Elective surgical patients' narratives of hospitalization: The co-construction of safety

This research explores how elective surgical patients make sense of their hospitalization experiences. We explore sensemaking using longitudinal narrative interviews (n = 72) with 38 patients undergoing elective surgical procedures between June 2010 and February 2011. We consider patients' narratives, the stories they tell of their prior expectations, and subsequent post-surgery experiences of their care in a United Kingdom (UK) hospital. An emergent pre-surgery theme is that of a paradoxical position in which they choose to make themselves vulnerable by agreeing to surgery to enhance their health, this necessitating trust of clinicians (doctors and nurses). To make sense of their situation, patients draw on technical (doctors' expert knowledge and skills), bureaucratic (National Health Service as a revered institution) and ideological (hospitals as places of safety), discourses. Post-operatively, themes of ‘chaos’ and ‘suffering’ emerge from the narratives of patients whose pre-surgery expectations (and trust) have been violated. Their stories tell of unmet expectations and of inability to make shared sense of experiences with clinicians who are responsible for their care. We add to knowledge of how patients play a critical part in the co-construction of safety by demonstrating how patient–clinician intersubjectivity contributes to the type of harm that patients describe. Our results suggest that approaches to enhancing patients' safety will be limited if they fail to reflect patients' involvement in the negotiated process of healthcare. We also provide further evidence of the contribution narrative inquiry can make to patient safety.     

Learning About Dying and Living: An Applied Approach to End-of-Life Communication

The purpose of this article is to expand on prior research in end-of-life communication and death and dying communication apprehension, by developing a unique course that utilizes a hospice setting and an applied, service-learning approach. Therefore, this essay describes and discusses both students’ and my experiences over a 7-year period from 2008 through 2014. The courses taught during this time frame provided an opportunity to analyze students’ responses, experiences, and discoveries across semesters/years and cocultures. This unique, 3-credit, 14-week, service-learning, end-of-life communication course was developed to provide an opportunity for students to learn the theories related to this field of study and to apply that knowledge through volunteer experiences via interactions with dying patients and their families. The 7 years of author’s notes, plus the 91 students’ electronically submitted three reflection essays each (273 total documents) across four courses/years, served as the data for this study. According to the students, verbally in class discussions and in numerous writing assignments, this course helped lower their death and dying communication apprehension and increased their willingness to interact with hospice patients and their families. Furthermore, the students’ final research papers clearly demonstrated how utilizing a service-learning approach allowed them to apply classroom learnings and interactions with dying patients and their families at the hospice, to their analyses of end-of-life communication theories and behaviors. The results of these classes suggest that other, difficult topic courses (e.g., domestic violence, addiction, etc.) might benefit from a similar pedagogical approach.     

Other worlds and other lives: A study of occupational therapy student perceptions of cultural difference

The research described in this article was a study of 22 first year occupational therapy students at the beginning of their educational programme, ie. Bachelor of Health Science (Occupational Therapy) at the Auckland Institute of Technology. The research design was qualitative with a phenomenological orientation and utilised a semi-structured interview format. This ‘snapshot’ of occupational therapy students at the beginning of their education constitutes part of a larger, longitudinal study done in conjunction with the school of occupational therapy at the University of British Columbia, Canada. The findings from this phase of the research indicated that students' perceptions of themselves as people influenced their perceptions of cultural difference. Perhaps not surprisingly, prior learning in the shape of work experiences, friendships and travel appeared to be significant influences on the students' perceptions of individuals from differing cultural backgrounds to themselves. There is a need for occupational therapy educators to acknowledge and value the life experiences and skills of their students at entry to the programme. Similarly, issues of culture, cultural difference, race and ethnicity need to be dealt with in the context of a coherent curriculum model with context specific features. Recommendations arising from this research relate to greater articulation of the issues outlined above to students, as well as clear statements regarding the value orientation of the school/department in relation to cultural difference. This is necessary as, in the absence of this information, students are only able to work from a largely assumptive basis. The most important recommendation is that this longitudinal study continue so that more detailed data can be gathered over time that will assist in the development of a deeper understanding of how students develop knowledge and skills in working with individuals who are culturally different over he duration of their educational programme.     

