oil and holy water, use of relics of saints, holy icons, offering names for pleas and pilgrimage., Conclusion: Through the rituals, relatives experience a sense of connectedness with the divine and use the sacred powers to promote healing of their patients., Implications for Nursing Management: Nurse managers should recognize, respect and facilitate the expression of spirituality through the practice of religious rituals by patients and their relatives., (© 2012 Blackwell Publishing Ltd.)

Critical care hospitalisation is emotionally overwhelming for the relatives of patients. Research has shown that religiosity is an effective coping resource for people with health related problems and has been correlated with better health outcomes. However the processes by which religiosity is utilized and its effects on relatives of critically ill patients have not been adequately explored. This article presents relatives' experiences and processes of religiosity; it is part of a wider grounded theory study on the experiences of critically ill patients' relatives in Greece. Twenty-five relatives of patients in the intensive care units of three public general district hospitals in Athens, Greece, participated in 19 interviews. Religiosity was found to be the main source of hope, strength and courage for relatives and was expressed with church/monastery attendance, belief in God, praying, and performing religious rituals. Health care professionals should pay attention and understand these aspects of coping.

Objectives: To identify and explore leadership roles and responsibilities for implementing the workforce development strategy; to identify approaches used to implement and disseminate the strategy; and to identify and explore challenges and achievements in the first 18 months following implementation., Design: A formative evaluation with qualitative methods was used. Documentary analysis, interviews (n = 29) and two focus groups (n = 12) were conducted with a purposive sample of individuals responsible for strategy implementation. Data were transcribed and analysed thematically using framework analysis., Setting: Regional health area in Kent, Surrey and Sussex: 24 primary care trusts (PCTs) and 900 general practices., Results: Primary care workforce tutors, lifelong learning advisors, GP tutors, patch associate GP deans and chairs of PCT education committees all had vital leadership roles, some existing and others newly developed. Approaches used to implement the strategy encompassed working within and across organisational boundaries, communication and dissemination of information. Challenges encountered by implementers were resistance to change - evident in some negative attitudes to uptake of training and development opportunities - and role diversity and influence. Achievements included successes in embedding appraisal and protected learning time, and changes in educational practices and services., Conclusions: The use of key leadership roles and change-management approaches had brought about early indications of positive transition in lifelong learning cultures.

OBJECTIVE: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. DESIGN: Qualitative study based on in-depth interviews. SETTING: Outpatient oncology clinics at a London cancer center. PARTICIPANTS: 17 patients with cancer diagnosed in previous 6 months. Main outcome measures Analysis of patients' narratives to identify key themes and categories. RESULTS: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information : faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. CONCLUSIONS: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

Objectives: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness., Design: Qualitative study based on in-depth interviews., Setting: Outpatient oncology clinics at a London cancer centre., Participants: 17 patients with cancer diagnosed in previous 6 months., Main Outcome Measures: Analysis of patients' narratives to identify key themes and categories., Results: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable., Conclusions: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.