What about Using Photovoice for Health and Safety?

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.

The Value of Active Arts Engagement on Health and Well-Being of Older Adults: A Nation-Wide Participatory Study.

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.

Adolescents' experiences with patient engagement in respiratory medicine.

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.

Trapped in my lungs and fighting a losing battle. A phenomenological study of patients living with chronic obstructive and pulmonary disease.

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.

Perceptions of people with respiratory problems on physician performance evaluation-A qualitative study.

BACKGROUND: Despite increasing calls for patient and public involvement in health-care quality improvement, the question of how patient evaluations can contribute to physician learning and performance assessment has received scant attention. OBJECTIVE: The objective of this study was to explore, amid calls for patient involvement in quality assurance, patients' perspectives on their role in the evaluation of physician performance and to support physicians' learning and decision making on professional competence. DESIGN: A qualitative study based on semi-structured interviews. SETTING AND PARTICIPANTS: The study took place in a secondary care setting in the Netherlands. The authors selected 25 patients from two Dutch hospitals and through the Dutch Lung Foundation, using purposive sampling. METHODS: Data were analysed according to the principles of template analysis, based on an a priori coding framework developed from the literature about patient empowerment, feedback and performance assessment. RESULTS: The analysis unearthed three predominant patient perspectives: the proactive perspective, the restrained perspective and the outsider perspective. These perspectives differed in terms of perceived power dynamics within the doctor-patient relationship, patients' perceived ability, and willingness to provide feedback and evaluate their physician's performance. Patients' perspectives thus affected the role patients envisaged for themselves in evaluating physician performance. DISCUSSION AND CONCLUSION: Although not all patients are equally suitable or willing to be involved, patients can play a role in evaluating physician performance and continuing training through formative approaches. To involve patients successfully, it is imperative to distinguish between different patient perspectives and empower patients by ensuring a safe environment for feedback.

Development of a standard form for assessing research grant applications from the perspective of patients.

BACKGROUND: Health-research funding organizations are increasingly involving patient representatives in the assessment of grant applications. However, there is no consensus on an appropriate scope or definition of the patient perspective and the eligibility of potential patient reviewers to take on this role. The aim of our study is to develop a consensus-based template for patient reviewers to assess research grant applications from the patients' perspective. We also defined a glossary of terms and definitions to help the patient reviewers in their assessment role. METHODS: Together with members of the Dutch Association of Health Care Funds (SGF) we developed an assessment form for patient reviewers following constant comparative analysis of existing review forms, a survey among all stakeholders, testing in three pilot training sessions, and a structured consensus process. RESULTS: A small SGF working group collected and analysed 20 patient assessment forms, used by 12 health foundations and one patient organization. One systematic literature review was included. By comparing and discussing items and assessment categories in subsequent workshops, a first template form was developed. This version was electronically distributed among the members of 10 patient panels of whom 67 patient reviewers filled in the survey. A second version was then presented at a final working group meeting where consensus was reached about a template with 12 categories covering 41 items important for patients. A brochure for patient reviewers, a guide for panel coordinators and a glossary were developed to accompany future implementation of the template. CONCLUSIONS: A template for patient reviewers to assess research grant applications is now available, based on the consensus of 21 Dutch health foundations.

The Mindful Body: A Phenomenology of the Body With Multiple Sclerosis.

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.

Patient issues in health research and quality of care: an inventory and data synthesis.

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.

Dialogue for air, air for dialogue: towards shared responsibilities in COPD practice.

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.