Reconciling conceptualisations of the body and person‐centred care of the older person with cognitive impairment in the acute care setting

In this article, we sought reconciliation between the “body‐as‐representation” and the “body‐as‐experience,” that is, how the body is represented in discourse and how the body of older people with cognitive impairment is experienced. We identified four contemporary “technologies” and gave examples of these to show how they influence how older people with cognitive impairment are often represented in acute care settings. We argued that these technologies may be mediated further by discourses of ageism and ableism which can potentiate either the repressive or productive tendencies of these technologies resulting in either positive or negative care experiences for the older person and/or their carer, including nurses. We then provided examples from research of embodied experiences of older people with dementia and of how nurses and other professionals utilized their inter‐bodily experiences to inform acts of caring. The specificity and individuality of these experiences were more conducive to positive care experiences. We conclude the article by proposing that the act of caring is one way nurses seek to reconcile the “body‐as‐representation” with the “body‐as‐experience” to mitigate the repressive effects of negative ageism and ableism. The act of caring, we argue, is the essence of caring enacted through the provision of person‐centred care which evokes nurses to respond appropriately to the older person's “otherness,” their “variation of being” while enabling them to enact a continuation of themselves and their own version of normality.     

Grandparental love: a challenge or richness?

Grandparenthood has changed dramatically: today's grandparents are healthier than before, live longer, and are more educated than their antecedents. The purpose of this research was to find out how grandparenthood was perceived by grandparents themselves. The study comprised 12 Finnish grandparents, aged between 50 and 81, who participated in the research. The data were collected as letters and through interviews. The analysing method was data-driven qualitative content analysis. Grandparents' experiences of grandparenthood were studied by focusing on the following themes: What kinds of changes does grandparenthood introduce in life; what kinds of resources does grandparenthood provide or involve; and what kinds of challenges does grandparenthood include? Grandparenthood was divided into four types that differ from each other in their relation to the amount of resources and adaptation of changes. Grandparental love can be seen as a central virtue enriching well-being by providing grandparents with strength.     

ILLUMINATING SOCIAL DETERMINANTS OF WOMEN'S HEALTH USING GROUNDED THEORY

Emphasis in health policy has shifted from curative intervention to prevention and health promotion through personal responsibility for lifestyle choices and, most recently, to the social determination of health. These shifts draw attention to and legitimize women's health research that moves beyond biomedical, epidemiological, and subjective knowledge to question previously unquestioned societal norms and structures that influence women's health. The challenge is to avoid relying solely on population-based studies that support relationships between social determinants and indicators of women's health and to find ways to illuminate the processes by which social determinants interact with the health of specific groups of women. Without such research, our knowledge of how social factors that underpin women's health interact will be faceless and will not address the interplay of health and social policy within women's lives. One research method that may be useful for exploring the interplay between such policies and women's health is grounded theory. Grounded theory is a widely used approach in women's health research. The goal of grounded theory is the discovery of dominant social and structural processes that account for most of the variation in behavior in a particular situation. Despite the usefulness of this method for capturing the interaction between social conditions and women's health experiences, many grounded theory researchers restrict themselves to women's subjective experiences as a source of data for theory development. Consequently, the resultant theory's capacity to illuminate the effects of the social determinants of health is limited. The purpose of this article is to discuss how the grounded theory method can be used in a participatory way to theoretically sample structural conditions at many levels. Using examples from completed and ongoing women's health research where data have and have not been collected primarily from women themselves, we outline the benefits and process for using grounded theory to influence health and public policy in women's health.     

What do the children really think about a day-care centre – the 5–7-year-old Finnish children speak out

A day-care centre is a place where a child spends most of his/her week nowadays. A day-care centre as an institution of early childhood education has often been studied from the early childhood educators’ point of view or within a wider societal context. The children’s voices have not been heard much. The purpose of this article is to describe, on the one hand, the experiences that the children have of the day-care centre as a place and, on the other hand, to bring out how the children talk about their experiences. Twenty-nine Finnish day-care children (aged five to seven) are the research subjects. This study uses the existential-phenomenological method to describe children’s experiences as they appear to the children themselves. The children’s opinions on a day-care centre are an essential means for developing the day-care centre.     

Pregnancy, labor and body image in the United States

Although substantial research has been done showing how alienation (which in Ollman's terms means that "an essential tie has been cut in the middle") manifests itself in the domain of human labor, little has been done to discover how similar processes might operate in other domains. I examine women's images of their bodies while they are pregnant, using Lakoff and Johnson's method of looking for metaphors that are presupposed in our ordinary language. I uncover several central images, all of which display a marked sense of separation of self from the parts of the body, and a passive stance in which events are described as happening to rather than being brought about by the speaker. Turning to written texts, I find that the literature on childbirth (from opposite ends of the spectrum--popular literature advocating prepared childbirth on one end and obstetrical texts for medical students on the other) holds an assumption in common: that the uterus is an involuntary muscle. This is so despite evidence to the contrary cited in the texts themselves. I explore the implications of this imagery for obstetrical treatment of 'uterine inertia' and show the similarity between this imagery and ideas about women's physiology that were current in the 19th century.     

