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OBJECTIVE: Adolescent engagement in decision-making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respiratory disease.METHODS: A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a tertiary hospital in the Netherlands. Data collection consisted of observations of council meetings, in-depth interviews with youth council members, and moderated group discussions. Data were analyzed using thematic analysis to explore the experiences of the council members (n = 9, aged 12-18 years, all with a chronic respiratory disease). Two-hour council meetings took place in the hospital to provide solicited and unsolicited advice to improve research and care.RESULTS: Three themes were identified as motives for adolescents to engage in an advisory council: (1) experience of fun and becoming empowered by their illness; (2) the value of peer support and contact; and (3) being able to contribute to care and research. The council's output consisted of solicited advice on information leaflets for patients, study procedures, and dietary menu options for hospitalized children. The council struggled to have their unsolicited advice heard within the hospital.CONCLUSIONS: Council members experienced engagement as beneficial at the individual, group, and organizational levels. However, meaningful youth engagement requires connectedness with, and official support from, officials at all levels within an organization.

The positive reception of Wang and Burris’ photovoice method, published in 1997, has led to a proliferation of ways in which professionals deploy photovoice in a widening range of application fields, e.g., public health, social development and phenomenological research of human experiences. A scoping review method is used to obtain an overview of current photovoice designs and of application examples in the health and safety domain. The results show a variety of method designs. Our findings indicate that all of the photovoice designs are composed from different combinations of eleven process steps. Five generic objectives cover the range of application examples found in our literature study. We therefore condensed the variety into five generic photovoice designs for: (a) communication, (b) education, (c) exploration, (d) awareness, and (e) empowerment purposes. We propose this for use in a classification system. The potential for application of these photovoice designs in safety management is illustrated by the existence of various safety related application examples. We argue that the five generic designs will facilitate the implementation and usage of photovoice as a tool. We recommend that both a theoretical framework and guidance are further developed. We conclude that photovoice holds potential for application in health and safety management.

Chronic obstructive and pulmonary disease (COPD) has detrimental effects on individuals with the disease. COPD causes breathlessness, morbidity and associated psychosocial distress. This study was guided by the phenomenological question what is it like to have COPD and situated in Van Manen's phenomenology of practice. Experiential material was gathered through phenomenological interviews. Four themes emerged from the lived experiences of patients living with COPD: breath as a possibility; being vigilant; fighting a losing battle; and feeling isolated from others. For patients with COPD, breathing becomes ever-present and shifts from the invisible background of daily living to the central activity around which everyday life is organised. COPD patients always monitor their own breath and scrutinise the environment on possible dangers that can affect their breathing. Whenever moving or being involved in an activity, a part of their mind is preoccupied with the breathing. Although COPD patients realise that no amount of good behaviour will matter and that the decline of their lungs is inevitable, they make every effort to take good care of their body. They anticipate and avoid triggers of breathlessness isolating them from social interactions and activities. The appearance of the body as a source of social embarrassment also has an isolating effect. This study shows that breathlessness is a constant horizon that frames the experience of COPD patients. It is a limiting factor and determines their entire life. A more profound understanding of these experiences in healthcare professionals will contribute to person-centred care for COPD patients.

An emerging body of research indicates that active arts engagement can enhance older adults’ health and experienced well-being, but scientific evidence is still fragmented. There is a research gap in understanding arts engagement grounded in a multidimensional conceptualization of the value of health and well-being from older participants’ perspectives. This Dutch nation-wide study aimed to explore the broader value of arts engagement on older people’s perceived health and well-being in 18 participatory arts-based projects (dance, music, singing, theater, visual arts, video, and spoken word) for community-dwelling older adults and those living in long term care facilities. In this study, we followed a participatory design with narrative- and arts-based inquiry. We gathered micro-narratives from older people and their (in)formal caregivers (n = 470). The findings demonstrate that arts engagement, according to participants, resulted in (1) positive feelings, (2) personal and artistic growth, and (3) increased meaningful social interactions. This study concludes that art-based practices promote older people’s experienced well-being and increase the quality of life of older people. This study emphasizes the intrinsic value of arts engagement and has implications for research and evaluation of arts engagement.

For people living with multiple sclerosis (MS), one’s own body may no longer be taken for granted but may become instead an insistent presence. In this article, we describe how the body experience of people with MS can reflect an ongoing oscillation between four experiential dimensions: bodily uncertainty, having a precious body, being a different body, and the mindful body. People with MS can become engaged in a mode of permanent bodily alertness and may demonstrate adaptive responses to their ill body. In contrast to many studies on health and illness, our study shows that the presence of the body may not necessarily result in alienation or discomfort. By focusing the attention on the body, a sense of well-being can be cultivated and the negative effects of MS only temporarily dominate experience. Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance.

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for and to matter to others since these constitute an essential aspect of being human.

Nederland is een van de koplopers op het gebied van patientenparticipatie in wetenschappelijk onderzoek. Dit heeft geresulteerd in een groot aantal studies naar randvoorwaarden en instrumenten voor betekenisvolle participatie. Bij zowel patientenorganisaties als onderzoeksinstellingen en gezondheidsfondsen bestaat nu de behoefte om die kennis bruikbaar te maken voor de praktijk. Daartoe heeft PGOsupport, een netwerkorganisatie voor de versterking en ondersteuning van patienten- en clientenorganisaties, het initiatief genomen om middels een consensusproces praktische aanbevelingen voor participatief onderzoek te ontwikkelen. Het proces bestond uit een drietal gestructureerde bijeenkomsten, ondersteund door een literatuurverkenning, survey en Delphi-methode. Er is consensus bereikt over een set van negen aanbevelingen. Deze geven patientvertegenwoordigers en onderzoekers sturing bij de besluitvorming over de wenselijkheid van participatie, de meest geschikte vorm, de kosten en de wijze van evaluatie en rapportage. Daarnaast besteden de aanbevelingen aandacht aan de werving, selectie, ondersteuning, scholing en waardering van patientvertegenwoordigers.

