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.

Acupuncture with manual and electrical stimulation for labour pain : a longitudinal randomised controlled trial

Background: Acupuncture is commonly used to reduce pain during labour despite contradictory results. The aim of this study is to evaluate the effectiveness of acupuncture with manual stimulation and acupuncture with combined manual and electrical stimulation (electro-acupuncture) compared with standard care in reducing labour pain. Our hypothesis was that both acupuncture stimulation techniques were more effective than standard care, and that electro-acupuncture was most effective.  Methods: A longitudinal randomised controlled trial. The recruitment of participants took place at the admission to the labour ward between November 2008 and October 2011 at two Swedish hospitals. 303 nulliparous women with normal pregnancies were randomised to: 40 minutes of manual acupuncture (MA), electro-acupuncture (EA), or standard care without acupuncture (SC). Primary outcome: labour pain, assessed by Visual Analogue Scale (VAS). Secondary outcomes: relaxation, use of obstetric pain relief during labour and post-partum assessments of labour pain. The sample size calculation was based on the primary outcome and a difference of 15 mm on VAS was regarded as clinically relevant, this gave 101 in each group, including a total of 303 women.  Results: Mean estimated pain scores on VAS (SC: 69.0, MA: 66.4 and EA: 68.5), adjusted for: treatment, age, education, and time from baseline, with no interactions did not differ between the groups (SC vs MA: mean difference 2.6, 95% confidence interval [CI] -1.7-6.9 and SC vs EA: mean difference 0.6 [95% CI] -3.6-4.8). Fewer number of women in the EA group used epidural analgesia (46%) than women in the MA group (61%) and SC group (70%) (EA vs SC: odds ratio [OR] 0.35; [95% CI] 0.19-0.67).  Conclusions: Acupuncture does not reduce women's experience of labour pain, neither with manual stimulation nor with combined manual and electrical stimulation. However, fewer women in the EA group used epidural analgesia thus indicating that the effect of acupuncture with electrical stimulation may be underestimated. These findings were obtained in a context with free access to other forms of pain relief.

Nurses’ perceptions of climate and environmental issues : a qualitative study

Aim: The aim of this study was to explore nurses' perceptions of climate and environmental issues and examine how nurses perceive their role in contributing to the process of sustainable development.  Background: Climate change and its implications for human health represent an increasingly important issue for the healthcare sector. According to the International Council of Nurses Code of Ethics, nurses have a responsibility to be involved and support climate change mitigation and adaptation to protect human health.  Design: This is a descriptive, explorative qualitative study.  Methods: Nurses (n=18) were recruited from hospitals, primary care and emergency medical services; eight participated in semi-structured, in-depth individual interviews and 10 participated in two focus groups. Data were collected from April-October 2013 in Sweden; interviews were transcribed verbatim and analysed using content analysis.  Results: Two main themes were identified from the interviews: (i) an incongruence between climate and environmental issues and nurses' daily work; and (ii) public health work is regarded as a health co-benefit of climate change mitigation. While being green is not the primary task in a lifesaving, hectic and economically challenging context, nurses' perceived their profession as entailing responsibility, opportunities and a sense of individual commitment to influence the environment in a positive direction.  Conclusions: This study argues there is a need for increased awareness of issues and methods that are crucial for the healthcare sector to respond to climate change. Efforts to develop interventions should explore how nurses should be able to contribute to the healthcare sector's preparedness for and contributions to sustainable development.

'They would never receive you without a husband' : Paradoxical barriers to antenatal care scale-up in Rwanda

OBJECTIVE: to explore perspectives and experiences of antenatal care and partner involvement among women who nearly died during pregnancy ('near-miss'). DESIGN: a study guided by naturalistic inquiry was conducted, and included extended in-community participant observation, semi-structured interviews, and focus group discussions. Qualitative data were collected between March 2013 and April 2014 in Kigali, Rwanda. FINDINGS: all informants were aware of the recommendations of male involvement for HIV-testing at the first antenatal care visit. However, this recommendation was seen as a clear link in the chain of delays and led to severe consequences, especially for women without engaged partners. The overall quality of antenatal services was experienced as suboptimal, potentially missing the opportunity to provide preventive measures and essential health education intended for both parents. This seemed to contribute to women's disincentive to complete all four recommended visits and men's interest in attending to ensure their partners' reception of care. However, the participants experienced a restriction of men's access during subsequent antenatal visits, which made men feel denied to their increased involvement during pregnancy. CONCLUSIONS: 'near-miss' women and their partners face paradoxical barriers to actualise the recommended antenatal care visits. The well-intended initiative of male partner involvement counterproductively causes delays or excludes women whereas supportive men are turned away from further health consultations. Currently, the suboptimal quality of antenatal care misses the opportunity to provide health education for the expectant couple or to identify and address early signs of complications IMPLICATIONS FOR PRACTICE: these findings suggest a need for increased flexibility in the antenatal care recommendations to encourage women to attend care with or without their partner, and to create open health communication about women's and men's real needs within the context of their social situations. Supportive partners should not be denied involvement at any stage of pregnancy, but should be received only upon consent of the expectant mother.