Taint: an examination of the lived experiences of stigma and its lingering effects for eight sex industry experts

As part of a larger study examining the effects of the design of the off-street sex industry on sex worker’s health and safety practices, eight sex work experts who had experience as sex workers and as advocates and service providers were interviewed to garner their community engagement expertise in shaping the research. During narrative interviews, these experts discussed how stigma influenced their personal lives and their social justice work among sex workers. Their insights into stigma are unique to the literature because our experts simultaneously confronted direct instances of stigma that were a part of their personal and professional lives, sometimes concealing their sex work histories during the course of their professional support and advocacy work. As a result of this concealment, and because of how sex workers are sometimes mistreated, experts experienced stigma vicariously (indirectly) when their own sex work histories were not apparent. As a result of these experiences, participants became proficient at managing discrediting information about themselves when in the presence of those they mistrusted. They supported sex workers through stigmatising ordeals by using knowledge gained from these intersecting direct and vicarious experiences stigma, continuously building capacity within themselves and among other sex workers to resist stigma.     

‘I didn't want to pass that on to my child,being afraid to go to the dentist': making sense of oral health through narratives of connectedness over the life course

While previous sociological research on oral health has identified the relevance of personal relationships, there is more scope to analyse the mouth through a lens of connectedness. Recent qualitative interviews with 43 older people (65+) in England and Scotland found that participants constructed relational narratives to make sense of their oral health practices. By drawing on ideas of family practices, family display and personal life, we illustrate how the mouth can be understood relationally. Participants presented their own embodied experiences as connected to the actions of their parents. Narratives also reflected how, as parents and grandparents themselves, participants tried to shape the experiences of others. In this way, oral health practices were conceptualised as being about family. This can be seen in self‐narratives that demonstrated how participants located themselves as embedded in webs of ongoing relationships. We highlight the importance of narrated practices of thinking and feeling, whereby participants imagined doing oral health, and indeed family, in different ways. We thereby demonstrate how oral health practices are constituted through family connectedness and at the same time how these practices contribute to the constitution of family. Policy should therefore pay attention to family relations when promoting improvements in oral health practices.     

Boundary setting in breast cancer research: a study of the experience of women volunteer research subjects

Drawing on a research collaboration between a group of medical physicists and social scientists, this paper aims to explore female volunteers' experiences of participating in a project for developing a new breast disease diagnostic technology using an optical imaging system. In order to understand how these women make sense of being a volunteer, we examine the complexities of their experiences in this type of research setting through an empirically-based study involving participant observation and semi-structured interviews with the volunteers. Traditionally, volunteers are constructed as passive research material. In contrast, the women in our study are by no means docile bodies — but are active in deploying strategies that create opportunities to exert a level of control over perceived threats within the research encounter. We examine how volunteers translate these threats into 'boundaries' about what is and is not acceptable or permissible within this environment, paying particular attention to boundary setting around participation, and invasions of the body (such as pain, touch and exposure, and physical safety), and exploring the strategies volunteers draw on to counter perceived threats to their bodies.     

Intimacy, domesticity and pet therapy with the elderly: Expectation and experience among nursing home volunteers

A study of volunteers in three nursing homes revealed that their role had several unexpected consequences for institutional residents and for the volunteers themselves. The research, carried out in geriatric facilities in upstate New York, focused on community members and college students working in a pet therapy program, through which they brought companion animals to various institutions on a weekly basis. Visiting people and pets re-created an aura of domesticity for residents who had been cut off from homes and families by age and illness. Consonant with this domestic perception by residents was the self-image that volunteers developed of their role: most came to see themselves as family and friends to patients rather than as visitors, strangers, or adjunct staff. Volunteering, however, was an emotionally demanding experience that some people handled more successfully than others. While certain individuals found the costs of this unexpected intimacy to be too high, others discovered significant rewards in what one person called its 'selfish altruism.' Several factors were found to mediate how volunteers felt about what they did, and whether or not they continued with their work over a long period of time. These variables included: (a) the motives that people had for becoming volunteers, (b) their prior experience doing this kind of work, (c) their career orientations, and current family and living situation, and (d) the image that they had of the elderly in general and nursing homes in particular.     

