Evolving Motivations: Patients' and Caregivers' Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington's Disease Care.

Patient-centered care provision is challenging under ideal circumstances; myotonic dystrophy (DM1) and Huntington's disease (HD) are examples of chronic, progressive health conditions that may challenge its limits. If we can understand how care unfolds in these conditions, health care providers may be better equipped to address patients' needs. Constructivist grounded theory informed data collection and analysis. Fourteen patients with DM1 or HD, and 10 caregivers participated in semistructured interviews. Constant comparative analysis was used to identify themes. Participants attended clinic to seek expert information and social support. Medical management, altruism, and support provided the motivation. However, motivations evolved, with clinic becoming more important for caregivers as patients deteriorated. Clinic was conceptualized as a "safe space" to actively participate in health care and research. In the absence of disease-halting or curative treatments, participants perceived that they derived a therapeutic benefit from seeking care and from engaging in education and advocacy.

Myotonic Dystrophy and Huntington's Disease Care: "We Like to Think We're Making a Difference".

BACKGROUND: Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington's disease (HD)-chronic, progressive, and life-limiting neurological conditions-may be challenged by patients' cognitive and behavioral impairments. However, no research has explored health care providers' (HCPs') perspectives about patient-centered care provision for these patients along their disease trajectory. METHODS: Constructivist grounded theory informed the iterative data collection and analysis process. Eleven DM1 or HD HCPs participated in semistructured interviews, and three stages of coding were used to analyze their interview transcripts. Codes were collapsed into themes and categories. RESULTS: Three categories including an evolving care approach, fluid roles, and making a difference were identified. Participants described that their clinical care approach evolved depending on the patient's disease stage and caregivers' degree of involvement. HCPs described that their main goal was to provide hope to patients and caregivers through medical management, crisis prevention, support, and advocacy. Despite the lack of curative treatments, HCPs perceived that patients benefited from ongoing clinical care provided by proactive clinicians. CONCLUSIONS: Providing care for individuals with DM1 and HD is a balancing act. HCPs must strike a balance between (1) the frustrations and rewards of patient-centered care provision, (2) addressing symptoms and preventing and managing crises while focusing on patients' and caregivers' quality of life concerns, and (3) advocating for patients while addressing caregivers' needs. This raises important questions: Is patient-centered care possible for patients with cognitive decline? Does chronic neurological care need to evolve to better address patients' and caregivers' complex needs?

Hard to Swallow: A Phenomenological Exploration of the Experience of Caring for Individuals With Myotonic Dystrophy and Dysphagia.

PURPOSE: Myotonic dystrophy (DM1), a genetic, multisystemic disorder, is the most prevalent adult form of muscular dystrophy. Dysphagia is a common symptom that may be difficult to diagnose and treat and can be associated with increased morbidity and mortality. Preexisting cognitive impairment or apathy, both well described in the DM1 literature, may contribute to management challenges. Caregivers may become important for managing a family member's swallowing dysfunction. Although clinicians place great importance on swallowing difficulties, it is unknown how dysphagia impacts patients and their caregivers. Therefore, the purpose of this study was to explore the experiences of caregivers living with those with DM1and dysphagia. METHODS: An interpretive phenomenological approach was used to study the lived experience of six caregivers for individuals with DM1 and dysphagia. Audio-taped semistructured interviews were used for data collection, and data were analyzed using van Manen's steps for phenomenological analysis. FINDINGS: Despite the potential for dysphagia to cause morbidity and mortality in individuals with DM1, caregivers did not describe this as a problematic symptom. Instead, they highlighted more debilitating symptoms like fatigue or weakness and discussed the caregiving experience. Themes pertaining to participants' lived body, lived relationality, lived time, and lived space were identified. CONCLUSIONS: Healthcare providers need to balance issues of clinical concern with those that are important for individuals and their family members. Assessments of caregiver knowledge and burden at each clinic visit may be warranted.

Healthy Spaces in Meaningful Places: The Rural Church and Women's Health Promotion.

