Patient participation : what it is and what it is not

In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

Patient participation in symptom management in an acute oncology setting

Cancer and cancer treatments are associated with high symptom burden. Effective, safe and quality symptom management requires patient participation in symptom identification and treatment. This mixed methods, in depth investigation of symptom management practices uncovered patient, clinician and symptom factors that play a role in patients’ ability and willingness to participate.

Patient participation in treatment in the context of acute care

This mixed methods, case study identified key patient, clinician and environmental factors associated with hospitalised patients’ ability and willingness to participate in their recovery after cardiac surgery. Patient participation is a significant component of the processes for achieving quality and safety outcomes. The findings inform redesign of the care delivery system to facilitate participation within acute care environments.

Patient participation in quality pain management during an acute care admission

The objective of the study was to explore patient participation in the context of pain management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease. This is a single-institution study, with a case-study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including preadmission and predischarge patient interviews (n=98), naturalistic observations (n=48), and focus group interviews (n=2).

Patient participation in medication safety during an acute care admission

Background : Patient participation in medication management during hospitalization is thought to reduce medication errors and, following discharge, improve adherence and therapeutic use of medications. There is, however, limited understanding of how patients participate in their medication management while hospitalized.Objective : To explore patient participation in the context of medication management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease.Design : Single institution, case study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including pre-admission and pre-discharge patient interviews (n = 98), naturalistic observations (n = 48) and focus group interviews (n = 2).Results : All patients had changes made to their pre-operative cardiovascular medications as a consequence of surgery. More patients were able to list and state the purpose and side-effects of their cardiovascular medications at pre-admission than prior to discharge from hospital. There was very little evidence that nurses used opportunities such as medication administration times to engage patients in medication management during hospital admission.Discussion and Conclusions : Failure to engage patients in medication management and provide opportunities for patients to learn about changes to their medications has implications for the quality and safety of care patients receive in hospital and when managing their medications once discharged. To increase the opportunity for patients to participate in medication management, a fundamental shift in the way nurses currently provide care is required.

Cancer patients' perceptions of the barriers and facilitators to patient participation in symptom management during an episode of admission

BACKGROUND:: Symptoms by definition are subjective, and patients' role in their assessment and management will impact on patient outcomes; thus, symptom management is an area of acute care practice where facilitation of patient participation is vital if quality outcomes are to be achieved. OBJECTIVE:: This study originated from a large multimethod research program exploring patient participation in symptom management in an acute oncology setting. The purpose of this article is to explore patients' perceptions of the barriers and facilitators to participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients' preference for participation. METHODS:: One hundred seventy-one cancer inpatients consented and completed an interview-administered questionnaire. Patients' preference for participation was measured using the Control Preference Scale. Responses to open-ended survey questions were evaluated using content analysis. RESULTS:: Ten categories were identified in the analyses of patient perceptions of the barriers and facilitators to participating in care decisions relating to their symptoms. Patients, irrespective of their Control Preference, reported multiple barriers and facilitators to participating in their symptom management. CONCLUSIONS:: Patients overall perceived information as the most critical component of participation. Irrespective of patients' preference for participation, there were similarities in the barriers and facilitators to the operationalization of participation in the acute care setting reported. IMPLICATIONS FOR PRACTICE:: Understanding patient perceptions of barriers and facilitators of participating in symptom management has provided important insights into person and system factors in the acute care sector impacting quality patient symptom outcomes.

Patient participation in pulmonary interventions to reduce postoperative pulmonary complications following cardiac surgery.

BACKGROUND: Clinical interventions aimed at reducing the incidence of postoperative pulmonary complications necessitate patient engagement and participation in care. Patients' ability and willingness to participate in care to reduce postoperative complications is unclear. Further, nurses' facilitation of patient participation in pulmonary interventions has not been explored. OBJECTIVE: To explore patients' ability and willingness to participate in pulmonary interventions and nurses' facilitation of pulmonary interventions. DESIGN: Single institution, case study design. Multiple methods of data collection were used including preadmission (n=130) and pre-discharge (n=98) patient interviews, naturalistic observations (n=48) and nursing focus group interviews (n=2). SETTING: A cardiac surgical ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. PARTICIPANTS: One hundred and thirty patients admitted for cardiac surgery via the preadmission clinic during a 1-year period and 40 registered nurses who were part of the permanent workforce on the cardiac surgical ward. OUTCOME MEASURES: Patients' understanding of their role in pulmonary interventions and patients' preference for and reported involvement in pulmonary management. Nurses' facilitation of patients to participate in pulmonary interventions. RESULTS: Patients displayed a greater understanding of their role in pulmonary interventions after their surgical admission than they did at preadmission. While 55% of patients preferred to make decisions about deep breathing and coughing exercises, three-quarters of patients (75%) reported they made decisions about deep breathing and coughing during their surgical admission. Nurses missed opportunities to engage patients in this aspect of pulmonary management. CONCLUSIONS: Patients appear willing to take responsibility for pulmonary management in the postoperative period. Nurses could enhance patient participation in pulmonary interventions by ensuring adequate information and education is provided. Facilitation of patients' participation in their recovery is a fundamental aspect of care delivery in this context.