Illuminating social determinants of women's health using grounded theory

Emphasis in health policy has shifted from curative intervention to prevention and health promotion through personal responsibility for lifestyle choices and, most recently, to the social determination of health. These shifts draw attention to and legitimize women's health research that moves beyond biomedical, epidemiological, and subjective knowledge to question previously unquestioned societal norms and structures that influence women's health. The challenge is to avoid relying solely on population-based studies that support relationships between social determinants and indicators of women's health and to find ways to illuminate the processes by which social determinants interact with the health of specific groups of women. Without such research, our knowledge of how social factors that underpin women's health interact will be faceless and will not address the interplay of health and social policy within women's lives. One research method that may be useful for exploring the interplay between such policies and women's health is grounded theory. Grounded theory is a widely used approach in women's health research. The goal of grounded theory is the discovery of dominant social and structural processes that account for most of the variation in behavior in a particular situation. Despite the usefulness of this method for capturing the interaction between social conditions and women's health experiences, many grounded theory researchers restrict themselves to women's subjective experiences as a source of data for theory development. Consequently, the resultant theory's capacity to illuminate the effects of the social determinants of health is limited. The purpose of this article is to discuss how the grounded theory method can be used in a participatory way to theoretically sample structural conditions at many levels. Using examples from completed and ongoing women's health research where data have and have not been collected primarily from women themselves, we outline the benefits and process for using grounded theory to influence health and public policy in women's health.     

When Street Sex Workers Are Mothers

Many women who engage in street sex work experience pregnancies and become mothers. Unfortunately, little research has examined how their pregnancies and parenting impact themselves as street sex workers and their street sex work. In this qualitative research study, 16 mothers who were currently involved in street sex work in a Midwestern city of the United States participated in semistructured interviews. These mothers discussed how being pregnant or parenting while regularly working the street caused them to feel ashamed of themselves and their work and anxious for their own and their children's safety. Pregnancies and parenting responsibilities reportedly altered their working productivity and practices. Given how frequently they had been separated from their children, they also talked about ways in which these separations resulted in them having more free time and need for drugs, which led to them increasing the amount they worked the street. It is evident from these interviews that street sex workers who are mothers have unique needs and experiences that must be considered by researchers, policy makers, and service providers.     

From ‘silent’ to ‘heard’: Professional mediation,manipulation and women's experiences of their body after an abnormal Pap smear

While there is a large body of research on cervical cancer screening, fewer studies address the experiences of women receiving abnormal Pap smear results after routine screening. Those studies highlighting such experiences tend to concentrate on resulting psychosocial distress, with an absence in the literature about women's experiences of their bodies during medical follow-up for dysplasia, and no studies were found that explore such experiences over time. In this article, we focus on bodily experiences over time during medical follow-up of an abnormal Pap smear among a group of women in Sweden. This qualitative analysis is based on interview data from a total of 30 women, and with in-depth analysis of the content of 34 transcribed interviews with nine women who were followed longitudinally. We found that medical follow-up involved an experience of both “having” and “being” a body, which changed over time. Women described a process that ranged from having a cervix that was neither felt, ‘heard’, nor seen, to having a body that became known to them first indirectly through professional mediation and later through direct experience after professional manipulation. The conceptualization of bodily boundaries appeared to change, e.g. through visualization of the previously unfamiliar cervix, pain, vaginal discharge, and bleeding, as well as linkages to the bodies of women in their extended families through the generations. Thus, bodily experiences appear to be an intrinsic part of medical follow-up of an abnormal Pap smear through which health, disease, and risks in the past, present, and future were reconceptualised.     

Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

BackgroundHow to meaningfully partner with patients as data analysts remains obscure. A process evaluation of the ‘Improving the Safety and Continuity Of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial of an intervention for improving medicines use for people living with heart failure is being conducted. The intervention includes patient held information on heart medicines and care, enhanced communication between hospital and community pharmacists, and increased engagement of community pharmacists with patient care post‐hospital discharge. ISCOMAT patients living with heart failure were interviewed about experiences with the intervention. We sought to gain insights from patients on data collected to enhance our understanding of experiences with the intervention.ObjectiveTo develop a method for involving patients as analysts of qualitative data in a process evaluation.DesignPatients and researchers co‐analysed qualitative data. A framework method was applied involving; familiarisation, coding, developing an analytical framework and interpretation. The process was facilitated through home working and a workshop with a training component.ResultsThe co‐designed framework enabled researchers to map all further patient interview data. Patients'' specialist knowledge enhanced understanding of how the ISCOMAT intervention can be best implemented.ConclusionsPatients’ unique experiences can enhance validity and rigour in data analysis through sharing their interpretations of qualitative data. The involvement process is crucial in elucidating knowledge and avoiding tokenism. As analysts, patients gain an appreciation of research processes, building trust between researchers and patients. Group dynamics and involving patients throughout the whole research process are important considerations.     

Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health?

Context: The use of the Internet for peer‐to‐peer connection has been one of its most dramatic and transformational features. Yet this is a new field with no agreement on a theoretical and methodological basis. The scientific base underpinning this activity needs strengthening, especially given the explosion of web resources that feature experiences posted by patients themselves. This review informs a National Institute for Health Research (NIHR) (UK) research program on the impact of online patients’ accounts of their experiences with health and health care, which includes the development and validation of a new e‐health impact questionnaire. Methods: We drew on realist review methods to conduct a conceptual review of literature in the social and health sciences. We developed a matrix to summarize the results, which we then distilled from a wide and diverse reading of the literature. We continued reading until we reached data saturation and then further refined the results after testing them with expert colleagues and a public user panel. Findings: We identified seven domains through which online patients’ experiences could affect health. Each has the potential for positive and negative impacts. Five of the identified domains (finding information, feeling supported, maintaining relationships with others, affecting behavior, and experiencing health services) are relatively well rehearsed, while two (learning to tell the story and visualizing disease) are less acknowledged but important features of online resources. Conclusions: The value of first‐person accounts, the appeal and memorability of stories, and the need to make contact with peers all strongly suggest that reading and hearing others’ accounts of their own experiences of health and illnesss will remain a key feature of e‐health. The act of participating in the creation of health information (e.g., through blogging and contributing to social networking on health topics) also influences patients’ experiences and has implications for our understanding of their role in their own health care management and information.     

Exploring men's and women's experiences of depression and engagement with health professionals: more similarities than differences? A qualitative interview study

Background

Shared decision-making has been advocated; however there are relatively few studies on physician preferences for, and experiences of, different styles of clinical decision-making as most research has focused on patient preferences and experiences. The objectives of this study were to determine 1) physician preferences for different styles of clinical decision-making; 2) styles of clinical decision-making physicians perceive themselves as practicing; and 3) the congruence between preferred and perceived style. In addition we sought to determine physician perceptions of the availability of time in visits, and their role in encouraging patients to look for health information.

Methods

Cross-sectional survey of a nationally representative sample of U.S. physicians.

Results

1,050 (53% response rate) physicians responded to the survey. Of these, 780 (75%) preferred to share decision-making with their patients, 142 (14%) preferred paternalism, and 118 (11%) preferred consumerism. 87% of physicians perceived themselves as practicing their preferred style. Physicians who preferred their patients to play an active role in decision-making were more likely to report encouraging patients to look for information, and to report having enough time in visits.

Conclusion

Physicians tend to perceive themselves as practicing their preferred role in clinical decision-making. The direction of the association cannot be inferred from these data; however, we suggest that interventions aimed at promoting shared decision-making need to target physicians as well as patients.     

Children's Lived Experience and their Sense of Coherence: Bodily Play in a Norwegian After-school Programme

This article is based on materials gathered from qualitative research interviews among eight-year-old and nine-year-old children participating in an after-school programme (ASP) in Oslo, and investigates how bodily play affects their sense of coherence (SOC). In line with Maurice Merleau-Ponty, children's lived experiences are regarded as layered emotions, actions and conceptions from previous bodily engagement. They bind together the living body and its environment into a coherent, personal entirety that gives meaning to new practical situations. The study is based on Aaron Antonovsky's theory of SOC. The concept of SOC expresses the extent to which an individual has a feeling of confidence in existence as comprehensible, manageable and meaningful. SOC is regarded as an important assumption for managing the world. The study shows that bodily play in the ASP has a considerable potential of promoting the children's SOC. Most of the children in the study experience their world as comprehensible, manageable and meaningful. Negative thoughts and feelings are reduced during bodily play. Play offers particularly strong opportunities for the children themselves to shape outcomes, and for being together with other children whom they know well. If a child is excluded from joint bodily play or experiences repetitive unfriendly reports, the experiences of comprehensibility and manageability are reduced, and SOC decreases. The study demonstrates the importance of pedagogical competence among ASP professionals in terms of establishing an inclusive framework that encourage and stimulate child-managed bodily play. Future training of ASP professionals should encourage an understanding of the potential of developing SOC through bodily play.