PURPOSE: The influence of place on health is beginning to be addressed in health research. Current understanding of rural places, however, remains in a state of disequilibrium, balancing between geographic and sociocultural positions. This article illuminates the significance of place for rural women's experiences of health promotion in the rural church. DESIGN: This study used a novel approach to interpretive phenomenological methodology by including the photovoice method to elicit both individual and shared experiential meanings. METHOD: Twenty-two participants took pictures, wrote in logbooks, and participated in individual and group interviews to share their experiences of health promotion in the rural church. FINDINGS: The church as a place was realized through three broad discourses: (a) an intersection of physical and geographic environments, (b) a gateway to experiential attachment and personal meaning, and (c) a connection to shared culture and beliefs. It is also suggested that place may best be interpreted with an experiential lens as it exhibits lived and felt spaces. CONCLUSIONS: Data analysis suggests that place consists of both physical and experiential realities, in addition to being a resource of culture and meaning. Implications for rural women's health promotion include fostering a deeper recognition of place-shaped experiences of health.

Strengths amidst vulnerabilities: the paradox of resistance in a mining-affected community in Guatemala.

The influence of large-scale mining on the psychosocial wellbeing and mental health of diverse Indigenous communities has attracted increased attention. In previous reports, we have discussed the influence of a gold mining operation on the health of a community in the Western highlands of Guatemala. Here, we discuss the community strengths, and acts of resistance of this community, that is, community processes that promoted mental health amidst this context. Using an anti-colonial narrative methodology that incorporated participatory action research principles, we developed a research design in collaboration with community leaders and participants. Data collection involved focus groups, individual interviews and photo-sharing with 54 men and women between the ages of 18 and 67. Data analysis was guided by iterative and ongoing conversations with participants and McCormack's narrative lenses. Study findings revealed key mechanisms and sources of resistance, including a shared cultural identity, a spiritual knowing and being, 'defending our rights, defending our territory,' and, speaking truth to power. These overlapping strengths were identified by participants as key protective factors in facing challenges and adversity. Yet ultimately, these same strengths were often the most eroded or endangered due the influence of large-scale mining operations in the region. These community strengths and acts of resistance reveal important priorities for promoting mental health and wellbeing for populations impacted by large-scale mining operations. Mental health practitioners must attend to both the strengths and parallel vulnerabilities that may be occasioned by large-scale projects of this nature.

Understanding women's health promotion and the rural church.

Many rural health resources are linked to community churches, which are often well attended, especially by rural women. We used interpretive phenomenology and the photovoice method to understand how the church influenced health promotion for rural women, whose health is often significantly compromised compared with the health of urban women. Our analysis of the data from individual interviews, group sessions, photographs, and logbooks suggested that the rural church significantly facilitated rural women's health promotion. The church supported the physical, intellectual, emotional, and spiritual health of rural women, facilitated social connectedness, and provided healthful opportunities to give and to receive. Implications included reframing religious places as health-promoting and socially inclusive places for rural women.

Gold mining on Mayan-Mam territory: social unravelling, discord and distress in the Western highlands of Guatemala.

This article examines the influence of a large-scale mining operation on the health of the community of San Miguel Ixtahuacán, Guatemala. An anti-colonial narrative approach informed by participatory action research principles was employed. Data collection included focus groups and one-on-one interviews from August to November of 2011. Over this period, we interviewed 15 Mam Mayan men and 41 women (n = 56) between the ages of 18 and 64 including health care workers, educators, spiritual leaders, agricultural workers and previous mine employees from 13 villages within the municipality. Participants' accounts pointed to community health experiences of social unravelling characterized by overlapping narratives of a climate of fear and discord and embodied expressions of distress. These findings reveal the interconnected mechanisms by which local mining operations influenced the health of the community, specifically, by introducing new threats to the safety and mental wellbeing of local residents.

Promises of peace and development: mining and violence in Guatemala.

For Indigenous peoples of Guatemala, mining is experienced within a lingering legacy of colonialism and genocide. Here, we discuss macro-level findings of a larger study, examining the lived context of a mining-affected community in Guatemala and barriers that this poses to peace. Using an anticolonial narrative methodology, guided by participatory action research principles, we interviewed 54 participants. Their accounts pointed to intersecting and ongoing forces of poverty, dispossession, gendered oppression, genocide, and global inequity were exacerbated and triggered by local mining operations. This context posed profound threats to community well-being and signals a call to action for nurses and other global actors.

The lived experience of anxiety among late adolescents during high school: an interpretive phenomenological inquiry.