Patient participation in nursing care on medical wards: An integrative review

BACKGROUND: Patient participation is a way for patients to engage in their nursing care. In view of the possible link between patient participation and safety, there is a need for an updated review to assess patient participation in nursing care. OBJECTIVES: To investigate patients' and nurses' perceptions of and behaviours towards patient participation in nursing care in the context of hospital medical wards. DESIGN: Integrative review. DATA SOURCES: Three search strategies were employed in August 2013; a computerised database search of Cumulative Index of Nursing and Allied Health Literature, Cochrane Library, Medline and PsychINFO; reference lists were hand-searched; and forward citation searching was executed. REVIEW METHODS: After reviewing the studies, extracting study data and completing summary tables the methodological quality was assessed using the Mixed-Methods Assessment Tool by two reviewers. Reviewers met then to discuss discrepancies as well as the overall strengths and limitations of the studies. Discrepancies were overcome through consensus or a third reviewer adjudicated the issue. Within and across study analysis and synthesis of the findings sections was undertaken using thematic synthesis. RESULTS: Eight studies met inclusion criteria. Four themes were identified - enacting participation, challenges to participation, promoting participation and types of participation. Most studies included were conducted in Europe. The majority of studies used qualitative methodologies, with all studies sampling patients; nurses were included in three studies. Data were largely collected using self-reported perceptions; two studies included observational data. Methodological issues included a lack of reflexivity, un-validated data collection tools, sampling issues and low response rates. CONCLUSIONS: On medical wards, patients and nurses desire, perceive or enact patient participation passively. Challenging factors for patient participation include patients' willingness, nurses' approach and confusion around expectations and roles. Information-sharing was identified as an activity that promotes patient participation, suggesting nurses encourage active communication with patients in practice. Involving patients in assessment and care planning may also enhance patient participation. For education, enhancing nurses' understanding of the attributes of patient participation, as well as patient-centred care approaches may be beneficial for medical ward nurses. From here, researchers need to examine ways to overcome the barriers to patient participation; further nurse participants and observational data is required on medical wards.

A systematic review of reliable and valid tools for the measurement of patient participation in healthcare

INTRODUCTION: Patient participation in healthcare is recognised internationally as essential for consumer-centric, high-quality healthcare delivery. Its measurement as part of continuous quality improvement requires development of agreed standards and measurable indicators. AIM: This systematic review sought to identify strategies to measure patient participation in healthcare and to report their reliability and validity. In the context of this review, patient participation was constructed as shared decision-making, acknowledging the patient as having critical knowledge regarding their own health and care needs and promoting self-care/autonomy. METHODS: Following a comprehensive search, studies reporting reliability or validity of an instrument used in a healthcare setting to measure patient participation, published in English between January 2004 and March 2014 were eligible for inclusion. RESULTS: From an initial search, which identified 1582 studies, 156 studies were retrieved and screened against inclusion criteria. Thirty-three studies reporting 24 patient participation measurement tools met inclusion criteria, and were critically appraised. The majority of studies were descriptive psychometric studies using prospective, cross-sectional designs. Almost all the tools completed by patients, family caregivers, observers or more than one stakeholder focused on aspects of patient-professional communication. Few tools designed for completion by patients or family caregivers provided valid and reliable measures of patient participation. There was low correlation between many of the tools and other measures of patient satisfaction. CONCLUSION: Few reliable and valid tools for measurement of patient participation in healthcare have been recently developed. Of those reported in this review, the dyadic Observing Patient Involvement in Decision Making (dyadic-OPTION) tool presents the most promise for measuring core components of patient participation. There remains a need for further study into valid, reliable and feasible strategies for measuring patient participation as part of continuous quality improvement.

Nurses' views of patient participation in nursing care

AIMS: To explore nurses' views of patient participation in nursing care on medical wards. BACKGROUND: Nurses have frequent contact with patients, highlighting their potential role in enabling patient participation. However, some nurses' actions and attitudes act as barriers, failing to achieve core requirements of patient participation. Discovering nurses' views may assist in developing strategies to encourage patient participation in hospitals. DESIGN: Interpretive study. METHODS: Twenty nurses were recruited from four medical wards, located in two Australian hospitals. In-depth semi-structured interviews were conducted between November 2013-March 2014 and analysed using content analysis. FINDINGS: Five categories emerged from the nurses' views. The first category, acknowledging patients as partners, showed nurses respected patients as legitimate participants. In the second category, managing risk, nurses emphasized the need to monitor participation to ensure rules and patient safety were maintained. Enabling participation was the third category, which demonstrated nurses' strategies that enhanced patients' participation. The fourth category was hindering participation; encapsulating nurses' difficulty in engaging patients with certain characteristics. In the final category, realizing participation, nurses believed patients could be involved in physical activities or clinical communication. CONCLUSION: Nurses have a crucial role in promoting patient participation. Through acknowledging and enabling participation, nurses may facilitate patient participation in a range of nursing activities. The nurse's role in enacting participation is complex, having to accommodate each patient's risks and characteristics, highlighting the need for good assessment skills. Education, policy and research strategies are essential to foster nurses' pivotal role in patient participation.

Activities patients and nurses undertake to promote patient participation

PURPOSE: To describe and understand activities patients and nurses undertake to enact patient participation in nursing care. DESIGN: This observational study was conducted on two medical units at a public hospital in Australia. Twenty-eight nurse-patient dyads were observed for at least 4 hr. Data were collected from November 2013 to February 2014. METHODS: Field notes were collected and were analyzed both inductively and deductively. FINDINGS: Nurse-patient interactions promoted patient participation through dialogue and knowledge sharing. Less evident was patient involvement in planning or self-care. Nurses exerted control over patient care, which influenced the extent of patient participation. CONCLUSIONS: Patient participation appears to be difficult to enact. Nurses' controlling approach, influenced by organizational issues, was in conflict with a patient-centered approach to care. Nurse-patient communication is one aspect of patient-centered care enacted more frequently. CLINICAL RELEVANCE: Nurses may benefit from strategies at the individual and organizational level to enhance their patient-centered practices. Fostering nurses' communication may enhance patient-centered practices in hospitals.