This paper reports the findings of a consumer-driven investigation conducted by the Centre for Clinical Nursing Research at Epworth Hospital in conjunction with the Endometriosis Association (Victoria, Australia) aimed at identifying the information and support needs of women experiencing endometriosis. Women's experiences of endometriosis and laparoscopy were examined. A questionnaire was designed to explore women's experiences of, and informational need for, the four categories of: diagnosis of endometriosis, endometriosis, laparoscopy and managing at home. A total of 465 women who had a positive diagnosis of endometriosis, including patients at the Epworth Endometriosis Centre and members of the Endometriosis Association, were included. The data were analysed in terms of frequency of responses and themes that arose from the research. Five main themes consistently emerged from the overall analysis of the questionnaire; these included: lack of communication, no-one listens, the emotional turmoil, expressions of gratitude to the Endometriosis Association and being young and helpless. Also identified was a lack of understanding of endometriosis and laparoscopy, on behalf of both the patient and the practitioner, which has led to communication of misinformation, extended physical pain and emotional distress. Based on these findings, recommendations were made for education strategies to be focused towards increasing awareness of endometriosis and for information to be disseminated using the preferred printed format and to be made available from gynaecologists, hospitals and schools. Through consumer participation, the information obtained in this study is of benefit to all women who come in contact with endometriosis by (a) validating women's experiences of endometriosis and (b) identifying women's needs in relation to the disease.
The Australian Council on Healthcare Standards (ACHS) Evaluation and Quality Improvement Program (EQuIP) calls on healthcare organizations to increase their focus on patients by using leadership to coordinate, and continuous improvement to guide, care delivery. At a large acute care private facility in Melbourne, a program has been developed to create a 'care partnership', characterized by shared decision making, collaboration and conciliation. This program enhances patient care through the coordination of three strategies, a patient communication strategy, an evaluation strategy and a quality improvement strategy. The program has resulted in patient guided reforms such as redesign of a patient information booklet, a hospital-wide discharge planning improvement initiative and a hospital-wide strategy to improve pain management. Through the creation of a care partnership, this program helps an acute care hospital focus its services and processes on one of its key customer groups, patients.
A group of consumers of private hospital services and their carers collaborated with staff of a Melbourne private hospital and with industry representatives to develop a consumer-driven performance report on cardiac services. During the development process participating consumers identified situational and structural barriers to their right to be informed of costs, to choice and to quality care. Their growing appreciation of these barriers led them to a different perspective on performance reporting, which resulted in their redirecting the project. The consumer participants no longer wanted a performance report that provided comparative quantitative data. Instead they designed a report that outlined the structures, systems and processes the hospital had in place to address the quality and safety of services provided. In addition, consumer participants developed a decision support tool for consumers to use in navigating the private health care sector. The journey of these consumers in creating a consumer driven performance report for a private hospital service may assist those responsible for governance of Australia's health system in choosing appropriate strategies and mechanisms to enhance private hospital accountability. The situational and institutional industry barriers to choice, information and quality identified by these consumers need to be addressed before public performance reporting for private hospitals is introduced in Australia.
This paper reports the findings of a consumer‐driven investigation conducted by the Centre for Clinical Nursing Research at Epworth Hospital in conjunction with the Endometriosis Association (Victoria, Australia) aimed at identifying the information and support needs of women experiencing endometriosis. Women's experiences of endometriosis and laparoscopy were examined. A questionnaire was designed to explore women's experiences of, and informational need for, the four categories of: diagnosis of endometriosis, endometriosis, laparoscopy and managing at home. A total of 465 women who had a positive diagnosis of endometriosis, including patients at the Epworth Endometriosis Centre and members of the Endometriosis Association, were included. The data were analysed in terms of frequency of responses and themes that arose from the research. Five main themes consistently emerged from the overall analysis of the questionnaire; these included: lack of communication, no‐one listens, the emotional turmoil, expressions of gratitude to the Endometriosis Association and being young and helpless. Also identified was a lack of understanding of endometriosis and laparoscopy, on behalf of both the patient and the practitioner, which has led to communication of misinformation, extended physical pain and emotional distress. Based on these findings, recommendations were made for education strategies to be focused towards increasing awareness of endometriosis and for information to be disseminated using the preferred printed format and to be made available from gynaecologists, hospitals and schools. Through consumer participation, the information obtained in this study is of benefit to all women who come in contact with endometriosis by (a) validating women's experiences of endometriosis and (b) identifying women's needs in relation to the disease.
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