PURPOSE: To gain an understanding of everyday anxiety among late adolescents during high school. DESIGN: An interpretive phenomenological approach was utilized. A purposive sample of eight males and females in late adolescence with everyday anxiety were interviewed. METHOD: Individual interviews were conducted. Data analysis was undertaken throughout the research study by utilizing a thematic analysis of text in which themes emerged to understand the lived experience of everyday anxiety among late adolescents during high school. FINDINGS: The study revealed themes reflective of the lived body in time and space and in relation with others. The three themes were (a) the embodied experience of anxiety with the subtheme of the body and mind responds; (b) feeling uncomfortable in the lived space of school with the subthemes of the lived relations of bullying, the internal/external space of isolation, and the constant pressure to perform well; and (c) life at home with the subthemes of the lived space of home, the lived relations of pressure from parents, and life will get better. CONCLUSIONS: Nurses need to provide holistic care for late adolescents experiencing everyday anxiety by focusing on healing the whole person through the unity of body, mind, emotion, spirit, and environment.

Unspoken phenomena: using the photovoice method to enrich phenomenological inquiry.

Photovoice is a powerful method that is gaining momentum in nursing research. As a relatively new method in nursing science, the situatedness of photovoice within or alongside various research methodologies in a single study remains in a stage of early development. The purpose of this paper is to discuss the photovoice method as a means to elicit phenomenological data when researching the lived experience. While the foundational bases of phenomenology and photovoice differ substantially, the argument presented in this paper suggests that the photovoice method can be successfully used in phenomenological inquiry provided that significant rigour checks are pursued. This includes reflecting upon the origins and understandings of both methodology and method to promote methodological congruency. Data collection and analysis approaches that contribute to phenomenological inquiry using the photovoice method in addition to rigour and ethical considerations are discussed. The use of data generated from photovoice in phenomenological inquiry may fill a void of understanding furnished by limitations of traditional phenomenological inquiry and of spoken language and can enhance understanding of the lived experience, which may not always be best understood by words alone.

Tensions in anti-colonial research: lessons learned by collaborating with a mining-affected indigenous community.

Community-based nurse researchers strive to develop collaborative partnerships that are meaningful to the health priorities of participants and relevant to their sociopolitical realities. Within the context of global inequity, intersecting forces of privilege and oppression inevitably shape the research process, resulting in tensions, contradictions, and challenges that must be addressed. This article has 3 purposes: to examine the political context of mining corporations, to describe common health threats and challenges faced by mining-affected communities, and to reflect on research with a mining-affected Indigenous community in Guatemala whose health and capacity for self-advocacy are impacted by a legacy of colonialism. Using an anti-colonial lens, the authors discuss 3 central tensions: community agency and community victimhood, common ground and distinct identities, and commitment to outcomes and awareness of limitations. They conclude by offering methodological suggestions for nurse researchers whose work is grounded in anti-colonial perspectives.

Contemporary treatments for psychological trauma from the perspective of peacekeepers.

The purpose of this hermeneutic phenomenological study was to examine contemporary treatment approaches for psychological trauma from the perspective ofpeacekeepers. Data were collected via audiotaped interviews with 10 contemporary peacekeepers who had been deployed to Somalia, Rwanda, or the formerYugoslavia. The participants were asked to describe their experience with various treatments for psychological trauma. Narratives from the transcribed interviews were reviewed with the participants and their comments solicited for rigour and verification of meaning. A thematic analysis of the text, conducted to examine the ways in which contemporary treatment approaches help peacekeepers to heal from trauma, revealed 3 themes: medications as helping the most, understanding what is going on, and self-healing as a journey of discovery. The embodied nature of healing from trauma among contemporary peacekeepers should not be overlooked. Studies on the efficacy of different treatment modalities for psychological trauma, including mind-body complementary therapies, are needed.

The impact of PTSD on veterans' family relationships: an interpretative phenomenological inquiry.

