Service user involvement in cancer care: the impact on service users.

BACKGROUND: Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. OBJECTIVE: To explore the personal impact of involvement on the lives of service users affected by cancer. DESIGN: We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. SETTING AND PARTICIPANTS: Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. RESULTS: We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. CONCLUSIONS: This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

Getting ready for user involvement in a systematic review.

OBJECTIVE: This paper aims to support the critical development of user involvement in systematic reviews by explaining some of the theoretical, ethical and practical issues entailed in 'getting ready' for user involvement. BACKGROUND: Relatively few health or social care systematic reviews have actively involved service users. Evidence from other research contexts shows that user involvement can have benefits in terms of improved quality and outcomes, hence there is a need to test out different approaches in order to realize the benefits of user involvement and gain a greater understanding of any negative outcomes. DESIGN: Setting up a service-user reference group for a review of user involvement in nursing, midwifery and health visiting research involved conceptualizing user involvement, developing a representation framework, identifying and targeting service users and creating a sense of mutuality and reciprocity. SETTING AND PARTICIPANTS: Recruitment was undertaken across England by two researchers. Members from 24 national consumer organizations were selected to participate in the review. MAIN VARIABLES STUDIED: Learning was gained about finding ways of navigating consumer networks and organizations, how best to communicate our goals and intentions and how to manage selection and 'rejection' in circumstances where we had stimulated enthusiasm. RESULTS AND CONCLUSIONS: Involving service users helped us to access information, locate the findings in issues that are important to service users and to disseminate findings. User involvement is about relationships in social contexts: decisions made at the early conceptual level of research design affect service users and researchers in complex and personal ways.

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

Patients' needs assessment in cancer care: a review of assessment tools.

BACKGROUND: The assessment of patients' needs for care is a critical step in achieving patient-centred cancer care. Tools can be used to assess needs and inform care planning. This review discusses the importance of systematic assessment of needs in routine care and the contribution tools can make to this process. METHOD: A rapid appraisal was undertaken to identify currently available tools for patient assessment in cancer care through searches conducted with Medline and CINHAL databases. It focused on tools for the systematic assessment of individual patients' needs for help, care or support, to be used for clinical purposes-not for research or other purposes. Tools that focused on a single domain of care such as psychosocial needs were excluded, as were studies of patient satisfaction. A wide list of search terms was used, with references stored and managed using bibliographic software. RESULTS: In all, 1,803 papers were identified from the initial search, with 91 papers found to be relevant; although 36 tools were identified, only 15 tools were found to fit our criteria. These were appraised for their validity, reliability, responsiveness to change and feasibility, including acceptability to patients. The process of their development and psychometric properties were reasonably well documented, but data on how feasible they were to use in practice was scarce. Each tool met some but not all the widely accepted criteria for validity, reliability, responsiveness and burden. None were found to be complete for all dimensions of needs assessment. Most have not been sufficiently well tested for use in routine care. CONCLUSION: There is a need to continue to develop and test tools that have the attributes necessary for effective practice and to research their effects on the quality of supportive cancer care.

Interprofessional collaboration with service users in the development of cancer services: the Cancer Partnership Project.

Patient and Public Involvement (PPI) is a cornerstone of UK National Health Service (NHS) policy. The Cancer Partnership Project (CPP) is the leading national PPI initiative in cancer care. The CPP espouses a "partnership" model, with a "Partnership Group" - collaborative service improvement groups formed of NHS staff and service users - in each of 34 cancer networks in England. These groups aim to enable service users to influence local cancer service development and thereby improve the effectiveness of services. We interviewed 59 cancer service users and NHS staff in a reflective evaluation of CPP. Groups were active and visible in 30 networks, their main activities being: providing an accessible source of consumer opinion; prolific networking and representation; patient information and communication projects; and lobbying for service improvements. The groups exhibited some significant tensions. The motivations of professional staff varied markedly, and "obligatory" involvement as part of a person's job was counter-productive when not coupled with a "personal" belief in the value of PPI. Other controversial areas were the disclosure by patients' of personal health and treatment experiences, and emotional attachment to the group. It was concluded that partnership groups represent a useful PPI model, but more attention generally should be paid to the complexities of PPI and timescales required for meaningful cultural change.

'Working the system'. Achieving change through partnership working: an evaluation of cancer partnership groups.

AIMS AND OBJECTIVES: To investigate the characteristics and achievements of cancer partnership groups--collaborative service improvement groups formed of NHS staff and service users--in the 34 cancer networks in England, and in particular to explore the influence that such groups had on local cancer services. DESIGN: A qualitative approach employing a structured telephone survey, face-to-face interviews and documentary analysis. PARTICIPANTS AND SETTING: Thirty cancer networks in England with an active Partnership Group completed the telephone survey. From these 30 networks, six networks were subsequently selected from which service users and NHS professionals involved in partnership groups and NHS professionals who were non-members were recruited to take part in face-to-face interviews. RESULTS AND CONCLUSIONS: Partnership groups were established in the majority of cancer networks. Typically, these groups were at network level, been established for less than a year, met once every 2 months, and were populated with both service users and health-care professionals. Five common activities and achievements were identified: establishment of the group itself; acting as a 'reference' group for consultation; networking and representation on other groups; patient information and communication and proactive influencing. Activities progressed in scale and complexity as groups evolved. Groups had learnt the basics of change management and some identified a more sophisticated understanding of change processes in the NHS as essential for the group's motivation and survival. When gauging the impact of involvement strategies it would seem important to subscribe to broad indicators of success that include both process and outcome measures.

Good practice in the conduct and reporting of survey research.

Survey research is sometimes regarded as an easy research approach. However, as with any other research approach and method, it is easy to conduct a survey of poor quality rather than one of high quality and real value. This paper provides a checklist of good practice in the conduct and reporting of survey research. Its purpose is to assist the novice researcher to produce survey work to a high standard, meaning a standard at which the results will be regarded as credible. The paper first provides an overview of the approach and then guides the reader step-by-step through the processes of data collection, data analysis, and reporting. It is not intended to provide a manual of how to conduct a survey, but rather to identify common pitfalls and oversights to be avoided by researchers if their work is to be valid and credible.

Barriers to research utilisation: the clinical setting and nurses themselves.

The advance of the evidence-based practice (EBP) movement has been evident in almost every Western country and health system over the past two or three decades, fuelled by an ever-rising demand on resources. Nurses at all levels are increasingly expected to address the key challenge of EBP, which is to use research evidence in a conscientious, explicit and judicious way when making decisions about patient care. The main aim of the paper is to encourage nurses to embrace the challenge of EBP. First, as background, this paper presents key findings from the limited body of research which has examined barriers to research utilisation in the nursing context. Nurses generally feel there are many barriers, with primary barriers being lack of time, lack of relevant skills, poor team-working and several aspects of nursing 'culture' (ritualistic care, no authority and no incentives). Some conceptual models in implementation of research findings are introduced, and a summary presented of key areas which nurses need to address when considering research utilisation.

Lymphoedema 4: research priorities in lymphoedema care.

This article, the last in the series on lymphoedema, presents a survey of priorities in lymphoedema research conducted among lymphoedema treatment practitioners in the UK. Using a two-stage survey method, members of the British Lymphology Society were asked to identify areas lacking in a good evidence base which were crucial for informing clinical decision-making and service developments. Nine priority research questions were identified by the practitioners, with general agreement among respondents of the ranking order. The highest-ranking questions were: (1) What are the risk factors associated with lymphoedema? (2) How do we best treat skin infection/inflammation? (3) How effective is manual lymphatic drainage compared to other treatments?