Consumer participation in acute care settings : an Australian experience

Consumer partnerships have been embraced as an important component of building high quality health care services. While nurses have the greatest contact with clients in hospital, little is known of their views about consumer participation or how they facilitate that participation at the bedside. Using focus group interviews and participant observation methods, this project explored nurses' approaches to working with consumers to support their participation in health care delivery. Findings indicate a sharp contrast between the ideas that nurses expressed and the actions observed in practice. It was clear from the interviews that nurses had adopted the rhetoric surrounding consumer participation, yet observational data revealed nursing practices that excluded active participation by consumers. Factors influencing nurses' facilitation of consumer participation were identified as the division of nursing labour in the setting, limited communication between nurses and patients and environmental constraints.

Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context.

Consumer participation in the regulatory process /

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Understanding consumer participation in mental health: issues of power and change

Consumer participation occurs in all Victorian public mental health services. Area mental health services employ consumer consultants to enhance consumer participation across the network. Ongoing support of management is essential to the success of consumer participation. This project aimed to explore understandings of consumer participation from a manager's perspective. Semistructured interviews were conducted with seven participants in this qualitative, interpretive study. The thematic analysis revealed the complexities around defining consumer participation and demonstrated the difficulties and possible reasons as to why there is no real clarity between managers, service providers, and consumers as to what consumer participation should look like. Power and change were the primary themes. Power and the overwhelming consensus that the medical model and those working within it hold the most power was strongly represented in this study. Legislation and workplace settings were seen as considerable factors adding to the disempowerment of consumers within an already disempowering mental health system. Change was the other main theme that emerged, with culture and attitudes of the old ‘institutionalized’ thinking that still pervades some pockets of mental health services being seen as the major barriers to change. The role of the consumer consultant was a prominent subtheme, with their role in training and the education of workers seen as an essential and positive way to progress consumer participation. These findings demonstrate that managers consider there to be hope for consumers, brought about by collective action and lobbying, and through consumer participation in less-restrictive parts of the service (community settings).

Consumer participation: power and change

Although the literature is replete with well documented studies very little research has been carried out specifically on burnout among mental health nurses.

Multiple visions or multiple aversions? Consumer representation, consultation and participation in maternity issues

This paper reviews the Commonwealth government's policy of 'purposeful reporting to consumers'. I argue that the notion of consumer participation is underdeveloped. Consumers' needs will not be fully met by confining consumer representation at the administrative level; that is, in assuming that consumer advocates may speak for other consumers of health care services. The partnership objective at the heart of 'purposeful reporting' may be addressed fully only when practitioners and providers recognise the reciprocal expertise of the consumer in defining their own health priorities. This would require a new model of knowledge, of ethics and of the clinical encounter. The problem is not one of information deficit but of contrasting views of knowledge.

Responsiveness of the Effective Consumer Scale (EC-17)

Objective. The Effective Consumer Scale (EC-17) comprises 17 items measuring the main skills and behaviors people need to effectively manage their healthcare. We tested the responsiveness of the EC-17. Methods. Participants, in 2 waves of a 6-week Arthritis Self-Management Program (ASMP) from Arthritis Ireland, received a questionnaire at the first and last week of the weekly ASMP. The questionnaire included the EC-17 and 10 other measures for arthritis. Deficits, mean change, and standard deviations were calculated at baseline and Week 6. The EC-17 scores were compared to the Arthritis Self-Efficacy (ASE) and Patient Activation Measure (PAM) scales. Results were presented at OMERACT 9. Results. There is some overlap between the EC-17 and the ASE and PAM; however, most items of greatest deficit in the EC-17 are not covered by those scales. In 327 participants representing both intervention waves (2006 and 2007), the EC-17 was more efficient than the ASE but less efficient than the PAM for detecting improvements after the ASMP, and was moderately correlated with the PAM. Conclusion. The EC-17 appears to measure different skills and attributes than the ASE and PAM. Discussions with participants at OMERACT 9 agreed that it is worthwhile to measure the skills and attributes of an effective consumer, and supported the development of an intervention (such as proposed online decision aids) that would include education in the categories in the EC-17.

Time to change consumer involvement in nursing research

The experiences of people affected by cancer are at the very heart of nursing research efforts. Because much of our work is focused on understanding how to improve experiences and outcomes for people with cancer, it is easy for us to believe that our research is inherently "person centered" and thus collaborative. Let's reflect on what truly collaborative approaches to cancer nursing research could be like, and how we measure up to such goals. Collaboration between people affected by cancer (consumers) and nurses in research is much more than providing a voice for individuals as participants in a research study. Today, research governing bodies in many countries require us to seek a different kind of consumer participation, where consumers and researchers work in partnership with one another to shape decisions about research priorities, policies, and practices.1 Most granting bodies now require explanations of how consumer and community participation will occur within a study. Ethical imperatives and the concept of patient advocacy also require that we give more considered attention to what is meant by consumer involvement.2 Consumers provide perspective on what will be relevant, acceptable, feasible, and sensitive research, having lived the experience of cancer. As a result, they offer practical insights that can ensure the successful conduct and better outcomes from research. Some granting bodies now even allocate a proportion of final score or assign a "public value" weighting for a grant, to recognize the importance of consumer involvement and reflect the quality of patient involvement in all stages of the research process.3

What women want : qualitative analysis of consumer evaluations of maternity care in Queensland, Australia

Background Maternity care reform plans have been proposed at state and national levels in Australia, but the extent to which these respond to maternity care consumers’ expressed needs is unclear. This study examines open-text survey comments to identify women’s unmet needs and priorities for maternity care. It is then considered whether these needs and priorities are addressed in current reform plans. Methods Women who had a live single or multiple birth in Queensland, Australia, in 2010 (n 3,635) were invited to complete a retrospective self-report survey. In addition to questions about clinical and interpersonal maternity care experiences from pregnancy to postpartum, women were asked an open-ended question “Is there anything else you’d like to tell us about having your baby?” This paper describes a detailed thematic analysis of open-ended responses from a random selection of 150 women (10% of 1,510 who responded to the question). Results Four broad themes emerged relevant to improving women’s experiences of maternity care: quality of care (interpersonal and technical); access to choices and involvement in decision-making; unmet information needs; and dissatisfaction with the care environment. Some of these topics are reflected in current reform goals, while others provide evidence of the need for further reforms. Conclusions The findings reinforce the importance of some existing maternity reform objectives, and describe how these might best be met. Findings affirm the importance of information provision to enable informed choices; a goal of Queensland and national reform agendas. Improvement opportunities not currently specified in reform agendas were also identified, including the quality of interpersonal relationships between women and staff, particular unmet information needs (e.g., breastfeeding), and concerns regarding the care environment (e.g., crowding and long waiting times).