BACKGROUND: Although there is a significant amount of literature on veterans with PTSD, there is a limited amount of literature on the impact of PTSD on veterans' family relationships and in turn, how these relationships impact healing from trauma. There is evidence that supportive families and friends are immensely helpful to those recovering from PTSD, but how do the symptoms of PTSD impact family relationships and in turn, impact healing from trauma? OBJECTIVES: This paper examines the impact of PTSD on veterans' family relationships and the impact of these relationships on healing from trauma. DESIGN: This is a secondary analysis of a currently unpublished study on contemporary peacekeepers healing from trauma. An interpretative phenomenological approach was used as the methodological framework for the study. SETTINGS: Peacekeepers were recruited from Ontario, although they originated from all over Canada and had experienced active service in many different international locations. PARTICIPANTS: Ten contemporary peacekeepers aged 37-46 who had been deployed to Somalia, Rwanda or the former Yugoslavia were interviewed. The peacekeepers had a variety of ranks, specializations, experience, and service records. Each peacekeeper had been receiving treatment for PTSD for at least 2 years. METHODS: Data analysis followed the phenomenological method which seeks to uncover the meanings of phenomena experienced by individuals through the analysis of their descriptions. As the themes evolved for the secondary analysis, the primary researcher returned to the transcripts several times for verification of meaning and to find exemplary quotes. RESULTS: Two major themes emerged on the impact of PTSD on veterans' family relationships and how these relationships impact healing from trauma: emotional numbing and anger negatively impacts familial relationships; and emotional withdrawal from family support creates a struggle with healing from trauma. CONCLUSION: The impact of PTSD on veterans' family relationships, in particular the symptoms of emotional numbing and anger should be heeded. It is recommended that treatment for PTSD include support of the family and interpersonal skills training for military personnel suffering while healing from trauma. Future studies are needed to further explore the impact of PTSD on veterans' family relationships in order to provide the best treatment approaches.

The experience of contemporary peacekeepers healing from trauma.

This research study was an interpretive inquiry into the experience of contemporary peacekeepers healing from trauma. Ten contemporary peacekeepers were interviewed who have sought treatment from trauma resulting from deployments to Somalia, Rwanda, and the former Yugoslavia. A thematic analysis of the text was undertaken, in which themes emerged to document and understand the ways in which contemporary peacekeepers heal from trauma. Narratives from the transcribed interviews were reviewed with the participants and reflective journaling by the researcher provided further clarification of the data to understand the experience. The peacekeepers' descriptions of the situations of their bodies in time, space and relation provided a fresh way into understanding the embodied nature of healing from trauma. Three overarching themes: the centrality of brotherhood and grieving loss in the military family; the centrality of time and the body in healing from trauma; and the military response as betrayal and creating trauma from within emerged from the inquiry which will contribute to more effective practice guidelines for the care of contemporary peacekeepers healing from trauma.

Evolution of posttraumatic stress disorder and future directions.

The knowledge that trauma can cause long-term physiological and psychological problems has been recognized for centuries. Today, such suffering would be classified as the characteristic symptoms of posttraumatic stress disorder (PTSD). Nurses in all practice settings are increasingly caring for individuals suffering from military trauma, natural disasters, and interpersonal violence such as childhood sexual, physical, and emotional abuse, intimate partner violence, and collective violence. This article discusses how the diagnosis of PTSD evolved over the course of history, limitations of the PTSD diagnostic category, and additional diagnostic categories for trauma. Implications for nursing practice and future directions for research are explored.

Trauma from a global perspective.

Trauma from widespread collective violence such as genocide and ethnic cleansing has not been discussed from a global perspective. It will be argued that the Western medical model of diagnostic labeling is inadequate for understanding victims of collective violence from around the world. Phenomenology and liberation philosophy will be discussed as alternatives to understanding trauma from collective violence that move beyond the Western medical model of diagnostic labeling. The insights gained from these alternative approaches will contribute to the development of nursing education, research, and practice relevant to the health of victims of collective violence around the globe.

Whistleblowing and organizational ethics.

The purpose of this article is to discuss an external whistleblowing event that occurred after all internal whistleblowing through the hierarchy of the organization had failed. It is argued that an organization that does not support those that whistle blow because of violation of professional standards is indicative of a failure of organizational ethics. Several ways to build an ethics infrastructure that could reduce the need to resort to external whistleblowing are discussed. A relational ethics approach is presented as a way to eliminate the negative consequences of whistleblowing by fostering an interdependent moral community to address ethical concerns.

Embodiment and embodied engagement: central concerns for the nursing care of contemporary peacekeepers suffering from psychological trauma.

TOPIC: Little has been written about the importance of clinicians attending to embodiment and embodied engagement in traumatic clinical situations. By listening and responding to embodied sensations, perceptions, and feelings, embodiment and embodied engagement offer a way to understanding the experience of trauma. PURPOSE: To discuss the concepts of embodiment and embodied engagement as central concerns for the care of contemporary peacekeepers suffering from trauma. SOURCES: Review of the literature on embodiment and embodied engagement, and an exemplar case. CONCLUSIONS: Meanings associated with traumatic events can be understood through embodied approaches, such as interpretive and hermeneutic phenomenology, both for research as well as for reflective practice. The art and science of nursing needs to reinstate the embodied experiences of both the patient and the nurse providing care in order for healing to take place.