Shared decision-making in mental health care : a user perspective on decisional needs in community-based services

BACKGROUND: Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. OBJECTIVE: The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. METHODS: Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. RESULTS: The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.

Depicting the interplay between organisational tiers in the use of a national quality registry to develop quality of care in Sweden

BACKGROUND: With a pending need to identify potential means to improved quality of care, national quality registries (NQRs) are identified as a promising route. Yet, there is limited evidence with regards to what hinders and facilitates the NQR innovation, what signifies the contexts in which NQRs are applied and drive quality improvement. Supposedly, barriers and facilitators to NQR-driven quality improvement may be found in the healthcare context, in the politico-administrative context, as well as with an NQR itself. In this study, we investigated the potential variation with regards to if and how an NQR was applied by decision-makers and users in regions and clinical settings. The aim was to depict the interplay between the clinical and the politico-administrative tiers in the use of NQRs to develop quality of care, examining an established registry on stroke care as a case study. METHODS: We interviewed 44 individuals representing the clinical and the politico-administrative settings of 4 out of 21 regions strategically chosen for including stroke units representing a variety of outcomes in the NQR on stroke (Riksstroke) and a variety of settings. The transcribed interviews were analysed by applying The Consolidated Framework for Implementation Research (CFIR). RESULTS: In two regions, decision-makers and/or administrators had initiated healthcare process projects for stroke, engaging the health professionals in the local stroke units who contributed with, for example, local data from Riksstroke. The Riksstroke data was used for identifying improvement issues, for setting goals, and asserting that the stroke units achieved an equivalent standard of care and a certain level of quality of stroke care. Meanwhile, one region had more recently initiated such a project and the fourth region had no similar collaboration across tiers. Apart from these projects, there was limited joint communication across tiers and none that included all individuals and functions engaged in quality improvement with regards to stroke care. CONCLUSIONS: If NQRs are to provide for quality improvement and learning opportunities, advances must be made in the links between the structures and processes across all organisational tiers, including decision-makers, administrators and health professionals engaged in a particular healthcare process.

Effect of facilitation of local maternal-and-newborn stakeholder groups on neonatal mortality : cluster-randomized controlled trial

BACKGROUND: Facilitation of local women's groups may reportedly reduce neonatal mortality. It is not known whether facilitation of groups composed of local health care staff and politicians can improve perinatal outcomes. We hypothesised that facilitation of local stakeholder groups would reduce neonatal mortality (primary outcome) and improve maternal, delivery, and newborn care indicators (secondary outcomes) in Quang Ninh province, Vietnam. METHODS AND FINDINGS: In a cluster-randomized design 44 communes were allocated to intervention and 46 to control. Laywomen facilitated monthly meetings during 3 years in groups composed of health care staff and key persons in the communes. A problem-solving approach was employed. Births and neonatal deaths were monitored, and interviews were performed in households of neonatal deaths and of randomly selected surviving infants. A latent period before effect is expected in this type of intervention, but this timeframe was not pre-specified. Neonatal mortality rate (NMR) from July 2008 to June 2011 was 16.5/1,000 (195 deaths per 11,818 live births) in the intervention communes and 18.4/1,000 (194 per 10,559 live births) in control communes (adjusted odds ratio [OR] 0.96 [95% CI 0.73-1.25]). There was a significant downward time trend of NMR in intervention communes (p = 0.003) but not in control communes (p = 0.184). No significant difference in NMR was observed during the first two years (July 2008 to June 2010) while the third year (July 2010 to June 2011) had significantly lower NMR in intervention arm: adjusted OR 0.51 (95% CI 0.30-0.89). Women in intervention communes more frequently attended antenatal care (adjusted OR 2.27 [95% CI 1.07-4.8]). CONCLUSIONS: A randomized facilitation intervention with local stakeholder groups composed of primary care staff and local politicians working for three years with a perinatal problem-solving approach resulted in increased attendance to antenatal care and reduced neonatal mortality after a latent period. TRIAL REGISTRATION: Current Controlled Trials ISRCTN44599712. Please see later in the article for the Editors' Summary.