The rich diversity in culture and languages in the European Union is embraced. Surely multilingualism is also being promoted for economic reasons. However, only scant attention is paid to the downside of multilingual work settings. Production losses and accidents, related to language issues, appear to be ignored as a common problem requiring risk control. Simply expecting all workers to learn the local language is not feasible. Other ways are needed to avoid economic damage and personal injury. This study identifies the dangers of multilingual work settings and assesses the risks. Activities aiming to control risks are investigated and an inventory of existing best practice in industry and health care is made. Five main ways to control these risks are highlighted. They are: provision of guidance, use of a lingua franca, the reduction of illiteracy, implementing controlled readability and finally the introduction of a range of practical measures. In order to proceed with these risk controls, seven unresolv...

To the Editors: Would it be beneficial to actively involve people with a respiratory condition in identifying and setting respiratory research priorities? Research priorities are traditionally set by medical and scientific experts, and it is often argued that this should remain unchanged since it gave rise to the development of high-quality knowledge, medical innovations and the improvement of quality of life [1]. Patients are often considered subjective, knowing little about health research. Furthermore, patient involvement would cost additional time and money [1]. So why would one consider giving patients a voice in setting research priorities? Different arguments are described in a growing body of literature addressing patient participation. First, there are indications that research priorities from experts differ from those of patients [2–4]. To become more responsive to patients’ needs, it would be vital to involve patients in identifying priorities. Patients’ “experiential knowledge”, can complement scientific or medical knowledge [3, 5, 6]. Secondly, the process itself becomes more democratic [2, 5]. Furthermore, patient involvement in decision making can lead to better acceptance of these decisions and outcomes. These arguments have inspired a growing number of funding agencies, including the European Union, to involve patients in research. A pioneer in involving patients research is the Netherlands Asthma Foundation (NAF). To be more democratic, responsive to patients’ needs and to improve societal relevance of their research agenda, NAF involved in 2004, besides scientific and medical experts, people with asthma and/or COPD in setting their research agenda [7, 8]. In a facilitated process, patients articulated needs and prioritised research topics in a well-argued way. Patients did not, as was expected by some experts, just prioritise care research, social research or focus only on their …

Aim The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care. Background Literature shows that patients are beginning to develop their own voice and agenda’s with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. Methods/search strategy Information was gathered from Western countries with similar economic, societal and health-care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non-scientific publications were also included. Results The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues. Conclusions Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks.

Rationale: The role of patients with chronic lung diseases in lung research is often restricted to being study objects. However, we think that active involvement of patients in research is beneficial. In 2004 we developed an extensive method to involve patients in research policy and decision making. Patients, researchers and physicians jointly established a research agenda according to this method based on scientific state-of-the-art and patient experiences. However, we lacked a model to update and extend the research agenda based on patient experiences. Aim: To develop a brief method to update and extend the research agenda based on active patient participation. Methods: The current update and extension method includes different steps. First we developed the method. Thereafter we tested the model involving the following steps. We interviewed pulmonary scientists and physicians (n=7), and held a plenary discussion with scientists and physicians (n=20). This resulted in a research agenda according to scientists and physicians. Thirdly, we organised focus group discussions with patients with chronic lung diseases (n=31). Data from the focus group discussions were validated and prioritised using a web-based questionnaire among patients with chronic lung diseases (n=165). Subsequently the questionnaire data were analysed. The resulting data from both scientists/physicians and patients were grouped and merged into two different lists: a research agenda for asthma and COPD and a research agenda for rare lung diseases. Finally, these lists were send to all groups for a complete check and a final check on attainability to scientists and physicians. Results: The development and testing of update method was done in 5 month. All groups were actively involved. Patients were satisfied with this methodology and able to provide their perspectives. The testing showed that this method resulted in two different workable research agendas. Within each agenda the overlap between research themes given by scientists, physicians and patients was substantial with respect to basic, translational and applied research. The overlap between both agendas was also considerable. Differences were noted with respect to e.g. co-morbidities (patients) and smoking interventions (physicians and scientists), as well as disease specific research themes. Conclusion: The current model for updating and extending research priorities proved useful for eliciting research priorities from scientists, physicians and patients. Involving patient experiences identified and exemplified research areas in chronic lung diseases that were previously not the research focus in The Netherlands .

For the past several years patients have been expected to play a key role in their recovery. Self management and disease management have reached a hype status. Considering these recent trends what does this mean for the division of responsibilities between doctors and patients? What kind of role should healthcare providers play? With findings based on a qualitative research project of an innovative practice for people with Chronic Obstructive Pulmonary Disease (COPD) we reflect on these questions. In-depth interviews conducted with people with COPD, physiotherapists and a pulmonologist show that shifting responsibilities require a supportive attitude from healthcare providers and a dialogical communication between patients and professionals. Our findings show more is needed in order to motivate people with COPD to take responsibility and become co-owners in a process of recovery. The case example illustrates that people with COPD need support from fellow patients to learn to accept their disabilities. Awareness that COPD is more than just a lack of air, that mind and body interact, is a first step to investigate other potential problems and to enhance one's quality of life.